Caregiver frustration

Caregiver frustration

No matter how rewarding caregiving can be or how much we love the person we’re caring for, caregiving is frustrating.

Frustration just comes with the package. We’re human and caregiving inevitably involves situations and tasks that are inherently frustrating. So many of us feel guilty for losing our cool, but it happens to even the most patient caregiver, eventually.

Frustration is a daily challenge. My dad’s other 3 children make no attempt to even call him to say hello. So there’s no real break or support when my dad needs to visit the emergency room.

Because I am also my 22 year old autistic son, frustration can magnify greatly. My son struggles when he must wait for something he wants to do. Like visit a very big mall about 50 minutes from home. He also struggles a bit with sharing me with his grandpa.

Frustration, too, to eke out some time for just myself.

Frustration is and, probably be a big part of my life for the next while. – Mimi

Frustration comes up a lot when we talk about the struggles of caregiving. Dorothy, BobGiselle, HarrietJudith, and Roz all talk about the frustration that results from difficult people and challenging situations, day in and day out.

What’s your biggest caregiving frustration?

Constant interruptions

My husband had a stroke four and a half years ago. He uses a wheelchair and needs assistance with any transfers. Also, his judgement is not always the best when needing to pick something up from the floor. My biggest frustration is not being able to complete a task such as folding laundry or doing dishes without having to stop and help my husband. I love him so much and understand his frustration when needing to ask for help. If I don’t respond right away, he will try to do things that are not safe. – Debbie

I’m maintaining a writing career while caring for my disabled husband. Often when I’m writing, I have to stop what I’m working on and help him. This interrupts my thoughts, my word flow, and my productivity. Still, I’m determined to keep on writing, and created a series for family caregivers. – Harriet

Isolation

In the end, it’s the frustrating/bitter/sad realization that this is a path you walk alone, mostly behind closed doors. No one has the history you do. Honestly, I do not expect people to understand, even the relatives. Friends and family do the best they can, really, most of the time; but everyone, EVERYONE, has life’s curve balls to deal with. – Melissa

Not having any help and everyone second guessing everything you do. – Dennis

Lack of sleep

My biggest frustration is losing so much sleep. I never know when he will get up early in the morning and trigger the alarm. After I wake up from sleep I can’t get back to sleep knowing he is walking around needing me. – Gina

Navigating the system

The process to obtain Disability Benefits for my wife diagnosed with PSP was the most frustrating ordeal I have ever dealt with!! Every time I think about it now steam still comes out of my ears. – Paul

It’s okay to get frustrated

I don’t care what other people think. My closest friends know I love my husband. But I’m human. Actually, I’ve circled the wagons, and keep in touch with only the ones who get it. The rest? I’m polite, but I don’t really hear what they say. – Melissa

Frustration is a normal, even healthy, part of being a caregiver. How do we cope with it?

If you can, take a break. You probably can’t take the day off or even get an hour’s peace. You can hopefully step into another space for a minute to take a deep breath and clear your head.

Focus on problem solving. Is there something you can do to make a situation easier to deal with? Sometimes there isn’t. In that case, we need to learn to accept things the way they are.

Think about the big picture. If you’re frustrated with a person, be it a customer service rep or the person you’re caring for, imagine things from their perspective.

Remember it’s okay to be upset. Being frustrated doesn’t make you a bad caregiver or a bad person. It just makes you human.

Part of it requires cultivating your overall resilience. The more resilient we are, the easier we can rebalance after something throws us off.

You might also find Iris’ tips for dealing with anger or Michelle’s experience learning to forgive herself helpful.

Remember, caregiving isn’t for wimps. Take a minute to recognize how strong you are to have made it this far!

One question that changes everything

One question that changes everything

The other day I was in an ER far from home. The woman in charge of triage was refusing to move forward with triage because we didn’t have insurance they’d accept.

The fact that we had insurance and had even gotten pre-approval to go to the ER wasn’t enough — she wanted us to call them back and get paperwork faxed to her. The instructions we’d gotten to pay out of pocket and submit the invoice for reimbursement meant nothing to her. She wanted a fax. But she couldn’t find the fax number.

Finally, I asked, “Is there another ER we could go to that will accept payment in cash?”

Suddenly, we could pay in cash. There was a clear procedure in place and it was no problem.

The next day, I saw the same advice in a comment here:

If I got, “Sorry, I can’t help you.” I asked who could. – Diane Bobinski

When you’re talking in circles — or worse yet, being told ‘no’ over and over again — ask who can help.

It seems obvious, but it’s so easy to forget to do in the moment.

Plenty of times the person saying “that’s not my job” knows whose job it is to help you. But so often they don’t offer up any information you don’t ask for.

Advice for new caregivers, from caregiving veterans

Advice for new caregivers, from caregiving veterans

Welcome to the world of caregiving.

It’ll be hard, but it’s worth it.

You will never ever regret being a caring caregiver. – Debra Taylor 

It’s all about love

Remember to love unconditionally, when it’s a family member. – Mimi L

Accept help

Don’t be afraid to ask for help. Take any and all offers – they eventually stop. – Narelle

The only advice is to reach out and ask your for help. If you don’t and it becomes a long term as it has with my family, people back away, be open and honest that you need help. – Maggie

Remember self care

Take good care of yourself too. Find time for yourself. It can be something as simple as reading a book. Never forget yourself. – Mimi L

Don’t forget yourself

It is important to maintain certain projects that gives one a since of identity. Why? Because so often as the journey continues it is easy to lose sight of who we are, or were before the all consuming responsibilities are upon us it is too easy to lose our sense of purpose. It is best too if these projects include some sort of creativity. Why? Because a wise man charged with running a school for children with disabilities once said to his staff that when doing such a job as caring for another, creative efforts provide the in breath and the caring effort is the resulting out breath. – Linda

Make decisions together

As a veteran caregiver of both mom with dementia and spouse with MS, patience patience patience. Breathe and try to understand their state of existence. Think through to solutions that work for everybody. Ask before you make decisions about their care. – Joanna L. Brandon

Sometimes you have to be forceful

Be proactive, especially where your parents are concerned. We’re taught and experience trains us to follow their lead and defer to their wishes, but there comes a point where everything they taught us comes majorly into play. It’s a role reversal and we chafe against it, but it must happen before a disaster dictates the when and where. – Kat Drennan

You can’t argue with ALZ

Caregivers have to adjust, adapt, and accommodate because you can’t teach, train, or tell. Momma was on her own strange journey. I could not go into her world, but I had to survive it in order to help her. – S

Selling the family home in a down market

Selling the family home in a down market

Here’s a tough situation quite a few caregivers find themselves in: being responsible for selling a home that’s not in great shape. What do you do when no one seems interested in buying and you can’t afford to keep it?

Q

My sister and I inherited the house we grew up in after my mother’s passing. We are struggling to sell it.

The house needs some repairs and is in need of a renovation, but we can’t afford to do this. There’s a $9k mortgage.

It’s been listed at $50k, but hardly anyone is even looking at it. What can we do to sell the house?

If we can’t sell it, what can we do so it doesn’t damage our credit? I was told that if the house goes into foreclosure it will ruin our credit.

A

If the title is in the name of the estate, then it doesn’t affect your credit at all. If you put your names on the title, then it will. Sell it ‘as is’ for anything over the mortgage and realtor fees. I’m sorry you’re dealing with this. The loss of your parents and your childhood home must be difficult. The right family will come along, fix it up, and again make it a loved home with happy memories. Peace of mind is priceless. – Kathy C.

I was in a similar situation about 10 years back after the death of my brother. There was a higher mortgage than yours and it needed lots of repairs. I let it revert to the bank (just quit paying the mortgage) and they sold it at a sheriff’s auction. Funny thing is, the new owner got in touch with me and had me over to see the improvements he made. He’s a real nice guy and it’s comforting to know my brother’s home went to him. – Martha P.

Lower the price and it will sell. – Catherine D.

You may not want to make big financial decisions when you’re in grief. Give it a little time. – Kris M.

I’m sorry for your loss. I’m sure you have a lot of emotions going. Try to think of the house sale like a business. Sell it quickly and take what you get. Don’t worry about what you could get, since you can’t afford to make it ‘marketable.’ – David F.

What about donating it? Perhaps someplace like Habitat for Humanity will take over the mortgage and fix it up so someone can live there. – Mari D.

Is it your mortgage? Unless the mortgage is in your name what happens will have nothing to do with your credit. – Jack R.

If you’re in probate, be aware that you may need the probate judge to approve the price and buyer. This needs to be part of the listing. This adds time to closing and frequently results in a lower sales price. Probate judges are used to houses selling for somewhat less than they’re worth. – Jana D.

Not every upgrade or repair you make has to be expensive. – Cori C.

Are you listing with a realtor? Ask her to market it to investors who may be willing to do the work. If you’re not getting bites, you’re priced too high for the work that needs to be done. You have room to drop it. – Jennifer M.

If you just want to get rid of it, see what an auctioneer thinks it will bring. – Erica J.

Look into local real estate investor Facebook groups. Join and post the ad there. Check out FSBO (for sale by owner) groups. – Patrick N.

Working while caregiving: how we do it

Working while caregiving: how we do it

Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.

Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.

Lauber Rick - On Bench with BookRick Lauber

When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents. He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.

Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.

A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.

In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.

Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.

In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.

He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.

Rick Lauber is the author of The Successful Caregiver’s Guide and the Caregiver’s Guide for Canadians.

Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago

Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago

Richard Lui

MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!

He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.

Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.

Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.

His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.

Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.

While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.


So many of our community members are in this situation. Here’s what a few of them have to say…

I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb

I have [professional] caregivers during the day, so I can work. – Cathy

I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa

I feel part wife / part maid/ part cook / and I work part time. – Susan

I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley

I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel

I have to do everything plus work full time. – John

I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison

I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie

When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia

I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina

I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia

I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara

I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy

I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith

I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter

Some comments have been lightly edited for clarity


Here are some tips for finding a job that allows you to work remotely and how to actually get work done at home while caregiving.

If you need to leave your job to provide full-time care, check out these programs that pay family caregivers to see if you qualify. Our community can vouch that these programs are real, although they fall short of what we need and far too many people don’t meet the requirements.

Breaking a promise

Breaking a promise

So many of us have promised our parents that we’d never put them in a home.

And then, one day, we do.

Putting a loved one in residential care is an incredibly difficult decision for anyone. It’s even harder when doing so breaks a promise we’ve made.

Here’s what our community has to say about it.


I do care for my invalid Mother at home, but promises or not, there are instances where one can no longer care for a parent; so choose a nursing home carefully, visit very often. – Phyllis M.

What if you get sick? Or disabled? Of course you provide better care than other people would but it is important to make plans for what to do in case of emergency. Caregivers develop illnesses and have accidents just like non-cargivers. – Jeananne E.

I tried as hard as I could not to put my dad into a nursing home. I had to in the end for the last months of his life because I couldn’t lift him anymore. He died not forgiving me for doing that. No one else helped me care for him all those years. Now I care for my mum and I am doing a great job. However she knows that I will only put her in a home when I can no longer care for her re my health or my inability to lift her etc. I will sleep well when she goes to God because I know I have done all I could for her and dad. Those who do nothing are the first to throw stone. They are the ones who live their lives only unto themselves. – Diann P.

My moms care is taking its toll on me, physically, emotionally, spiritually. It’s difficult to say the least. – GG W.

When you keep anyone you are caring for in your home it engulfs you. I have had the greatest caretakers in for Mom. We are truly blessed for that. It’s my time now to live. I have a world to conquer before my last breathe is taken. Address the problems and run it like a business but remember you can only run hard for a few years. Then it’s time to make this decision. Best of luck! – Diane B.

Many families have no choice. We should not shame people who are at the end of their ability to caregive. And sometimes when people get to this point the care at home is awful. I have seen this many times. I understand care in nursing homes and assisted living facilities may not be good but sometimes there is just “The end” to the ability to caregive especially if the care recipient is violent or doesn’t sleep. – Jeananne E.

Social isolation

I think keeping a loved one at home after decades of illness is not good for the loved one or caregivers. It sets everyone up for injury, undue chronic stress and most caregivers are physically incapable of the job. The whole family should matter not just the sick person.

Keeping the individual at home sets everyone up for extreme social isolation cutting them off from services and finding friends. Nothing like group depression to compound issues. If you realize the family member has deteriorated beyond the point you can safely care for them, bite the bullet.

That said, I believe most families are deterred by what they see as high costs and that once the family member runs out of money, he’ll be evicted and back at home. – Angela M.

Your safety

I promised that for both of my parents.

But I did have to put my dad into a nursing home after years of caring for him at home because he was becoming too violent.

It’s a horrible feeling when you have to physically restrain your father because he is trying to kill you. I dealt with his verbal and emotional abuse for years but on two occasions he tried to end my life due to the demented state he was in.

I still care for my mom in my home. – Lorne S.

My MIL will cuss you, hit you, and throw things at you! She would stab us if we didn’t hide all the knives. – Vickie B.

Your health

Sometimes we must make decisions that are difficult due to our own health or situation. Do the very best that you can with love. I do care for my mother at home, but understand if one cannot. Only one who has been there can understand. – Phyllis M.

I used to visit the “Old Folks Home” on my way home from elementary school. I promised my Mom she would never have to go there. It was like the dog pound. I quit working and took care of her, by myself, until she passed at age 94. Her dementia took a toll on me that will last all my life. – Cherie H.

I know I can’t change a diaper of a 230 lb woman for the next 10 years while working and raising my daughter. – Jennifer G.

It’s not abandonment

“Abandoning” is the key word here.

When your parent(s) go to live at assisted-living or nursing home, visit/call them often. Then, you aren’t abandoning them. – Kristi W.

My mom is in assisted living 3 miles away. She has her own room. I take her to all of her doctor and dentist appointments plus we have her over every week for a break from her home, to go to church with us, and have a family meal. I also buy all her clothing and personal needs items plus clip her fingernails and bring her to get haircut. She won’t let the aids cut her fingernails. She wants me to do it. She is able to live out her life there even in hospice. Since she is so close we will be able to be there all the time anyway should that time come. – Jeannine G.

You can not risk your health way of living or sanity to take care of a parent. If they were in their right frame of mind they wouldn’t want you to. Take care of yourself and visit often. Take them out on outings if their health allows. – Renea L.

The bath time struggle

The bath time struggle

It’s a pretty common problem: the person you’re caring for is refusing to bathe.

Here’s advice from other caregivers on how to keep everyone clean, safe, and happy.


What’s normal to them

We have to remember that more than likely “back in the day” your father did not bathe except for perhaps once a week for church/synagogue time. Encouraging cleanliness is not easy, but perhaps sponge baths are the best hope for now. – Marie N.

The feel of the water

[People] with sensory processing disorder struggle greatly with baths and showers because they don’t like the feel of the water. It’s not uncommon for anyone of any age to struggle with SPD, especially the elderly. – LaKea H.

Making them comfortable

Identify something special to them — might be a food treat, an outing, a special visitor.

For my mom it was having a fire in the fireplace even when it was warm outside. She loved to sit in front of it and so it was great to start the fire and then she knew when she got out that she could sit and warm in front of it, I bought those 4 hour logs.

Warmth is very important — remember how you would warm the room for a baby’s bath. We have to remember that it is a bath they likely remember not a shower.

  • For women lavender soap is soothing. Or their favorite perfume from years past.
  • Perhaps get some Old Spice for older men and put some out in a bowl to the smell is in the warm room. Many older men used to use Old Spice.
  • Never spray the water on their head or face.
  • Let them do as much as they can.
  • I agree with letting them start with washing their hands or face with a cloth.
  • Having a secure and easy to use bench to sit on makes it less scary.
  • Wear something you can get wet. Have plenty of towels and mat because water will be everywhere.

Make this difficult time a sweetly speaking quiet time. We caregivers have to acknowledge bathing is often difficult but not a battle of wits or strength. A shower can be weekly and bed or sponge baths in between. Just making sure the personal areas are really cleaned to avoid rashes and breakouts and skin breakdown. Finally, the person might do it easier for someone else. If so let the other person do it. Even if you have to pay $20 a week to an aide it will be worth it. Some aides will come in just to do a bath. – Jeananne E.

It is a difficult situation, but once or twice of having the bathroom nice and toasty warm with the bathwater and all grooming necessities in place, it was easy to take my Dad by the hand andassist him. He did always feel much better afterwards and it soon grew (in that stage) to be my responsibility of getting him in there.

Sincere encouragement and patience are key in hopefully gaining the needed level of cooperation. Depending on what meds your patient or loved ones are under the influence of can be a determining factor as well. Valerian Root (a natural supplement) helped to relax my Dad. Don’t use it unless consulted with Dr. if other meds are administered. Best of luck and love to all under these circumstances. I know it is not easy. – Vicky H.

Ease your way in

Don’t say bath. To the elderly it’s allot of work.

Just let’s wash your hands and go from there. That’s what I did with my Mother while she was walking around.  She’s in a hospital bed now and we use the same words. We never say bath. She says I just took one.

So we now say we’re going to wash your hands. And then go into full bath mode. After its over we say doesn’t that feel great. She agrees and takes a nap. – Diane L.B.

Use bed bath products & wipes

In my case I used bed bath products. Most can be found at local pharmacy stores. Wipes, no rinse cleaners, shampoo, buzzed off hair all make things easier. Baby wipes for sensitive skin are good.

It’s a struggle

Oh how I feel Your pain! My Dad was the hardest. He would just cry cause he didn’t think it was right for me to give him a bath. We struggled but got it done. My Mom on the other hand is well something else, but we manage. They even admit they feel better after.

Adult disposable wipes are good, too, when the struggle is real. – Pat S.

It is literally IMPOSSIBLE to get my MIL to bathe! She will cuss you, hit you, try to bite you, and cry, like you are trying to kill her or something. Nightmare! – Vickie B.

Some days I lay on my bed and cry after doing it because I know it’s a physical demand from her and it’s also one for me! – Kellye H.

My Mom wouldn’t bathe. For 9 months she refused! I have hospice come in now and they give her a sponge bath 1-2 times a week! She’s mean — curses, hits, and throws her cane or even her walker at me! I try to help her…but all I get is cursed at or hit. I just walk away! It’s hard. – KJ

This is what caregivers want in 2017

This is what caregivers want in 2017

The lives of caregivers rarely rely on the calendar, they go on the schedule of the person we’re caring for!

Still, the beginning of a new year is a time for reflection. Here’s what our community is planning on doing this year…and what we’re hoping others will do to help us.

What are we hoping to do in 2017?

Find one week to do what I want to do when I want to do it

Take my caree out to more fun places

Help my caree to be stronger and more independent

Continue to just be…and be thankful for each day

Have more patience

Find time to be creative and make my art

Laugh more

Create and maintain healthy boundaries

Make peace with my caree’s illness

Be more active now that I am no longer a caregiver

What do we hope for all caregivers in 2017?

Lower insurance copays and lower medication costs

Better hospital discharge planning

Refundable tax credits for caregivers, like child care credits

Support from Medicaid and Medicare for in-home care

Family caregiver training

Regular respite resources covered by insurance

Social Security contributions for time spent as a caregiver

Additional in-home care aid hours covered by insurance

More volunteer respite resources

Tax deductions for mileage to and from medical appointments

Meals delivered for disabled and ill carees who are not elderly

Assistance with household cleaning and maintenance

Can caregiving lead to PTSD?

Can caregiving lead to PTSD?

Most people associate PTSD with veterans of war, but you don’t have to be a soldier to experience this condition.

The NIMH defines PTSD as ‘a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.’ When people experience a traumatic event, it’s common to be impacted by it with a range of emotions. People with PTSD don’t recover from this initial trauma. It doesn’t have to be triggered by a ‘dangerous’ event; many people experience PTSD after the death of a loved one or another emotionally challenging experience.

Risk factors for PTSD will sound familiar to family caregivers. They include:

  • Living through dangerous events and traumas
  • Seeing another person hurt, or seeing a dead body
  • Feeling horror, helplessness, or extreme fear
  • Having little or no social support after the event
  • Dealing with extra stress after the event, such as loss of a loved one, pain and injury, or loss of a job or home

You can learn about the symptoms and diagnosis of PTSD on the NIMH website.

If you think you may have PTSD, talk to your family doctor. If you aren’t comfortable seeking treatment, there are still some first steps you can take. Reducing stress through exercise and seeking out comforting situations can help you feel more secure. Get support from your friends and family, especially by letting them know what situations trigger your symptoms. Try to be realistic about what you can do each day, break up projects into small tasks, and accept that you can’t do everything. PTSD doesn’t go away overnight, but it can get better.

Here’s what some of our veteran caregivers have to say about PTSD:

After caring for my husband, for 20 years, I am afraid to answer my phone, open mail, or attend doctor appointments, fearing more bad news. I just want to hide. – Lynn R.

If you sleep with one ear open, you startle easily. Loss of sleep triggered by this startle reflex, will lead to ptsd. People who fail to understand my situation don’t believe me, but thankfully medical professionals do. – Angela M.

After 27 years caring for my very vulnerable son, I can tell you that it is indeed PTSD. For a mother, the fear of something happening to your child is much worse than anything that could happen to yourself. I have an anxiety disorder and have suffered from depression. You live in terror every time you hire a new respite worker, and only trust yourself as a caregiver. Your decisions carry so much weight that some days you feel they will crush you. – Dawn D.

Being part of caring for my MIL definitely has caused PTSD. Its a complete nightmare, and now I am scared of her! She talks about cutting people and watching them bleed! I know its the dementia, but she scares the hell out of me! I have nightmares about all of it! – Vickie B.

Anecdotally, caregivers who take care of a family member who is or has been abusive are more likely to talk about suffering from caregiver PTSD.

I’m the only child in my 50’s. My parents are near 90, refuse all outside care, cashed in their life insurance policy with not enough for burial. Now there is over 12k in medical bills and they won’t call a lawyer or approve forms for Medicaid. They say no one is putting them in a home. Mom has fallen numerous times and in nursing care and Dad signs her out. To stay out of care she shifts blame onto anyone including, and most of all, me. Agencies won’t help. Doctors quit the case. AOA said it’s one of the most difficult cases they have encountered. – Jacqueline A.

I wish my mom would understand that no one wants to help her because she is a mean old spiteful monster who has alienated EVERY one in the family to the point that they don’t even want to call to talk to her anymore. But she blames me for it! – David R.

I used to think that I would ignore my stepfather who abused me, but when it came down to it…I had to treat him better than me. – Jennifer K.

I can relate to caregiver PTSD from taking care of my mother that never took care of me & Granny that raised me! – Chrissy G.

What should you do if you feel you have caregiver PTSD?

The reason you have PTSD is because you love and you care. The key to reducing anxiety is to get out of your own head. Watch your self talk. Be kind to your mind, it does not know the difference between perceived danger and real danger….live in the moment! – Dawn D.

If you are feeling overwhelmed, you may, very well, benefit from talking with a therapist or counselor. I have learned to take time, for myself, once in a while, to spend a few hours, with friends, or even just go for a ride. I feel guilty, for even smiling, sometimes, but we have to take care of ourselves, and find ways to keep our spirits uplifted, while we care for others. For what it’s worth, I would advise you to, whenever you can, do something special, for yourself, even if it is a meal out, a movie, or just something you like. Try to interact, in a positive way, with others, and rejoin the human race. You are entitled to happiness, and, your [loved one] may even want that for you, as well. – Lynn R.

Some comments have been edited slightly for clarity and grammar.

Dementia training for caregivers: is it important?

Dementia training for caregivers: is it important?

The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.

Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.

Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.

One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.

So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.

I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.

Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.

Here’s what our community members have to say

The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.

One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.

I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.

I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.

I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.

There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.

I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.

I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.

Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.

I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.

I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.

After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.

Some comments have been edited for clarity and/or grammar.

Learning to forgive myself

Learning to forgive myself

Do you feel like you’re doing the best you can, all the time?

No matter how hard I try, it gets to me sometimes. Love alone isn’t enough for me to not lose my cool. Maybe it should be. Maybe it is for you. (is it?). But the pressure mounts…the bills are piling up, insurance is denying pre-approved claims, the laundry, the dishes, meals to be cooked, lunches to be packed, the mortgage is late. My boss is losing patience with how distracted I am and how I’m always late.

Sometimes I lose my cool. I yell. Or I just get that tone in my voice that shows how annoyed I am. And then I feel so guilty.

So guilty and so tired. I’m just so tired all the time.

It helps to hear how other caregivers feel this way, too. That maybe it’s not great, not okay, but understandable for me to not be as good as I want to be all the time.

“you’re doing the best you can, under difficult circumstances. Try not to be so hard on yourself, okay?” Denise M. G.

“forgive yourself, for not being able to do the impossible and for your very normal feelings. Those are feelings of frustration and they do not lessen the love you have for your parents…I had assumed I had to caregive alone, but then I found that there had been people I could call on for help all along. I should have spoken up.” – Nancy L.

“The hard truth is you can only do as much as you can do. It is terribly hard for us to accept that we cant fix it or do more more more. The best and most that we can do for those we love and care for is to love them and do what we can within reasonable parameters. You are giving them all that you can and you love them you have to accept that.” – Barbara F.

We all lose it from time to time. Whoever says they don’t probably doesn’t even know they did. Yes, Forgive yourself and move on. Longterm Caregiving is the hardest thing ever to do.” Diane L.B.

“Forgive yourself…..it happens to all of us more than we would like others to know! Being tired and stressed gets to the best of us and few among us are saints…we all do the best we can and just keep going!” – Micki T.

How do you keep your cool? And how do you forgive yourself when you lose it?

Stop telling me to take care of myself.

Stop telling me to take care of myself.

Self care — it’s easier said than done.

We’re always being told we should take better care of ourselves, but we rarely get the help we need to actually do that. Here’s how caregivers feel when they’re told they should put their oxygen mask on first:

Sometimes it feels like another criticism thrown at us. Yes, self-care. How dreamy that vision is. How easy that is for others to tell us that is what we need when we are already acutely aware of it. What I really think I would love to have and what I really think would be the most “self care” mindset…is having or knowing that someone ELSE is going to take care of me for a few minutes, even maybe take care of a task, or take one of my responsibilities off my hands for a little while. – Cathy S.F.

We all know we need to take care of ourselves. This is not news to us as caregivers yet everyone who offers this advice to us can’t seem to offer how to do that when the choice we have is “take care of me or take care of our loved one”. I’m going to choose my loved one every time. I think most of us are in the position that if it isn’t ME providing the necessary care, it’s NO ONE providing it and that is just not an option for our loved ones who require total care etc. We do our best to care for ourselves but it’s literally impossible to take time away from our loved one to do so…It’s not noble or martyrdom, it’s just reality, a fact of our lives. So we do our best each day, listen to the unhelpful “advice” from people who will never “get it” until they are in the same position, and continue to find moments in our busy days for our little and glorious bits of self care (while still taking the best care possible of our loved ones 24/7). – Kelly D.

Taking care of myself is looking for the best options and making sure my loved one is safe so I can sleep at night. Trusting others to help and care while looking for what other options are out there to help. The closest family is 10 hours away, so no family meetings or help. I don’t have the answers but I will continue to fight and learn. I am not trying to be noble, I just want what is best so I can sleep. – Julie D.

The suggestions are simply not doable for a lot of us – especially when you ARE the only living family member left, when you are already suffering from a debilitating illness yourself, when you can’t even take a walk around the block because there is no one to sit with your bedridden family member who cannot help themself and constantly has emergencies, etc. Way to put more unrealistic pressure on us that we must be doing it all wrong. It is what it is! – Lemia L.

via Facebook

Thanksgiving Live Chat, 2015

Thanksgiving Live Chat, 2015

We know that not everyone can sneak away to a keyboard in the middle of a day, much less on a holiday.  Yet we also know that connecting back with your community can be an important boost to your spirit.

So on special days like this, members of our team – Adrienne and Paul – will be checking in on our group chat specially focused for this Holiday.   The live chat is a regular feature of our site.  For Thanksgiving 2015, we’ve added a new chat room called the “Thanksgiving Check-In.”  We want all our caregivers to have an opportunity to give thanks in a new way.. but supporting each other; by telling our own stories and by acknowledging the unique stories of others.

To access the chat, just log in the TheCaregiverSpace.org and click into the side bar on the right to pick the chatroom.

If you want to leave the chat window open in the morning, and come back when the pies are cooling you can maximize the chat to it’s own window.   The graphic shows you how.

Whether you can only break away for just a second, or you have a longer span to relax in between dinner courses, share part of your day with us.

Log in to TheCaregiverSpace.org and join us in a rolling, all day chat.  Thursday, November 26th, 2015 – Thanksgiving Day in the USA… Take a minute just to say “Hello” or hang out to support your fellow caregivers.

Become a home care champion

Become a home care champion

America needs more caregivers for our rapidly aging population, but we don’t provide them with a living wage or adequate workplace protections. Low wages lead to high turnover and poorly trained staff. Stressed out workers come to work sick because they have no health insurance or sick days. Workers are less reliable because they can’t afford reliable transportation or childcare.

Many caregivers make less than $10 an hour — meaning they’re impoverished, even with a full-time job.

Learn more about Fair Pay for Quality Care on the North Carolina Justice Center. Keep reading to hear from family and professional caregivers who are struggling to make ends meet.

Professional caregivers

I was an in home caregiver for 4.5 years. While always living frugally I always had to have a roommate. My income was not consistent due to the eventual passing of clients. It would take some time before I could acquire a new client. In the interim my check would drop dramatically and I would struggle to survive. How much is competent and compassionate care for your fragile loved ones worth? Minimum wage? I think it’s worth much more. – Judy H.

I’ve never understood why caregivers make as much as someone who works fast food. I’m taking care of a life. – Donella B.

I am a professional CG and I work 60 hours a week and I spend 10-12 hours a week in traffic. People think I am a bad mom for working so much because I do not get to spend much time with my son. The reality is that I wish I would spend more time with him but this job does not pay a decent wage so I can afford to work only 40 hours a week. People assume that because this is a job that requires skills and continue education, lot of knowledge because of the nature of the people we work with (vulnerable adults) we make lots of $$$, the true is most caregivers work very hard but they are at the limit of poverty, they are sleep deprived and their health is poor. – Andreea S.

My son is a home healthcare worker and a good one. He says that his company has to hire the worse people because of the low pay. – Marty C.

My mother pays a fortune to live in a memory care alf but the caretakers themselves don’t seem to make much money, some work two jobs unless they are nurses or administrators. – Gay R.

The US only recently extended basic workplace protections to over 2 million home care workers. Help make sure these protections are enacted.

Family caregivers

Family caregivers should be paid. Informal caregiving is the largest part of long term care. Other countries pay informal caregivers a living wage. It can be done. – Jeananne E.

It makes no sense to me that I should be in danger of losing my home when my IS passes, or starving to death or letting my own health go to hell because Ive had to give up any income I had in order to take care of him. Family caregivers deserve to be paid, same as homecare providers. We lose everything over the course of our loved one’s illness. – Lona S.

Financially, it is devastating, not only at the time of being a caregiver, but will catastrophically affect the caregiver financially for the remainder of their life. Prospective employers don’t care about the reason for the gap in employment history, nor do they consider the skills, knowledge, or work ethics involved. The IRS gives tax credits on so many things, but not on the most important thing… caring for life. – Dawn K.

We need to get louder and stop feeling like ‘oh, it’s out of love.’ Of course it is, but do we need to lose everything out of love, too? -Cinnamin M.

Use the Eldercare Financial Assistance Locator to sift through the maze of programs to provide financial assistance for eldercare. Then contact your elected officials and let them know you need more help.

We’re in it together

I am currently using a health care agency that sends a home health aide for my mother. I have left my job to care for my mother, but needed additional help. The problem is that these agencies charge $20/hr, which is high. However, the aide only gets paid $9.00/hr. These agencies are big business that are capitalizing on the elderly. Pay these caregivers more and make a little less for the business. I regard these jobs as very important. We are entrusting them to care for the people that mean the most to us. – Josephine F.

I’ve seen in the past [families] who can’t afford to pay much and only hire someone for a few hours and then leave them home alone the rest of the time. The whole thing is a mess. – Tracy T.

I’m a caregiver for my husband and CNA money isn’t that great. I can make more as waitress. – Debbie T.

Why would anyone NOT want to pay (handsomely) those that care for the ones that we love most? – Cherie R.

Social Security, Medicare, and Medicaid help keep seniors out of poverty and in their communities. Sign this Caring Across Generations petition to urge your elected officials to support these programs.

Some responses have been edited. You can view the originals here.

Is it possible to have a significant other while taking care of your parents?

Is it possible to have a significant other while taking care of your parents?

Many people put their lives on hold when they first step into a caregiver role. That’s fine for short-term caregiving, but putting your life on hold for years or decades means a life unlived.

Finding someone that fits into the lifestyle is difficult but not impossible. I found mine, just took 4 yrs lol we are still strong and loving one another 8 yrs. He is a home body too (perfect as they get). – Donna Marie B.

I had tried dating a few men during the course of taking care of my Mom and they were either too needy, jealous, or did not understand. Deciding not to date eliminated dealing with any of that and just focus on her and what she needed. So it’s not impossible, but finding that one person who is willing and able to not be 1st but maybe a close 2nd and understanding of your caregiving job is like finding a pearl. They are very rare. If you have found or find that person hold onto them. – Michelle R.

I tried [to date]. I take care of my mom, and she gets so upset thinking that I will meet someone and leave her that she ends up in the hospital if I go on a date. I’m not exaggerating. So, I don’t date anymore. I’ve never married or had children, never had a LTR, and I have to let go of those dreams. My mom doesn’t really like me to go out except to grocery shop or to doctors. – NC L.

I just found mine. It’s only been a little over a month, but he is so understanding about my situation. – JoZena G.

I’ve been a caregiver for my Mom for about 10 years now, and have had zero dates in that time. Besides not being able to get out much, I’m afraid I might also slip back into being almost painfully shy around women. – Ed R.

I am a live-in caregiver for a lady and have no time or means to meet any body. It’s a 24/7 job. – Karen P.

I’m the youngest of four and at 47 have given up hope of meeting anyone again, either. I was in an abusive relationship, was always accused of caring for others more than her. She’s a chronic alcoholic who when sober (rarely) was fit and able to look after herself and hold down a job. Meanwhile, I was caring for my niece who is now 36 and has a brain injury, my Dad who passed away about a month ago and I am about to officially take over care of my Mum who totally dropped her bundle once my Dad took a turn for the worse in May and she is not able to take care of his affairs or her own. Somewhere amongst that I lost myself. My siblings won’t speak to my niece or my Mum, who tells me she needs me and I am better off alone after the last one. I kinda don’t blame her for that. I have multiple physical disabilities and PTSD due to her actions. I feel so alone and wish there was somebody out there who would care for me and my ‘baggage’ as my ex called them. I call them my family. My fault is I love and care too deeply and get hurt. Some people are so cruel. Something I will never understand as long as I live. I care because to the core of my being it was what I was bred to do. It’d take one very special person to lure me away from doing what I do out of love. – Beth C.

I just never tried to find a husband as I’m to busy with taking care of my two elderly parents suffering from Dementia. They always acknowledged that my being single was the reason I was/am a 24/7 caregiver to them. But it would break my heart if I felt my parents wouldn’t support me finding happiness. – Janet S.

I sacrificed my college choice to help take care of my Father when he suffered strokes. He passed in ’03. Then I vowed to always care for my Mother who passed 2 years ago. Almost 10 years after my Dad. I sacrificed more than just college in the process, though. I didn’t realize it at the time, but I was falling into a comfortable trap of not getting out to meet people and got used to not dating. I had squashed that need for so long that I let loose after my Mom died. I still would prefer to be out instead of staying home but its not as bad. Now I’m 44 years old with no kids or husband to speak of. Yes, true, my choices. But given the circumstances of being an only child, they were choices I had to make a certain way. I would never do anything different either. I’m not complaining, don’t get me wrong, because in a bittersweet way I have my life back, but it’s without my best friend in the entire world, my confidant, my soul mate — My Mom. And it just so happens that now that I do have my life back I have no one to share it with or no little ones to pass the amazing lessons onto that my amazing Mother taught me. – Michelle R.

Even for people who are in a committed relationship, maintaining a relationship takes work and time. Caregiving brings some couples closer and tears others apart.

It has definitely brought my husband and I closer – a new dimension to our relationship; first his mom lived with us and now, we have been caring for my mom under hospice for the last year and a half. Precious moments! – Lemia L.

Trying to take care of two parents with no siblings, turned down for medical assistance, has taken a huge toll on my relationship. – Jacqueline A.

When my mom was diagnosed with ALS, my husband (of 14 years) said as long as I didn’t forget about him, he didn’t have a problem with me taking care of her on the weekends. It only lasted for 2 months, as she passed away very soon after diagnosis. My dad was a mess, so I helped him as much as I could, being an hour away. 14 months later, he asked for a separation. Which worked out, as a year after we separated, my dad was diagnosed with FTL dementia. – Deborah C.

I cannot begin to tell you the strain that categorizing has put on my marriage. I would like to just be able to go out with my husband without having to use subterfuge. Our lives…our privacy…are gone. It is what it is. We are trying very hard, but it is indeed the hardest thing that has ever hit our marriage.- Beth S.

Are you ready to give dating a shot? Here are Allison’s tips for dating as a caregiver.

Clearing out the house

Clearing out the house

My mother has recently gone from taking care of my great uncle to handling the paperwork and selling his house. He was meticulous and spartan, but we found his wife’s perfume, his grandfather’s pistol (an antique more than a weapon), and other small sentimental items tucked away in his bedroom.

Most people have more personal items than he did. It took months for us to sort through my other great uncle’s things (some of which are still in boxes in my mother’s basement, nearly 15 years later). Bob wrote about the process of going through and finding new homes for Annie’s things and it got quite a reaction.

Going through people’s things after they’ve died or become completely incapacitated can be a very emotional process. Here’s what our community had to say:

Holding on

Very unexpected things become extraordinarily precious. The surprising nature of grief takes getting used to. – Susan G.

It has been 6 months since my husband passed and I still cannot bring myself to go through his things. – Susan B.

[It took] 7 years [to go through belongings] here. My mom collected so much and she had items from other deceased relatives. Finally going through it all. Started with 92 boxes. Down to 20ish. One day at a time. – Diane D.

It’s been 19 months yesterday since my husband passed and two tears since my daughter passed. Still can’t go thru the clothes and personal belongings. I have donated his bed, wheelchair and numerous other things to charity. – Marie D.

My son passed 4 years ago, I still have all his belongings, except his wheelchair and hospital bed, that was donated to someone who needs it. – Trish M.

I have what I call the ‘Abby closet’ for my daughter. Moving everything into there was difficult, but necessary. I open when I need to, but it’s still pretty painful. Still have all of her meds, and even the backpack that hung on her wheelchair still has the belongings in it. Have no idea when I will go through all of it, not anytime soon. It’s not even been two months, so I’m sure that’s normal. – Carly L.

We all deal with a passing in different ways…personal to ourselves. Everybody directly involved or not should allow one another to take their own time with dealing with a death. Rushing or being forced to part with special belongings may cause irreparable personal damage. We are all different. We all need to show one another some empathy and wait until all persons concerned are ready to part with belongings. If that day does not come… then we need to accept that that is how it is going to be. – Janette C.

I could give away most of my husband’s clothes except his favorite t-shirts and hats. His other things are still waiting for me to let them all go. Final goodbye to everything that was connected to him is the most difficult. Getting there very slowly. – Elaine W.

One year since my favorite uncle passed and I still have his stuff…can’t bear to let it go. – Kathleen S.

Too busy

My house is full if boxes of my mom’s stuff. I even have a storage unit i pay for every month. And she is still alive. She had to move to board and care. I had to keep working to take care of her. In the meantime I feel like I am living in a storage unit. – Karen G.

Feeling guilty

I lost my mom 6 months ago, I am having trouble bringing myself to go through her stuff, everytime I try I feel as if I’m throwing her away. – Rebecca S.

Couldn’t bear the loss of a parent more so a spouse. I still keep their things and place as they were to this day. Feel like i’d lose them completely if i disposed or hid any of their things… – Renato T.

A source of comfort

Justine made a quilt out of her husband's clothesI think that whatever comforts you is ok. If your husband’s things stay where they are forever, it’s ok. It’s about what you need, not what anyone else says or thinks. – NC L.

It has been 5 months since my husband passed…I still wrap myself in some of his shirts for comfort. – Linda H.

I lost my husband in January and I still have to keep his clothes in the closet so I can put my face in there, smell and feel his clothes. – Susan K.

I had quilts made for my brother and me made out of my father’s clothes. – Linda S.

Justine made a bracelet out of the buttons from her husband's shirtsSome ideas I found to be quite therapeutic. I had a quilt made out of my husband’s clothing. Another idea is to make jewelry out of the buttons. – Justine C.

Family complications

I think what makes it harder, is a family member, who has not been around to help with the caregiving, decides they want and deserve to have whatever they want, out of the personal belongings of the deceased. – Leslie J.

When my mom passed away all H— broke loose — after spending all my time going through the rest of a storage container and boxing up her things for auction (she lived with me her last 4 years), some of “my family” decides they don’t want anything to do with her personal things — they didn’t know mom at all. Although not how should be, her things meant the world to her (and also her family meant alot to her, too) — hopefully soon everyone will get their share and they can move on with their lives. – Sherry L.

Some people want to get everything over with quickly and forget. They think that will be easier. – NC. L.

Helping others

If you donate the items she “lives on” thru the person using it. Clothing can be a “gift” to a homeless shelter, salvation army, etc. – Elaine D.

Finding your own way

Whatever is in your heart is how long it will take. Be kind to yourself. The heartache does not go away. It does not get easier. You just gain coping skills to accept and move on as they would want you to. In your own time! – Diane D.

A thank you to our hospice carers

A thank you to our hospice carers

October 10th was World Hospice Day. We asked our community how hospice helped them and their families.

This is what they had to say:

Thank You! In a world, fearful of death and dying, hospice caregivers, understand the journey in a way that other healthcare professionals don’t. I am deeply humbled and extremely grateful for all that they do not only for our sick and dying loved ones, but all that they do for us, the family caregivers. If it weren’t for the love, compassion ,wisdom and tenderness of my mother’s hospice team, I would have given up a long time ago! – A. Angeline H.

Hospice was a Godsend to my family…they helped me survive! Thank you to all the special people who work in hospice care. – Karen D.

The hospice aides we had when my grandmother was sick from Cancer where nothing short of angels sent to help my family through the hardest thing we’ve ever been through. They saw us all at our lowest, darkest times and helped us make it to the other side. Thanks to all hospice workers out there, you are truly the angels who walk amongst us. – Melissa T.

Hospice has been a true gift to my family and many other families we know. Special people to help us all through the transitions of life. – Theresa A.

Hospice is a miracle! We had hospice only for 1 afternoon for my Mom and it truly was a blessing for her and for our family. After I retire I would love to do some volunteer hours to give back what I gained. – Ann B.

Hospice has helped my family though all my grandparents deaths. The one that hit me the most was my grandfather and they were tremendous! I got to know one of the hospice angels when my grandmother passed she became one of my grandma’s friend before she passed. Thank you so much to all those that are a part of hospice. – Caitlin C.

Hospice was by my family’s side when my mother died from cancer. They were blessings from above. Thank you for doing what you do everyday to make someone’s life more peaceful and more comfortable as they spend their last days on earth. Thank you for being there for the families. Teresa B.

My mother passed away in 2013 and was under hospice care for 11 months. I am not sure what my husband and I would have done without hospice. – Erin. D.

Love and prayers for all Hospice caregivers! You were truly our families Angels as we cared for my dear mother as she fought cancer and entered Glory. I never dreamed I’d be in that situation and have the privilege of caring for her until her last breath. Thank you! – Brenda B.

Hospice was a blessing in our family when we need it most. – Angelica L.

It takes a special kind of a nurse to do hospice care…Thank you…I will forever be grateful to those nurses who took care of my mom. – Isela C.

The hospice care nurses were such a blessing to our family when my Mother-in-Law grew terminally ill. When she passed Dec. 7th last year, I felt as if I had not only lost her, but our hospice care family. They become a part of us during those trying times. – Lisa D.

The wonderful nurses and volunteers at Hospice were there when Momma and our family needed them. Their care allowed us to give her the only thing she wanted. To be with family the last few weeks.
Thank you. Thank you for helping me keep that last promise. – Dodie G.

Hospice services have saved our family many times in many States. My grandson has been a hospice patient at home for over 3 years. The doctors, nurses, chaplains, are compassionate and selfless. Volunteers and donations are vital. – Pam D.

Thank you to the hospice people that guided our family through the death of my husband. They were a Godsend. – Linda G.

Thank you to all the hospice caregivers who have helped us through the pain and apprehension as we watched our loved ones going “home”. I can never thank you enough for the kindness and care that you have shown not only for my Mom but for us as we stood watch over her. – Peg W.

Hospice was such a blessing for our family. They truly are angels ????. Without them our unbearable journey would have been so much worse and i love that they follow the family for 18 months after a loved one’s death. – Dawn B.

Two times, my dear Mom and Dad, and I will never be able to thank Hospice enough. Caring and compassion when my family needed it most! – Karen M.

At first I was so upset and so reluctant to have them. I could not accept that my Mom was passing. I took her to the hospital the first time I had them and dropped them. She just got so sick and she wanted to go to the hospital so I took her. We had had hospice for about a month that time but they was so good and helpful. But the second time after she came back home I had them back and they sure was a blessing. My Mom passed away in July of this year of Colon Cancer. Her last couple of days was at the hospice house and it was so nice. They gave her the most beautiful send off. When she passed they put this beautiful quilt on her and they had her fixed so pretty and they let us stay with her as long as we wanted. When they carried her out they played a song of our choice it was so beautiful. The hospice house was beautiful and the workers was all so nice and caring. We had family coming in to visit with us and Mom at 2 am and they never said a word. When my Mom passed they was 35 people there with us. It was all so beautiful. I never could have made it that beautiful for everyone here at my house. Im so glad that I decided to make her last days be there. I will never forget it. – Ann E.

Thank you to those who choose to be hospice caregivers. I was very humbled when my uncle and mother-in-law were cared for by such compassionate teams. So grateful. – Jane P.

I am humbled to be a part of the Hospice family. Hospice is about living every moment to the fullest. – Yolanda R.

Hospice workers were absolutely great helping me through the last days of my Mom and my husband. They have complete compassion for the family. They all deserve a halo. – Lou B.

I don’t know how we would have gotten through my Daddy’s last few months without Hospice. It’s been 21 years since Daddy passed. Hospice was there whenever needed anything. These people are truly angels. – Liddie T.

Hospice helped me with the death of my wife. There are wonderful people who volunteer to be there day after day, seeing nothing but death, but make dying easier. They deserve all the praise we can give. – Marty C.

They are my heroes. They took incredible care of my dad in his final days. – Debbie B.

october 10 is world hospice day

You can read more messages about hospice care on our Facebook page.

Remembering & honoring our grandparents

Remembering & honoring our grandparents

So many of us have grandparents who have already passed. We each find different ways to honor their memories.

What traditions does your family have to remember your grandparents?

My grandparents were so in love. They married at 18 and were together for the rest of their lives. They’ve been gone for six years now, but my whole family still gets together every year to toast their anniversary. They’re the reason we’re all here and they were such an incredible example for all of us. – Nicole R.

I light a candle at church for my grandmother every week. – Michael D.

Before my grandfather passed I sat down and did an oral history with him. We spent weeks on it, sitting around the kitchen table talking. I learned so much about him. I edited it and we had books printed for our whole family. My sister went through all the family albums, scanned and labelled the best photos, and added them into the stories. The books are lovely. But the thing I cherish the most is the tapes. Listening to his voice is like having him here with me again. – Doris W.

We talk about our grandparents all the time. It’s like they’re still here with us. They were such warm people. They made us who we are. – Barbara D.

My grandparents died before my kids were born, but I always give them presents “from their grandparents” on their birthdays and Christmas. Each year I have them make their grandparents birthday cards and I tell them stories about them. – Deanna J.

My grandfather was a hero in WWII. When I was in high school I made a children’s book about him. Now I read it to my son as a bedtime story. – Bernadette G.

I sleep with a quilt my grandmother made me before I was born. It means she’s always here with me. – Annie K.

Every recipe I make is from my grandmother’s cookbook. – Susan E.

I found the letters my grandparents wrote to each other while they were dating. Sometimes I’ll sit with a cup of tea and read them. – Jennifer P.

My grandparents loved animals. I volunteer at an animal shelter in their honor. – Mara H.

We have a mass in honor of my grandparents each year for their birthdays. – David R.

My family has vacationed at the same spot on Fripp Island every year. My grandparents went there on their honeymoon and loved it. Now it’s tradition. – Vita J.

Every time I go fishing with my son and his cousins, I think of my grandfather. He’s the one who always took me fishing and it was what brought us together. – George M.

Constant Caregiving Requests: How Can You Cope?

Constant Caregiving Requests: How Can You Cope?

My husband is disabled and requires more assistance than some care receivers. More assistance means more requests. I’ve been his caregiver for two years and, as the months passed, realized I was being interrupted constantly. When I was doing laundry, or preparing food, or writing at the computer, he would call me. I stopped what I was doing and helped him.

All of his requests were justified. Still, I had to learn how to work with snippets of time. Since my husband couldn’t change his health care needs, I had to change and adapt. Although my solutions were simple, they have been helpful. Here are my tips for working with snippets of time.

Have a routine. A daily routine provides structure for you and your loved one. Keep in mind that you can modify your routine if it isn’t working. My husband’s daily routine begins with stretching exercises for his legs, a necessary task for health and wellness.

Plan together. Your loved one may have many time-saving ideas. Asking for input helps your loved one retain some control over a life that may seem out of control. Because my husband is a retired physician I always seek his input. We plan the day together.

Keep your promises. When my husband calls, I try to finish what I’m doing, something that isn’t always possible. I tell him, “I’ll be there in ____ minutes.” Sometimes it is two minutes, sometimes five, sometimes more. What’s important is that my husband knows I will keep my promise.

Make menus. I don’t have time to plan weekly menus, so I plan meals for three days. In fact, I’ve learned to speed shop for groceries. Often I start a recipe one day and finish it the next. For example, I cook pasta ahead of time, drizzle it with olive oil to prevent clumping, and refrigerate until needed.

Build “Me Time” into the day. I set aside a half hour for reading, or watching birds come to the backyard feeders, or emailing family members. These brief breaks re-charge me for hours. Without “Me Time” I would be a grumpy caregiver. My husband understands my need for this time and is respectful of it.

Practice Self-Care. When he was discharged from rehab, my husband was advised to join a health club and exercise on a special bike to strengthen his legs. I drive him there in our wheelchair van. While he is using the bike, I walk a mile on a treadmill behind him. In addition to being physically active, I get regular medical and dental check-ups.

Constant requests come with the caregiving territory. Frustrating as these requests may be, we can’t allow them to make us angry or impatient. We can learn to accomplish our tasks in snippets of time, try different methods, and work more efficiently. All of these things are possible. And remember, life itself is only a snippet of time.

What’s your advice to those caring for someone that’s dying?

What’s your advice to those caring for someone that’s dying?

We recently asked our community members what’s your best advice for someone who’s currently caring for a loved on that’s dying? Here’s what you had to say.

Bobbi Carducci: Be with your loved one every moment you can. Having been at the side of my mother and years later, my father-in-law, I had the opportunity to hold them as they passed. My mother saw three angels without any wings waiting for her. Rodger had a dream that God told him his job here was done. I believe them both. As hard as it is, being with someone you love and care for as they leave this earth is a precious gift.

Linda D: Let them talk, and just listen.

Elizabeth B: Listen to them when they say they are ready. Help them prepare their way.

Rick Lauber: Enjoy what time you have left with your loved one by visiting. Ask any unanswered questions so as to not have any regrets. Respect that person’s final wishes (read and understand the Will). Make plans and decisions with other family members about a parent’s forthcoming death. Keep a senior as comfortable as possible and maintain his/her best quality of life. Expect to feel anticipatory grief (expecting the loss of your loved one) and take whatever time you need to heal (grieving is a personal process and each one of us copes differently). Find a healthy means to manage your own increased sadness and stress that you will often feel at this time.

Connie R: My husband passed away nine weeks ago while in hospice. We kept a normal routine for both our sakes. I encouraged those who knew him to stop in, cried when he cried and I was just there. Each person is unique – you’ll know what to do.

Christy P: Keep them as comfortable as possible, encourage laughter, and make sure they feel well-loved and preserve as much of their dignity as possible. That’s really about all you CAN do.

Sue P: Allow them to talk about dying.

Donna ThompsonI think one tricky aspect of caring for a dying person is balancing the ‘heavy’ conversations with the light ones.  People who are dying will want to discuss their death and the meaning of their lives, but not all the time.  They will want to live in the moment and then reflect on the past.  I think it’s really important to look for signs of a dying loved one’s comfort zone in the moment and take their lead.  In a palliative situation, the caregiver is the orchestra and a dying loved one is the conductor.

Janie B: Make the journey beautiful. Play music. Cook favorite foods – the smells speak to their memories of family and of love. Light candles and talk. Fill the room with life even in the end. You must be part of the journey.

Becky T: There is no one size fits all. At the end my husband could not hear. All you can do is the best you can with what you know at the time. Most of all be kind to yourself.

Corrine C: Live in the moment try not look too far ahead. Worry steals the joy in your life. Be there to share the time given to you and them.

What do we owe abusive parents?

What do we owe abusive parents?

Every year over 500 children in the US are murdered by their parents.

In fact, that number is a low estimate. Other organizations say over 1,500 children died of abuse or neglect in 2012. 80% of murdered children are under the age of 7. Half were beaten to death. Murdering their own children is one of two crimes that women commit as frequently as men.

In the US, children who are too young to go to school are murdered by their parents more often than by anyone else.

Of course, most children who are abused or neglected survive. Nearly 1 in 3 children have been physically abused, while 1 in 5 have been sexually abused, and 1 in 10 suffer criminal neglect (CDC). Nearly 1 in 10 witness family violence (Safe Horizon). Half of the men who abuse their spouse also abuse their children. In cases when only one parent is abusive, the other parent will often permit the abuse or refuse to believe it. Half of homeless youth are running from abusive situations, many because of sexual abuse.

Children who experienced multiple instances of abuse have an average life expectancy that’s 20 years shorter than children who were not abused.

Some parents continue to abuse their children into adulthood, while others only abuse them when they are young or for a certain period of time. Other parents leave their children in the care of relatives and re-emerge years later. Or raise their children in loving homes, only to disown them for coming out as gay, trans, or marrying outside of their religion.

That leaves millions of adult children to grapple with the decision of whether or not they should provide support to their abusive or estranged parents when they become ill or elderly.

One study of 1,000 caregivers found that 19% had been abused as children and 9% had been neglected. Caregivers of abusive parents were more likely to experience signs of clinical depression.

Some people make peace with their abusive parents, but that doesn’t mean there will ever be a healthy relationship between them. As Laura B. pointed out, many of “the abusers don’t feel guilt…[they] feel the world has cheated them and they are owed and no one has cheated them more than their own children.”

Providing care to an abusive parent could be a beautiful opportunity to build a new relationship…or it could mean putting yourself back into an abusive relationship. The potential psychological cost of attempting to care for an abuser is high. Those who decide to care for an abusive parent will need to be very aware of their boundaries and needs in order to make it through unscathed. Many abusive parents suffer from untreated mental illness and substance abuse — issues that make abuse easier to come to terms with, but suggest children should stay away until there has been adequate treatment.

Survivors who decide to distance themselves from their abusers may face judgement from relatives and friends, who often minimize the abuse or insist that family ties overcome all things — even with parents who’ve raped, beaten, and starved their children. This becomes especially complicated when only one child was abused. People fault women for staying with abusive husbands and condemn them for cutting ties with abusive parents. At least states with filial responsibility laws exempt children of parents who abused or abandoned them.

After reading The Debt: When terrible, abusive parents come crawling back, what do their grown children owe them? our community had a strong response. A number of people opened up about their relationship with their parents, the abuse they faced, and how they decided what level of care (if any) to provide.

We don’t owe them anything but forgiveness. – Rene L.

My father was a massive manipulator to keep his secret life of a pedophile away from my Mom during their 50 year marriage. I don’t believe my Mom knew but by the time all this was disclosed, she had Alzheimer’s & no longer knew me, their only child. Her last lucid comment was that she didn’t want to be in the same nursing home or buried with him. I could not have him around my children anymore. He should have been in prison but I found a facility about 90 miles away that accepted him. I went every two months, met with staff & spent 15 minutes with him. I made sure he had personal items. I would recover in a couple of weeks. I had his body donated to science, with the cremains never returned. Each situation is different. I did what I had to do for my comfort level, to honor both my Mom’s and my children’s wishes & maintain my sanity. Anyone, that has to care for their abuser, don’t allow others to guilt you into doing what is uncomfortable for you. I lost family & inheritance but the secret stopped with me & for me, that is priceless. – Lynne K-D.

Parents don’t get a free pass to treat you horribly just because they are your kin. If they refuse to respect boundaries and continually make your life miserable, I say, move on. At some point, your self preservation and your immediate family’s welfare has to matter to you. – Denise G.

It is not about being bitter and angry, but deciding to not be caught up in their drama and manipulation. My son would be the one to have to suffer the most if I had to take care of them. They take your soul and stomp to pieces any beautiful about you. Why would I expose my child to such people? That would be abusing my child by proxy. – Joanna B.

Mom’s been dead three and a half years. Haven’t missed her yet. Estranged for nine years, keeping my children away from her, I went back to care for her after her lung cancer diagnosis. Boundaries, written by Cloud and Townsend, was my life saver. She hated that I stood my ground. God knows my pain. I did the best I could with what I had to work with. – Dianne E.

I had a narcissistic father who was a big shot in the city when he worked, Only my mom and I knew how he really was. Outsiders who didn’t have to live with him thought he was the greatest guy on earth. I was an idiot, I promised I would never put him in a home. I took care of him to the bitter end. And believe me, the abuse was never ending. If I had to do it again I wouldn’t. All I have is the satisfaction of keeping my promise of taking care of both my Alzheimered parents in their own home. – Hawk B.

Both of my parents passed away with in the last 2 years I did not attend the funerals and I have not shed 1 tear… when you are not believed about being raped by your sibling for 6 yrs and they live with him there last days and left me out of the will you betcha there is no love lost here. – Brenda P.

My mom favors the others but that didn’t make me love her any less..we became close when she became ill..I love her because she is my mom. – Lotomai T.

Being related doesn’t give anyone the right to abuse you, walk on you, threaten you and then expect you to put up with more and play kissy. Forgive, yes. forget…no. – Lillian F.

I recently had to “cut off” my own abusive mother because it was just to hard and to much work for me. Why do so many people, including myself until recently, feel like it’s okay to let someone treat them bad simply because they are family. I’m 37 and have tried for the longest to have a good relationship with my other when it has finally come to a point where I cannot do it anymore, nor should I have to just because. – Tanya E.

I cut off contact my mother when I left home because I had to save myself. – Jan R.

I tried so hard to [care for my parents] because I am a Christian. Even when my father said I was a mistake and that he hated me…I made sure his basic needs were met and that he was safe. I pray he asked forgiveness before he died. I had to set up a hedge of protection around my Mom, my children and myself from the evil person he was. – Lynne D.

When either of your parents abuse you mentally or physically from your early years they don’t deserve your care – Nancy M.

Just because your parents raised you doesn’t mean you have to give up your life to take care of them. You have you in life and if nobody else understands that God does. – Laura H.

I didn’t have the best parents but I did the right thing and also what the Bible said. I honored them for giving me life and forgave them for they did the best they could with what they knew at the time. That is what love is all about. Forgiveness is a soul cleanser. – Martha R.

You do for your parents out of love and concern for their well being. When situations arise that the become angry and verbally anusive then it I’d time, not matter what age to make the decision. It is your sanity that is at stake. You cannot allow them to belittle you. You must stand. We honor them. But when they do not honor you. Your life is just as important. You must honor yourself. You must allow them to have what they want. You do not have to agree. It is to much work doing you. Life is precious. Live it for you. – Julia W.

Some posts have been lightly edited for clarity. You can read the original posts here.

Want to share your experience? You can add your comment below.

For more information on child abuse:

Adult survivors continuing relationships with abusive family

Why people discount the (adult) child and defend the abuser

Why do parents murder their children?

When parents are too toxic to tolerate

Child Help: Child abuse statistics

Child Welfare Information Gateway: Child abuse & neglect statistics

When parents kill

Experts say some children are singled out for abuse

Struggling with an abusive aging parent

Why do people sexually use or abuse children?

Why do adults fail to protect children from sexual abuse or exploitation?

A risk in caring for abusive parents

The undeserving parent

Poisonous parents: Should you cut them off?

Talking about stable conditions

Talking about stable conditions

Sometimes caregiving has wild ups and downs, but other caregivers face endless days that are the same.

I know people mean well, but asking if someone with an incurable disease is feeling better wears on my nerves. Sometimes I find myself wanting to let people know that if they find a cure they’ll be reading about it in the New York Times. I’m not the only one who’s torn between appreciation that they care enough to ask and frustration that they just don’t get it.

I’m tired of that question along with “Has he had any improvement ?” You don’t get better from advanced P.D.! – Sandra T.

Sandra, I am with you. Especially from family member who never visit or offer any assistance. I am tempted to ask, “Why”? – Doris M.

How do you respond to family and friends who regularly ask for updates on someone’s condition when their condition is stable…and not going to get any better?

I thank them for asking. – Viki G.

I usually say “he’s stable” and “we’re taking it one day at a time”. – Malki S.

I welcome the question. It tells me that you care, about me and my child. I thank them for asking and move on. Since it is my adult child that I’m caring for these days and he has been just diagnosed with a rare and incurable liver disease, lots of people are asking lots of questions. – Dianne S.

I always thank them for asking. I, personally, never tire of someone caring enough to ask about my loved ones who are chronically ill. – Holly V.

I always thank them for asking and say that he’s doing well today; some ups and downs, but well today. It’s really all I can offer and I think it’s all people want to hear. – Carolyn V.

I feel like most people forget. Or because you’re not in the hospital everything is fine. I don’t want to depress anyone or anyone to think I’m depressing so I just say we’re doing well. – Marissa A.

I say she is doing as well as can be expected and leave it at that. – Sandy D.

I’m glad when people care enough to ask how my Dad’s doing and I tell him who asked about him. – Laura C.

I just say “she’s okay” what else can I say? she’s the same as she has been. – Vicki H.

say Dad is fine, the same and stable…But I sure could use a cherry pie! – Lynn V.

I just say we’re taking it day by day. We rejoice in the good days and pray through the bad days. – Lisa-Marie G.

Oh he’s ok thanks for asking me, you can stop by if you want – Darlene A.

My default answer about my mom is “She’s ok.” Sometimes I might throw in a “Some days are better than others.” – Ana M.

I have a strict Confidentiality and never respond. If it is a Close relative I refer question to primary care MD. – Rachel C.

Truth is hard to explain..and most people don’t understand either. “He’s doing okay” is all I manage to say. – Veena M.

I say she is holding her own, really no worse no better..and also say to me that is a good thing…because she really won’t get any better and I try to not let people who ask is she doing any better questions kinda blow with the wind. – Donna G.

I put the needle on the record…needle on the record…needle in the record… – Gina Z.

The cost of unpaid caregiving

The cost of unpaid caregiving

People are starting to talk about caregiving. A recent Forbes article highlighted how 40 million family caregivers in the US are putting their own careers on hold to provide unpaid care — sometimes for decades. As a result these family caregivers could find themselves unable to provide for themselves in the future.

Our community had some strong reactions to this piece. Here’s what they had to say:

Lost careers

Savings gone. My professional career went out the door. Don’t know when I get back in the workforce if I will ever make the same salary. I know I wont be able to live off social security. It’s isolation right now. Caregivers are forgotten, like vets are. When caregivers go back into the workforce, they should be given priority, because, same as vets, they gave up their lives to take care of something/someone, very important. – Donna D.

I have been a caregiver 24/7 for my 84 year old Mom who has Alzheimer’s for over 6 years now and I would do it again without a problem. Careers and money come and go, but not our parents. – Concepcion O.

As an only child, I had to quit my $60,000+ a year job three years ago to care for my mom who fell ill from an invisible disease. She was 62 when she had to quit her job of $80,000 a year because she couldn’t make it thru the day and had to stop her education (she was near completing her doctorate degree). I now need to get a job to help support us but I’m having a hard time. I’ve been turned down for jobs because people fear I’ll be unreliable because I have a sick parent. It’s very troubling. I wish there was more support for us. – Lisa C.

It is virtually impossible to be a responsible worker in a paying job and be a full time caregiver for our loved ones – in my case, both of my parents. – Julie F.

Caregiving to special needs children also predominantly falls to women who often can’t hold down employment due to medical and special education needs. – Christine B.

I’m in my late 50’s and don’t have a clue what I’m going to do to survive my “old age.” Who’s going to hire me at whatever age I am when she passes with the employment gap on my resume? – Sherry H.

I quit work in 2007 [to care for my parents and father-in-law]. I estimate that it’s cost me about 300k in earnings, not to mention losing out on 401K matches, the lost Social Security money, and most certainly a raise or two. That’s money I’ll never get back. So when people ask me why I don’t “just sell” my parent’s house and “put Dad in a home. Besides, that money should be spent on him, not you”, I tell them this is why. My husband and I are going to need that money for our future. Are we supposed to suffer in our old age because I was a good daughter? I think not. – Carole H.

I left a retail management position with benefits and took on poverty while looking out for my father’s best interests. – Ronda R.

resume gapLost savings

I have been unpaid for about 8 years now…and at 55 years old my savings is tapped out. It is devastating…and I am still caregiving. – Jennien S.

Took care of my mother for eleven years, didn’t work for some of those years, worked part time for others. Now she’s gone and I’m in my sixties and trying desperately to make up for lost time, slogging away at a fulltime job I hate when I should be thinking about retiring, but the reality is, that’s never going to happen. I don’t regret caring for her and I would do it all over again in a heartbeat if only she were here. But I wish I had been able to take more care for my own future. – Elaine B.

Ineligible for benefits

I took care of my dad for 16 years (he passed last August). I was notified by Social Security that I am ineligible for any sort of disability (should I ever need it, God forbid), until I work my 40 quarters all over again. I’m 47 now and between not being a kid and being out of the “workforce” all those years, I am having a hard time finding a job. I don’t have friends to go out with (not that I even have money to go out with) and obviously, I never had my own family. I’m having to start all over while others I know are planning their retirement. However, as much as it all sucks, I would do it all over in a heartbeat to make sure my dad was well taken care of. – Katherine D.

I took care of my special needs child for 30 years till he moved into heaven with Jesus. I then went to work as a caregiver. Looking back, I gained a lot of memories and unconditional love from my son, but I have lost a lot. I am 54 years old with no retirement. I haven’t built up SS due not to working them years. I now work and can build up SS and a private retirement (my company don’t offer retirement) but i know in the end it won’t be enough to take care of me in my old age. – Trish M.

I’m of the belief that you should be able to care for your parents without giving up your own future. It’s all fine and well to say “money comes and goes”, but you still need it to survive in this world of ours. It would be nice if someone, somewhere realized that if we are giving up everything for our parents/husbands/wives/children/siblings/friends now, WE will be the ones going on government aid in the future. That’s 40 million more (and climbing) applying for welfare at any given time. – Carole H.

While so many of us do this caregiving thing, we go without compensation which means we’re not contributing to Social Security (through things like FICA tax withholding). I haven’t worked outside the home in 7, almost 8 years now while caring for my wife. I’m in my 50’s (she was diagnosed at 54) so I’m spending what would have been my peak earnings years appearing as unemployed and I assume that means I’m decreasing what benefits I’ll get from SS later in life (if I manage to stay alive that long!). That just don’t seem right to me. – Mark B.

Unpaid caregivers worry about

I’ve been a caregiver for my Mom for years now.. unpaid. I worry about ever being able to retire. I’m also single, and there’s always that thought about what will happen if/when I need help. Then there are the feelings of isolation when people rarely come around, and they just tell you that their lives are busy and they can’t. I bet they can make time to play games on Facebook though. – Ed R.

I haven’t been able to look for work in months because mom is a full time job. Some friends can’t be bothered to check in, but they’re masters of Candy Crush on their phones. – Nilsia C.

Caregiving is valuable experience

The pay stinks, and we don’t get vacations, but it’s a very important job. And I’d like to think it’s all made me a better person for if I do find that woman who wants to put up with me. – Ed R.

Becoming professional caregivers

Caring for my mom gave me experience to get me a job as a caregiver for someone else, I have been to school and tried other jobs but it seems like once you care for someone it really changes you and you become really sensitive to the feelings of our seniors and you want to do the best you can for them, I don’t get paid much and may not qualify for medical unless I get full time hours after 90 days, but this is the only job I seem suited best for anymore. – Clare W.

I’ve had a few family members tell me I would make a good CMA. Seniors definitely need more who care… so something to do with that may be an option in the future. – Ed R.

Difficult conversations on end-of-life care

Difficult conversations on end-of-life care

Joy’s piece on her experience caring for her mother as she died at home got a huge reaction. Our community members have had dramatically different experiences taking care of someone in their final hours. Here are some of the things they shared:

Get help

My father did t want to die in a hospital, so I being a nurse kept him at home a cared for him! The emotional toll it took on my was too much! I care for my mom with Alzheimer’s now and if she gets to ill at home I’m getting major help! Not going to go through that emotional turmoil by myself again! – Vickie K-H.

There’s no shame in finding her a home in a facility. – Tamara H-M.

Problem is that *my* best was inadequate. I believe it was better than a nursing home but I was exhausted emotionally, mentally, and physically. I did the best I could but it wasn’t good enough. My mother deserved so much better. – Elaine B.

I am so relieved to read all of your stories because it slightly relieves my guilt. My husband just passed away on Saturday. He was 64. Even though he was not quite bedridden prior to his death, he still needed constant tending to and often it was for emotional reasons more than deteriorating physical ones (which frustrated me to no end). My best was also inadequate, as you state, Elaine. I was constantly tired and short tempered. I wish that we could have just spent some time talking and sitting together but household tasks left undone loomed large and there was work to go to. I now feel guilt and pain and grief. There is no better alternative in my opinion. Just the lesser of two evils. – Tina K.

It’s work, even with help

My husband and I were her primary caregivers for the past six years right up until she took her last breath. She also had home hospice, and although they were very helpful, in no way did they replace everything my husband and I did for her. It was an exhausting, emotionally draining, raw experience, but also educational, loving, and perspective changing for me. My only regret is that I never slowed down to smell the roses. I was consumed by my “work” because there was always so much to do and no one else to do it. My aunt wanted to die at home, and I’m glad we made that happen for her. I only wish we had more time for us: me and her. – Christine S.

we just lost D’s mom a couple months ago. Our experience was similar. She actually had lung cancer and declined any treatment. The doc gave her 3 months she was gone in 2. We granted her wish cared for her at home. You do not know what you sign up for never prepared for watching her suffer so. It was hard beyond words to watch this little lady go through this. We had hospice but they only visited for a few minutes twice a week. It was all of our pleasure to care for her but we will never be the same after watching this. She was such a firecracker in her time with us. But she has left a legacy. And we are too. We miss her every day and cry often. I know you do, too. – Cindy G-S.

Your best at the time is your best

Our imagination will always make us think “there could have been more.” Give yourself time to grieve and go through all those emotions while speaking power and peace into your life. – Terri B.

I’ve concluded there is no good way to die and guilt is just something I have to live with. – Elaine B.

It’s a tough road to go. My dad died at home. It was the worst thing ever. Even if you do all you can, you feel helpless. Leave it to the hospice nurses. – Heather R.

It is such a personal decision. We kept my mother-in-law home with us and it was hard but it was a real gift. I have no regrets. I hope that all of you, regardless of what choice you made for care, will come to a place of peace with no regrets. We all do the best we can with the circumstances we’re in and with who we are at the time. – Connie C-G.

There are just so many things I wish I had remembered to do before they passed, not after. to this day I think of it and even though I don’t carry the quilt like I did before I still have some days where it still bothers me. it’s not that easy to shake the feelings off and you have to be a caregiver to understand. – Becky S.

Paperwork gets in the way

And don’t get me started on the forms! You have to have CEO capabilities to track them all, let alone figure out how to fill them in. They all ask for the same info, it should be one form, shared by all who are on the elders team…Except there is no team approach in place. – Jean O.

Creating intimacy

My partner passed at home and I created a wonderful sacred space and he didn’t want it any other way…When I realized he was passing I was prepared to play his favorite music. I dimmed the lights, lit candles, held his hand and told him I love him and gave him permission to go on. I called hospice but told them wait to come. I washed him with Castile soap and essential oil. I covered him with white cloth up to neck. Then hospice came. It was so sacred and intimate. – Marisa O.

My mother died in my home in my arms, surrounded and supported by her family and friends. She gave me a great gift in her passing, peace and love and forgiveness. And hospice was wonderful, caring and supportive. – Susan G-L.

He was kissed, we held his hands, and laid on the bed talking to him or just laid there quietly. Knowing he was not going to recover, we wanted peace for him. Relief from his discomfort. The joy of reuniting with his wife who he missed so much. I have no regrets in the way he passed. We all miss him and always will, but more importantly, he is at peace. – Sherri F-N.

There’s no such thing as being ready

I thought I was ready for this but found, you don’t just get ready. It hurts no matter what but, I’ll be ok. – Cheryle R-D.

You think at our age we have experienced just about every emotion, but we were not prepared. – Cindy G-S.

My mom passed away at home which is where she wanted to be. I took care of her with help from hospice. I was happy to help her because she was my mom and I loved her more than life. She seemed happy and content but it was emotionally hard. She passed away 7 months ago and I still have nightmares. I was with her when she passed away and it was the hardest moment of my life. Hospice was so good with us but I was always second guessing myself and wondering if I should be doing more. The whole experience was life changing-I know she went the way she wanted and was so peaceful when she took her last breath but I will always have that vision in my head-I miss her so much! – Jodie S.

Know the options

I guess it depends on location, we have many options where I live. I’ve worked in healthcare my whole life and stand behind the great care provided at every facility I’ve ever worked. Hospice is a wonderful resource as well, whether at home or at a facility. People don’t realize how much Hospice has to offer, including support for those left behind. – Corrina D.

Every family and every situation is different. At my small facility we provide skilled, ICF, hospice and respite care. Sometimes towards the end family becomes overwhelmed and their loved one comes to us for their final days, sometimes they are with us for a short time before going home for the end. Whatever is going on we welcome family and do our best to provide excellent care both to the patient and their families. Hospice is a wonderful resource that I can’t recommend enough. – Laura L-B.

There are some great hospice nurses and staff out there and I thank god for sending me my earthly angels. – Sharon N.

Most of our hospice clients choose to die at home, however, if caregiving becomes too great for the family we have two Hospice Houses available. Most everyone would like to die at home but having options is important so families can be families not caregivers. – Cheri J.

Most people don’t die in hospitals

If you are “dying,” aka have a terminal illness, unless death is imminent or you’re on life support, they don’t keep you in the hospital to die. You go home, to a hospice or a nursing facility. Hospitals don’t like to keep dying people, they are too busy trying to take care of the sick. – Corrina D.

We’ve had many patients come from the hospital as a last minute admit and die within hours because the hospital does not want them dying there. – Laura L-B.

Nursing facilities can be great

The skilled nursing facility where my guy (advanced Parkinson’s disease and dementia) spent his last year and his last days was fantastic. Truly a supportive and caring group of professionals. The Hospice team was outstanding. All cried with me when he passed away. I return often to visit the people who became family to us. – Pam T-N.

Kept my mom home with us for a couple years but it wasn’t best for her. She was too isolated and as time went on we just weren’t able to care for her. In the end she lived at an assisted living home so full of care and love. She died in that place with the help of Hospice. She actually called it home so she died at her home, an assisted living home. – Peggy F.

Just because it’s not at home, it doesn’t have to be a bad experience. The places I’ve worked go all out for a family in that situation….family are allowed to stay the night/spend as much time with their loved ones as they want, the ones who have no family are often with Hospice volunteers or staff that have grown attached to them. – Corrina D.

I’ll always regret her last weeks of life, at home, with me, unable to sleep and unable to love her because I was the full-time caregiver, just wishing she would die, when I loved her — and still love her — more than anyone I’ve ever loved or will love. – S.B.

My mom died in hospice. It was devastating, but I believe it was better for her and my family…When her doctor told her there was nothing else he could do we had to make a decision. When you have no platelets left in your blood, you can bleed from very part of your body. I didn’t think I could handle that and chose hospice. I now know it was the right decision. I was able to take he outside in her bed, feed her, kiss her and hold her hand as we told her it was okay to go into the light. I miss her, but I’m glad she is at peace and no longer in pain. – Michele G-H.

My mother with Alzheimer’s is living with me. I don’t think I could live here any more if she died in my home. – Gail T-A.

I helped with care for mom and dad, thankfully in facilities. And also my sister and a friend close enough to be called sister. I’m thankful there were trained people there to help through this horribly stressful time. Even with being in facilities a large part of the care falls on the designated caregiver. – Kathy G.

There’s no one right answer

I think it depends on the situation and the assistance received where the right place is. A difficult choice always. – Cathy P.

If we had better home care options, and integrated care in general, the last two years could be dignified for the elder, and wonderful for those left behind, no matter where they take place. – Jean O.

Truly, it’s good for some and not good for others. And it has absolutely NOTHING to do with how much you care. Some people care enough TO place their loved one in a nursing facility or Hospice house because they know there will be skilled people there every minute 24/7. Some people can’t financially afford to take off from their jobs, some don’t have enough family or enough family close. There’s many reasons family place their loved ones in skilled care facilities, but after 15 years of working in them….I can’t think of a time a family did it because they “didn’t care enough.” – Corrina D.

My father and I did home hospice for my mother. She had dementia and went in and out of knowing us. My father couldn’t be in the room when we knew it would be that night or the next day. I was alone with her when she died. I wasn’t leaving that room. I doubt she knew I was there holding her hand. I had a tattoo put on my leg surrounded by violets “One Soul From My First Breath to Your Last.” She was my best friend. My friend and her siblings had their mother in hospice in a hospital. I’m not sure which is better. They didn’t have to change diapers or wash a million sheets. But I knew my Mom was in the next room the whole time. Funny thing, she thought she was in a nursing facility when she didn’t recognize us. Other times she knew she was home. – Laura S.

You know what’s best

No one can provide you with the right answers for you…if you did what you did for her in LOVE it’s never wrong. – Susanne A.

I don’t think you can judge anyone else. What they are dying from and the health of other family members is an issue too. I loved my Dad to the ends of this earth, but him being home with Alzheimer’s and Mom also having many health problems, it wasn’t safe for anyone. We do what we have to, even if it breaks our hearts. – Kelly W-P.

My sister and I can look in the mirror and know we did the right thing for our mother. – Carolyn H.

It was difficult and tiring but I would do it all over again in a heartbeat. – Christine V-B.

Some quotes have been lightly edited for grammar or clarity. You can read the original responses here.

Speech difficulties and communication

Speech difficulties and communication

Communicating can be a challenge for all of us, but it’s especially difficult when the person we’re talking with has speech difficulties or cognitive issues. Asking someone to repeat themselves over and over can be frustrating for both people…but nodding and pretending to understand isn’t a good long-term solution.

Here are tips from other caregivers on how they make communication easier:

Take your time and use hand signals if possible. I actually made a book complete with photos for a client so his other caregivers would understand his nonverbal communications. – Allison C.

Be patient. Give the individual time to process the information (small bits of info or requests are best) and then give them more time to respond. We live in such a fast paced world, we need to slow down our communication. – Adrianne L.

My husband suffered a second serious TBI he often uses the wrong words. If he gets stuck on finding a specific word for a sentence. It helps him, if I ask him, “What you do with it?” or ‘How do you use it?” For some reason this often helps the word come “unstuck.” – Chairein C.

Ask yes and no questions. – Kathy E.

White board, photos, simple sign language. Touch mouth for hungry, tip hand toward mouth for thirsty, frown and point to body part to indicate pain. – Bobbi C.

I’ve used photo books, as well. They can be made inexpensively and they can work beautifully with many non-verbal clients. Also, dry erase boards in a pinch! – Susan K.

Take it slow and look right at the person when speaking to them because if they have a hearing problem chances are they have gotten pretty good at reading lips. – Sheila S.

Have patience, speak slowly and use pictures if necessary. My 5 yr old autistic son has speech difficulties but does understand pictures. – Danielle W.

Have a laugh! Some of the best moments weve had in the midst of this challenge are when I have ‘misheard’ things or when my husband accidentally says the wrong word. Takes the pressure off and allows us to relax and have some fun moments in the middle of huge challenge and hard days. – Sharon K.

Hand signals, facial expressions, word cards, letter cards for the person to use. Take your time and listen very carefully. – Annette C.

Be patient and don’t attempt to finish their sentences for them. – Stephanie B.

Patience and more patience. My daughter is deaf & legally blind with cerebral palsy and more. Communication for us is often a guessing game between real photo cards or her iPad to communicate. Hers is all non verbal including some signs and gestures. With others with speech issues I have had to make sure other distracting audio is to a bare minimum so the patient/student can be heard and can heard me. Try to make them feel comfortable and not rushed. – Dana H.

Word salads can be a challenge but as long as you are patient you will figure out what they are trying to say. – Kimberly P.

My mother had Als. She wrote everything down on paper. with her als she had FTD frontal lobe dementia which causes confusion in speech as far as not being able to get the letters in the right in a sentence. Orange flyswatter was orner flyswaff. They have communication devices that can help if the person has the ability. At the end it was thumbs up and thumbs down. Pictures work well too if the person has the ability. – Karen W.

So many difference scenarios here. ALS, dementia etc.. With my mom I listen until the last word and if it’s crazy I repeat it and she falls off her chair laughing, me with her. Then after we laugh I ask her again. Often we can complete the thought together. – Sue L.

My wife has MS and struggles sometimes finding her words. She said one of the things that bothers her most is when people finish her sentence. The speech therapists say to let them finish on their own. It helps them find their words. – Lori F.

iSpeech text to speech app for iPhone. When my daughters can’t speak they can type it out sometimes and the app speaks for them. – Kelly C.

My sister uses a white board (write-on, wipe-off) she has ALS and has lost her ability to speak. – Karen H.

Life after caregiving

Life after caregiving

For so many of us, our old life ended when we became a caregiver. What happens when our time as a caregiver ends?

My mother just passed away and I’m at a loss. I’ve been taking care of her for seven years, my life revolved around her. Don’t know what to do. – Michelle S.

Taking care of someone is the most fulfilling, purposeful thing we can do. And when it is over, it’s a real struggle to find real purpose. First, we need to take care of the things we have neglected at home and in our own health, etc. Then ???? It’s hard to adjust, for sure, and want to find something meaningful. I have done some volunteering and just trying to adjust to “normal” but so much seems frivolous. We can sure all relate. Hang in there, everyone! – Paula D.

I took care of my father for many years.. he’s gone now. What should I be doing? I have trouble with being kind to myself, I’ve been remembering to laugh which is a big start. – Barbara M.

I have tons of things I should be doing but also feel like I can’t move forward without him. – Elizabeth L.

I try to listen to what my body and mind tell me. Some days are very hard. Even though there are many things I want to do, I find I’m not ready yet to do them. Too emotionally drained and tired. But I’m improving. Started playing piano again after many years. – Carl U.

I gave up my job in radiology to care for my husband 24/7 a year and a half ago. He passed away at age 54 six weeks ago.I find myself trying to still do for him thinking he is at a hospital waiting for me to go see him and that he is coming home soon. He was sick with colon cancer for 13 years so the last three years that was the pattern. Home, hospital for two or three weeks and back home rehabbing till the next crisis would occur. I just cannot find my way to move forward and pick up where I left off before when he was healthy and we lived normal lives. Not many jobs open in my field now either so I feel really doomed… – Julie J.

I took care of my sister for three years… Lived with her as well.. She passed away in December, and I still feel guilty, that I could have done more for her.. I find myself now, just sitting around, or watching TV.. It’s like I am totally useless. I try to keep busy, but then the guilt comes back, and the fact that I am not depended on any more… My sister was 58 when she died, I am 50… I had no help at all, taking care of her.. I have pretty much gone into a very deep depression, and really have no one to talk too, that understands… – Jennifer G.

I was with my husband, while he passed for over a yr. with no help and spent every minute taking care of him. A trip to the store seemed like a vacation but reality would slap you in the face quickly, for too long away always sent me back to him in the floor from a fall or outside sitting on the steps where he should not have been. he was smart, he knew when i was going to the store and pretended to be asleep. I was in a rush to do everything I did and sleep was a luxury. When he passed away I left the hospital and went home, I sat on the sofa and later that day I realized I had been there on that sofa alone with no brain activity of any kind. I got up, tried to think what was next and then sat back down. The next few days were a blur and my ability to think quietly found it’s way back to me. i went about the next few days still in a hurry to everything and regardless of how many times I told myself to slow down I could not. I did not know how to sleep through the night or how to enjoy anything and laughter was hard for me. I could not remember laughing. it has been a while now and I have moved on with life but I never for one day forget how hard being a care giver is and what one goes through to bring the end of a person’s life an easy one. I know now that I will never remarry because I cannot do this again. it is the hardest thing I ever had to do. To stand by the bed of a man I was married to for 40 yrs. and hear him take his last breath, he died quietly and no one was there but me and that is how I promised him it would be. Life now is really good and no more trips in a hurry for me. Care takers are a special breed and there is a place for all of them in heaven, and it it is not care taking. – Vicky N.

I took the journey with my mom for eight years and she passed away in March. I am LOST. My mom is everywhere and I miss her smile and her kindness. – Susan Z.

I’m gonna tell you what my brother told me standing @ our mother’s grave site: “you better find a way to resurrect yourself.” after 13 years in another city and state…i’m still in recovery, still resurrecting myself..Quiet your mind. Take your time…go with the process of grieving and by all means trust God. – June W.

Your advice

As much as you can and are able, focus on being kind to yourself FIRST. – Saamia D.

I’m going to start small with a little vacation, it’s a start. – Michelle S.

The best advice I can give you is LIVE! Enjoy your life! – Vickie B.

We cared for them and when they pass away it leaves an empty space. Do things in their memory, be Active in your life. LIVE, LAUGH, LOVE and CARE. – Barbara L.

Put your caring skills to good use, but this time, care for you – Saamia D.

My suggestion is – when you are ready – find something fun with a little bit of structure. I like crafts and I am also a musician. I started to learn blacksmithing. There is something about creating an object with your own hands that reconnects you with things in a way I have a hard time explaining. – Bob B.

I do artwork, I write…many things I had no time for. – Dee S.

Could you maybe do some volunteer work at a hospital? as many or as few hours a week as you can handle. it probably help make you feel useful again. and of course, it looks good on a resume wink emoticon. I was caregiver for my disabled spouse until we separated 2 1/2 years ago (later divorced :(), I was basically forced out…. have move back in with my family, get part time jobs (until I can get to full time)… but anyways, I have found that just getting out going to work (or a volunteer position), is one of the things that has helped me the most. It allows me to forget things for a few hours, to get out of myself. and helps me to be able to move forward, even if it’s just 1/2 baby steps at a time (and trust me, there’s plenty of steps backwards, too… I have felt sometimes like I’m doing the cha-cha!!) – Rebecca H.

I promised myself after losing my mother in December… I am going to live my life and make everyday count. After taking care of her the past 11yrs and 4yrs ago I quit my job to be home with her. So now it’s all about me… Making sure I stay healthy, wise, and working. Along with having a meaningful relationship since I had to put that on hold as well. So hope you find what makes you happy and worth it! – Delphine C.

Want to read the original responses? Click here for the Facebook post. Want to share your experience? Add your comment below.

When did you know it was time to take the car keys away?

When did you know it was time to take the car keys away?

We recently asked our community members to share their experiences with taking the care keys away from an elderly or ill loved one. Here’s what they had to say, from getting doctor’s orders to advice on how to do it with humor and grace!

Medical Reasons

Paula: When my husband was using his right hand/arm to lift his leg and move his foot from the accelerator to the brake, I knew it was time. MS stinks!

Helen: It’s a very hard thing to do. With my father-in-law, he was in his late 70’s, had a stroke and almost drove into the beauty shop where he would take my mother-in-law. After that, we just took him everywhere to pay bills, groceries, etc. Sometimes you have to be the “parent” and do what is in their best interest in keeping them safe.

BobbiRodger stopped driving long before he came to live with us. Medications he took for his schizophrenia could make him dizzy. However, even after 40 years of not driving he held on to his expired license and insisted he was a very good driver and could do it if only I would let him.

Emily: Mom hit a parked car and later didn’t remember what happened. That’s when I figured out she wasn’t properly taking her medication which is why she couldn’t remember. That’s also when I learned she was diagnosed with Alzheimer’s. She had been hiding it from us. She didn’t like it that I told her she couldn’t drive. When I found out that she drove again, I went to the car dealership and had a car key cut to look like her key but it wasn’t activated so it wouldn’t start the car. I secretly replaced her key with the dummy key. She thought something was wrong with her car, but she never told me because then I would know she was still trying to drive.

DonnaI knew that my Mom should stop driving when her balance became an issue together with her diminishing sense of time and direction. Mom linked her car to her sense of dignity and independence, so it was a very difficult day when she tore up her license and gave her car to my niece.  Mom knew that ‘feeling woozy’ meant she shouldn’t be driving, so luckily when the time came, it was her decision.

Doctor’s Orders

Harmony: I took my husband’s car keys when he could not move his legs quickly due to Parkinson’s disease. Our family doctor was very supportive, and I made an appointment with him to discuss this with my husband. He was able to convince Bill that he should not be driving because of the potential danger to others. It was a tough sell, and one that I couldn’t have done on my own.

Jane: My Dad’s doctor explained it to him and hasn’t been a problem since.

Desperate Times Call for Desperate Measures

Kathy: It wasn’t so much take away, but never give back. I quit riding with him when he had an accident where he totaled two cars and messed up a third. At that time, the officer said that if anyone would have been in the passenger seat at the very least they would have lost their leg…the very least. Then one day, he was trying to find me — I was about 15 min away — and he ended up in Horse Cave, KY. It took 10.5 hours round trip to pick him up. The police found him going the wrong way on I-65. Needless to say, when I got the car out of impound, I kept the keys and he hasn’t had them since.

Pat: In our little town, we were getting friend’s reports of our mom being lost in the neighborhood. We disabled the car and then arranged for a couple of mechanics to give us a “an estimate” to fix it in the amount of thousands of dollars. They were friends of ours as well and were made aware of our unique situation.

Connie: Sadly, he was found driving 90 on a curvy country road. When family members found him, he was totally lost, very disoriented and began to throw up. I hid the keys the next day. I had a talk and told him it was time, not just for his safety, but for the “other guy” on the road. I explained that his brain was “shutting off and on and unfortunately it could happen at any moment.” He reluctantly agreed. Then we would find him looking in drawers for the keys and also trying to “hotwire” the truck. Hubby finally disabled the vehicle so he could not start it. Sad, but very necessary.

Karen: My mother disappeared for almost 3 hours in one day. Just as we were about to call police, she returned home as if nothing out of the ordinary occurred. We took the keys from her that day. She never asked about driving again.

Michelle: My grandmother got lost going around the corner to a store that had been there for decades. Pulled the spark plugs. For a few weeks, she asked every day when the car would be fixed until, eventually, she forgot.

Lisa: Daddy reluctantly handed them over. He was without a car for 3 weeks while it was being repaired. When we brought it to him we did a “driving test.” He seemed confused and a little disoriented. When we got back we asked him to give them up. Later, people told us stories of seeing him all over his little town. Some were very scary. So glad no one ever got hurt! Best thing that could have happened.

Getting the DMV involved

Belinda: We had our Mom’s eye doctor send her a copy of a letter he sent to the DMV saying she was legally blind. She even had him retest her eyes to be sure, bless her heart. She voluntarily surrendered her license but still wanted to drive to the mailbox and back up the driveway. We had to disable her van and convince her a family with three children needed it more than she did. She still misses the freedom of driving herself.

Michelle: My brother had to call Mom’s doctor and he called the state DMV after she got confused with him in the car. My dad simply could not deal.

Debbie: It was very difficult with both parents (83 & 85). We got very angry calls as we removed the car and all the keys. That was 1 year ago and they still ask about the car, but they now live in assisted living with dementia and Alzheimer’s. We drive them to church and doctor’s appointments. The DMV finally took their driving privileges away.

Accidents Happen

Jackie: After a few fender benders where the only damage was to his own car, he decided one afternoon to go to his favorite lunch spot and parked in his usual parking place. Unfortunately someone else was already parked there.

Harriet: I took my mother’s keys away after we moved her from Florida to Minnesota. Mom drove by sound. When she hit something, she changed direction, and her car looked like a battle-scarred tank. We bought the car from her, which eased giving up the keys.

Cheryl: Mom had an accident – rear-ended a preacher who was stopped to make a left turn. Demolished both cars. Was taken to the hospital along with the preacher, but neither was injured. She was around 85, I believe. We did not get her another car. We kept stalling and also made sure that we drove her wherever she needed to go. She mourned the loss of her car for a very long time. Now, at age 95 with dementia, she doesn’t recall her car, but she’s still hanging in there!

Donna: Mom was having repeated “little” parking lot accidents – an accident down the street from us where she turned in front of oncoming traffic, not using her mirrors to change lanes, etc. It was time. We didn’t know how we were going to get her off the road. But then her brakes needed replacing, and we convinced her the car was not worth putting that kind of money in it…no more driving for Mom.

Tammy: Grandma Evelyn kept running stop signs.

Self-guided

Julia: He actually handed them over (82 yr), when he almost ran his car into the neighbors living room while trying to hit the brakes and wasn’t fast enough. He wanted to blame it on the meds, but in time, he found the truth before we were ready to accept that it was that time in his life, too.

Kathy: Dad gave me the car keys. He had a very close encounter pulling out on to the highway. Sent other cars into a ditch. He is 88 and it totally unnerved him. I live with him at our house and drive him to visit Mom at the nursing home. They took care of me as a child, it is now time to take care of them.

With humor & grace

Tracey: Took my mom’s car away 8 years ago for the greater good of all society. She still brings it up ALL the time.

Sally: My mom was getting all dressed up to ‘drive to church’. Morning, noon, night, winter, summer, it was always ‘time for church’. (Not that she was religious, but she was a sort of secretary to the priest in the past and was reliving those times). One day I went to pick her up for a doctor’s appointment. She was all dressed up and said, ‘you have to move your car, they’re expecting me at the church.’ I said, ‘no, there is no church today, we are going to the doctors in my car.’ I swear, we had this little conversation 20 TIMES in half an hour. Ended up going to the doctor appointment early! Lol!

Advice

Pam: Let the Dr. handle it. It’s up to doctors to report to motor vehicles about meds the person is on. Many doctors should not have a problem lifting this burden off your shoulders. I had my father’s doctor do this in 2003, and my aunt in 2007. Was so much easier with the doctor’s help.

Barbara: Do it respectfully and preserve their dignity.

Tricia: Please don’t wait! Lives depend on it, including that of your loved one. I “borrowed” my mother-in-laws car after I witnessed a stranger drop her off at home in her own car and she said she asked when she didn’t feel up to driving home from the store. Thankfully it was an honest, kind person, but it was a HUGE red flag. Speak up and act if necessary!

RickMy sisters and I collectively approached Mom and Dad to voice our concerns and persuaded them to sell their car. I recall visiting them, riding as a passenger in their car, and being repeatedly nervous when Mom or Dad failed to shoulder-check. It was a sad day when I helped to return this vehicle to the dealership where they bought it, but there were other transportation options available to them and this was certainly the safest move.

Worrying about being forced out of your home

Worrying about being forced out of your home

Community question: My grandmother has dementia and her short term memory is almost gone. We are trying to get meals on wheels in to get her a warm cooked balanced meal. She is very stubborn and lives on her own. There is a concern from family members that the social worker the meals on wheels program sends to do the intake interview will force my grandmother to move out of her house before she decides to on her own. Is this something to be worried about? If we’re asking for help for her, does that invite them to dictate what care she needs?

 

Answer by Prudence Lowe Benjamin

The meals on wheels drivers are volunteers. They will bring the food to the door, or put it in the fridge. They may look around quick if they are asked to put the meal in the fridge, and they would report a situation of neglect and abuse, but they exist solely to help people stay in their home and do not have an agenda to force people into care outside of their home.

It has been my experience that it is pretty tough to get a person placed in a nursing home unless they have more than what they call custodial needs. Custodial care is when people do not have major medical needs for skilled nursing care and mostly need good health care maintenance.

There are a LOT of services available today to help your Mom stay in her own home these days if she is able to. My Dad was able to not go to a nursing home after some pretty major setbacks in health throughout his whole life unless it was necessary for him to go into one for rehabilitation after surgeries He was able to have home health care nurses and workers come into his home. My Step mom always had a diagnosis of Schizophrenia and from time to time she would be hospitalized. She had severe rheumatoid arthritis but had no pain because she was on powerful medications, but those powerful medications also have psychiatric effects. So what kept her degenerative arthritis in check aggravated her schizophrenia. She was a wonderful woman who raised two wonderful children, and was very involved with my Father’s seven children and many grandchildren, her family and friends, and my Dad’s fishing friends. When my Father got older and his health went downhill she took care of him. She was even good to my Mother. She cleaned house for a living and her house was always clean. She would go over to her son’s and do his laundry when she visited him every Saturday, because she loved doing things for him, and she went and did my brother’s laundry when he was sick. She was always a giving person. She had cared for her first husband when he died of cancer, and before that had to leave school early to care for her family and her own Father when he died of cancer. So she had never finished school as a young person. She had always cared for family and worked.

My Dad and she were a good pair because they accepted one another’s weaknesses, and they did everything together as they grew older. She had a hard time after my Dad died. For two years my step mom still was and she began to need more psychiatric hospitalizations. She would get very confused at night and would call the police in a panic because she believed that someone was trying to break into her house to kill her, and she really believed that people were living in the attic. Everyone thought she must not be taking her psychiatric medications. My Father and she had always had all their medications on the kitchen table in pill minders they always took them along with a few vitamins. She usually cooked low fat meals, and ate a lot of salads. The drank a lot of bottled water.

Now she was becoming confused and unstable on a daily basis, and when she got psychotic enough to go to the emergency ward, she would only get admitted to the psychiatric unit for a day or two. Then the family worked out a plan for her to go to a day program at the senior center three days a week, where she had a good time, got evaluated by a nurse, got exercise, and socialized. The other two days a week she had a home health aide come in. One day on the weekend she went with her son to his house to visit with he and his wife, and Sunday was left for other people to visit or take her out or she rested. That worked for a while but night continued to be a problem with the confusion and the wandering……So after the last breakdown time this happened, she was lucky enough to wind up transferred to a geriatric acute psychiatric hospital unit in Gardner, Mass, after her short term stay in a psychiatric hospital near her home. The Geriatric psychiatric units only care for the elderly who have psychiatric problems so they get better care there. It is in an excellent psychiatric hospital. Finally as well as getting adequate treatment, the legal aspects of her care were addressed.

Her son applied for and got guardianship and power of attorney. He was able to get her into a local assisted living center where there is a section that cares for the memory impaired. It is a locked unit so that she can not wander at night. She is not happy there yet, and hopes to come home. It costs 4,000 dollars a month for her care. They made my stepbrother sign an eighteen month contract to get her in there. Her income will pay part. The family has to come up with the rest. The plan is to rent out her house to help pay for the rest of the monthly fee if she stays. This is because if they sell the house it will not help as much in the long run. I guess the money part is tricky. There is a program paid for by Medicaid (Masshealth here in Massachusetts) that helps the person themselves hire help in their home. The doctor signs a paper saying that he thinks they need care, and then they are evaluated for the care. This program helps a lot of people stay at home if they need help with ADL’s (activities of daily living). It is certainly worth researching.

I think the lesson for us all is that we should all buy long term care insurance that pays for home health care too, and we should all do it at a young age because it really would pay off in our elder years. The other thing that can be done is if family has a family meeting and everyone decides what they can do to help your Mom. Home care requires a lot of managing and it is hard to have someone come into your home, but some elders might absolutely love it. My sister did a lot of home care and had some really lovely times helping people stay in their homes. I cared for one couple who had been in their same home since they married seventy years before! How precious that was. The bottom line is that if a person is more mentally stable and comfortable at home, they will be less confused in familiar surroundings with familiar people around them. But we do the best we can and feel good about it, because the elder’s needs come mixed into a lot of other family needs as well. I think that we just have to try to make sure they get the care that we would like to have in their situation, as much as possible.

My Mother got used to caregivers in the nursing home she went to and the caregivers loved her, but I saw a very confused woman suffer a lot in the bed next to her. I thought that her anxiety level was not addressed. Anxiety causes people to suffer. For some reason, evenings and nights can be especially terrifying for some elderly people…and although I understand that much care should be given to them not being overmedicated, I also think that they have a right to be able to rest and relax when they suffer from extreme anxiety as a result of the confused state of their mind. No one deserves to suffer. Part of being in a huge nursing home is that unless your family visits all the time, you can not get the emotional attention that you need as a person. Too many times the staff, even if they are well staffed, have enough to do giving just basic care and even important things get missed. They may be sweet and always personable and loving and comforting when they are without loved one, but they have precious little time to just sit with the elderly, and that sometimes is what elders need. They just need the comfort of someone being there. Staff may get annoyed at having to work around family visitors, but family should be present as much as possible. The happiest nursing home residents and those that are better taken care of are the residents who have family visiting.

My brother sat with my Mother in her nursing home for hours each week and saved her life three times. He was with her and noticed her crisis when no nursing staff was in the room, and alerted staff, and when staff brushed her off he insisted that she be seen by a doctor, and saved her life. That is good teamwork between staff and family. You can participate in care plan meetings for your loved one to know what is going on with medical issues and voice your care concerns, volunteer in the nursing home your loved one is in, and serve as an ombudsman for nursing home residents to help achieve better care for nursing home residents. Home care and nursing home care both can be excellent care. Sometimes you can even find a doctor that will come to your home, along with all the other home health services, but it all comes down to what insurance will pay for. You can take your loved one out for meals and even overnight for a week or two a year, you can even buy a meal in the nursing homes now and eat with or feed your relative. It is a good time to interact because they are up and more alert, and might even eat better with you there coaxing them to eat or feeding them as long as you know how.

Long story, but we are all very similar when we go through this time in our lives, and we are all looking for answers and sharing them experiences helps. The one thing that made me very angry about my Mother’s care in a nursing home was that my Mother was oxygen dependent and they made her stay in her room by giving her a short oxygen cord. She had been a walker and a swimmer all her life. Now she had COPD and she was oxygen dependent to keep thinking clearly. With a long oxygen hose she would move the wheelchair out the door and down the hall a ways, and the hose would get disconnected from the oxygen concentrator. I thought that she should have an oxygen tank and have a tank to fill that was put on her wheelchair so that she could exit her room to remain mobile. My older sister said that insurance would not pay for the oxygen canisters when she went out…so the oxygen stayed the same, and she became more unable to stand and help with transfers. Eventually they had to use a hoyer lift to move her in and out of bed. When I requested she have physical therapy bed exercises it did help strengthen her again to at least help her stand to transfer for a while. Restlessness can be used to an advantage in keeping people mobile, as long as they are not allowed to go past their limits. IF my Mom had been able to push the wheelchair around the long halls, who knows how much more able she could have stayed for how much longer? My sister took care of a man who hiked a couple of miles up and down a mountain every day and had to keep up with him…because he had alzheimer’s she had to make sure he made it home! Being as fit as we can be for as long as we can be fit is a great idea, not just for body, but for our minds as well.

What is compassion fatigue?

What is compassion fatigue?

You’ve heard of burnout, but may not have heard of compassion fatigue. As more family members become caregivers, more seem to be learning about this term. A heavy workload and never-ending tasks may make you wonder if you’ve developed compassion fatigue. What is it and what can you do about it?

Compassion fatigue is a type of stress caused by caring for others. Although burnout develops over time, compassion fatigue comes on suddenly. In his article “Burnout and Compassion Fatigue: Watch for these Signs,” psychotherapist Dennis Portnoy classifies compassion fatigue as a form of burnout.

“Compassion fatigue is caused by empathy,” he explains. “It is the natural consequence of stress resulting from caring for and helping traumatized or suffering people.” According to Portnoy, burnout and compassion fatigue may overlap.

The American Institute of Stress, in the definition section of its website, describes this acute stress as “vicarious traumatization” because it’s caused by working with those who are suffering from the consequences of a traumatic event. The symptoms of compassion fatigue can be worrisome and include:

  • less ability to function
  • more stress than usual
  • caregiver feels traumatized
  • working harder, getting less done
  • irritability
  • feeling bored
  • more sickness, aches, and pains

When compassion fatigue strikes you and your loved one both suffer. You feel like your life has become a stress mess. Having a few of the symptoms doesn’t mean you have compassion fatigue. Until I found the cause of my symptoms, I thought I had compassion fatigue. I wasn’t functioning well, was extremely stressed, worked harder and accomplished less, was a general grouch, and had two arthritic hips. After my husband and I adjusted our daily routine and I was able to get seven hours of sleep a night, my compassion fatigue symptoms disappeared. It turned out I was suffering from sleep deprivation.

What can you do about this form of stress?

Assess your self-care. If you haven’t seen a doctor in years, now is the time to get a physical exam. Ask your doctor to update your prescriptions because some may be out of date.

Stay physically active. Put regular physical activity on your daily calendar. Walking is the easiest and cheapest form of physical activity. A fifteen-minute walk, short as it is, can boost your spirits.

Try deep breathing. Also called diaphragm breathing, this technique can help to reduce stress. The technique is difficult at first, but the more you practice it, the easier it becomes.

Check your support system. Fill in any gaps that you find. Put a list of emergency phone numbers on your cell phone or by your landline phone.

Join a caregiving support group. This could be a hospital group, church group, or online community. Attend several meetings before you make a membership decision.

Include some fun in each day. Take a break and read a magazine, or watch a television program, knit for a while, or call a friend. Sitting quietly may also be fun.

Care for your spiritual self. How you do this depends upon your religious and spiritual beliefs. Ask your church for help if you need it because these are the folks who show up, work hard, and give you hugs.

Follow these steps and you can get rid of compassion fatigue before it starts.

Dealing with unsupportive family

Dealing with unsupportive family

Are your family members leaving you alone to manage your parents’ healthcare needs?

How have you responded to it? Have you tried to get them to become more involved? Have you accepted the situation or are you boiling inside?

Share your response in the comments below.

I want to ensure the highest quality of life for my mother, while she is living, and to the best of my ability. I know some day I will be able to say I gave her my all!!! That will give me peace for the rest of my life. That’s a blessing. That’s my choice. Some people make other choices. – Lauren C.A.

I was in this situation and had a multitude of feelings incl. anger, frustration, hurt, jealousy, envy, despair and all the other ugly feelings you can feel when the focus was on self. I believe that God equipped me to handle taking care of both my parents until they passed. He did not equip my siblings. They did what they could. The brunt was on me. I finally gave up and realized that I was being blessed not burdened. Once I gave into the role that God called me into there was more peace, love, compassion and kindness in my heart. It enabled me to be a better daughter and caregiver. – Gail H.

If they can live with their decisions, I can and do live without them. – Cynthia M.

I just give my Gram the care that she needs, and I don’t spend any of my time worrying or wondering over those who don’t help. – Pamela M.

I talked to a counselor several times to learn how to release the anger I felt for my brother who didn’t help. – Gail Z. R.

In life we should never expect others to “step up to the plate.” We can only control our own actions. – Pamela K.

I told my husband’s siblings if they didn’t like how I was taking care of their mom I would have her packed and to their in a half hour, are you ready? – Judy R.