5 ways to honor yourself and your loved one after loss

5 ways to honor yourself and your loved one after loss

Grief is often a foreign feeling for most until they are faced with it head on. When you lose a loved one, it can be hard to do much of anything, but life must go on. From the heirloom furniture passed through generations to old love notes, choices are thrust into your lap whether you are ready or not. Decisions are immense or can be something as simple as what to do about the food in your loved one’s cabinets.

For some, settling an estate and sorting through the items left behind brings closure.  For others, it can make a difficult time even worse. Here are five tips to honor your loved one and yourself during this difficult time:

 Take a moment.

After the initial loss, grief is forefront to other emotions and life feels chaotic. Advice comes from every direction whether you ask for it or not. Many will tell you to hurry through the sorting and delegating of items. Personally, I advise clients to take a moment, and a deep breath before you make hasty decisions. This will prevent future family arguments and possible regrets.

If finances and circumstances allow, give yourself a good 30 days before jumping into any major decision-making in the dissolution of your loved one’s legacy. Also, you need to use this time to move through your grief and find healing. If you push it away or ignore it, grief will manifest in disruptive and painful ways. This is your time to process it in its freshest state.

Don’t do it alone.

If your family works well together, use this time to revisit old memories. Choose what physical talismans of those memories you wish to hold onto.

If you find yourself explaining and justifying your choices to your friends or family, they are not the right ones to assist you during this time. Look for someone who is empathetic. Try to involve individuals around you that allow you to make choices without judgment.

Ideal supporters at this time are organized and show up with an open and clear mind.

Honor their memory.

Of the items you will keep or distribute to friends and family, there is likely to be a surplus of belongings that can be useful to someone not in the immediate family. Not every member of the family even wants to take your loved one’s items. But who should get these items?

Focus on local organizations. Small non-profits and thrift organizations can thrive from your donations. Make choices that feel good and honor the wishes of your loved one. Think about organizations that were important to them, and their beliefs. If they did not have a connection with any organization, what charities are important to you? Through selecting organizations that resonate with you or your loved one, the entire process can be a healing one that benefits many.

Keep track of your decisions.

Six months to a year after you dissolve your loved one’s material legacy, when the dust clears from the darkness, different individuals might inquire about particular objects. How about dad’s golf clubs? Mom’s crystal glasses?  The family photos?

This is where your helpful, empathetic friend comes into play again. Have them help you keep track of your decisions. You are then able to look back and know what decisions you made. Knowing what went where will be incredibly efficient in the long run.  List each item and assign it a number,  then add the location the item came from and who/where the item is going. This offers peace of mind, and prevents future arguments.

Take care of yourself.

This process is difficult, but you need to prioritize your needs, too. Your basic needs such as hydration, nutrition, and rest are essential during this period. You might not feel like doing much of anything, but covering the basics will preserve your future well-being and health. It is easy to be distracted by the emotions and the intimidating amount of work that lies ahead.

Sickness is common in this period, as your body responds to the grief and stress. Don’t neglect your health, job, friends, other family members and the need to grieve. Taking care of yourself not only honors you, but your loved one as well.


Laura Olivares is founder of Nothing Forgotten, Inc., which guides and manages all aspects of the downsizing or dissolution of a loved one’s material legacy.  It is the first and only after-death service that repurposes, recycles and resells up to 95% of the personal belongings back into the community.  www.nothingforgotteninc.com

My loved one isn’t a burden

My loved one isn’t a burden

The most common term for discussing the difficulties that come with supporting a loved one through a health crisis, long-term illness, or disability is “caregiver burden.” While it’s a succinct way to sum up the challenges of caregiving, of which there are many, it also sounds a little bit like the person you’re caring for is a burden.

Here’s what our community members had to say:


A burden is defined as a heavy load… care giving IS a heavy load especially when doing it alone. That does not mean that you do not love the person or choose the role, but no matter The role of caregiver IS heavy and a tough one to carry alone. – Janie

It’s a burden. It’s a gift. It’s an education. It’s growing as a person. It’s love. It’s like many things in life – complicated. It’s all the harder because these are my children. They are healthy other than their disabilities. They will most likely outlive me. I will never be free of this responsibility. – Naomi

It is love, responsibility, and heartbreaking sometimes but it has to be done and for my husband I am the one doing it. So many different emotions wrapped up in care giving, no day is the same. – Jeannie

Its a sacrifice…without doubt. You simply cant do the things you used to. Loss of career, hobbies and social life is hard. Its also an adventure. A journey into unknown territory. What makes it a burden is bureaucratic systems that are meant to support but cause additional and unnecessary stress. – Leslee

No there’s not another better word for it. Burden is authentic and a natural description. It won’t help anything to employ euphemisms.
It is also NECESSARY to call it what it is for legislation sake. You cannot solve a problem if you don’t state the problem accurately in the first place. I refuse to minimize and pretty up what this lifestyle is all about. Its the best word because it’s the truth. – Kim


It’s a no win situation. Even when you can barely muster your last ounce of willpower and energy to keep going, complaining is not an option. Even the word games in this post–can we say burden without sounding like ogres?–no. It carries a stigma.

Honestly expressing how difficult it is implies we’re not loving enough, not understanding enough, not sensitive to the plight of the loved one, who’s really suffering. So there’s no outlet.

While the rest of the world has the luxury of indulging each and every inconvenience from a splinter to a missed hair appointment we have to keep quiet about cleaning up feces, not sleeping for days on end, giving up our hopes and dreams, exhausting our financial, physical and emotional resources so it doesn’t sound like we see our loved one as a “burden.”

Caregivers are the least understood and most taken advantage of group there is. And yet we persevere. – Sylvia


Not a burden…just exhausting! I keep in mind I hope to be as blessed to have someone care for me if needed in the future. – Kimberly


I think it is the frustration of trying so hard to make sure that our LO has what they need & want and then that’s still not good enough. That is when it starts to become s burden to me. – Gabrielle

What if you are a caregiver to someone who was always difficult and mean AND abusive? To me it IS a burden but I have accepted it and am doing my best. – Patricia

This is what I think makes caregiving so hard. We are often forced by circumstances into becoming caregivers to parents who were (and are) emotionally or physically abusive. Most people don’t understand the moral dilemma of this and simply say that taking care of parents is our job. – Jessica

We need to get back to a better understanding of the definition of burden as something that is carried. It also means the capacity of something (or someone) for carrying a load. Yes, it’s a burden, and should be brought out of the realm of shame, or the expected duty of a family, and into supervised, standardized, legislated, concrete support of caregivers. – Jean

My mom refuses to allow a “stranger” to care for her, so it’s solely been me… she’s 100% a burden to me. – Tammy

I would never say, “it’s a burden” when it’s something you feel deeply in your heart to do. It’s a loving choice! But what I think is over looked is caregiver burnout. The no human can do it all by themselves and go 24/7 and not burnout. You try to the best of your ability to take care of yourself as best you can, but sometimes the demands become overwhelming and relief and respite is desperately needed. The physical, Mental, and emotional toll can lead to death in a caregiver even before those that they are caring for, None of wants to be a burden on others, it’s not in our nature, but support is desperately needed. – Johnna

Yes. It’s a burden. That’s just a fact. Lean into it and accept it all the way around. Burden does not equate to resentment and negativity. Carrying a baby to term is a burden and a joy. This is a burden and life. Just live it best you can. – Kim

I have been a long-term caregiver and it is a burden, but one I was able and glad to bear. There were better days than others, humorous times, sweet times, very difficult times, but the total of the experiences made me a better person. It also made me a very tired person emotionally and physically…that’s the “is” of caregivers. I am glad I had the opportunity to care for my mom at home til she passed. – Penny

Was it a burden for my mother when I was a sickly child in early childhood and she took care of me? No it wasn’t. Therefore, the four years that I dedicated to caring for her through her struggle with dementia were not a burden for me. Those four years “broke” me emotionally, mentally and physically but I wish to God she was still with me. – Cary

Yes. It truly can be a burden and challenging, regardless of how we re-frame it. There isn’t anything wrong with admitting it either – sometimes doing so can make it easier to cope. – Kapok

I wouldn’t not do it and I’ve never regretted any of it, but the toll it took — emotionally, physically, and financially — I may never recover from. – Jessica

It’s hard. The hardest thing I’ve ever lived through in my 62 years. I wouldn’t have had it any other way but I look back and have no idea how I got through it. – Valarie

It was a privilege to be a caregiver for my late husband. He had early onset Alzheimer’s disease. I feel fortunate in that I was able to honor my wedding vows in ways that a lot of people never have the chance to do. In sickness and in health. We lost everything. Was it stressful? Was I exhausted? Would I do it again? In a heartbeat! – Lauren

It is an extremely complicated, very difficult, and most exhausting task for me. I care for my dad alone. I love him very much, he has been a fantastic dad, my best friend. I feel it is the least I can do because he has done it for me, sacrificed so much. It is not a burden for me, but I understand depending on situations and relationships, it is a burden for others – I can respect that. – Eleni

It wasn’t a burden. It was however EXTREMELY difficult not only to take care of two of my parents for so long but to watch them suffer. I did everything I could to give them quality of life for as long as I could, at the suffering of my own health. But you know eventually the end comes and watching them suffer was more than I could bare. I’m glad they are both at peace now, even though I miss them so much sometimes I can’t stand it. But never a burden. I chose it. – Lacey


Having been a caregiver in one capacity or another for family members most of my life, yes, I think it’s a burden AND it’s also an incredible privilege.

As a single woman, it’s significantly negatively impacted my career and earning power, and thus my ability to save money for retirement. That terrifies me because I don’t have anyone I can turn to care for me for free. I’ll have to pay for caregivers. I don’t have children who can help support me or let me live with them. I’ll have to pay for it. Because as a society we don’t value caregiving for family members.

And then there’s the physical and emotional toll. No one likes to talk about it or hear about it, but it exists. – Jessica


I’ve always thought of it as like being the Chosen Hero. I had a duty, not a privilege, but not a burden. I was the chosen one, the hero that would be there for my brother when the world no longer wanted him.

I thought it was a good, optimistic thing. But sometimes the journey becomes really long, and the battles become really difficult. You realize that stepping up and agreeing to a prophecy can weigh heavy on you, even when you know you may just be the only one who can do it. That trying to fill the expectations of you, expectations that everyone, including yourself, have placed on you, can sometimes be impossible. And sometimes, you will want to quit, and not even know what it is that you want to quit from.

Am I tired of school? Tired of being bullied? Tired of stress at home? Tired of being responsible? Tired of being lonely? You don’t know. You just know that you’re tired. And that you’re tired a lot more than you thought you would be. – Dominique


You are not and don’t let anyone make you feel [that you’re a terrible person for being overwhelmed by caregiving]. Caregiver fatality and, worse yet, suicide is the taboo topic never covered. We live in a shaming society and that is so wrong.

I know all about being made to feel I’m a horrible person, but I have a choice, victim or advocate. I choose advocate because there are more people feeling like this who are afraid to admit it. – Jaqueline


If you’re terrible than I’m terrible too. Burdens are things we shoulder. It’s not whether you think something is a burden or not a burden, what counts is how you handle the burden. It’s really not about what we think or feel, but what we Do. – Karena

Caregiver’s Lament: Rescue Me

Caregiver’s Lament: Rescue Me

Rescue me, for an afternoon
or an hour, or a few minutes.
I no longer want someone
to come into my life
and take over all my problems
and become my hero
and the owner of my life.
I don’t want that.
I just need someone
to rescue me for a few minutes
so that I remember that it’s possible
for somebody besides me
to do some of the things I do.
So that I don’t feel
totally indispensable
to the life of someone else.
And if you would rescue me
for five minutes
and someone else would rescue me
for five minutes
then, if enough people rescued me,
I would have the strength
to rescue myself the rest of the time.
And I could be
my own hero.
 by Cynthia Rush
Caregivers – Playing a Crucial Role, Yet Held in Low Esteem

Caregivers – Playing a Crucial Role, Yet Held in Low Esteem

Though it has many settings, and spans many decades, my new novel, Women Within, takes place primarily in a retirement home. The three main characters in the book, a ninety-four-year-old woman who slips back and forth through the years of her life, and her two aides, drive the plot.

I wanted to write a novel about the female experience. That meant addressing a lot of challenging issues like sexual assault; a woman’s status compared to a man’s (always lower); being an unwed mother; the impossible standards of the ideal female body that no one can really meet. These themes are woven throughout the book, along with another that at first I didn’t specifically identify.

In Women Within, this particular subtext is caregiving. The old lady awash in the past is Constance Maynard, a retired professor of history. Eunice Fitch, a fifty-something recluse with a big heart, has been taking care of people since she was a teenager. Her need to coddle, cosset, and even pamper is great on the job, but when it comes to relations with men, it’s a disaster. She enables brutes and swindlers without even realizing it. That’s her personal subtext—the downside of being too willing to soothe.

Eunice’s partner on her daily rounds is Sam (formerly Samantha) Clark whose big hands and strong muscles make her an ideal worker. Though only in her twenties, Sam, too, has done her share of caregiving, primarily to her damaged mother, protecting her in what she will soon learn has always been a vicious lie, a concoction about how Sam came into the world.

These women are poorly paid, almost as invisible as their charges. Maybe it’s because their work requires no special training, just a certain nuanced sensitivity about what people need, which can’t really be taught. Maybe it’s because they don’t generate income or profits for their employers. A retirement home makes its money from its residents, and while they state a commitment to a certain level of quality care, presumably ensured by people like Eunice and Sam, that standard is often goes unmet.

I speak from personal experience. My father spent his final years in a retirement community that was touted as having exquisite amenities. He wasn’t mistreated, but nor was he nurtured. He was sustained. As his interest in life declined, as he disconnected from people, the interest shown him also seemed to wane. Human psychology no doubt suggests that one is likely to be more engaged with someone who shows a reciprocal interest. That said, would not that engagement be encouraged with a bigger paycheck?

Caring for young children requires a great deal of engagement, too, which I suspect most people bring to that job, but those folks earn pretty little. Again, the problem seems to be the idea of generating income. Teaching a child the alphabet, or the basics of proper behavior and courtesy towards others is essential, but doesn’t generate income the way writing a computer code might, or selling a house in a hot market. This is short-sighted. Many studies show that children who get good quality care when young go on to be good wage earners and successful citizens. It’s a long-term commitment where kids are concerned, yet the people who nurture them outside of the home aren’t valued very much.

I’m sure much of this has to do with the fact that by and large caregivers are women. I suspect that the low status jobs that men land in, like unskilled physical labor, pay more. I could make this a point of research, of course. I could dust off my Economics degree, and polish up my MBA, and make a good, thorough study, but then where would my fictional characters be? Waiting for me to fill them in and round them out.

And that returns me to my three retirement home ladies. Before Constance goes downhill once and for all, she decides to turn her former home into a community center to help disadvantaged women. After her death, Eunice launches a home care business of her own, putting to good use everything she’s learned in over thirty years at Lindell. And Sam – well, Sam’s an interesting case. The retirement home seems to be just a step along a widening path. She comes into a little money, and decides to go back to school to study poetry. Her favorite author is Sylvia Plath, whose suicide reinforces for Sam that unhappy marriages are perilous things, even as she finds herself falling in love, and preparing to take on yet another caregiving role.

I close with a plea for caregivers everywhere. Give them their due. See their value, not just in a private setting, but in our larger society. Consider where we would all be without them. Understand that not everything is purely tangible. Consider the intangible, the behind-the-scenes efforts that build character and promote empathy. Imagine what the world would be like, with more people garnering well-deserved respect for the service they perform every day for another human being.

Anne Leigh Parrish

What caregivers want more of

What caregivers want more of

 

Free Time

Time with my mom. I lost her a week ago. – Lisa

Wish we could just stop time…To watch my kid’s deteriorate before my eyes w/this awful muscle-wasting disease…It truly goes too fast and is heartbreaking. I wish they could have time off from their disease that still has no cure, but it doesn’t take a day off. – Jennifer

Family. I have family but I wish we were all closer to one another to help each other. So maybe I should say I wish I had more family time! My husband and I are in Hawaii and all the family is back on the mainland now. I miss my children and grand children so much. – Theresa

Hours in the day, patience, sleep, and free time for me. – Amy

Time to myself I work and been coming to the nursing home every night for my mother for the last 9 years. – Dee

Time: I actually have lots of it but it’s chopped into almost unusable, unpredictable moments. Then cash with enough of which I can buy more time. Then…well you know… – Patrick

TIME FOR MYSELF!! And I don’t mean time that I can sit down and still be doing other things like filling out forms, etc. I mean doing what I want to do for the sole benefit of ME. It’s very rare I have that opportunity. I’m always doing something for someone. – Danielle

More time with my husband before ALZ completely steals him away. – Kimberly

Time alone with my husband – we need to get away once in awhile. – Valerie

I wish I had had more time with my husband before Alzheimer’s took him from me. – Joy

Time and energy! As well as for other to have more compassion and empathy towards those who are ill and those whom are their care givers. – Jessica

Time with friends and family to share fun times together. – Kathy

Financial & Practical Support

Cash…Then I could get things DONE! After all that is finished, I’d take some time off and get away…a little vacation maybe? – Donna

A sitter for my elderly dad so I can go visit my husband in the nursing home. – Judy

it’s hard not being able to work and need so many things…it would make the process much easier not having to worry about health and bills. – Venus

Programs where we live…we live in Dothan AL and because my daughter is not mentally challenged there is NOTHING at all that she qualifies for…she literally spends all day every day on her tablet…its so sad! – Laura

Money! Enough to take the pressure off and to feel secure (in so far as that’s possible) every time the car breaks down and the rent goes up and the supplies go up in price and my health implodes, etc. The PTSD aspect of waiting for the other shoe to drop and blow everything out of the water is humungous! – Ryoko

Time! Money! Benefits! Never enough time to work and spend time with the kids. Not enough money to buy things we need and Bette health insurance, maybe a retirement package – Tiffany

Better health and money so I could take better care of my husband. – Mary

Finding ppl that REALLY want to help my mom to receive soc. sec & medicaid (Kancare) more time w/my kids & husband. Money to buy a house & a car to take my mom back in forth to Dr.’s & chemo therapy appts. – Susanna

Money. With more money my husband wouldn’t have to work all week and most weekends. We could do more things together, travel, date night with a babysitter or two, but our own home, better/more reliable vehicles and a wheelchair lift van, all the equipment or modifications that my son needs it simply could use to make things easier. So many things. – Amber

Money! So I could provide whatever my Mother needs to recover as much as possible from the 4 major strokes she’s had. Insurance doesn’t do nearly enough. And it’s a constant battle to get them to cover the few things they do cover. It’s depressing. – Lisa

Money. You can’t have too much money when dealing with serious illness and caregiving issues. Everyone’s quality of life improves with increased financial support. – Kim

Joy & Resilience

Days feeling well enough to do something. – Cheryl

“Good” days where my husband and i can go do little things..like breakfast…to the beach. Money is great, but without health its nothing. – Ashley

Love…for my mum to have more ‘loving’ visitors and…love…for me – its no fun being a carer and single too. Be nice to get a cuddle from someone occasionally. – Joanna

Help, energy, patience, and more of myself. – Janie

Peace of mind…I worry about my clients when I am not there. I worry that they are not eating properly. – Michele

Sleep

Sleep. Patience. (kind of go hand in hand). Support. Respect. And my own private island. – Kimberly

Energy!!!! I am so-o-o tired! I am a caregiver and can hardly keep going. Feel guilty for what I can’t do. – Phyllis

Community Support

Back when I was caregiving, before my husband died, I wished I had support more than anything. I felt so absolutely alone. Sleep was the second thing I wished for and it was so hard to come by. – Sabrina

Friends that really cared…even just to ask me over for a cup of coffee. – Judy

True friends, I’ve got rid of all my friends. You cannot come in my house and disrespect me. – Cindy

Respect

I wish people would stop taking advantage of my handicapped daughter! Also that healthy people would stop staring at her. She became a quadriplegic 6 years ago & I’m pretty sure most people have seen a handicapped person in a wheelchair before. People can be so rude, they forget that they could accidentally end up in her position! – Patricia


Some responses have been edited slightly. You can see the original responses here.

What’s your best caregiving trick?

What’s your best caregiving trick?

Caregivers are an incredibly innovative bunch. We come up with all sorts of unique solutions to problems. A few members of our community shared their favorite tips and tricks to make caregiving easier.

Have one to add? Put it in the comments below.

Give them choices

Whenever possible, let your loved one choose between two options. “Do you want your bath now or in an hour?” Caregiving, in some situations, is what you are GIVING to the patient, not DOING to the patient. Choices, where possible, also provide for dignity and some level of autonomy for those who otherwise have very little. – Virginia B

Keep diaper mess to a minimum

The best thing I did for myself while caring for my husband who had to wear diaper’s for the last 6 month’s of so pertains to the diapers and clean up clothes. When I took his diaper off I had a one gallon zip lock bag and it went directly from my hand to the bag and was zipped immediately. Af for the wipes, I put them in a smaller zip lock bag the same way. None of these were ever laid down, straight from him to the bag’s and zipped. Everyone said they had never been in a house before where under the same circumstances there was at least a slight smell. I changed him as soon as he was soiled and never let him lay in anything but a clean diaper. – Barbara N

I purchased a diaper Genie it the baby section. It’s easy to move next to the bed and swallows to odors and all soiled items including the chucks. – Ronda B

Have a go bag

I keep an updated list of hubby’s meds on my phone; I’ve always got it with me so it’s never a problem if it’s needed spur of the moment. I also keep a “go bag” in my van so if we have to go to the hospital suddenly I’m ready… I’ve got it stocked with snacks, water, phone chargers, etc. – Maria E

Create the tools and systems you need

Our son is non-verbal and due to multiple disabilities he can’t operate a communication devise….we use a calendar and sticky notes to help him help US get back to ideas he had. Example: he uses eye gaze to tell us he wants to watch a movie, but it’s time to take him to his day program…. on the sticky note I write, “Robert wants to watch a movie when he gets home” and I stick it on his calendar. When he gets home he uses eye gaze towards his calendar and “reminds” me about our plan….before this simple system he would get frantic that we would forget and feel frustrated and misunderstood. This has transformed our days. – Mary T

Google. Google calendar, Google docs, Google tasks, Google reminders, Google maps. Need to keep up with someone else’s appointments or share appointments with someone else? Create a second (3rd, 4th,…20th) calendar and share. Need to manage medication lists, contact sheets, etc.? Google docs. Portable and shareable grocery and/or task list? Google Tasks. Need to remember to stop by the store, pick up prescriptions, or call someone back? Google reminders. Need directions? Google maps.

“OK Google.” Turning on this little charmer on your Android cellphone is a great time saver. “OK Google…. Create a new appointment with Dr. Doe for February 23, 2018, at 9am.” “OK Google…remind me to stop at CVS.” “OK Google…remind me to call the bank tomorrow afternoon.” “OK Google…remind me in 45 minutes to remove the casserole from the oven.” – Joseph A

Use a little distraction

Subtle feeding trick: when offering a bite, don’t ask “are you ready” or “another bite?” Say something c completely unrelated. For example, “wasn’t today beautiful day? “And as they start thinking, raise the spoon to their mouth and automatic reaction will be to Open their mouth. I’ve had great success with this Little trick. Clearly, you want to be careful that the person is a good swallower, and of course there’s no guarantee what happens to the food once it’s inside their mouth especially if you have a spitter. – Steven R

Roll with the rules of their world

As a dementia caregiver for many years, one of the biggest things I learned was to enter their reality. No matter what weird things come out of their mouths, just agree with them and roll with it. For one thing, if they feel they are being listened to and understood, they are far more likely to be agreeable with what you want them to do. And for another, it takes you on some interesting journeys. My favorite example: Sitting with my dad by our large picture window that looked out over our cul-de-sac. He was watching the ships come into the harbor, so happy. I pulled up a chair beside him and put my head on his shoulder and watched the ships come into the harbor, too. One of the happiest memories I have with him in his final days. – Kathe P

Keep people busy

I always let my wife, who has dementia help with everything possible.
Folding laundry is her favorite.  We have a closet full of linens that looks like a 3 year old done the job, as for me, I see my wife doing something to keep keep her mind working. – John W

Make everything fun

Humor. I try to make my wife laugh or at least smile. Just something silly I will do to lighten the mood. Sometimes it works sometimes not. She has such a beautiful smile. – Greg S

Humor. I kept her laughing and engaged in conversation about kids, grandkids, and other topics outside her hospital room. – Dennis B

Get help with moving people

Someone here I think suggested a satin pillowcase under the butt to help slide off the bed and onto a chair etc. works great and reduces aggravating bed sores. – Pam C

Use a pool noodle just under the fitted sheet and on top of mattress. Keeps one from rolling out of bed! – Susan W

Use hospital pads to turn or pull up & for accidents for someone bedridden. – Karen D

Accept limitations

Learning to set boundaries. I have learned that I am not super woman and have to say no sometimes. – CIndy H

Caregiving can be stressful, hectic and especially isolating. Reach out to friends and family if you’re sinking. A phone call helps so much, even if interrupted throughout. And biggest thing for me – no matter how bad a day is, there’s always tomorrow which holds a clean slate. Some mornings I literally envision God taking my hand and pressing a reset button. It helps. – Celia M

You can read all the responses here.

Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse

Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse

Bill Harris is blunt: For more than a year, he has been trying to help his wife die.

The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.

“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”

Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.

The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted living center in southern Oregon, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.

“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”

In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.

Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.

“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”

The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.

Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.

These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law.

Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.

That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.

“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”

But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.

Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.

Nora Harris signed an advance directive stipulating no care to prolong her life, but her husband says state law is forcing her to be spoon-fed against her stated wishes. (Jim Craven for KHN)

Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”

“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.

Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.

“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”

Lynn Rawlins, the center’s administrator, said her hands are tied.

“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”

Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.

She spoke in urgent whispers, syllables spilling out, unlinked from words.

Bill Harris put an arm around her shoulders reassuringly.

“Absolutely,” he said. “Of course.”

But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”

That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.

If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.

“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”

Bill and Nora Harris met at the San Francisco War Memorial Opera House in the early 1970s and launched a four-decade marriage that included world travel. Nora Harris was a librarian and a Virginia Woolf scholar who told family and friends she never wanted to be utterly dependent on others for care. (Jim Craven for KHN)

A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.

“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read. The bill passed the state Senate, but failed to advance.

Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.

VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.

In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.

Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.

An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of 8 on a 9-point scale.

Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.

But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.

“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”

For now, the answer in the case of Nora Harris is no.

That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.

“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.

He had planned to retire from his job at Wells Fargo bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.

Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted living center, “like a zombie,” he said.

“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.

“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Is caregiving an act of love or obligation?

Is caregiving an act of love or obligation?

We talk a lot about how fulfilling it can be to support a loved on, but we also discuss how difficult caregiving can be. Is caregiving something we’re doing out of a sense of obligation and duty, out of love for our caree, or a mix of both?

Caregiving is an obligation

Caregiving is an obligation for me. My daughter has a brain injury due to her own drug use. She’s hurtful and emotionally and mentally abusive to me and her kids that I’m also caring for. There are many days that I truly do hate her for the situation she’s put us in. My grandson will be 18 in two weeks and he’s moving out because of her, his mother. I don’t blame him at all. – DA

It was an obligation. Glad it is over now. Caring means you put your own life on hold, or try to lead two lives (and be expected to). It is not sustainable and leads to resentment. – VJ

Obligation in my case. If I don’t step up things don’t get done. It is especially hard for me because I have felt trapped throughout my life. It has never been about me. I resent that. I took care of my ex with cancer, then my daughter was diagnosed with autism and now mom has dementia. I have had to leave everything I worked so hard for because my brother can’t be bothered. – IN

I want to say both but more and more it is just obligation.
My mom makes everything so difficult with her self centered, controlling, hateful nasty attitude. Everything is a a demand to be done right now and to be done her way. My own adult children tell me it is time to tell her she has to go to a nursing home and leave her. – TK

Caregiving is an act of love

LOVE!!!! 18 years… my husband was shot in the head twice, he cannot walk, talk and eats through a g-tube. Definitely LOVE. Before his BI he loved me like nobody in this whole world has. – JJ

It’s an honor and a privilege to take care of my wounded veteran 29 yr old beautiful daughter. She is my hero. – KP

I take care of my husband because I dearly love him. Yes I do get tired; I do miss out on some things I’d like to do. Yet I don’t resent a minute of caring for him. My daughter stays with him one day a week and I go have lunch with a friend, get a pedi or just ramble around and I’m always happy to get home to him. – RH

It is a GIFT to give back to our loved ones. OH, it is not an easy journey but once you understand “they are NOT giving you a difficult time, they are having a difficult time” You begin to find the humor and share their journey with the love and respect your loved one deserves. At times, when I was so tired, frightened and feeling I was doing everything wrong. my Mom would SMILE at me, touch my hand and fill my heart with such Love. We took the journey together and shared so many wonderful adventures, long talks and much laughter and yes, tears too. I will miss her always and thankful for our special times helping each other. Life is a Beautiful Journey. – SM

Love, absolutely!! I am so blessed that I’ve been able to bring our son into our home, after some terrible occurrences at a nursing home, and to be able to assist and encourage him to reach the amazing ability level he’s reached!!! In those very brief and fleeting moments when I feel like ‘quitting’, my husband is always here to give me the little break I need. – VM

After 14 years, there’s as much love as there ever was, but there are days when I miss dreadfully the freedom and light-heartedness of my previous self. Filial piety is no easy thing. – CB

My son is only 11 and most likely will never speak or be independent. Right now it is love. But how will I feel in twenty years? Looking for guidance and advice from folks who have been doing this for a long time. – PC

LOVE!!!! When I start to feel lonely & sad for not being able to have or experience what my friends have, I get selfish & then it kinda feels like sort of an obligation. I’m the youngest & stayed behind to take care of Mom & Dad. I gave up grad school at USC, my career, getting married & having children. – RB

Caregiving is both an act of love and an obligation

Obviously both. And when I’m so tired a burden. But love wins out. Such a rollercoaster of emotion for me. – DR

It started out as love. My dad had Alzheimer’s late stage and my mom was starting to develop it. So I moved them into my house After 10 very long years my Dad passed and now it’s just my mom. I am exhausted beyond belief with no end in sight. I love my mom but it has quickly become an obligation. – NN

In the beginning, it was all love. After 12 years of anxiety and stress, it usually feels more like an obligation. – KF

An obligation brought on by love….my husband developed a brain disease that’s deteriorating his brain. I always had promised him I would take care of him as long as I could. I struggle everyday out of love and then those days I don’t know if I can continue. He has had strokes, has seizures, has developed kidney disease, vascular disease, lung disease and now our current dilemma of skin deteriorating on his bottom. Most of the time I want to give up but then I look at him and ask myself if the roles were reversed would he? I can admit, even with the help of a home aid and nursing visits, I am tired. – TM

I love caring for people but I’m also getting burnt out. I think if I was caring for a loved one it would be different. I am at a place where I don’t want to do this anymore. – AJ

Both, as much as I love him, it does feel a obligation sometimes especially when I can’t get any me time or am so tired i could scream. – KA

Mostly love, but sometimes obligation. I love my son (18 yrs, traumatic brain injury at birth caused by doctors). I have my days where it just feels like I’m on a treadmill, doing the same thing day in, day out. Being a caregiver is one of the hardest things I’ve ever done, but the rewards far out weigh the bad days. – GG

Both…But you are motivated by love even though you get tired of being judged so harshly by outsiders and family who truly don’t have a clue. They make it feel more like a burden and obligation. Many are just jealous and expect too much out of you for them which takes away from the one you are caring for and your own self care. – JD

Depends on the day and on the mood of the person you are caring for. It’s the hardest thing I have ever done. A child is one thing but an adult who is depressed and uses anger to mask is the hardest ever. – MR

Depends on time of day, what day of the week, how tired I am, how tired hubby is, if I’ve had respite…ideally I feel the love, in reality, it’s kind of brutal, watching the love of your life fade away, doing things for him he never would’ve wanted you doing. – PS

Mostly love, occasionally obligation but I asked for this. All those prayers asking for his life to be spared, asking for healing. I never asked that God take him home n release me from this journey. The next journey scares me more, the one where I learn to live without him. – VS

Both!!!! The hardest part of being a caregiver for me is watching my husbands health deteriorate. It’s also very hard not to get resentful for being put in the position of being a caregiver. Some days I feel like running away from the responsibility of it all. But somehow I hang in there and pray for strength to get through the next day., praying that it’s not as stressful as the day before. – RH

When I was caring for my Grandma, I loved her 100% of the time but she always made it feel like an obligation. Especially when she was verbally and mentally abusive. – PB

Both, for sure. As someone else said, it largely depends on the moment. When my sister is happy and being good, it’s pure love. Grumpy days feel like pure obligation. Though even then, love plays a role in order to dig up the patience needed to handle her. – AB

I’m starting to feel resentful because it taken away so much time from my son who is leaving for college in a few weeks and my husband who I have to leave at home as well . I love my Dad but he doesn’t appreciate the struggle it is …. but I’ll keep on doing it because he’s my dad and I promised my mother . – KB

Wow such a thought provoking question… my daughter is severely disabled and has major behaviors. Lots of people ask me when I will put her in a home and honestly I can’t even imagine her not in my life or my home… I know at times I grieve my life because I have absolutely no help and feel so isolated at times, but like I said I love her so much I can’t imagine her not being here. But I also feel as a mother it is my obligation… I definitely think sometimes it depends on the day and how exhausted I am feeling in the moment. I truly wish there was more support for parents that have none… my only option is out of home placement due to her behaviors. – JT

Both. I love my son but his behavior related to his TBI makes it a challenge some days. I never thought this was he would be spending his senior year in high school. – JN

Both….my mom passed away three years ago…I cared for her for over twenty years…she was sick n suffered with diabetes..kidney dialysis foot amputation etc….list just goes on and on…my dad passed seven years ago so that left me by myself to care for her..I loved her so much and miss her everyday..but wouldn’t want her back on this earth to suffer more…but also felt obligated to care for her because she cared for me and raised me…fed me changed me took care of me when I was sick..she didn’t abandoned me because she got tired or aggravated…she always was there for me…and there was no way I was there gonna abandon her either…so I felt both love and obligation…and id do it all again….❤ – VT

Both to me as well. As mom, I feel it is my obligation to take care of my son instead of allowing others to help. But at the same time I so love taking care of my son. Not many moms have their 21 year old kid at home and I have been so blessed that I can spend so much time with him!! – DA

Love that turned into obligation. Yes, the love is still there, however resentment has started to creep in. That is when I need to wake myself up, lean on our Father and realize that I know what I was getting into. I don’t blame him for all of this…just pray that things would be better so that I can be near my only son. I encourage everyone to look for the small blessings and never give up hope! – SA

Both. Although in many ways I feel it is my calling. My career was nursing, that was my passion. I was gifted with the opportunity to formally “RETIRE” from working with a full pension effective August 1, 2014. My mom was diagnosed with Double Pneumonia August 7, 2014. I struggled with being nurse and daughter until her passing from progressive decline this April 16, 2017. I am now caregiving my dad who has cognitive impairments. Although many challenges make each day a “new normal”. I find that my love for my family is what helps me to make wiser and healthier decisions. – KB

You want it to be love and being done out of the goodness of your heart — but it is difficult to dismiss the hateful things that are said to you. – BJ


Some responses have been edited for grammar and clarity. You can read the original responses here.

Medication management for seniors

Medication management for seniors

If you help care for an aging loved one, or are advancing in age yourself, you are probably aware of the importance of medication management. As people age, they can develop multiple chronic conditions, which may require several long term prescriptions. In fact, nearly 40 percent of elderly adults living in their own homes are prescribed more than five medications. In turn, follows an increased risk of drug interactions, side effects, and accidental missing or doubling of doses. Medication management is a set of practices to prevent these events from happening. Polypharmacy, the term used to describe the usage of five or more drugs at once, can pose potential dangers for aging loved ones. Adverse drug events, or ADEs, due to negative effects of polypharmacy are to blame for 700,000 emergency room visits and 120,000 annually, resulting in $3.5 billion in medical costs across the country. Comprehensive medication management is no small task, and here are a few tips to get you started.

Courtesy of BrightStar Care

Vets bill to keep veterans choice program afloat is signed

Vets bill to keep veterans choice program afloat is signed

Donald Trump signs vets bill to keep veterans choice program afloat

President Trump on Saturday signed a bill that will pump funds into the Veterans choice program to keep it up and running, while Washington continues to fight over how best to give veterans the care they earned – but which the government has sometimes failed to deliver. Approved in the wake of the wait-list scandal that… (more…)

Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Fans ‘didn’t care if he messed up’: Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Glen Campbell’s decades-long musical career came to an end Tuesday, when the 81-year-old country music superstar died after a six-year struggle with Alzheimer’s disease. He leaves behind a sprawling songbook and one candid documentary, 2014’s “Glen Campbell … I’ll Be Me,” which follows the singer as he deals with his diagnosis and embarks upon a farewell… (more…)

When betrayal is freedom

When betrayal is freedom

For fifteen years I cared for him.

His accident was days after our engagement. My mother pulled me aside and said I could still walk away if I wanted. I knew it would be a hard road of nursing him back to health. No one knew if he’d recover or what recovery would mean. It meant putting my career on hold. Putting my family second. Putting my fiancee first in all things.

And I did. I stayed with him. For weeks in the hospital. For months of being home bound as he regained his strength.

I married a man who was still, we hoped, getting better. He has gotten stronger. Or perhaps simply better at adapting to his circumstances.

For fifteen years we lived like this. With me bearing the burden of responsibility for both of us in so many ways. With me still letting him be the man of the house. With me always putting my husband first.

I finally decided I couldn’t live like this anymore. With my identity all wrapped around his. Subsumed by his.

My nephews are in that phase where they’re obsessed with favorites. What’s my favorite food? Color? Hobby? Animal? I realized I didn’t know any of the answers for myself any more. But I knew them all for my husband.

I didn’t do anything dramatic. I decided to join the local gym and take a class once a week with some other ladies from church. To make sure we attended church together every week. To take a little time each week doing something for me, even if something else feels more important. That’s three or four hours a week for myself, after fifteen years of ignoring myself in favor of someone else.

He didn’t like it. He met someone new at church. I should have known something was wrong when he stopped trying to make excuses to not go. I was so excited when he stopped protesting, when he started getting ready on his own. I was thrilled to see people every week, feel connected to something. He felt connected to something else.

The thing is, part of me is thrilled. To be free, finally.

Sometimes the bitterness wells up in my throat. I gave so much to him and it was never enough. Does he even realize what I did for him? But I know it doesn’t matter. I know what I did. I know how much of myself I’m willing to give. And I know he would never do that for me.

It’s as if a weight has been lifted off of me. It has been, really. The weight of a man who I’ve supported all of these years.

Moving forward, I can finally support myself.

D.L.

Depression Among Heart Attack Survivors Can Be Deadly, Yet Is Often Ignored

Depression Among Heart Attack Survivors Can Be Deadly, Yet Is Often Ignored

Clyde Boyce has been hospitalized 14 times in the past four years.

Boyce, 61, survived two strokes and five operations to unblock arteries around his heart, including three procedures in which doctors propped open his blood vessels with stents. He takes 18 pills a day and gets injections every two weeks with a powerful drug to lower cholesterol.

Yet the disease that came closest to taking Boyce’s life wasn’t a heart condition. It was depression, which led him to attempt suicide twice in the year after his first surgery.

One in 5 people hospitalized for a heart attack or chest pain develop major depression — about four times the rate in the general population, according to the American Heart Association. One in 3 stroke survivors become depressed, along with up to half of those who undergo heart bypass surgery.

Heart disease patients who become depressed are twice as likely to die within the following decade as other patients, according to an unpublished study presented in March at the American College of Cardiology’s annual meeting.

Depression increased the risk of death more than any other risk factor in the study — even smoking, said lead author Heidi May, a cardiovascular epidemiologist at the Intermountain Medical Center Heart Institute in Salt Lake City.

Relatively few heart patients die from suicide.

Most often, depressed heart attack survivors die of physical causes, partly because they’re less motivated to take care of themselves and take medication as directed, said Dr. Martha Gulati, a spokeswoman for the American College of Cardiology.

People suffering from depression are also more likely to smoke but often less likely to exercise and follow a healthy diet than those who are not depressed, Gulati said.

“You may be told to change your diet, but if you’re depressed, you may think, ‘This is too overwhelming. I can’t even process this information right now,’ ” said Kim Smolderen, an assistant professor at the University of Missouri-Kansas City.

The American Heart Association has recommended that cardiologists screen all heart attack patients for depression, using a short questionnaire, since 2008.

Yet nearly a decade later, relatively few cardiologists screen patients for depression, Smolderen said. In May, she published a study in Circulation of younger heart attack survivors, most of whom were women, showing that only 42 percent of depressed heart attack patients received treatment.

Overall, only half of all Americans diagnosed with depression receive care, according to the National Institute of Mental Health.

Many cardiologists say they don’t have the time or the expertise to handle mental health care, Smolderen said. Critics note there’s little to no evidence that depression screening prevents additional heart attacks.

Yet many doctors also fail to refer patients to cardiac rehabilitation — a program of supervised exercise and education — which has been shown to both reduce depression and help prevent heart attacks and deaths, according to a 2015 study in JAMA Internal Medicine.

Although the American Heart Association strongly recommends cardiac rehab, doctors refer only 2 out of 3 heart attack survivors for the program, the study found.

A fraction of patients referred to the program — which involves three sessions a week for 12 weeks — actually show up. Due to cost and other barriers — such as long drives to hospital rehab centers — just 23 percent of patients attended one or more sessions, and 5 percent completed all 36 recommended sessions, the study found.

Cardiac rehab programs include stress management and teach relaxation techniques and coping skills similar to those used in some types of depression therapy. The programs can reduce the risks of heart attack more than standard rehab.

In a three-year study published in Circulation last year, which included heart patients ages 36 to 84, nearly half of patients who didn’t attend cardiac rehab died or had a heart attack, stroke or hospitalization due to chest pain, compared with 33 percent of those who attended rehab.

Among those whose rehab included stress management, only 18 percent suffered one of these heart-related complications, the study found.

Ignoring The Warning Signs

Boyce — who said depression sent him into rages that tested his marriage — said no one screened him for mental illness after his heart procedures, although he had suffered several debilitating depressions since adolescence.

He wasn’t prescribed antidepressants, Boyce said, until after his first suicide attempt.

“The system failed him,” said psychologist Barry Jacobs, a spokesman for the American Heart Association, when he heard Boyce’s story. “What you’re describing is not the way it’s supposed to work.”

After Boyce’s second heart procedure, he stopped taking his heart medications for five days — a move that his doctors viewed as a suicide attempt. His doctor committed him to a state psychiatric hospital for almost a week, prescribed medication and referred him to a psychiatrist.

Yet Boyce’s depression deepened as the bad health news piled up. Doctors diagnosed heart rhythm problems that required a pacemaker; congestive heart failure, caused when weakened heart muscle allows fluid to build up in the lungs; as well as asthmatic bronchitis, which affects the lungs. Boyce began to dread that he would suffer a fate similar to his mother, who died after six months in a coma, brought on by a long battle with heart disease.

A year after his first suicide attempt, Boyce tried to overdose on prescription medication. His wife found him and took him to the hospital, where doctors committed him to a psychiatric ward.

“Everything was happening so fast,” said Boyce, a former advertising executive from Murchison, Texas, who retired due to his health problems. “I was just convinced I was going to die. I thought to myself, ‘I’m going to end up on a ventilator, unconscious, just like my mother.’ ”

Boyce, 61, of Murchison, Texas, shows his smallest and largest pills — two of 18 he takes every day for various conditions. (Sarah A. Miller for KHN)

Boyce received help from a variety of sources: medication; counseling with a psychologist; a “mindfulness” stress reduction program, which borrows techniques used in meditation; and cardiac rehabilitation.

Exercise helped him feel stronger and less disabled, Boyce said.

“I do think the rehab raised my spirits … feeling like I could still do some things,” Boyce said.

What helped Boyce turn the corner, he said, was a conversation with God.

“It was the night before my third or fourth operation, and for some reason, I was sure I was not going to live through it,” Boyce said. “I said, ‘God, all I ask is that you give me one more day, and I will try to be a better man every day.’”

Boyce lost his fear of death. Although he occasionally still gets depressed, Boyce said, he’s able to manage his fears and anxieties better than in the past.

An Expensive Problem To Ignore

Cardiologists are divided about whether to screen heart patients for depression, but many primary care doctors have embraced the idea, said Dr. Ken Duckworth, medical director for the National Alliance on Mental Illness.

Both the American Academy of Family Physicians and the U.S. Preventive Services Task Force, an expert panel that advises Congress on health care, now recommend that doctors screen all adults for depression. The family physician group also singles out heart attack survivors for depression screening.

Studies increasingly suggest that the most effective care comes from addressing physical and mental health conditions together, rather than forcing frail patients to make separate trips to a variety of specialists, Duckworth said.

Successful approaches have involved “packages of care,” rather than individual services, said Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.

The team approach is key.

In an approach called collaborative care, mental health nurses or social workers serve as care managers, who reach out directly to patients, often by phone, to educate them about their disease, suggest ways to manage their depression and make sure that treatments are working, said Dr. Mary Whooley, director of cardiac rehabilitation at the San Francisco VA Health Care System.

Care managers work with primary care doctors to quickly adjust patients’ medications or other treatments as needed. They consult with a psychiatrist, often over the phone, Whooley said.

“You can’t stay home and get depressed … they won’t let you,” said Dr. Anita Everett, president of the American Psychiatric Association. “They reach out to you.”

A 2014 study in JAMA Internal Medicine found that collaborative care could be delivered over the phone. Patients in the study had blocked arteries, heart rhythm problems or heart failure.

Even on the phone, care managers “develop a trusted relationship with our patients,” said study co-author Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.

An earlier study of collaborative care, which focused on patients who had undergone bypass surgery, found that telephone care not only improved depression, quality of life and patients’ physical functioning, it saved over $2,000 a year per patient. Rollman is now studying ways to treat depression and heart failure together.

Keeping depression under control can save money if patients stay healthy and spend less time in the hospital, Rollman said.

Depression costs the U.S. more than $210 billion a year, with much of the cost coming from reduced productivity at work, according to a 2015 study.

“There are very, very few things in health care that save money,” Rollman said. “A mild decrease in depression led to a big decrease in cost.”

Officials at the University of Pittsburgh Medical Center Health Plan were impressed enough by the results to include depression screening as part of a checklist of care for patients who are sent home after a heart attack.

Medicare, the federal health insurance program for Americans age 65 and older, began paying doctors to deliver collaborative care in January. Medicare has covered depression screenings in primary care settings since 2012.

In that time, Medicare payments for depression screening have grown from $1.7 million a year to $9.5 million a year, according to a Kaiser Health News analysis. While those screenings make up a small fraction of Medicare’s annual budget of $646.2 billion, Duckworth called the services “a noteworthy trend in the right direction.”


Elizabeth Lucas contributed to this story.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Featured image courtesy of Time to Change.

Alzheimers, Loss, and What You Can Do to Help

Alzheimers, Loss, and What You Can Do to Help

Impacting roughly 5 million senior Americans, Alzheimer’s has made a name for itself in the elderly community. Little is understood about the cause of the disease and even less is known about the solution. What we do know is that it’s effects are heart-breaking.

Disrupting basic cognitive functions, altering personalities, and clouding memories, Alzheimer’s Disease is simply explained as the decline of the brain. It primarily affects the elderly age group, but it has a direct impact on the overall family lifestyle for all of those connected to a loved one diagnosed with the disease. It quickly becomes the family’s responsibility, specifically the spouse’s task, to care for the affected senior and a new set of challenges are presented almost daily as the family members learn their roles.

During an early stage of Alzheimer’s, the senior will typically need reminders to complete routine activities like eating regular meals, taking medication, managing hygiene tasks, and remembering names. As this stage progresses, the senior may struggle with incontinence as well as facial recognition. More severe stages of the disease may eventually require total care for all of their needs.  

So what happens when a senior facing Alzheimer’s Disease experiences the loss of their spouse? With such a complicated and variant diagnosis, there is no specific instruction for how every situation should be managed. But there are a few tips that will ease the process for those left to care for their loved one in the spouse’s place.

Firstly, someone will need to share the news of the passing of the spouse with the senior. The news should be offered gracefully, and presented in a manageable format that lends itself to the stage of the seniors Alzheimer’s diagnosis. The family member or caregiver responsible with this undertaking should know which triggers to avoid, and should also consider having another family member with them in the case of an unexpected, negative reaction. Grief already yields so much pain, and to a senior battling illness the news will more than likely be overwhelming. 

Emotional symptoms are at the forefront of the issue, as grief is already known for bringing a variety of emotions to the surface. But Alzheimer’s brings a few specific emotions that could be heightened during the mourning and adjustment period. Anxiety and stress are common emotions that could easily come from the confusion of missing their spouse or not recognizing a new caregiver. As for the caregiver, patience is key and they will need to find a way to share the daily responsibilities with other family members in order to relieve their own stresses and anxieties. Whether family member or hired caregiver, this person will be challenged with physical and mental oppositions.

Emotions can also quickly escalate to physical and behavioral reactions, especially where Alzheimer’s is concerned. Even without the added grief, physical aggression is common with Alzheimer’s patients. On any given day, the senior may be physically uncomfortable, experience medicinal side effects, or become overstimulated by their environments. A few tips for a caregiver to ease a rising outburst, include: conceding to an unnecessary argument, changing the topic, and speaking quietly instead of raising your voice. In emergency situations, calling for help may be necessary.

There is no doubt that the issue of Alzheimer’s and losing a spouse are two of the toughest battles a family can face. When both of these are combined, the road is even harder to walk. And yet, as the family of their beloved senior works out the difficulties associated with Alzheimer’s, they inadvertently provide an atmosphere of support that the senior really needs during their time of grief. As Alzheimer’s Disease affects your beloved senior during their time of loss, be the help they need most.

Author: Michael Longsdon (ElderFreedom.net)

How did we become professional caregivers?

How did we become professional caregivers?

A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.

The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.

So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?


At first I really want to work in the hospital. Since I was in primary then my secondary school, I made my decision to study nursing. Unfortunately, I got married when I was only sixteen.

I’ve been a good mother of seven. I went to school just to inquire some other details for my kids.

Its just so happened that I saw caregiving course. Really don’t have any ideas about it. So I enrolled the class for almost nine months. So excited to finish my class despite of all challenges, circumstances and even lack of transportation expenses.

I just gave my all just to get into the finishing line. And yes I did it!! Passed the exams!!

After a year one of my colleagues called and introduced me to her client (patient). Got my job!!

From 2009 up to present (my patient passed away 2012) they still kept me and they also allowed me to work. But I will still stay with them.

Billy Jean

I started caregiving in 2008. I went to work for a company that cared for
folks with developmental​ disabilities. It is a rough field but managed
stay for a year and a half. I decided to leave there when I realized my own
physical capabilities. I was 57 at the time.Kathy


For me becoming a caregiver came with my profession which I chose, but I think I would become a caregiver anyway.

Amanda


31 years ago I helped a lady I knew from a restaurant I worked at! Then after gaining much life experience and skill I decided to start my own company!

Rich


My mom’s first open heart surgery happened when I was 12yrs old. Became a caregiver then…. Became a live in caregiver for an elderly lady at 18. Going on 36 now and am currently on my 8th person don’t know that I’ll ever stop.

Cameo


Going to see my Grandpa in a long term facility. Then I was trained as a CNA at the same facility. Then I was trained as a nurse at another facility. I found I really enjoyed working with the elderly. I loved to listen to their stories about when they were younger. When I go see my Oma, I still love to talk to the resident’s and hear their stories about when they were younger. I had to retire completely when I was 32 due to MS.

Krissy


 

Physicians need to openly discuss medical mistakes and near misses

Physicians need to openly discuss medical mistakes and near misses

<blockquote class=”repubhubembed”><p class=”rhexcerpt”>Like many surgical problems, compartment syndrome must be recognized rapidly. Failing to do so may lead to a patient’s losing function in a limb, losing the limb altogether, and, in extreme cases, dying. A physician-in-training I work with missed it. Her error made me realize that medicine is suffering from its own largely unrecognized compartment syndrome.…<!–more–></p><style scoped>.repubhubembed{display:none;}</style></blockquote>
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Mourning the Imagined

Mourning the Imagined

I can see my father in vibrant colors. He’s got snow white hair, earthy brown skin, and a speck of light reflecting off one of the lenses of his eyeglasses. Behind it is a tiny sparkle in his eye. Except that it’s an artificial sparkle. Years ago, in his 40s, his eyesight deteriorated and he had an implant surgically placed in his eye. He’s an old man. One who still likes to cook, and who is a hero to his grandsons: My 2 sons. He’s taught them everything that he knows. They can retell all of his stories from his Air Force days, and they can imitate his heavy bristly voice. He pretends that it annoys him, but secretly he’s entertained. That’s how I imagine it would be.

My father died almost 3 months ago after a long term chronic illness. He just missed his 60th birthday. My children are too young to understand what’s happened. My 3 year old knows that something has changed in our family dynamic, but he cannot articulate what it is. In his brief but wonderful life, he’s only ever known his grandfather to be sickly, either bedridden or planted in the living room or kitchen. For a long time my father was upset because his first grandson cried when he tried to hold him, or wouldn’t go to him once he began to walk. He was crabby about it. He wasn’t the type to take rejection well. So he did the only thing he could do to get the child’s attention: he offered him snacks. They spent their time together seated across from each other at the kitchen table, eating cheese crackers and applesauce, and whatever else he had that week.

The evening before my father passed away, I ran home to tend to both of my children before returning to the nursing home where he lay dying. I was in a quiet frenzy to make sure that the evening routines were kept. Dinner, baths, bedtime story, prayers. My son found every reason to run through the kitchen noisily, disturbing every object in his path, until I realized that my husband and I had been too quiet that evening. Intuition had told my child that something was wrong, but being just shy of 3 years old, he didn’t know to ask the question, “what’s going on?” I looked him in the eyes and explained to him that his grandfather was very sick and in a hospital, and that we needed to take care of him. He looked up at me and immediately I saw in his eyes that he understood, not about dying necessarily, but that something was changing. As recently as this week, he’s asked about his grandfather. But no sooner than he asks does he catch himself and confidently say in his well rehearsed best grown up tone, “Paw Paw’s in heaven!” He knows his grandfather is gone. When we visit my mother, I sit where my father used to sit in the kitchen, across from my son, and we eat snacks.

When you love someone, you have dreams for them even though you don’t realize it. And when a caregiving journey begins, particularly for someone with a long term or incurable illness, those dreams die. And you can experience a very real sense of grief and mourning, even though the person is still alive. You mourn the imagined life, the one in which things take a “natural” course and allow you to plan our your life. You mourn the loss of that person’s contributions to the family, whether it be a special recipe, or wise counsel, or them simply being the backbone of the family unit. You’re forced to let go of how things are supposed to be, and live for the moment. You constantly think about them dying. On the difficult days, you may even ask yourself if dying would be the best thing for them. You don’t want to be without them, but you can’t stand to see them living without quality of life. You mourn the loss of parts of your own life.

My grieving process didn’t begin the night my father died. It began years ago with one hospital admission that changed the course of the lives of my entire family. I grieved for my myself, being an only child without a father. Even though I’m an adult, that still is a painful thing. Maybe adult children don’t say it enough, but we still need our parents. We need their help to navigate adulthood and even to save our asses every now and then. My father was very ill but I always knew where to find him. He was a constant in my world of otherwise fluctuating circumstances. I didn’t want to ask for his help, but if I needed it, I knew where to find him at any time of the day. Now that he’s gone, I’m hyper vigilant. The world feels less safe, less worthy of my trust. Parents are our first protectors, and when they do their jobs right, you’ll find a large void in your universe when they’re gone. I regret not being able to save him. Of course I know that it’s not my fault. But blame finds it’s way into the worst of situations.

This has been a difficult month for my family. My father has a birthday in June, and then Father’s Day was last Sunday. I called my grandfather, my father’s father, and talked to him for a little while. Since my father died, I see my grandfather as the prototype. He is the snowy haired old man that my father did not age to be. I hear my father’s voice in his. They both are great story tellers and always end with a lesson or punchline. I can see my father’s roots in my grandfather’s smile. And I can see his life in mine and in both of my sons. My youngest child, just 7 months old, looks a lot like a man who he will never know in person.

Life doesn’t always turn out the way that we imagine it will, and when it doesn’t, we will be sad, and we will feel the loss deeply within our souls. Mourning isn’t something sad that happens suddenly and concludes. It’s a steep mountain to climb. A large part of being able to cope with being a caregiver is to know that mourning the imagined life is natural. You cannot move forward or make sound decisions until you deal with the fact that your dreams for that person have died. The light is that new dreams can always be constructed. All hope isn’t lost. But we have to let go in order to move into the next phase of our journey.


By D. Southern

D. Southern is a freelance writer and the creator of Caregivers’ Village

What makes caregiving meaningful?

What makes caregiving meaningful?

We know that an easy life doesn’t necessarily make for a good life. People who feel that their life has meaning tend to be more fulfilled overall, even if their life is incredibly challenging.

Different people are driven by different things. Here’s a quick quiz you can take to see what sort of things might be the most meaningful to you. Many people find having a sense of purpose, close community ties, and helping others gives their life meaning. Of course, sometimes caregiving can pull us away from the things we found most meaningful.

Do you find your role giving care meaningful? What makes you feel that way? Has your life become more or less meaningful since you’ve started providing care?


Any meaning or purpose derived from anything I do is always contextual and enhanced or depressed by the, sort of, ‘fluid’ biology of my ‘human-ness,’ if that makes any sense. Everything day is different, and meaning varies, even with repetitive tasks.
Perhaps a little too existential here, but – you asked😜

Melissa


My life is immensely meaningful because my husband is disabled. Without my care, he would be in a nursing home. With my care, we are in a wheelchair-accessible townhome, which I built for us, and live independently. To conserve my own health, a paid caregiver comes each morning for two hours to get my husband up for the day. Our marriage is stronger than it has ever been. The fact that my husband is alive is a miracle. His aorta dissected in 2013 and he had three emergency operations. During the third one he suffered a spinal cord injury, and was told he would never walk again. Today, my husband is able to stand, stand and pivot, and walk the width of our townhome with the aid of a walker. We are grateful for every day, every hour, every moment we have together. In August we celebrate our 60th wedding anniversary. We are blessed.

Harriet


Yes, I think caregiving gives me meaning. I am not always able to change the outcome, but caregiving is showing someone you are “with them in the trenches”.

Amanda


what makes caregiving meaningful? caregivers speak out


Nothing. It is just one long slog.

Lee


Knowing no-one can care for my kids like me.

Tena


Sacrificing “self” for others. Expecting nothing in return from anyone. Knowing that you gave caring and compassion in desperate time of need. Just as Jesus would and has done.

Roy


Knowing that Mom can count on me for the best care. Yes, it’s sometimes frustrating and exhausting but she’s amazingly grateful so the love on both sides outweighs the bad days. ❤️

Doreen


 

How do you manage aggressive and challenging dementia behaviors?

How do you manage aggressive and challenging dementia behaviors?

One of the most difficult aspects of being a caregiver is having to cope with aggressive or other challenging behaviors that the person you care for exhibits. Other examples of challenging actions includes hallucinations, verbal abuse, anger, running away, taking clothes off, swearing, agitation, lack of appreciation. One of the secrets is that as a caregiver your response is a key on managing them and can influence the future reoccurrence.

The first thing to do is understand why these behaviors are occurring. The answer lies in 3 areas for people with dementia. People react in this way because of fear, confusion, and pain. They feel helpless or afraid and react to protect themselves. The first thing to do as a caregiver when these difficult behaviors erupt is take a step back and try to understand what is happening that is triggering them.

Dementia directly impacts the brain. It causes people to act in uninhibited, unfiltered ways. It directly impacts our ability to think, find words, or control feelings or what we do. It causes confusion. Take a moment and imagine what that would be like for you. It also tends to exacerbate the personality traits the person had prior to the onset of the dementia.  If you were a mean person before your diagnosis, those men traits may come out in a more intensified way as your condition worsens.

As caregivers we have to remember that people suffering from dementia still need to be respected. They want their wishes to be considered. They also want to feel they have some control over their environment. What may be surprising is sometimes they even regret these negative behaviors. They might not be able to express those feelings but it is important for caregivers to be aware they are there.

Caregivers can do some things to help manage these incidents when they occur:

  • Try to identify the cause of this behavior. Why are they reacting this way? What are they afraid of? What are they feeling? Try to make sense out of the reaction of a loved one.
  • Respond in a calm and comforting manner. Don’t argue. That will trigger more aggression. Don’t force the issue to prove you are right and they are wrong. Nobody will win that battle. Remember your body language. Smile and appear relaxed. Use direct eye contact. Be aware of the tone of your voice and the messages you are sending both conscious and unconscious.
  • Take a moment and imagine not knowing where you are. People often become combative and want to leave a place because they don’t recognize where they are. Try to gently redirect the confused person. Play a favorite song, go for a walk, take out a photo album. Use pictures or other concrete, tangible cues to help them focus and understand where they are at and why they are there. Keep your responses simple and direct. Say something to acknowledge their feelings like “I know it is confusing”, or “we can’t go now because it is very late or it is pouring rain” or whatever makes sense for you. Think about a response that will help them feel safe, cared for, and gets to the root of their fear.
  • Pay attention to patterns of behavior. Do these episodes occur at a particular time    regularly?  Some people experience sundowner syndrome where they get more confused as it gets dark.  Did something happen to trigger these episodes? What happened before they got agitated?
  • Look at the environment. Is there too much noise or stimulation? Is it too hot or too cold? Are there certain people that seem to upset the person receiving the care? Is being in a new place problematical and perhaps confusing?
  • Validate their feelings. Be understanding about what they are trying to communicate even if it is difficult to perceive. Try to collaborate rather than confront the person you are taking care of. If you overtly challenge what is being said or express doubt about it that can trigger an angry episode.
  • Become a master of distraction.  Try to use distraction as a technique to manage negative episodes and outbursts. Think about their favorite foods, hobby, music, photographs, clothing, or television show. Sometimes talking about people they like can ease the tension. Pay attention to what works and have it on stand by when a new outburst occurs.

 

This is very hard but also very important: Try to separate the person from the disease.

Dementia damages the brain and so people experiencing it are unable to control their thoughts, actions, feelings, and behavior as a result. Try not to personalize the negative interactions. Set boundaries for yourself and the person receiving care regarding physical safety. You cannot permit violent behavior that might potentially harm you or the person you are caring for. If this happens consult a physician about how to manage this issue. Take a time out for yourself if you need it. You must take care of yourself as a caregiver. That may be the most important tip of all.

Don’t Let Me Be, Forgotten

Don’t Let Me Be, Forgotten

The Art of losing isn’t hard to master, so many things seem filled with the intent to be lost that their loss is no disaster.

Lose something every day. Accept the fluster of lost door keys, an hour badly spent. The art of losing isn’t hard to master. Then practice losing farther, losing faster: places, names, and where it was you meant to travel. None of these will bring disaster.

I lost my mother’s watch, and look! My last, or next-to-last of three loved houses went. The art of losing isn’t hard to master.

I lost two cities, lovely ones. And vaster, some realms I owned, two rivers, a continent. I miss them, but it wasn’t a disaster.

Even losing you (the joking voice a gesture I love) I shan’t have lied. It’s evident the art of losing’s not too hard to master. Though it may look like (write it!) like disaster.

Elizabeth Bishop


As far back as I care to recall presently, I have been ‘lil girl, to grandmama at least. “Say your prayers ‘lil girl,” “Wash dem dishes lil girl, I don’t aim to play housekeeper all day.”

I was ‘lil girl before I began straightening the curly afro I sported in Elementary School. I was ‘lil girl when I discovered ‘lil boys who possessed parts that could replace my magical fingers. And, as you might have surmised, I am two and a half degrees later, still ‘lil girl.

I am not unique in this. That is, this is no pet name. It is not a name that is exclusive to me. All of my male cousins are ‘lil boy. Similarly, all of my female cousins are ‘lil girl. It is an ongoing joke between the lot of us, at least it was, until it wasn’t.

Yes, it was quite hysterical until we realized what it was. Grandma was only 76 years old when they brought her home. They- two patrons of Walmart who’d found her wondering around the parking lot, alone.

“But where is her car?” My mother asked, holding the front door ajar, clinging to it, to reality, normality.

“Why it must still be there,” the gentleman answered, “when we found her she only said she couldn’t remember where she was going. My wife,” he gestured towards the woman holding onto grandma’s arm, “asked for her ID and we, well, we thought it best to just get her home straightaway. “

“Yes, of course.” My mother forgot her shock and remembered her manners.

“My father had Alzheimer’s too” the woman whispered, with a wink.

My mother looked stunned. This, Alzheimer’s, hadn’t occurred to her. Grandma had been forgetting for years, but we all forgot, every now and then.

“Never mind what we thought.” The husband stuttered. Silencing his wife.

“Why yes,” The woman smiled at grandma. Patted her hand and relinquished her arm, “you just get yourself inside and get some rest.

Grandma walked obliviously through the door that was still holding onto Mama. Ma mouthed a “thank you” to the strangers, but stood in place.

I remember driving grandma’s car home from Walmart later that day, an old Mercedes Benz her deceased son bought her brand new over a decade ago. The car was one of her few cherished possessions, never mind how old it was now. She was a simple country girl, and 5 kids and countless years later, it made her feel as though she’d finally arrived.

Never mind how her son attained the car, or the dismal fact that the same streets that carried him would slurp him up and bury him in the cement. Be that as it was, she’d arrived. She’d finally arrived.

She’d bought hats in every color with the Mercedes Benz emblem imprinted boldly on them and she wore them over a crooked wig. Wore them to church to pray for her wayward son and wore them to the bank to deposit the checks his sins brought her.

A generation later, she would present one of the hats to my younger brother when he purchased his first car with stained money, it was a newer but similarly colored Mercedes Benz.

“Which one you want” she asked?

“Whichever grandma,” he answered with a chuckle as he tried on the black, white, and red hats, one after the other. “Well, if you really don’t mind, I think I like the red one best” he smiled.

“The red one then,” she laughed as she collected her remaining hats, the remnants of her youngest son, and tipped away with them slowly.

Grandma lives with my parents now, and every day she forgets. The loss of names seems trivial now, she’s lost larger things. She forgets to eat, to shower, and why she can’t drive that old Benz parked out in the grass beside our home. Even larger still, her siblings are dropping one by one, and she forgets them too.


 

“This says John Henry Ivory II” she reads the emboldened letters she’s memorized loudly. “Sunset: January twenty-fours,” she adds an s onto the number four and glares at it suspiciously. Then, “come read this ‘lil girl.”

I read her brother’s obituary aloud.

“Born in Fort Valley, Georgia.” She shakes her head at my recitation. “He was one of thirteen.” She nods affirmatively. “A farmer and a carpenter.” She nods slower this time. Leans back in the leather/cowhide chair that looks much too large for her. Stretches her right leg all the way out so that the joints in her knee can breathe.

“So how many left? Me, Ethel, Mary” she counts off her remaining siblings, one finger at a time.

I stop her. “Mary passed a few years back actually, Mary and Dot.”

“Dot,” she chuckles, “Dot prayed to pass. She didn’t wanna live past 80. Didn’t wanna smell ole age and suffer’in. Dot been pray’in that prayer for years, and God took her right in.” Grandma smiles.

As the story actually goes, Dot prayed to live at least until she was 80 after watching both of her parents die young- her mother to cancer, her father to himself. Grandma always tells the story this way, however, and these days it seems fair to let her tell it however she’d like.

“I’m not going to ask God to take me. I’m not ready for that. I wanna leave when God wants me to leave, and I might not be ready then.”

We laugh for a bit and by default circle around the deaths we’ve witnessed in our backwards family.

“You know how daddy died?”

“Suicide, yes.”

“Drowned himself, in a bucket.” This too is wrong. Her father hung himself.

“I think you have that wrong,” I suggest softly. She shakes her head in dissent. Recalls his legs shaking on both sides of the bucket, “like an animal.”

I persist in trying to make her memory logical, “did he tie something around his neck first, perhaps?”

She gets up and limps to the kitchen. “You just stay right there, “she calls. She walks and her one bad knee follows as she scavenges the kitchen looking for an exemplar. She settles for a ceramic vase that is much too thin to house a human head.

She stands before me with the vase. “Now you don’t believe me.” She looks forlorn. “Dot could’ve told you,” she snaps. I smile, disheartened, we both know the trouble is Dot is gone. Long gone, gone like a runaway slave trekking north for freedoms he may or may not receive.

I think about Dot, John Henry the first and second, and my dearest grandmother, Essie Maude Harris. And I prayDot’s prayer for her. It felt like sorcery, it felt like empathy.

As I say the prayer, I know it will not save her, just as her prayers did not save those before her, but it feels right to say it anyway. It feels right that she should go dignified, like Dot, not kicking and screaming like her father, John Henry I, legs flailing “like an animal.”

The truth is she’s already kicking and screaming, in her own way.

 


Winter 2015

“Stop, shhh” she insists. We stop our correspondence at once. It seems urgent.

“The baby is sleeping” she whispers, pushing her open palms down against the empty air as if to suppress the vibrations of our voices.

“What baby?” My mother asks.

Tipsy from our eggnog, we cackle at the question. We don’t have any babies, no babies live here.

“Now you know,” grandma throws both her hands up in the air in frustration; she’s through with us. My mother is the first to realize that in grandma’s mind, today, there is a baby. Ma strikes a deafening look in our direction and we hush up directly. Today, there is a baby.

Ma follows grandma on soft heels. Peeks her head into grandma’s bedroom. I peek over her shoulder. We don’t see much; just a cluttered room, a bed with stuffed blankets and TBN blasting from the television set.

Ma tiptoes over to the bed. Grandma’s chest rises and falls next to Ma’s lifeless wooden nutcracker. The two are wrapped tight underneath grandma’s quilt.

Today, grandma sees a baby, grandma hears a baby, we have a baby.


Fall 2016

Sometimes our baby gets out of hand. This past Thanksgiving, we learned that Alzheimer’s often leads to paranoia. The thoughts in our baby’s head get all jumbled up and she loses sight of reality.

She’s starting to see things that don’t exist. There are men watching her in her bedroom, and she must escape them, but not without herself.

She grabs and relocates the things that remind her the most of herself; expensive jewels she inherited when she was a registered nurse to wealthy white people on Star Island, fancy church hats that were a little too nice to ever actually be worn.

We watch in disbelief. She ignores us until, “Grandma, come have a coke with me” I suggest. I pour her a can of coke. I pour the soda into a glass already filled with a shot of Jack. I don’t listen as I cut her a slice of store bought pie, but I know she is declaring her love for coke. An adoration that stems from her childhood when, “daddy used to us home colas from work.”

She sits at the dining room table and nibbles on the pie. Sips the coke contentedly. When she starts to scrunch up her face, I pour more coke into her glass. That settles it, softens the secret ingredient. She drinks happily, though she has never had a drink in her life. We come from a long line of Christians who serve apple cider as champagne, even at weddings.

“I used to make pies like this,” she says.

I tell her I remember. I don’t remind her that that was just last year, she’s only recently forgotten how to cook.

I pat her hand, “you used to make pies way better than this.”

 

Sometimes our baby is sweet as pie. I facetimed her from Orlando a little while ago. The concept of cellphones is entirely lost on her. She smashes numbers into the confounding device, holds it upside down, tilts her head to get a good look at me. Today, she doesn’t recognize me.

“Who’s this ‘lil girl?” She asks my mother who’s stumping around the kitchen throwing supper together. Ma doesn’t answer straight away.

I smile into the device, “it’s me grandma.”

“That’s Tiffy,” Ma yells from the kitchen. Grandma misses this, shrugs, “well, whoever she is, she really is a beautiful girl. Ain’t she Tracie?” She sits the obscure device down and wonders after my mother’s voice. Leaving me and the confounding device behind.


Spring 2017

Sometimes our baby is rather wicked. My father recently purchased a parrot. The bird speaks Spanish, we speak English. He says “good morning” and “what cha doing” too loud while we are either still sleeping or too groggy to be proud of his expanding vocabulary. When we wake, we open his cage and he walks around on four frail toes as if he doesn’t even know flying is an option. His wings were clipped for so long, he doesn’t know they’ve grown back. He won’t bother to try them out. Grandma tiptoes around him, petrified.

When we put him back behind bars, she’s content, happy. She is bigger, stronger, and she wants him to know it. She pokes a spatula through the bars, taunts him with a smirk. I stop her and she laughs hysterically. “I beat him down earlier,” she tells me, “he took it though, like a lamb.”

My temper threatens to escape me, but instead of a harsh admonishment, tears come. “You can’t do that grandma,” I whisper.

She is still smirking at the caged bird. “I’m not a bad person,” she says, and I don’t know if she is speaking to me, the bird, or herself. But no, she is not a bad person.

The morning after is always difficult. Filled a combination of repressed rage and guilt. She walks into the living room where I am still lying on the sofa. Grandma moved into my room when I moved out,  so I spend my vacations sleeping next to the bird on a sofa in the living room. I don’t mind, much.

“Morn’in ‘lil girl” She greets me sincerely.

My answers are short, my tone clipped. “Morning” I whisper back being cautious; careful not to make eye contact, lest she think we’re companions and take up the empty cowhide chair sitting across from me and my feathered friend.

“How’d ya sleep?” She’s trying to make small talk. She’s forgotten what she’d done, why I am angry with her. I, however, have the gift of remembering.

“Fine,” I mumble.

She tips over to the chair, unpeeling a brown banana. “What cha writing?”

I sigh, “a story.”

As she walks past, I am aware that she soiled herself in her sleep. I scrunch up my nose. Somehow this makes it easier to hate her.

“What’s your story about?”

“Nothing,” I reply as I close my notebook. And I suppose I too am a bit wicked. I could say I am regretfully wicked, and I am, but I doubt that changes things. Wicked, is, well wicked.

I pray Dot’s prayer for her, again. But this time, it isn’t for her really, this time I pray it for me, for us. I come from a long line of cowardly Christians, that is, people who ask Jesus to fix their problems in lieu of rectifying them themselves. So, I pay Dot’s prayer for my mother who is working nights to avoid having to fight with grandma about taking showers or hiding soiled pants. I pray Dot’s prayer for my father who is raising my mom’s mother while Ma’s avoiding her at work. I pray Dot’s prayer for me, so I can keep my mom and dad home, together, in love, together, as it has always been.

I pray Dot’s prayer as a clueless child would, but I am not clueless, nor am I a child, so I am not exactly sure what that makes me.

The morning after is always difficult. Filled with a combination of repressed rage and guilt.

I think of the God I used to know. I think of the baggage grandma has carried; a widower with five children, no formal education, no established relations- a homemaker for a mother and a father who murdered himself. The ceremonies she planned for the two children she buried. The two sons she has left fighting my mother for control of her estate, for what remains of her.

I think of the God she made me pray to as a little girl, and I imagine him bigger, stronger, prodding her feeble body with a stick. I wonder how it must feel to her, but mostly to him. If he swells with pride as she calls out to him, “the one who gives, and takes away.”


Summer 2017

Grandma walks over towards the sofa. My mother suggests she kick her heels up in the leather chair across from the sofa instead. Tells her the chair sits up taller and thereby will be easier for her to maneuver her way out of later. The truth is, the sofa is fabric and the chair is leather. These days, grandma wets herself often and the leather chair is easier for Ma to clean.

I am visiting again. I have brought with me an old teddy bear my boyfriend gave me when we first began dating. He sprays the bear with his cologne and I carry the stuffed toy with me when I am away. The bear is sitting in the leather chair. Grandma picks him up and sits him on her knee.

“You take him with you everywhere you go?”

“Not everywhere,” I smile.

“What do you feed him?”

“He’s just a toy, grandma. I don’t feed him anything.”

She nods in consent, but continues bouncing the bear up and down on her knee. When I look up from my laptop, I see her whispering baby talk to the stuffed bear. Today, grandma sees a baby, grandma hears a baby, we have a baby.

 

Sometimes our baby wants to be an adult. This Saturday morning, our baby has decided that she wants to make her own breakfast. We’re proud, elated as we watch her limp around the kitchen. She must be feeling like old herself again.

I watch her rather intently, then I worry that she may feel my gaze on her. I turn my head and glance at her periodically through the corners of my eyes. Just yesterday, she retrieved an old candle from the trash and tried to microwave it as a snack. I am cautious, lest she make another blunder.

We worry that she may burn the house down, so my father shuts off the breakers when he is away. It never occurred to us that ostracizing her from typical daily functions would assist her mind in breaking itself down faster. She grabs the eggs from the refrigerator, then a pot.

“What kind of eggs are you making, grandma?”

“Scrambled,” she says.

I suggest the skillet that’s in the dishwasher instead of the pot. She thanks me and grabs the skillet. Sets it down on the stove.

We resume our correspondence momentarily. Mom is the first to realize that grandma’s disappeared. She saunters down the hall after her.

“What happened Mommy? I thought you were making yourself some eggs?”

“Well, I was gunna but then I figured I’d probably mess ‘em up. So, I left it alone.”

My mother pauses. “Well there’s nothing wrong with trying. You almost had it.” Mom walks back to the kitchen and makes our baby scrambled eggs, grits, and toast saturated in apricot jam.

 

 

In so many ways, we have failed, and continue to fail, our baby. There is something unnatural about begging your superior to shower, so we don’t. Yet, we stay far, far away from her when she doesn’t. We limit our visitors because we don’t know what kind of day she will have on any given day. I am not sure if we do this for her or for ourselves. We down play her mental ailments. Again, I am not sure if the shame is hers or ours.

It is difficult to process and deal with mental illness when you are an African American and a Christian. I only recently learned that grandma had a mental break in her early thirties, a hiccup that my mother dutifully kept secret from me and the remainder of our family. I too have suffered from metal complications: anxiety, depression, and the like. I recall revealing to my mother my obsession with self-harm when I was a teenager. I recall her telling me to pray more. To pray whenever I got the urge to slice razor blades into my flesh.

My mother is not the villain here. As an African American, mental illness is a weakness. A folly that befalls only those who are not strong enough to stare down their own demons. As a Christian, we are to believe that God will redeem us and save us from even the darkest parts of ourselves, so we kneel and we pray harder. Then, we wait. Some of us are still waiting.

There are two halves of my grandma. The half I knew and the half I know. The halve I knew, loved church. Not just on Sundays for a few hours in the morning. I am talking full blown, screaming and shouting, hooting and hollering from the noon to night, from dusk to dawn. Pentecostal church. The grandma I know, loves TBN, church tv. My new grandma loves her bed. She leaves it sparingly, mostly just for food. She and her food lie in her bulky Victorian bed and watch TBN from morning to noon, noon to night, dusk to dawn. Sometimes I try to convince her to leave the bed, to walk to the church next door with me. I hate church, but it is the one thing the grandma I knew loved. The grandma I know is always promising me tomorrow. She’ll go tomorrow. We’ll go tomorrow.

I wish so many things for grandma. Practical things that I fear are already beyond her reach. I wish the sun could shine on her. I wish she would lie in the wet sand on her flabby back and bask in the Florida heat. I wish she would imprint herself in the sand and stand in the ocean. It has only just occurred to me that I have never seen her at the beach.

I have seen her at church, at home. I thought I’d known her. We have traveled to family reunions, stood in the sun at funerals. I wonder if the halve I knew is even less than that, if perhaps it is only the halve I thought I knew. Because there must be something more to a person than family and faith. That cannot be the whole of a person, any person, can it? I fear the halve I knew is the only halve she ever knew. I fear she will die only knowing that small, tiny person.


Tiffany Knowles is a doctoral student at Murray State University. Tiffany studied creative writing at the University of Tampa and English Literature at Flagler College. She currently teaches Developmental English at Barry University. Tiffany resides in Florida where she assists in providing care to her grandmother who’s battling Alzheimers and Dementia.

Create a Medications Management Checklist

Create a Medications Management Checklist

My mother was getting forgetful and I was worried sick about her. On the phone, my mother’s conversation was confused and fragmented. Finally, I flew to Florida to assess her physical and mental health. One morning my mother said she wasn’t feeling well. She walked into the bathroom, opened the medicine cabinet, grabbed the first bottle she saw, and took a pill. “What did you just take?” I asked.

“I don’t know,” she admitted.

When I looked at the label, I found that the medication had been prescribed for bladder infection. One problem—my mother didn’t have a bladder infection. This error was the beginning of her decline. Shortly after my visit, I moved my mother to my hometown to be closer to family, and monitor her meds. I was her family caregiver for nine years, and witnessed her slow, steady, relentless decline.

Sandra Ray writes about the medication issue in her article, “Keeping Track of Medications Safely,” posted on the Today’s Caregiver Magazine website. According to Ray, the management of medications includes awareness of drug interactions, throwing away outdated meds, never borrowing or lending medicine, not shopping for meds, taking all medications as prescribed, and constant checking. “Drug interactions are especially a concern for seniors,” she adds.

I was my mother’s family caregiver for nine years. Today, I’m my disabled husband’s primary caregiver. He takes so many prescription meds I can hardly keep track of them. I sat down at the computer, studied the medications list, and created a checklist for daily use. Each morning I enter the date, and print out the checklist. Before I give him any pills I check the label to make sure it’s the right medication. I put a checkmark by each medication as he takes it.

This simple system works well for me, and may work for you. This customized checklist makes tracking meds easier. What should be on your list?    

  • The current date
  • Name of the medication
  • Generic name of the medication (if one exists)
  • Dosage (number of milligrams, one pill, one teaspoon, etc.)
  • Reason for medication (high blood pressure, skin rash, cough, etc.)
  • Stop date if there is one

Free and fee medication checklists are available online. Some lists ask you to describe the pill—pink, white, yellow, etc. This sounds like a good idea, but it can lead to trouble because many medications are the same color. If you choose to describe the medication, I would add a qualifier, such as oval white pill, white capsule, or large, round white capsule.

For quick access, I write the name of the medication on the top of the bottle with permanent marker. Of course, I make sure the right top gets on the right bottle.

Safe medication management is an issue that pertains to everyone, not just care receivers. We live in Rochester, MN, home of Mayo Clinic, and go to Community Medicine for our health care. My husband’s last appointment was preceded by a consultation with a pharmacist, something we hadn’t requested. “Why are we meeting with a pharmacist?” I asked. According to the nurse, Mayo devised this plan because so many patients were taking medications incorrectly—skipping doses, taking extra pills, or even stopping pills.

A loved one’s health hinges on safe, ongoing medication management, and that’s part of your job. Create or download a medications checklist today!

What does caregiving feel like?

What does caregiving feel like?

When people talk about overcoming disease or disability to live an incredible life, so often the caregivers are left out of the story.

Many caregivers don’t identify as caregivers — we’re so absorbed in the needs of whoever we’re caring for, we forget what it’s like to be us. We take our own work for granted sometimes.

What does it feel like to be you?


Exhausted. Learnt bucket loads of patience over past 8 years. Lonely. Really grateful for current medical schemes in Australia. Sad for those without same privilege.

Janet


I don’t think people want to feel the way i do.

To be me is to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.

This is only for this week. Never would’ve i thought that being a full time unpaid caregiver to my parents for over 21 yrs would be this hard.

Bob


How does it feel to be me? Wow, that’s a challenge. Most of the time, I really like myself. I like the fact that I don’t cringe in the face of adversity. I meet it head on. I believe firmly that there’s no such thing as a stupid question. I also believe in repeating my question to many people in order to get an understanding of the best course of action for my family and myself.

I have learned that taking care of myself is as vital as taking care of my loved ones. I have made conscious decisions in what I eat every day. I take the time to walk, often with music that makes me smile. That’s a very important thing too. Music must be able to make you smile. I avoid music that makes me frown. I see a counselor to take care of my mental health too. I am not afraid to admit this need.

I know without a doubt that I was blessed with a kind heart and do my best to be nice to others every day.

Mimi


I’m a partial caregiver to my married son in Cal. I’m in Dallas. He’s post 2 liver transplants 17 yrs again at 16 yr, severe ulcerative colitis and depression with suicidal thoughts. His wife has trouble understanding so he calls me. I’m an RN also. I’ve flown out when he’s in depression crisis. It’s very frustrating because of distance and stubbornness. Feel helpless over phone.

I’m caregiver also to my 30yr old daughter who is 3 yr post third liver and kidney transplant. She shattered ankle over Xmas in car wreck had 3 surgeries and 4 admissions. That just added more stress. This daughter doesn’t work goes to school part time, too afraid to do too much alone, no friends, no social life and messy to boot. She gets SSI and still on our insurance which is blessing. But she’s my biggest headache. My other two younger daughters have been out on their own since college.

Then they diagnosed my husband last summer with possible dementia. He’s 64 and retest this summer. Been told it might just be him. God willing.

I had to quit work as home health RN because it was too much stress to caregiver at work and at home. I feel lost very alone and all I want to do is complain to people. I go to counselor, take anti depressants and anti anxiety pills. Sometimes I just want to scream or curl up in a ball and sleep. Have other health issues myself as we all seem to and I feel like my tolerance is slim.

Becky


No matter how much support I receive, I still walk this path alone. So I would say a general feeling of isolation is how it feels to be me.

Melissa


I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.

Barb


Before I became my disabled husband’s caregiver, I was my mother’s family caregiver (9 years), and my twin grandchildren’s caregiver and guardian (7 years). I am my disabled husband’s caregiver now (close to 4 years). From this experience, I learned that I need to keep doing what I love, and that is to write. So I’ve continued to make my writing career a priority. This decision led me to write four books for family caregivers. Another book, about raising grandchildren, is in production now. Writing makes me happy and when I’m happy, my husband is happy. He is my biggest fan and wants me to keep writing. I will admit, however, that two roles—caregiver and author—keep me jumping. Writing can be difficult because I’m constantly interrupted. Thankfully, I am a disciplined author and have good work habits. These work habits carry over to caregiving.

Harriet


It’s an honor to be able to be my wife’s caregiver and I take pride in how I take care of her. I appreciate the kind words from family and friends about how well I do with my caring for me wife.

On the flip side though, I’m tired and I don’t know what my identity is anymore. I’m so wrapped up in her needs I admit that mine take a back seat, in fact they’re in the trunk. Please understand that I’m not bitter, she didn’t ask for MS.

I know that I should get some help, but in my mind who’s going to do it, and better yet who’s going to pay for it. So I’ll do what I always do and keep moving forward, I realize this is on me and for me to get the help I need. I just wish that we can go back before MS and stay there, when the most difficult thing to do was to figure out what to have for dinner. Thanks for letting me vent a little.

John


This is how it feels to be me.

I first became a caregiver in 2011. When I started I was in a size 10. Now I’m in a 14/16. Stress shows in my face and body. I look in the mirror and don’t even recognize this person. I was married and just became a divorced woman.

I have found out that I cannot depend on my siblings to help take care of our Mother. They have not stepped up at all. I feel angry and resentful. But I also feel strong because although it’s the hardest thing I’ve ever done and I’m doing it.

My Mother battles a horrible disease and it’s in my face everyday. My siblings have not seen one ounce. I know I’m doing the best I can and I know I’m helping my Mother that once helped me. You never know what you can do if you don’t try. And you do whatever it takes when it gets tough.

God has not abandoned me but people have. It is very isolated when caregiving and you are no longer “available ” to others the way they expect or want you to be. You will sacrifice much. And it’s hard to find time to take care of your own needs. But I’m working on that.

I plan to find time to go for a walk everyday. And to drink the water I need everyday. And lose the stress weight. Cortisol stress hormone please stop attacking me. I’m already battling LBD.

Anonymous

Creativity and Dementia

Creativity and Dementia

I recently visited my husband at the long term care facility where he now resides and I was impressed by his latest creative work of art. This time he had all of the things out of his bathroom cupboard, his mouthwash, hair brush, plastic glass, soap and toothbrush arranged in an interesting manner on the counter by the sink in the small “kitchenette” area of his room.

It looked like a small city scape, I thought, with the brush acting like some kind of bridge between the glass and the soap. The mouthwash had the toothbrush carefully balanced horizontally on it in the background.

“Well this is nice” I said. “Why is all of this out here?”

I received the usual response, which was really no response, as he cannot effectively articulate what he was trying to do with the items. This was not the first time I have arrived to find modern day sculptures around his room. Often the Styrofoam cups and plates that snacks arrive on are stacked in an interesting and sometimes gravity defying pile on the headboard of his bed. The toilet paper rolls and the paper towel rolls (full ones and empty ones) always seem to need to be balanced upon one another in a precarious manner.

My husband has vascular dementia and that has robbed him of the ability to remember his friends and family. He knows that I am his wife, I think, but he does not remember my name. After caring for him for several years at our home it became a matter of safety for him and sanity for me that he be moved into a long term care facility.

He had wanted to be an architect when he was young but circumstances led his to being an accountant for over 40 years. I can only guess that the creative part of his mind now wants to express itself when other forms of communication have become difficult.

He also amuses himself by re-arranging the various stuffed animals that occupy his room. There are two stuffed dogs – a black and white one that has long ears and a small white poodle replica. These dogs are often in unique positions and are sometimes on the bed in the middle and sometimes they are tucked into the top. The smaller poodle dog can be found whispering into the larger dog’s ear or on occasion it is the other way around. The dogs may be sitting back to back on some days or they might be in a face to face position. They are usually on the small table that is in the corner of the room and my husband encourages me to say hello to them when I enter the room. He often asks me what their names are and I tell him that their names are Spot and Fifi.

spot and fifi

Recently the dogs have been joined by a hand knit bear that is sporting a pair or red pants and a multi coloured sweater. The bear does not seem to interact with the dogs but rather enjoys sitting on his own chair or sometimes he is on the headboard of the bed. I have no idea where the bear came from but he seems to be a permanent resident now. I now have to state his name each time I arrive – I have decided to call him “Beary”.

I find it quite amazing that he is able to entertain himself this way when there are so many other things he can no longer do. I would never have thought that he would have anything to do with stuffed animals as I am sure his sense of masculinity would have precluded that when he did not have this disease.

My husband does not want to interact with the other residents doing crafts or exercises but he does seem to like his activity of using items in his control to build structures. He shows no interest in the Legos or the Lincoln logs out in the common area.

If you have someone in care I would recommend that you try to find something in the creative vein that they might like to do. It could be as simple as putting photos in and out of the photo album with the pockets that you slide pictures into easily. If you have photos of family members or things that the resident likes such as golf pictures, landscapes or cityscapes, dogs or cats or perhaps certain types of cars. It might help to write on the back of each picture in large printing who or what the pictures are. A fun activity could be to sort out all of the people pictures from the pet pictures.

Perhaps when you visit you can empty out a drawer and the two of you can fold the clothes and organize them and put them back in the drawer. I know that my husband is a very tidy folder and we can spend some time getting that task done. It seems to give him a sense of accomplishment.

I also have brought a target and some bean bags that you can throw through the holes in the target. We do not keep track of the points but it is always fun to see how far away we can put the target and hit the holes with the bean bags. Even more interesting is finding the bean bags for this activity since they sometimes end up in very different places from where they were last placed. A good game of “Hunting for the Bean Bags” usually starts this activity.

If you have a person who used to like to knit then a large ball of wool and large needles could be brought in and the first couple of rows done on a simple knitting pattern, I saw a show where a person got all kinds of seniors in care facilities making squares of knitting and she then felted those squares and made them into purses and other things.

On my next trip I plan to bring in some poker chips that are various colours and have them all mixed together in the box and ask that my husband sort them out into the proper colours on the rack they go in.

If you have a person that you care about in a long term care facility with dementia then I would encourage you to try to find their creative side. It may surprise you to find out how they can still be imaginative. Dementia may have robbed their mind of many things but it seems it cannot quite put out the spark of creativity.


You can learn more about Lee’s experience caring for her husband in Dementia in the Family.

Is there a better term for caregiver burden?

Is there a better term for caregiver burden?

You’ve heard the term “caregiver burden”, right? It’s the stress and strain that comes with caring for someone who is ill, elderly, or disabled. Lots of people don’t really like it, since it can easily seem like the person you’re caring for is a burden.

I was thinking about this while reading the story of The Perfect Servant. She’s really honest about what a burden caregiving can be, but it’s also clear that the love her and her husband share is incredible. We don’t want the person we’re caring for to feel like they’re a burden or to further stigmatize their condition.

Is there a better term? How can we talk about the stress of caregiving without placing blame on the person we care for?


I am reaching a new level of care for Deb as she is incontinent of bowel and bladder to the point that she has lost all control. Her MS is putting her body thru some new changes. Her fatigue is such that a lift may now be getting close. My own ability to care for her as a 66 year old man is being called into question. I bring this up to address the word “burden”. Is it now a burden to care for a woman I have been married to for over 32 years, who has always given more to me than me to her and has been in a w/c for over 7 years and I am her nearly full time caregiver. To say it is not burdensome physically and emotionally is naïve and dishonest. However, this burden is filled with that intangible gift of love we have been given and I want to share and honor that with her.

Jerry



It’s like I have been trying to instill in my son, there can’t be blame. It’s an awful word to start with, when you consider the meaning. Things happen, it’s called life. It’s called what God and Jesus hand to you and expect you to do right by. I firmly believe in both God and Jesus. God picks who we are, boy or girl, short or tall, autistic or not. Jesus gives us our heart and soul, and expects us to love unconditionally always.

My son didn’t ask to be autistic any more than my dad asked to suddenly grow weak and unable to take care of himself 100% of the time. I certainly did not ask to deal with chronic pain, PTSD, have my neck fused, and more. Blaming or saying someone is a burden disrespects God, Jesus, and the person who has become dependent on others in daily life.

I would encourage someone to seek counseling because it really helps. If not counseling, find that someone who would not mind being a sounding board. Not to give advice as much as there to listen to the struggles, the
fears, the joys and the frustrations of being a caregiver.

Most important of all, find that time for yourself. 15 minutes here, 15 minutes there. Read, listen to music, watch a favorite tv show, it doesn’t matter as long as you are giving yourself time to focus on something other than the person you are caring for. Balance is key to not feeling the need to use the word blame.

Mimi


How about “moral responsibility”? Caregiving applies to the circumstance but the heavy feeling of a burden comes from outside the role of a caregiver. These emotions stem from a desire to believe in hope for humanity. That no matter who or what we are, when faced with a need, at the stake of human condition, we will take action… We care cause we relate to the fact that might easily be the one in need and I hope the same moral conflict in others will still exist and someone will be kind enough to help me!

Ashley


As a caregiver to a loved one, there are different levels of emotion before the sense of burden comes along. And once it does, then there’s guilt for feeling burdened. That comes from not getting those much needed breaks for ourselves.

Teresa


There is a wide range of emotions that come long before one falls into the ‘burden-guilt’ trap…but something we don’t talk about often for caregivers is the need for self-care. I was fortunate enough to hear an interview with a caregiver (on CBC – Sunday Edition) just a few months before my caregiving journey started in earnest. I learned a few things: the importance of accepting help and the importance of taking time for myself. I’ve only faltered when I didn’t do one or the other (or both!)

Honestly – I don’t feel burden or ‘why me’ … I feel blessed that I have so much support in my life. For my husband, I only feel love. As much as I’ve been his caregiver, he is my rock in so many other things.

I know I am so very fortunate. and for that I’m grateful. For me, there is no burden, just love and gratitude.

Sylvia



I am a nurse practitioner. In the field of nursing we call it “burnout” when the burdens of caring and providing for others fatigues you to the point of exhaustion and inability to often meet your and/or your family’s needs.

Donna


It is a challenge.
It is a burden.
Above all of that it is a responsibility.
Caregiver Responsibilities.
We are the capeless heroes that never get a casserole.

Kim


I have given care for years to various ones. First as an RN and then as a mom who had a terminally ill child, then, my parents. Still in the midst of caring for my mom. I liken the fatigue I felt with my son, as PTSD. I didn’t realize it at the time. Burnout is another term I’ve used. Fatigue is yet another term. I don’t think I’ve ever placed blame on the person I’m caring for, but more on myself for not being able to meet all the challenges.

I love what I do, I would not want it any other way. What we, as caregivers extraordinaire, need is the ability to find time away to regroup and recharge. We need the ability to not go broke in caring for our loved ones. That alone, would remove stress from our lives. Tax laws should be changed to give us a break on this. We are keeping our loved ones from becoming a burden on society on the tax payers dime. I try to remember that I am serving my Lord and Savior as I care for my mom. I am honoring my parents, as is commanded. May God bless each of you, as you care for your loved ones.

Sherelyn



It does seem like any concern is a complaint when it is not. It is just a plea for how something can be done better or easier for both. This is definitely a learning process but one that has no room for error on either side.

Diane


I place all the blame on myself, why not everyone else does. I’ve been taking care of my parents for 20 plus years, I even bought the house next door to them for convenience.

My dad passed away last March on my mom’s birthday so now it’s just mom. She has COPD and its very bad. She only goes on 3 rooms of her house and has anxiety issues that prevent her from leaving her house, period. This is a constant battle with her because she does not allow me to be gone because she will panic. My family is headed out the door at the moment to go on a much needed fishing trip and I get left behind. I do not resent my mother for this.

I am sitting here waiting for her to ring the wireless door bell I have for her letting me know she up so I can do our daily care routine, I do not resent her for this. I love my mother and would never leave her in a million years, but it’s exhausting at times because she has no zest for life, all she wants to do is smoke (she’s been quit for a while now ) she asks and I say no, she resents me for this, I feel guilty because I am not giving her what she wants, it’s my fault she’s not happy and she lets me know about it to, this is where I resent her attitude towards me.

If I give on, she will end up in the hospital just like every time before and its my fault, my family says so, and so do I. Its not burn out exactly, it’s not knowing what to do when she gets like this and no matter what choice I make it comes down to her health or her happiness.

Genie


My burnout and frustrations came from family not working with me as a team to help take care of Mom … And accusing, ridiculing and blaming me for the dysfunction.

Linda


I’ve been a caregiver for six years for my,now, 91 year old mom. Once she said to me; “I feel like I’m a burden to you.” I knew that denying that would be a lie so I said in a soft and loving way; “yes, sometimes caring for you is a burden just like I was to you when I was young and you were raising me as a single mother. But that doesn’t mean we give up just because something is challenging. Our love, commitment and loyalty means we stay and we persevere. My dog got me up three times last night and that was a burden but that doesn’t mean I give her away or that I don’t love her.”

My mom nodded and replied; “I’m so grateful to you.” And my response was; “I love you and I’ll always be here for you.” Something my two older sisters know nothing about.

Kellie


Caregiver stress syndrome is a much better term. There are degrees of it just like any other syndrome. Burden allows the greater society to continue to ‘blame the victim’. We blame the person who took on the role of caring for another person instead of providing adequate services and supports.

And for those who don’t want to be called caregiver: this is why we do it: in order to access services and supports we have to call the person giving of their love, time and effort something. The political will to support ‘grand daughter’ or ‘husband’ or ‘wife’ doesn’t exist in the US.

Those of us in caregiving research often wore the same shoes and walked the path. We use the term caregiving or care partner or dyadic care in order to try to get the local, state and federal funding to assist those who provide care. We don’t do it without thought.

Jeananne


It is what it is. And it’s not the patients fault, but we have to acknowledge the true weight of what caregivers go through.

Michaela


You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.

Penny


 

What does it feel like to be me?

What does it feel like to be me?

What does it feel like to be me?

The first word to come to mind is “full”. Frustrated is a close second. My 91yr. old mother has lived with me for six years. Her dementia has stolen her reasoning, memory, logic and ability to track what I’m saying. Some have told me that “caregiving” is my identity.

I don’t want it to be. I want it to be what I do and not be so encased in who I am.

What does it feel like to be me?

Sad a lot of the time as I get covered in anticipatory grief. The grief ebbs and flows in phases and I’m just now realizing that those phases will pass. I know life will have challenges and struggles but I can choose whether to be miserable or not.

What helps is focusing on the moments of joy I have with my mother today or in a brief moment. Those moments will be kind to me after she’s gone and bring me solace.

What does it feel like to be me?

Tired. Mentally, physically exhausted. I try to make time to do what refreshes and restores me, like gardening and going to church, lunch with friends, a massage, the gym, weekend away with my husband and the kids. It’s difficult when I’m so fatigued but once I push myself to do it, I always feel better.

What does it feel like to be me?

Lonely. Even when I’m not alone. Few people in my life truly understand what the experience of caregiving is. Friends ask how my mom is doing but rarely ask how I’M doing. And there are those times when I, too, get tired of hearing my own voice expressing my frustrations and irritations. Sometimes the loneliness is a loss of connection with myself. I’m an introvert and it is vital that I have time alone to reconnect with myself, my thoughts, to process what’s happened or be distracted from the chaos and unpredictability of it all. Those days to reconnect with myself are far and few between.

What does it feel like to be me?

Grateful. At the most challenging time in my life (caregiving for my mom) I experienced the greatest blessing in my life–I met and married my husband. My mom’s friend will take her for a few days to give me a break and I’m so thankful to her for that. I”m grateful for having good health to be able to continue caring for my mom. I’m still practicing acceptance for this struggle and pray for patience and stamina. This experience has brought me back to a connection with God and I don’t think anyone could be a caregiver without a connection to some higher power.

Thank you,
Kellie

Terminal Determination

Terminal Determination

The saga began Wednesday morning in March 9. Hours of screaming. Calling for the ambulance. Emergency room admission. Morphine drip for the pain. CT scan. Calls to calm his hysterical mother. Five-hour surgery I’d been told would just be a couple of hours. Surgical ICU for a week. Steve was put in an induced coma so all of his strength would go to healing. I sat in the alcove in his room and watched him for days; swaddled in white linen with tubes coming in and out of every part of him.

On Friday afternoon, our gastro doctor told me to go home and get some rest. His exact words were “Steve is circling the drain.” What? “He’s gonna have to fight to pull through the weekend. If he does, we’re in the clear. And you’re going to need your strength.” I couldn’t breathe. It was like I was punched in the gut. All the air was knocked out of me. I must have gone straight into a state of denial because “I knew” that Steve would pull through. I wouldn’t have it any other way.  I’d spend my days sitting beside him as long as needed to secure his complete recovery.

When he was rushed to the hospital, the doctors thought it was acute appendicitis. I told them he’d been self-medicating for diverticulitis for a week and the surgeon discovered it was peritonitis from his CT scan.

I’d sit and knit in his room from 10:00 a.m. until I left about twelve hours later. The nurses loved me. We’d bonded and I was a great help to them. Steve’s bed was right in front of the nurse’s station and the room had a little alcove I could hide in after visiting hours were over. No one ever kicked me out.

Steve looking like he doesn't have a care in the world, despite a terminal cancer diagnosis

On Friday morning when our internist was doing his rounds, I was already at the hospital. He needed to speak with me. The CT scan the surgeon had taken on Wednesday was shot a little high and shown cancer in the middle lobe of his right lung. After I caught my breath I conveniently “forgot” this until Steve had recovered from his surgery, was home healing and we began making visits to all of his physicians.

First the surgeon—Steve had done beautifully and was given a clean bill of health. Then his gastroenterologist—clean bill of health with instructions to change his diet and begin exercising. Finally, we went to our internist who also gave Steve a clean bill of health and told Steve to get dressed and meet him in his office—which was par for the course.

i look less relaxed than steve does. I knew I was going to have to live after he passed and create a new life for myself

But this time, he told us that a cancerous growth had been found on the middle lobe of his right lung and that he needed to find a surgeon and oncologist as soon as possible. Now that the wounds were healing from his surgery, it was time to address the cancer.

A big part of caregiving for me was having the ability to go with whatever was thrown at me. The 12 Step program’s Serenity Prayer—“God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference,” saw me through.  It was that simple; that cut and dried. With whatever “Higher Power” I believed in, the prayer made perfect sense. It made it possible for me to go with the flow. To do all I could do to affect change acknowledging there were some things beyond my control.

That was the key. I didn’t relinquish control, I just needed to recognize when things were beyond me. All I could do was my best and then let go.

The word “cancer” rang out as a “death sentence, “ but I went to work finding the best oncologists and surgeons I could. We spent about two weeks interviewing leaders in the field in New York City and made our choice. We learned that if the middle lobe of his right lung was removed that Steve would be fine—for a while—but that this cancer would return and ultimately kill him. We heard that from eight different specialists.

Going through surgery for peritonitis and waiting for that to heal to be able to go through surgery to reverse the temporary colostomy he had needed to be able to wait for the reversal to heal to be able to have the middle lobe of his left lung removed took six months. After that, we’d be able to have peace of mind for a while.

Being told you’re going to die from cancer—eventually—doesn’t mean you just sit back and wait for it to take you. First there were scans every three months, then every six months and once we’d gone a year and a half cancer free, we got a little cocky. I was still doing research on new protocols, but with every visit to the oncologist we’d be told why “That’s not an option for Steve.” That didn’t stop me from looking for the best care available. After Steve’s second six-month scan, the cancer was back.

This, of course, did not make us happy, but we kept on plugging doing all we could to extend Steve’s life. Surgery in Boston (where his original surgeon had relocated), chemo and radiation in New York. It was his life but I was the one who was going to be left. From the time of diagnosis I knew that this day would come and other days like it, when we’d be told this or that protocol wasn’t working any more and the cancer was spreading.

In September of 2010 he started pinpoint radiation therapy. The cancer had spread to his spine. After this, there was a new chemo regimen. The one major blessing in all of this is Steve never looked sick. He never lost too much weight. He never lost his hair. His complexion was always ruddy so he never looked pale or sickly. For all the world, he looked like a healthy man and was treated as such.

Steve after the first three surgeries, but before the fourth

Steve did a weekly TV call-in show for 35 years and he had many regular callers. Because he looked so well, not one of them knew he was ill. For one hour every week, he could feel free of the disease. He could be “the old Steve.” He did his show until two weeks before he died. It was his best therapy.

Waiting for chemo sometimes took hours. We’d have to go through the motions and have Steve’s vitals taken and then sit until someone could see us. When his doctor saw him, Steve asked “How long do I have?” and when the doctor told him “Maybe three months” I didn’t believe him. I lived with this man. I knew whatever was going on, Steve had weeks left to live, at best. While he took his treatment, I slipped away and found a P.A. who knew me. I confronted her. “Tell me the truth. I don’t think he has months to live. I’m his wife. I’m the one who will be left. How can I prepare for what I know is coming if I don’t know the truth? I need to know. I won’t tell him.” She turned to me and said “No more than a month. Maybe less.” At last. The truth, though ugly and sad, was something to hold on to.

About a week later, the oncologist told us “The cancer has gone to your spine. There is nothing more we can do for you except make sure you’re not in pain.” I’d heard those words before right before my father died. “We’ll make sure he’s comfortable” was another familiar comment. We left the doctor’s office, went home and cried together. We’d both done all we could and both given it our all. The fact that we had gotten to a place in our relationship where there was no blame being assigned, much appreciation and open expressions of love. I was going to have to live with the remnants of terminal cancer, but I could live with myself.

All my work and efforts on his behalf had just been part of the natural order. Steve let me know how much more capable I was than he had ever realized. He let me know that the thing he felt worst about was leaving me alone. There was so much left to be shared. He was about to turn seventy. About to begin to take it easy and travel to all the places we’d dreamed about.

Of course the idea of what my new life would be like had crossed my mind. I felt no guilt thinking about the future without him. After all I’d done everything within my power to keep him alive and we both accepted there would be life for me after Steve. But I was grateful; grateful that he’d never really looked ill; grateful he’d had it easy compared to some other cancer patients we knew; grateful he wasn’t in pain. But when the dementia took hold, I knew it was a matter of weeks or even days. I hated the thought of living like this for too long.

My Steve only made brief appearances now and then. From midnight ‘til dawn I lived with a paranoid maniac. He slept during the day—pain meds exhausted him, as had his episodes of dementia the night before. Of course he didn’t know what was going on, which made it all the more painful for me. This brilliant man was seeing spacecraft outside out bedroom window; or Vietnamese women with cats padding about the front of our apartment, stealing things. Days later he was hospitalized and ten days after that he died.

I’d learned to “play it as it lays.” It was the only way for me to cope. I’d done my very, very best and had zero regrets. Steve’d given me permission to live a good life after he passed. He’d told me who I couldn’t date. He’d told me to ask for help when I needed it. If he couldn’t be there, he wanted me to feel taken care of nevertheless. I’ve followed his instructions. I have a life. I try to give back. I have a mission. I have wonderful memories; but I have a future too. Steve wouldn’t have wanted me to waste it.

How did we become family caregivers?

How did we become family caregivers?

A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.

The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.

So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?


I became a caregiver when I realized no one else was going to be able to fill the need.

I taught full-time in a tenure-track teaching position at a prestigious university. As I prepared my dossier to go up for tenure, my dad called to tell me that he had been in the hospital. He had had a TIA or “mini” stroke, but was ok. Meanwhile, my mom’s Alzheimer’s was progressing faster than expected. A week later, was spring break at the university, so went “home” to see the folks. As I walked around their house and saw how poorly they were managing, I knew I had to make a difficult choice.

I walked away from my career and put my life “on hold” as it were to care for my folks. It was a choice, but it was also true that choosing not to help them was not an option.

Andrea


Not a choice an obligation to the ones we love

Maggie


I became a caregiver for my Mother out of choice. Plus it was also a necessity. I was the only family member in the area and just sort of “fell into” the job.  It was never a “job” as I had promised Mom to take care of her.  I was able to do so as I am disabled so was not working.

The Caregiver Space was such a huge support for me, I received so much encouragement and generalized help.  The course the VA sent me through was also a huge help.

Since Mom’s passing, I have become a part time caregiver for my neighbor who had a paralyzing stroke. It is great to be able to help them as they were always there for me when I needed them.

JeanAnn


I became a caregiver for my widowed Father 4 years ago when he was 91. Although I have 4 siblings… no one stepped up and he was not doing well on his own. I was checking on him daily but when we moved out of state for a couple of years we had no choice but to have him come with us… 4 yrs later he is still here. We have moved back to our home state.

Dementia is getting worse and it is a lot harder to care for him. He is getting combative. Everything has to be planned around his needs. My poor husband is really over it. He is retired now and we can not enjoy our retirement. We can not just go out for the day or take a spontaneous trip to see our grandchildren and my siblings still have not stepped up. He does not have a lot of money so hiring help is out of the question… we are paying a CNA to come 3 days a week to bathe him now as he has refused to bathe but says he already did.

Barbara


I started caregiving in 2008. I went to work for a company that cared for folks with developmental​ disabilities. It is a rough field but managed stay for a year and a half. I decided to leave there when I realized my own physical capabilities. I was 57 at the time.

I started caring for mostly for my mom and my dad as his health declined. I made a major move to Colorado for them. My Dad passed away October 2013. I continue to care for my mom today. She is 84 and has physical
disabilities and so far I am able. We lived in my brother’s house and he took care of us. In July of 2014 he had medical issues going on and I cared for him too. He passed away in November 2015. He was the baby of our
family. After helping her settle things there, I moved my mom and I back to New Mexico. Closer to my daughter.

I think sometimes about how much I want to live my life but she would alone and where? I allow myself to feel the anger, resentments​, try to stay positive and do for me what I can. I don’t have the answers. I have a couple good friends in similar situations that are good support. I get up every day and put one foot in front of the other. None of us knows what life brings so it’s best to enjoy something in each day. Life is an adventure.

Thanks for reading and reaching out.

Kathy


I became a caregiver when my wife was diagnosed with Alzheimer’s.

There was no choice in the matter, I did what a husband is suppose to do.

Duane


I didn’t have a choice at being a caregiver. My sister was married with her own family. Since I was single, the duty fell on me to help my dad with mother and now, I take care of him.

Peggy


In my paper (delivered at the Alzheimer’s Association and American Society on Aging) the topic of the “Moral Dilemma of Caregiving” is discussed. The ethical dilemma comes when the caregiver is forced to choose between 2 wrongs. For instance, giving up a source of income to become an unpaid, full-time caregiver.

For myself, caregiving meant moving to our new retirement home and bringing Mother with us, instead of putting her in an excellent facility where I had worked.  I’m still paying for that decision in the lack that social support I have been able to nurture for myself in the new location.

Then Mother died, and my husband was given a terminal diagnosis.  In the space of a year I had lost my jobs, proximity to family, my tribe, my Mother, as well as my identity as an esteemed organist and a geriatric social worker with credentials in assessment and national presentations.  Gone. Now I lead hikes…and read emails on “caregiving”.

Marj


11 year ago my wife had a liver transplant, now we’re told she​ has cancer, plus heart problems. I didn’t ask to be a care giver, it just happened to me. Holding down a job and care giving.

Douglas


Death made me a family caregiver twice. After my father died, my mother struggled, became unsafe, and I moved her to Rochester, Minnesota. My twin grandchldren’s parents died in separate car crashes, and the court appointed my husband and me as heir guardians. We did this for seven years.

In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one, my husband suffered a spinal cord injury that paralyzed his legs. I’ve been his primary caregiver for nine years. Sometimes I think I need a caregiver myself.

Harriet


When I got married I made a choice that I would always care for wife no matter what. Diabetes was newly diagnosed a month before our marriage. Over the years, the diabetes evolved into more and more issues (renal failure, kidney transplant, major stroke, breast cancer and finally seizures. Not once did I doubt my promise or commitment in the forty seven and a half years that we had together.

Bruce


It was something I had to do. My husband’s Atypical Parkinsonism impairs him but not fully enough to warrant outside help…yet. However, driving, dispensing drugs, some grooming/dressing, use of cell phone, tv remote, and computer all require assistance. Add to that the daily, ‘where did I put this,’ (many times a day) AND, last but not least, vision impairment from coincidental right eye retinal vein occlusion and neurological effects if vision in ‘good’ eye
….and you get spousal caregiving. 🙃

Melissa


I became a part time caregiver for my mother when she had a stroke in 2003, at that time I was working as a Licensed Vocational Nurse and would bring food to my parents and bathe my mother before I went to work during the week and then would go on weekends to care for her.

My father started having symptoms of Alzheimers disease a few years later and I became his caregiver as well. My father passed in 2010 and I moved my mom into my home and I was forced to resign from my job, as I could not find a qualified caregiver to stay with her while I worked.

That was 7 years ago, I continue to care for my mother and her health has continued to decline. This year she had a UTI in January and was in the hospital for a few days, I took her to her doctors office for a follow up appointment  in February and she got the flu, she became dehydrated and was hospitalized. I opted for her to have a feeding tube, but the doctor had to do a Hiatal Hernia repair first, this was a major surgery for a 95 year old. She came home and a few days later developed a bowel obstruction which required another major abdominal surgery.

She is home now and slowly recovering, she has had some TIA’s which has left her combative and confused. I became a caregiver as my parents did not have long term care insurance and could not afford  to hire quality caregivers. I had worked in a nursing home as a charge nurse and had decided that that was not an option for my parents.

I am fortunate that I have the training and knowledge to give my parents loving care in the home setting for many years. This has been a strain on every aspect of my life, my marriage my profession and my dream for further education. I am happy that I had the opportunity to provide the care to my parents, but hope and pray that my children do not have to do the same for me.

Theresa


I became a caregiver when my husband became seriously ill. That was 20 years ago and his health has declined dramatically over time with many added health conditions. I continue to be his caregiver and will be forever.

Linda


I became a caregiver when my middle daughter, Amy, was born. She has a chromosome disorder that has affected her physically and developmentally. She is non verbal and functions like a 2-3 year old. Amy is 33years old and lives at home.

When Amy was 4 years old, my husband and I adopted Ashley. Ashley has cerebral palsy, is deaf and nonverbal. She functions like a 9-12 month old. Ashley is 28 years old and lives at home. As my husband and I get older, the caregiving is getting harder and really taking a toll on us. I love my girls with all my heart but it is definitely hard!

Lisa


I had a choice to become my moms caregiver. It was either me or a home. I
chose me. She needs one on one care all day every day and the best way for
her to have that care , was for me to do it.

Carol