Why do we accept this behavior?

Why do we accept this behavior?

This isn’t going to be a popular opinion. I’m not here to get you angry. If you don’t want to read about carees who are emotionally abusive, skip this post.

Why is it somehow acceptable for people who need caregivers to be emotionally abusive?

Some care recipients have had strokes, dementia, or TBIs alter their behavior. Inappropriate behavior with a medical cause is not what I’m talking about.

Some people are just assholes.

My mother wasn’t the best parent, but she took care of me. Not like some other parents. I had a good childhood.

We were never close when I was young and we weren’t close once I was an adult. It was clear she favored my brother, but so many parents do. We did the obligatory parent/child things. Spent the holidays together.

I avoiding spending much time with her, because I found her to be a toxic person in my life. I didn’t need her criticisms of my weight, my choice of life partners, how I raise my own children. I have a happy marriage and children who are doing well and love me, but she was never happy with us. She made her disapproval known, not only to me, but to anyone within ear shot.

If she wasn’t pointing out my faults and failures, she was boasting about my brother. It always struck me as curious, since he’s usually in-between jobs, struggling with his drinking, and breaking up with his latest girlfriend. But this was just something I needed to accept and I did my best.

My brother calls me when he needs money. Or every year or two for bail money. But mostly he and I are both fine to live our very different lives. I wonder what our relationship would be like if she hadn’t coddled him while belittling me, but I do my best not to waste time thinking about it. It’s just a way to understand and accept why my brother and I were never close. He grew up being told I was a failure, how could he feel any differently?

My husband and friends all seemed to understand that while I didn’t want to cut my mother out of my life, I needed to keep my distance. Rather than being a source of support and wisdom, like some mom in a Hallmark card, she was a source of stress and self-loathing.

Few of us have Hallmark card families. I’m certainly not the only one with a strained relationship with a parent. It made me sad sometimes, but it was just one thing in a very full, complex life. I’d learned to accept it, as much as I felt I ever could.

And then my mom got cancer.

I’d worried about what would happen when she got old. I kind of knew it’d fall on me, but I’d planned for this by saving for both of our retirements. I anticipated writing cheques and managing paperwork when the time came. I had a good decade — or three — before I’d need to hire home health aides and companions and whoever else. Plenty of time to save. Plus, she has savings of her own.

Getting cancer at 50 was not part of this plan.

I guess it’s just as well, since she refuses to accept help from anyone but me. Why? Because she says it’s my responsibility.

She tells her friends, her pastor, anyone who asks that she’s just fine. She doesn’t need any help. She tells my brother not to worry about her.

She demands I move in with her. I agreed to stay with her while we was recovering from surgery and going through chemo. I wouldn’t have wanted to go through that alone.

Oh, if only I’d thought about what I was getting into! She turned into an evil princess. She demanded I wait on her hand and food, around the clock.

I knew I would need to do all the paperwork, run all the errands, do all the cleaning, and cook all the meals. I’d signed on for that. I didn’t expect to do them while she screeched bloody murder in the background. She wants these things done, demands that they’re done, but then resents any moment I’m not at her feet, waiting for her next command.

Her doctors said it would be good for her to get out of bed, get some exercise, get back to doing things on her own. She’s not supposed to be bedridden. But the bed is her throne. She’ll only get up on her own if I take that goddamned bell away from her.

It’d be one thing if she were simply demanding. But she’s also mean.

The names she calls me! She’s spent my whole life making it clear that she thinks I’m not pretty enough, not smart enough, not thin enough. They used to come as snide comments and backhanded compliments. Now she just yells at me for being a fat big, an ugly stupid lazy bitch, a useless good for nothing unappreciative child who ruined her life. Because her tea is too hot or not hot enough. Because she wanted the vanilla ice cream with the flecks of vanilla in it. Because I was busy folding her laundry and didn’t rush to her immediately when she wanted me to change the channel.

She gets up out of bed to wake me up to tell me to get her something that was on her nightstand.

All the yelling must take so much energy.

It took me energy to not just walk away. And then I saw her at the cancer center, walking around, laughing, getting up to get things for herself.

Why was I forcing myself to stay and take care of this horrid woman when she’s perfectly capable of taking care of herself?

Yes, as someone going through chemo, she could use some support. But will she die if I’m not there? No. She’ll simply save herself some yelling.

And so I left. Two months of her constant yelling, not letting me sleep, and telling me how worthless I am was enough for me.

My whole life, people have heard stories of my mother — or been lucky enough to meet her — and have reassured me that I was right to keep my distance. She is the classic toxic person all those women’s magazines warn you about.

But now that she has cancer, these same people are giving me a hard time about not staying to take her abuse.

Having cancer doesn’t make it okay to be an asshole. You can get frustrated, be upset, snap at someone in exhausted frustration and fear. But you can’t be mean to people for the rest of your life.

I read somewhere that in Cinderella it was originally the mother who was evil, but they changed it to an evil stepmother later on when the idea of motherhood became sacred. It was no longer acceptable to believe that a mother could treat a child that way.

I’ve spent my life not being good enough for her. I guess this is just one more thing to add to the list: abandoning her to die of cancer.

Giselle O.

My Life: Colleen R

My Life: Colleen R

What’s your life really like?

Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work, where people complain about their husband not being good enough for one reason or another and I just want to smack them.

Friday comes and I have begun to measure that time so that some of it is satisfying to both of us, not just him. That was a huge step for me since most of the time I was worried about entertaining him during all of my spare time. This is the quickest way to experience burn out.

Now I take lessons, I plan adult activities for myself, etc. So in that respect things are better. Since the stroke in ’09, he has learned to repeat a few phrases but still remains unable to communicate anything but essential needs.

What’s keeping you up at night?

Mostly the need to communicate with someone, anyone, anywhere, about anything. I’ve tried a multitude of different avenues. Most are disappointing to say the least.

I plan to not be alone someday, but there is no way of knowing when that will be. Until then I live with a person who barely resembles the man I was once in love with. Instead I see a person who needs me more than I have enough energy to serve. But everyday I do, and every night I wonder how much longer or will I die before him from exhaustion.

What are you really proud of right now?

Right now I am really really proud that we are mostly out of debt. I’m proud of my children and my grandchildren and that we have for the most part, a good relationship. I’m proud that I can know that I am doing what I am supposed to be doing no matter how stressful or how discouraged I become.

What keeps you going when you feel like giving up?

Humor, Humor, Humor. I love standup comedy, I love to hang out with funny people who can help me laugh at all the problems and even laugh at myself.

Music, as much as possible. I retreat into songs that have deep meaning and that were written during times of sadness but speak of better times to come.

Reading about people who contributed greatly to society against all odds.

Monster movies.

Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly

Music Therapy: Planning Ahead During Early-Stage Alzheimer’s

Music Therapy: Planning Ahead During Early-Stage Alzheimer’s

When a parent, spouse, or relative is diagnosed with Alzheimer’s, it can feel as if you’re starting an uncertain journey without any sort of roadmap. It’s a feeling that can persist even as the disease progresses. Often, caregivers look back during the later stages of Alzheimer’s and wish they’d taken earlier steps that would have made late-stage caregiving easier.

One particular area where this can crop up is music therapy for Alzheimer’s sufferers. In recent years, music therapy has been the subject of increased media attention and scientific research. There is now widespread anecdotal and data-driven evidence that music therapy is one of the most effective ways to reduce stress and improve the mood of Alzheimer’s sufferers, particularly those in the mid-to-late stages of the disease.

One of the biggest challenges to music therapy for Alzheimer’s patients is choosing the right music. That’s because the most effective music therapy programs use a patient’s favorite songs from their childhood, teenage years, and early adulthood. Even when late-stage Alzheimer’s has claimed other memories, the beat or hook of a once-familiar tune can dissipate stress, encourage cognitive activity, and transport sufferers back to the feeling of happier times.

If you are caring for a loved one with Alzheimer’s, it can be hard to find the right tunes for music therapy — especially if you start searching in the mid-to-late stages of the disease. By this point, it will likely be more difficult for your loved one to recall the artists and song titles they were most fond of growing up. More important, it will be harder for them to have the kind of conversations that make it easier to build a music therapy playlist.

If you have someone close to you who’s recently been diagnosed with Alzheimer’s, taking steps now could make it easier to care for your loved one in the later stages of their condition. To find the artists and songs your loved one responds best to, consider the following suggested steps and resources.

Start with Conversation and Research

The first place to start when researching a loved one’s childhood musical tastes is with conversation. Even if your loved one can’t remember all — or even most — of their favorite artists and songs from their early years, they will likely be able to remember a few that you can use as a launching off point.

It’s not necessary to have a single long and intensive conversation. In fact, it may depress your loved one to dwell on preparations for the progression of their illness. If this is the case, you may wish to have short conversations, or ask casually without bringing Alzheimer’s into the conversation. On the other hand, your loved one might enjoy the trip down memory lane, in which case you should feel free to mine their memories.

Once you’ve pinned down a few of their favorite songs and artists, you can turn to the internet for further research. These days, it’s easier than ever to explore a genre or decade of music. Whether you’re using links on Wikipedia, a music streaming service, an oldies satellite radio station, or a combination of all three, you can begin researching the sort of singers, bands, and songwriters that your loved one grew up listening to.

As a general rule, focus on the twenty-year period between your loved one’s fifth and twenty-fifth birthdays. Find out what kind of songs were on the radio at that time, and which artists were most closely associated with the ones your loved one enjoyed. You can use links between Wikipedia articles, suggested artists on streaming services, or whoever’s up next on the oldie station to make these connections.

kitchen radio with a cup of teaSee What Your Loved One Responds To

Once you’ve brainstormed a list of possible artists and songs, start putting playlists together to share with your loved one. Unless your loved one is invested in the project, don’t force him or her to sit down with headphones and a notepad. Instead, play the songs as background music while doing tasks together, during relaxing moments, or while driving in the car.

At this point, see how your loved one responds. If your loved one says they remember certain songs or certain artists, make a mental or physical note of which ones. If they seem to perk up at the sound of a particular tune, keep that song in mind for the future. If they’re humming along or bouncing their knee to the beat, that’s even better.

During these listening periods, you’ll start to get a better sense of which artists and genres your loved one connects with most. You can then start repeating this process, using the songs and artists your loved one likes to get a better sense of which other songs and artists they might be inclined toward. You can then go back to your research to brainstorm new songs to try out.

The more time you spend on this, the more you can become familiar with the music from your loved one’s earlier years. As you become better versed in the music of the time, you’ll be able to make smarter and more educated guesses about your loved one’s tastes. You might also find that you begin to develop a deeper bond with your loved one through this process, giving the two of you something to talk about that truly hits home.

Create Personalized Playlists for Music Therapy

Whether your list ends up getting narrowed down or dramatically expanded, you’ll soon be able to generate a full collection of songs for future music therapy. At this point, you can begin to put half-hour or hour-long playlists together, selecting the songs that you think will be most joyous or most calming for your loved one.

Of course, there’s no need to shelve this collection during the early stages of your loved one’s Alzheimer’s. If you’ve found that these songs have had a positive effect on your loved one, you should continue to play them and enjoy them together.

You may even wish to take more trips down memory lane. These days, it’s just as easy to research old radio shows or movies that your loved one may not have heard or seen for several years. While plot-driven narratives are hard to follow for mid-stage and late-stage Alzheimer’s sufferers, reliving these memories can be invaluable for those in Alzheimer’s early stages.

radio on console in living room of a hospice center

When the Time Comes, You’ll Be Ready

By doing this kind of legwork during the early stages of Alzheimer’s, it is easier to provide music therapy for a loved one when they reach mid-stage or late-stage Alzheimer’s. While this can be an extraordinarily difficult time for you and your loved one alike, it can be made easier if you’re able to provide your loved one with moments where he or she feels comfortable and at peace with the world.

At this time, it’s important to make sure that your loved one is comfortable when listening to his or her music. Consider investing in a padded pair of over-ear headphones, which can make it easier for your loved one to focus on his or her music. Also, remember that music played at loud volumes can be stressful or disorienting for those suffering from memory disorders. Make sure to test the volume of the music before playing it for your loved one and try turning it down if the volume seems to agitate him or her.

In addition to music therapy, there are a number of other therapeutic activities and exercises for those with Alzheimer’s. More and more Alzheimer’s caregivers are integrating art therapy and nature therapy into the care they provide for Alzheimer’s sufferers. These therapies — either in conjunction with music therapy or on their own — may also help you in caring for your loved one.


Larry Meigs, President & CEO of Visiting Angels

Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.

Lessons in caregiving

Lessons in caregiving

Evelyn Corsini and her family allowed photographer Francine Orr to document the final months of her life, to observe caregiving. Orr’s interest was journalistic but also personal: As the caregiver for her father, she had been living the story herself for more than a decade.


Video by Francine Orr/ Video Editing by Bethany Mollenkof

When does the glad start?

When does the glad start?

How many times i risked leaving mom alone …she was still capable of walking and her dementia was still not that bad… To get an hour away at the local coffee house located in Silicon Valley’s Mountain View.

I remember being in coffee houses trying to strike up a conversation and when i answered to “what do you do?” with “I am sole caregiver for my mother who has dementia” was brushed off and abandoned like a tsunami warning had sounded.

Yeah…they would not be able to do it…cowards. This was like at my 6 month mark. She was in such bad shape when I got there my sisters thought she would live only 3-6 months. Well that was. THEIR level of abandonment caregiving. I cared for her a dozen years…got her healthy enough for life again. And I did bucket list of concerts and museums and experiences.

I do want to add though that there IS a vein of decent humanity…who will stick by you… I developed a community of care out there at 4 cafes, our hair salon, the supermarket…and eventually the nursing home. The staff at the senior day care center. We were “a thing” once the barrier was broken with staff rushing to welcome us. I made that happen for us.

We were lucky to have as next door neighbors a family raising a disabled boy…and they frequently had playdates at their home with families from their special ed class. Again…these families were rock solid and we fit in.

If you can persist through the shallows brushoff folks…you might strike gold…someone who gets it and who gets the real depth of your character. They are out there!

And in my case I attracted some folks who were top of their field.. Some “world class”…bestselling author…an important VC scout (arranged funding for the two Google guys)… an international world economist… An opera diva. All heavily involved in caring for parent or spouse… a Forbes magazine columnist who happened to be THE federal budget analyst in DC.

However the crushing burden… destroyed me in so many ways.

There will not be a “me” for my old age…nor a million dollar home to liquidate as was done for her nursing home years. (I still had to care for her 4 hours night for 3.5 years).

This GOP heartlessness regime will probably doom any meaningful relief for us… And will throw even more seniors into family care… Or family care-abuse, unfortunately.

Yeah..when does the “glad”start? I racked some upbeat memories… But i am scraping by in reality…renting room with boxes stacked around me. It seems karma does not kick in…until the next lifetime.

Carol Wright

My Life: Jerry S

My Life: Jerry S

What keeps me going, and it is the hardest task I have ever had, is knowing that true love is rare. Deb and I met in 1984 when she was 28 and I was 33. We married a few months later. We had both had prior marriages and were blending families of 2 kids each. We knew it would be rough but we made a wonderful life for our kids and each other. She was diagnosed in 2004, in a wheelchair since 2010, and is now approaching what would be considered end stage MS. Her disease has never had relapses. She has what is clinically called “primary progressive” MS. My own physical ability to care for her is getting strained and I worry if I can finish. However, the emotional strain is by far more difficult. The key to going forward is not looking too far in the future. That is overwhelming.

I am proud that I have been a good and faithful husband and am honoring that vow “in sickness and in health”. I have had friends and family who have been supportive and encouraging. When I was young I knew a woman with MS whose husband had left her. She was a wonderful woman and I felt like that guy was such a creep. Looking back now what I feel about him is that he may have missed the best years of their marriage. Sure the sex would have gone but he would have had moments of love and intimacy that I can now say are some of the most beautiful moments in my life.

Jerry Smith

Instant Health Benefits of Routine Activity for Seniors

Instant Health Benefits of Routine Activity for Seniors

Staying active fortunately doesn’t have to mean hitting the gym every day. Activities for seniors, from volunteering to swimming, moderate hiking, even simply getting out of the house to grab lunch with a friend can have immediate health benefits. Caregivers looking to optimize their loved one’s overall physical and mental health will be thrilled by these tangible benefits of routine activity:

  1. Physical Wellness: In addition to promoting a strong immune and digestive system, regular exercise in old age can help fight illnesses like heart disease, obesity, high blood pressure, dementia, Alzheimer’s, and colon cancer to name a few. Is the person your care for experiencing minor back or knee pain? Staying active with low-impact physical fitness helps stretch your spine, reduce muscle inflammation and improve circulation, which in turn, can alleviate aches and pains. The benefits of physical activity far outweigh the risks for older people, but if you are concerned about injury, consult your doctor and encourage your loved one to start with gentler physical activities like daily walks, yoga, tai chi, or water aerobics.

 

  1. Positive Attitude: Both exercise and socializing with friends triggers an endorphin release in the brain, promoting self-confidence and overall happiness as well as reducing feelings of sadness and anxiety. Volunteering in the community is a great way for seniors to stay active and is also proven to help people feel more socially connected, combatting feelings of loneliness and isolation that can often accompany old age. If the person you care for is feeling depressed, angry or generally grumpy, striking up a routine of some type of activity daily, like a 20-minute walk, or a stretching session to a playlist of their favorite songs, both gives them something to look forward to as well as promotes endorphin production.

 

  1. Mental Clarity: For seniors, “staying active” doesn’t just refer to the body, but the brain too. Routine activities should include those which stimulate positive brain function, thus enhancing critical thinking and preventing cognitive decline. Solving puzzles or playing thinking games regularly, like Sudoku, Chess or Scrabble, encourages your loved one to multi-task, and use creativity, problem-solving skills and memory. Stave off dementia, memory loss, and Alzheimer’s with physical exercise too, which boosts blood flow to the brain and has been shown to promote cell growth.

 

  1. Better Sleep: Getting out, exercising regularly, and staying active can help your loved one fall asleep faster, get a better night’s sleep, and wake up more rested and alert. Better sleep then cyclically feeds into a desire to be more active as well as promotes better brain function. As a caregiver, are you concerned about your loved one falling? Exercise and healthy amounts of sleep can boost your loved one’s mobility, coordination, and balance which means reducing their risk of falling. A win-win!

 

  1. Sense of Security: When it comes to routine activity and providing a sense of structure and security for your loved one, “routine” is the key word. For caregivers and those they care for, following a daily set schedule that involves some type of physical activity is paramount. Taking meds at the same time each day, exercising and eating meals around the same time each day, and waking up and going to bed around the same time each day help people, especially the elderly, feel less stressed and sleep better.

 

For caregivers, the resources to help your elderly parent, grandparent or friend whom you care for aren’t always in abundance. Daily activities might require transportation you can’t provide, or time you simply don’t have because of a job or other obligations. Prioritizing regular exercise and activity that so greatly benefits senior citizens is easier with the help of other family members or friends who are willing to pitch in.

Consider organizing a care calendar where your loved one’s support network can sign up to transport them to the local senior center for tai chi class, to take them out for a walk, or to bring lunch over and do puzzles together. Online coordination tools like CaringBridge and SignUp.com provide free online signups and calendars for you to organize help. And local agencies and caregiver networks may offer free transportation or daytime activities for your elderly loved one as well. Do your research and don’t forget, keeping your favorite senior active will effectively make life better for them and you!


Jessica Hegg

My life: Catherine F

My life: Catherine F

What’s your life really like? So many caregivers are out there feeling like no one understands what they’re going through…but we suspect quite a few of you are going through similar things.

February 3rd marked a year since my husband passed away.

Life has been very different – I don’t have the daily battle on my hands with so many things, tube feeding via peg tube, bathroom messes, driving him to his appointments (he could no longer drive), arguments, dressing, giving pills, being bashed behind my back. Being with him in the hospital, doctor’s appts. (where I could not tell the truth because I had to go home and be with him). Therapists were under the impression that he was doing better than he was – he could bullshit with the best of them. His walk and his talk was fairly good – but his perception of things, his abilities to do things was never the same (stroke in 2013 at 64 yrs old).

What’s keeping you up at night?

While caregiving I had to be a light sleeper just in case he needed to use the bathroom instead of the urinal.

He would sleep walk quite often – he would rearrange things in whatever room he ended up in. Almost burned up the house heating up his barley bags in the microwave – had them heating up for too long – he could not use a heating pad because he would burn himself and had previously.

Or in case anything else came up overnight.

What are you really proud of right now?

How much I learned about nursing a patient, being a caregiver. Even showed nurses in the hospital how to handle hooking him up to the feeding tube.

I learned to read his body – knew when he was coming down with pneumonia or that his energy level was down – I perceived a lot about him from being with him every day.

I was mostly responsible for keeping him alive for the several years of his life.

Hanging in there until the end – I even considered divorce because of how mean and nasty he was to me – at least while receiving acute care at two different care facilities (due to silent aspiration pneumonia numerous times), he treated staff, his daughter, and best buddy the way he was treating me – amazingly, they asked why he was doing that, never considering that was the treatment I always got at home with him, he was now sharing his meanness with everyone else!

Knowing I could not change him – he began drinking whiskey (he was a former alcoholic) to calm him from the ‘familiar’ voices he was hearing.

I discovered that I could work from home – no matter what interruptions I experienced, I could stay focused and get my work done via remote connection to the office.

What keeps you going when you feel like giving up?

When considering a divorce I had a discussion with my Pastor – he understood what I was going through on the caregiving – he had cared for his Mother during her decline. I don’t know if it was as one on one as mine was, but he understood the mean and nasty aspects of the one being cared for.

My Pastor asked me if I still loved him – and I had to admit that I did. That’s why I continued to hang in there.

And I am a person who has Hope – a lot of hope. Which also involves Trust in God, Jesus, and the Holy Spirit.

Also, being able to talk to friends who understood what I was going through. Being able to share, being understood. Caregiver websites have helped through the years also.

Thank you!

Catherine L. Ford-Barbiero

Facing the unknown, with hope

Facing the unknown, with hope

My son was born two years ago. Nothing pains me more than knowing he will never know my mom for the person she was my entire life. That someday she may not know who he is at all, when one of her biggest dreams was for a grandchild, is a terrifying and unsettling thought. Yet it also brings me joy to know how much his presence on this earth has helped her. She always says that having him in her life makes what she is going through so much easier, and that she hopes everyone suffering like she is has a baby in their life to love.

Lost, anxious, depressed, afraid, angry, confused, and overwhelmed. These are just a few feelings that I am sure my mother faces on a daily basis. It saddens and enrages me that this is happening to her at the young age of 65. Accompanying the huge range of emotions she is dealing with are the emotions of her loved ones hoping to provide her with the best care possible through this process. It is hard on us all.

At this point, you are probably wondering what exactly it is that she is going through. Unfortunately, our family is wondering the same thing. For the past few years we have been slowly watching my mother’s decline. It has been scary, painful, and frustrating to say the least. It has already been a long journey for my mother, father, brother, and I, and we are still looking for answers and an accurate diagnosis. We don’t yet know if it is psychological or neurological, but there is no doubt that something in her brain is not functioning the way it is supposed to. Words like “dementia” and “Alzheimer’s” have certainly been thrown around.

It started out with some garbled speech. She couldn’t find the words she was looking for and stumbled over words that she did know. We then brought her to our primary care physician to rule out a stroke. After some testing, they could find no reason for her symptoms. This brought on a slew of appointments with neurologists, psychologists, and psychiatrists over the last few years. Tons of tests were done including CAT scans, PET scans, a spinal tap, and more. We are currently awaiting results of some more specific frontal lobe testing. She has also tried many different medications to no avail, and we are still scrambling to find the right fit.

During this time she has had periods of stagnancy, where she would go without any decline whatsoever. This gave us hope, because we were able to get acclimated to her – and therefore our – “new normal.” There have also been periods of rapid decline, where she is suddenly unable to do multiple things that she had just been doing daily.

Currently she has trouble with her memory, reading and writing, and performing daily tasks that the average person can do without much conscious thought involved at all. What’s troubling is that she is either aware that she is forgetting or having trouble, which makes her sad and frustrated, or she believes she can do something without help, which can end up with her feeling embarrassed or even getting angry with us.

My mom was always the woman who took care of all the children in the neighborhood. Other parents would come to her for advice, and whenever a child needed help in school, got hurt playing outside, or just needed someone to talk to, she was the first person they came to. Throughout her lifetime she also helped many adults by offering them a place to stay or giving up her time and resources to make sure they were taken care of. She lived a selfless life. It isn’t fair what she is going through.

Still without a sure diagnosis, we don’t know whether there will be treatment or a cure for what she is dealing with, or if she will continue to decline until the time she is no longer with us. As difficult as it may be to lack the answers we so desperately crave, the uncertainty leaves room for hope. It can be easy for me to get caught up in the stress or self pity that accompanies caring for a sick parent. I feel that we should have had much more time before anything like this happened. I mainly hope that I can be half the woman she raised me by example to be, and that I can support and love her no matter where this journey takes us next.


By: Rachael Mariani

My name is Rachael Mariani. I am a 24 year old stay at home mom and the author/owner of Uninvincible Mom, a motherhood and family lifestyle blog that is set to launch soon! My goal is to empower others in their imperfections, and to promote quality family time with an emphasis on the children.

My life: Carol M

My life: Carol M

What is it really like to be me…

As a 66 year old looking after my 90 year old dad…it is not nice to be me right now, sadly.

The year my hubby retired we had such excitement to start our travels and new journey. We got one trip in and came back to the news that dad was moving in with us.

That was 5 years ago and our life changed drastically…have not gotten to do the traditional things with my kids and grandkids…have not gotten to travel.

I have 2 brothers and 6 other sisters…only one brother helps out but he still works. We finally had to put dad in a nursing home on Dec 28th 2016.

So thought it might be better, but dad continues to not like me to be happy…every time in the last 5 years we tried to go away he got upset and made himself seriously ill and l could not go or had to come back.

Trying to play tough love now with him…l am up half the night trying to figure out how to go away and enjoy myself now that he is in a home…2 weeks ago l went 3 hours away to babysit my grandsons…he did it again and the nursing home was calling me all the time…l did play tough love and not go back. Sleep is terrible…l was told because he plays these games and destroys his body and kidneys by not eating or drinking till l get back that most likely l will not be around when he takes his last breath if l decide to go away..but they said go…yeah right, that is hard decision to make.

As soon as l come back he starts to eat and drink again.

Nobody else in the family hardly visits or will step up to the plate…l handle everything now.

I am tired and angry and feel guilty for being angry too even though he does not have to be like this.

I am angry at the rest of my family also…but they just do not care.

So my life l feel is ticking away while l am stressed and getting ill myself now…any suggestions will be greatly appreciated, but l have probably heard them all.

l am his POA so l make decisions my brother is POA also but leaves most of it up to me…

Off to visit him right now before storms come in.

How life insurance can pay for long-term care

How life insurance can pay for long-term care

Even as aging Americans revel in the splendor of their well-earned retirements they still harbor plenty of worries, such as outliving their savings.

Near the top of the worry list is the fear their health will deteriorate so much they’ll be forced to seek long-term care, a situation that could live them and their families slammed with expenses far beyond what they can afford.

Surprisingly enough, the solution to this particular problem may be right in their home, tucked away in a drawer.

“Many people don’t realize that a life insurance policy can be converted to pay for assisted living, home care and all other forms of long-term care,” says Chris Orestis, a senior-care advocate and author of the books “Help on the Way” and “A Survival Guide to Aging.”

“What’s really sad is that, when they’re suddenly confronted with the reality of long-term care expenses, some older people may let the policy lapse figuring they can no longer afford it. And it’s the very thing that holds the answer to their financial worries.”

Part of the problem is that, while millions of people own life insurance policies, few of them understand their rights as owner, says Orestis, CEO of Life Care Funding.

“Life insurance policies are assets,” he says. “Think of them just like a house. The owner of a house wouldn’t just move out without selling their property. Why should the owner of a policy ‘move out’ without first finding out what the real value of the policy is?”

Here are a few key facts about how that life insurance policy can be converted to a long-term care benefit plan and potentially rescue from the senior and their family from the back-breaking financial strain of long-term care:

The benefit plan is not long-term care insurance

A long-term care benefit plan allows policy holders to use any form of life insurance policy to pay for long-term care. In essence, what was a death benefit that would have been paid to the person’s survivors becomes a “living benefit” that covers the expenses of the policy holder now.

You can convert when you need it

You can’t wait until you’re about to move into a nursing home or assisted-living facility to buy long-term care insurance. At that point, it’s too late. But you can convert a life insurance policy to a long-term benefit plan at any time. There are no waiting periods, no care limitations and there are no costs or obligations to apply, Orestis says.

The full death benefit comes into play

The value of the conversion is not limited to the cash value, but is based on the death benefit. “That means the senior will receive a maximum amount of value toward their long-term care benefit plan,” Orestis says. If the insured person dies before the benefit amount is exhausted, any remaining balance is paid to the family or the named beneficiary as a final lump-sum payment.

“Families can go broke trying to provide for a loved one,” Orestis says. “In many cases, they could have avoided it but they had only known about this solution.”


Chris Orestis is CEO of Life Care Funding and a 20-year veteran of both the insurance and long-term care industries. A former Washington, D.C., lobbyist, he is a nationally known senior-care advocate and author of the Amazon best-selling books “Help on the Way” and “A Survival Guide to Aging.” Orestis also is a legislative expert, featured speaker, columnist and contributor to a number of insurance and long-term care industry publications. He is a frequent guest on national radio programs, and has been featured in the Wall Street Journal, the New York Times, USA Today, Fox Business News and PBS.

My life: Theresa L

My life: Theresa L

What’s caregiving really like for me?

Well it changes from day to day and hour to hour sometimes.

I’ve been married 56 years to Rick on March 16th. He has many health issues… stoke, open heart surgeries, infections, etc. He is homebound right now.

Sometimes I feel like there isn’t enough of me to go around. I’m tired, exhausted, but most of the time I’m happy and we have a good life when he is not in the hospital with major issues.

I am a poet, so I still squeeze in time to write and put my stuff out there.

Right now hubby is sleeping in a recliner due to congestive heart failure… they have put in a foley to try and keep him out of the hospital yet again… so I am on call and don’t get much rest. I’m constantly trying to help him get comfortable. Always have my gloves and wipes handy and all kinds of powder and creams… I give shots for diabetes three times a day.

We have home health right now for OT and PT and nurse. We also have a mobile physician for primary care.

I don’t feel isolated as I have family close by that help out when not working… also we live in a motor home in an RV community so lots of neighbors.

They all have their lives though… we keep in touch with friends on Facebook. Hubby has an iPad so he enjoys that.

There are lots of follow up phone calls from pharmacy and nurses, etc.

I feel like we have settled in after 10 years of caregiving for hubby.

Before that I took care of my parents and two aunties and Ricks mom.

In between and before his stroke we had some wonderful travels to the beaches around Florida. We walked the beach and fished daily. Met lots of interesting friends who we keep in touch with.

We both feel like we have had a good life.

My morning ritual is:

  • Emergen-C
  • Krill oil
  • Vitamins
  • Co Q ten
  • A vitamin shake from Medifast
  • Two hard boiled eggs or oatmeal
  • Orange juice
  • Probiotics

So far I have avoided any winter cold or illness, which I was exposed to daily as hubby was in the hospital and rehab from September to mid January. It’s very exhausting to keep up that pace of visiting daily.

Then when he was almost ready to get home they over dosed him on morphine and he almost died… that’s another story. So he is fighting his way back from that. It is being investigated by the state.

Theresa Loder

The 5 Easiest Ways You Can Help Your Loved One Stay Safe In The Bathroom

The 5 Easiest Ways You Can Help Your Loved One Stay Safe In The Bathroom

Family caregivers have to go through a lot – giving care to a loved one can be frustrating, difficult, and heartbreaking. And that’s just normal, day-to-day life – things can become harder when a catastrophe happens, like a sudden fall or other critical, life-threatening injury.

Because of this, even family caregivers who live with their loved ones should be taking steps to help the one they’re caring for stay safe and avoid injury – especially in the bathroom.

The bathroom is the #1 place where elderly people fall – clocking in at 35.6% of all nonfatal falls in the elderly. Because of this, it should be one of your first priorities when it comes to the safety and security of the loved one you’re caring for.

We’ve put together a list of 5 of the easiest ways you can help secure the bathroom for your loved one, and help mitigate the risk of a disastrous fall. Check them out below.

 

1. Install Grab Bars

Grab bars are one of the simplest and least invasive precautionary measures you can install in your bathroom – and they’re quite inexpensive. These bars allow your loved one to have a solid surface to hold and grab, whether they’re just looking to keep their balance, or attempting to prevent a nasty fall.

Typically made of stainless steel or another high quality, sturdy material with a grippable synthetic or rubberized surface, grab bars are absolutely essential – and not just in the shower.

A greater majority of falls in the bathroom occur on the toilet – not the shower. Because of this, grab bars should be installed both in the shower, and near the toilet, where they can offer aid to your loved one when they’re attempting to sit down on the toilet, or stabilize themselves when getting up.

2. Prevent Slips – And Remove Trippable Rugs

Slipping is another huge cause of falls in the bathroom – a tiled surface with water or a shower without some kind of rubberized mat can be a huge risk to an elderly person who lacks balance or strength. Any surface that’s a risk should have a rubberized mat installed, with proper steps taken to ensure that the mat will not slip itself, and can drain water and other fluids away easily while maintaining a grippable surface.

Making sure that all rugs, mats, and non-slip surfaces are secured is incredibly important, as unsecured rugs and mats are another huge cause of falls. Think about it – your loved one will never assume that these items are out of place, so even the slightest movement or upturned corner could be enough to trip them up.

Remove dangerous rugs and mats, then replace them with secured rubberized mats that are non-slip, and won’t move around or turn up at the corners.

3. Pay Attention To The Toilet

As mentioned above, toilets pose an even greater risk than showers when it comes to accidental falls – this is due to the fact that they are used more often, and usually not perceived as risky – whereas most elderly people know that showers are slippery and could pose problems, and thus are alert, the toilet is viewed as an everyday necessity that’s not as dangerous, which can put them off their guard and cause accidents.

Besides grab bars, consider other safety equipment for toilets – items like raised toilet seats can be very helpful, as they integrate side-grip bars with a high-profile design that minimizes the time that the elderly spend trying to balance and sit on the seat.

Toilet safety rails can also be considered if the design of a bathroom precludes grab bars – these devices consist of two large, sturdy safety rails anchored to the side of the toilet, and allow for increased stability when attempting to stand up from a seated position.

4. Take A Second Look At The Shower

Once you’ve put in grab bars and non-slip mats, you may think the shower is totally safe, but you’re not quite there yet.

Exertion can be a problem when it comes to showering – the elderly are more likely to tire out physically, which can be an issue when combined with hot temperatures that their bodies are less suited to mitigate. Because of this, it’s recommended that further safety precautions be taken, beyond mats and bars.

Reorganizing the shower can be important – everything that your loved one needs during a shower should be accessible without moving or reaching – this can lead to catastrophe, even with grab bars and mats.

A shower stool may also be a good investment – combined with grab bars, it is rather simple to sit down and get up on these non-slip stools as necessary, adding safety and autonomy to the shower experience.

Another problem can be getting in and out of the shower – the steps necessary and the awkward balance required to swing a leg out of a bathtub or high shower can be extremely dangerous. To help mitigate this risk, shower steps can be used – these non-slip devices allow a higher step profile, and allow the user to descend more gradually.

If even that is too much of a risk, you may consider a walk-in tub or shower – while expensive, these specialized designs are very friendly to the elderly, allowing easy entrance and exits.

5. Improve Visibility

This is often overlooked – but the elderly tend to use the bathroom more, and tend to wake up multiple times at night to urinate.

This can be extremely dangerous, depending on the lighting conditions in your specific home, but these risks can be mitigated somewhat by night lighting running from the bedroom to the bathroom, or even motion-sensitive lighting in the bathroom.

Even the most alert elderly person may trip or fall if they can’t see what they’re walking on, so it’s essential that this risk is mitigated, especially in the already-dangerous bathroom.

Mitigate Risks, Maximize Safety and Autonomy

It may be embarrassing to discuss the details of bathroom safety needs with your loved ones, or the ones who you’re giving care to, but it’s absolutely essential. Even just one fall can lead to poor health outcomes and long recovery times, so catching these problem areas before an accident is absolutely essential.

Don’t delay. Take a deep look at the bathroom, figure out what steps need to be taken, and ensure the safety of your loved one, and help them regain more control and autonomy.


Jessica Hegg

 

Let’s Stay Connected

Let’s Stay Connected

Our lives are so busy these days; we’re cooking, cleaning, taking care of the kids, planning parties, and working. Not to mention all the time we are spending at the gym. With our fast pace lives, this leaves little time for family.

How many times have we seen someone that we haven’t seen in awhile? We want to keep in touch with everyone, but work and life get in the way of quality time, especially if you’re busy taking care of others or being taken care of. I personally have a mother who I care for and though we see a lot of each other, it’s still hard for us to get out and see the rest of our family.

While this is a struggle for us, there are some ways we keep in touch that I wanted to share with you.

Technology

One of the biggest ways we stay connected is through technology. Between messaging, video chatting, email, social media, etc, we don’t miss a thing. With so many types of devices these days, we have a wide selection to choose from. Devices and apps such as Skype, Google Hangouts, Facetime, and of course our Nucleus, a home intercom system that makes it easy for us to stay on the same page. A lot of my siblings have Nucleus units in their homes as well and we love to connect that way. All they have to do is tap on mom’s picture and they can check in on her even though she’s miles away. This means she can chat with them without asking me, “how do I work this thing?”

Phone time

Since video chatting can often be a lot for my mom, so she likes to stick to phone calls instead. To help her out, I’ve put all the numbers she needs on speed dial so she is able to call our family on her own whenever she wants. To help your family in care to have something to look forward to, I think setting up weekly phone dates with a loved one is a great idea! That way it gives them something to look forward to and it helps keep constant communication.

Bring Back Family Dinner

Don’t you miss the days where your family sat down every day at 6:30 to a homemade meal? Since it’s hard to get family in town all together, we’re able to get together with one another thanks to technology. Every month or so we like to video chat everyone in for dinnertime. We all actually have a Nucleus intercom system in our kitchens so we’ll video chat once in awhile. That way we can enjoy a meal and each other’s company just like the old days. Our family can be together no matter where we are, sharing successes, telling stories, and laughing. To make it feel like we’re all really together, sometimes we even make the same meals!

Planning Scheduled Visits

While I know finding time in our busy days can be tough, in person visits are always the best way to stay connected with a loved one in care. I know that when my family comes to visit in person is when my mom feels most connected. While we don’t get to do this often, in person visits are always uplifting.

These are just a few examples of how to stay connected to family. While it may take a little extra effort to stay connected, we all are so happy to resort to these small changes. What ways do you keep in touch?


nucleus logothe Nucleus Team

Nucleus is a wireless home intercom system is up and coming in the smart home community. With two or more devices you can see into any room or a family member’s home with just a click of a button. Alexa enabled, this private and secure device helps families stay connected. To learn more, check out nucleuslife.com.

Spousal caregiver scammed as she struggles to pay bills

Spousal caregiver scammed as she struggles to pay bills

Florida woman experiences the ultimate heartbreak after she tries to sell her wedding ring

When Megan Starich showed up to exchange her treasured wedding ring for several thousand dollars, she thought she had done everything right. The Florida woman decided to sell the $5,000 ring to help pay for her husband’s medical bills, which stemmed from a 15-foot fall at work. Watch the video “My husband fell 15 feet onto… (more…)

Repeal of health care law could spark ‘death spiral’ in some insurance markets

Repeal of health care law could spark ‘death spiral’ in some insurance markets

WASHINGTON — House Speaker Paul Ryan says the Affordable Care Act is in a “death spiral,” but his party’s repeal legislation could be the spark that causes insurance markets to unravel in certain areas of the country, according to a new analysis. In the insurance industry, a “death spiral” happens when people begin to drop individual… (more…)

Be careful what you ask for

Be careful what you ask for

John was a highly successful civil engineer and a loving husband. He was by nature a real go-getter. And so when his wife was told that she would need complicated heart surgery for a dysfunctional heart valve, he went into full throttle. They arranged to have her surgery at the best cardiac hospital in the country. They flew to the Midwest for what they thought would be a few weeks’ stay—a few days to settle in, a lengthy surgery, and then two weeks for recovery and rehab. The plan was for them to return home where Linda would undergo an intensive program for cardiac rehabilitation in order to get her right back to her active life. John did his homework, learning about the possible pitfalls of this surgery, and figuring out how they would overcome each one.

But things didn’t go as planned, and Linda’s post-operative course grew more dire by the day. At two weeks, she remained on the breathing machine, one complication after another plaguing her recovery. John was at the bedside day and night, pacing the halls, begging for more information, reading all that he could about the complications that were arising and possible treatment options. He asked to join the doctors’ rounds every day and stood with them as they pondered the various causes of her deterioration. As they scratched their heads, he scratched his. As they discussed medication side effects, he suggested new ones to try. John loved his wife and he would do anything to save her.

Yet Linda continued to steadily decline, and by the time a mutual friend pulled me in for advice, it was obvious to me that she was dying. But when I spoke with John, I realized that he had no idea. He had been so consumed by the drive to cure her, come what may, that even though he understood each problem as it arose, he couldn’t see forest for the trees. And the doctors, his only guides through this terrain, had not told him. Rather than honestly delivering difficult news, they had supported him in his grief-stricken efforts to keep up the fight. Even when they must have realized it was lost.

John had asked for everything that he thought could possibly help his wife, and he had gotten almost all of it.

Most doctors, particularly those in the ICU, are trained to “do everything,” medically speaking. That means that as bodies begin to fail, we automatically reach for the machines and catheters that sit idling in the wings, using them to prop up organs, resuscitate hearts, breathe for failing lungs. These tools are truly miracles of modern medicine—many thousands of lives are saved by them every year in ICUs around the world. Yet when used on bodies that are truly dying, there are serious drawbacks. The number of overly mechanized deaths is rising. The statistics are staggering– 30% of people in the US die either in or recently discharged from an ICU. Many of them are on machines until their last breath or heartbeat, encased by machinery, separated from their family, and far from home. And this is not the way that most of us, when asked on surveys, would want to pass from this world.

How can this be happening? Why aren’t we reserving these powerful machines and treatments for cases where they have a good chance of helping? Why are we routinely treating patients in ways that go against common sense and stated preferences?

The answer is more complicated than it might appear. The physician, who is the de facto guide for medical decision-making, was trained in a culture which highly values the tools of our trade. Doctors are imbued with a sense that caring is best demonstrated through concrete action. More important, this same training did not prepare us for the breaking of bad news or the ability to recommend switching goals of care to a focus on quality of life as opposed to life-prolongation. We are poorly equipped to handle emotions of sadness or anger from our patients or their families, and see those responses, and the prospect of death in itself, as a sign that we have failed. And so we are inclined to just keep treating, instead of processing and reflecting on next steps, even after the trajectory has become painfully clear. Many of our patients therefore end up riding on what I have come to call the “End of life conveyor belt,” where their dying bodies become progressively dependent on our technologies and treatments until they die, attached to machines in an ICU or ventilator facility.

Within this shaky environment, the attitude and behaviors of patients and their families can have a big impact, whether exacerbating or productive, on the problem. The truth is that the doctor will take a lot of her cues from your behavior. Maybe it shouldn’t be that way, but I believe it’s true. We all want to believe that there is one “right” treatment path, and that it will be followed and tweaked along the way by some scientific formula, but the reality is much more human than that.

In times of stress, many of us appreciate marching orders. And the doctor is no exception. A clear directive can be a comfort, even if it has become outdated. Parsing out a patient’s preferences, current and future within various “what if” scenarios, wrestling with medical uncertainties, or moving a hopeful family into a more realistic place can be difficult, and at times, overwhelming for a physician. Research shows that it takes time and continued effort to help patients and families absorb bad news. And there is much difficult emotion to be faced by the doctor along the way, including anger, disappointment, and blame, something we are not well-trained to manage. And with a competent and eager surrogate like John on the case, who was committed to “doing everything,” it is disturbing but not surprising that the course was set at full throttle without re-evaluation.

But the good news is that doctors are also responsive to a different kind of messaging from patients and their families. If given permission, they are much more likely to give their honest assessments. If you want realistic information from your doctor, go ahead and ask her. Some options might include: What would you do if this were your mother? Do you think she’ll ever be able to talk again? Eat again? Breathe on her own? Will she ever wake up? Be able to come home with us? If you don’t want to know the answers to these very important questions, you may get pulled further along a course of care that, given opportunity for further reflection, you wouldn’t actually want. So I’d advise you to take a deep breath and ask for the truth you might think you don’t want to know.

When it comes to this stage of life, every moment is precious, and the best way to get what you really want is to have a clear understanding of what is going on. Sometimes your doctor needs your permission to go there.


Jessica Nutik Zitter, MD, MPH practices critical and palliative care at Highland Hospital in Oakland, California. An expert on the medical experience of death and dying, she is the author of EXTREME MEASURES: Finding a Better Path to the End of Life (Avery Books, Feb. 21, 2017). A graduate of Stanford University and Case Western Reserve Medical School, Dr. Zitter completed her residency in internal medicine at the Brigham and Women’s Hospital in Boston. She was a fellow in pulmonary and critical care medicine at the University of California San Francisco, and earned a Master’s in Public Health degree from University of California, Berkeley.

Jessica is at:

Twitter: @JessicaZitter

Facebook: /JessicaZitter

Carrying Out Caregiver Duties Without Burning Out

Carrying Out Caregiver Duties Without Burning Out

According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.

In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.

Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”

With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.

In this article, we want to briefly overview three essential ways to do just that.

1. Engage Family & Social Networks

As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.

To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.

2. Mind Your Own Health

As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.

A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.

Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.

3. Take Advantage of Specialized Support

There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.

You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.

Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.

Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.


By Adinah East, VP Quality Improvement, Caring People Inc

Cancer in Children Adversely Affects Parents’ Income and Employment

Cancer in Children Adversely Affects Parents’ Income and Employment

Having a child with cancer led to income reductions for parents and job discontinuation among mothers in a recent study, even after adjusting for pre-diagnosis sociodemographic factors. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings indicate that childhood cancer affects parents’ income and employment for years after the child’s diagnosis, and that these effects are not equally distributed among mothers and fathers.

To investigate the short- and long-term effects of childhood cancer on mothers’ and fathers’ income and employment status, a team led by Emma Hovén, PhD, of the Karolinska Institutet in Sweden, studied 3626 parents of 1899 children diagnosed with cancer from 2004 to 2009 in Sweden. They were compared with a matched control group of 34,874 parents from the general population.

The researchers found that parents’ income from employment decreased significantly following a child’s cancer diagnosis, with an overall 21 percent reduction in mothers’ earnings and a 10 percent reduction in fathers’ earnings for the year of diagnosis when compared with control parents. The relative reduction in income of mothers was evident up to six years post-diagnosis, whereas fathers’ income was reduced for two years post-diagnosis. Also, mothers were less likely to remain employed following a child’s cancer when compared with control mothers, and this was evident at the year of diagnosis and up to five years later. Having a child with cancer did not affect fathers’ employment status.

“In addition to differences between mothers and fathers, we found that a younger age of parents; lower level education; and, among mothers, being born outside Sweden were associated with more adverse effects on income,” said Dr. Hovén. “Also, mothers with a higher income before the child’s cancer were found to have an equivalent income level to control mothers at four years after diagnosis, whereas more adverse effects were found for mothers with a lower baseline income.”

The findings indicate that healthcare providers and policy makers should take steps to facilitate successful merging of work and parenting responsibilities for parents of children diagnosed with cancer. “This could include providing extended support from social work teams at the hospitals to help parents navigate the practical and emotional challenges following a child’s cancer diagnosis,” said Dr. Hovén. “In particular, our findings show that more support and financial assistance should be advocated for young parents, mothers with a lower education, and mothers who were born in another country.”

Dr. Hovén also pointed out that in countries with less generous social security systems and less rigorous national regulations regarding work, parents of children with cancer may need to continue working to avoid financial hardship. In such societies, the reductions in income from employment may not be as pronounced if the parents are forced to continue working. On the other hand, in countries where parents do not have the legal right to reduce working hours, leaving work may be the only option for parents with an increased care burden.


Full Citation: “Short-Term and Long-Term Effects of Childhood Cancer on Parents’ Income From Employment and Employment Status: A National Cohort Study in Sweden.” Annika Lindahl Norberg, Scott Montgomery, Matteo Bottai, Mats Heyman, and Emma Hovén.CANCER; Published Online: November 21, 2016 (DOI: 10.1002/cncr.30436): http://doi.wiley.com/10.1002/cncr.30436

 

CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.

Follow us on Twitter @JournalCancer and Facebook https://www.facebook.com/ACSJournals

Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.

A Mother’s Heart-Wrenching Story Of Loss That Offers Hope For Recovery And Healing

A Mother’s Heart-Wrenching Story Of Loss That Offers Hope For Recovery And Healing

A mother of five and grandmother to nine, married and divorced four times, and a clinical social worker in private practice for nearly forty years, Joan Childs thought she had experienced or seen it all. But nothing could have prepared her for the death of her beautiful daughter, Pam.  A brilliant psychotherapist, Pam battled constantly with Bipolar Disorder until one fateful summer day in 1998 when her demons overwhelmed her and she plunged to her death from a 15th floor balcony. Even with their combined credentials and medical knowledge, Pam still could not be saved. She became the driving force behind Joan Childs’ latest book, Why Did She Jump? (HCI Books), and brings hope to anyone struggling with grief from the loss of a child or loved one to mental illness, that there is hope for better tomorrows.

Fierce and tender, Joan’s compelling storytelling gives us an insightful yet sensitive look at her daughter’s life dealing with Bipolar Disorder. Peeling back the layers of pain and despair, Joan takes readers through the dark days of grief and guilt she felt both as a mother and as a frustrated professional who doesn’t understand why more hasn’t been done about this disease. With brutal honesty, Joan recalls how the lives of her entire family became entwined with her daughter’s illness as they watched her sink deeper into a place where no one could reach her. It is a powerful story of courage, hope, acceptance, and finally, forgiveness. Now, Joan reflects on her daughter’s many accomplishments, in spite of her illness, and sees them as Pam’s legacy to the world.

In an earlier book, The Myth of the Maiden: On Being a Woman, the author looks at the evolution of women from helpless maidens to dragon-slayers. Both books are excellent resources for personal growth and development after life changes and loss. In spite of many personal losses, Joan ‘walks the talk;’ she lives life to its fullest and maintains a level of energy and passion at age 76 that would put a 40-year-old to shame! A strikingly beautiful woman and energetic and inspiring speaker, Joan ignites the passion in others to find their own path to courage, healing and hope after the heartbreak and struggle of losing a loved one/child to suicide or any other cause of death.

Joan’s television series, Solutions, was dedicated to the memory of her daughter Pamela, and offered information and resources for anyone suffering from mental and mood disorders.  She provides lectures, workshops and seminars dedicated to her profession of mental health and women’s issues and is a spokesperson for bipolar disorder and suicide.


Joan E. Childs, LCSW, has been in private practice since 1978. She is a Licensed Clinical Social Worker specializing in couples therapy, known as Encounter-Centered Couples Therapy. An expert in Codependency, Inner Child Work, Original Pain Work, and Second Stage Recovery, she is certified in many modalities including a master practitioner in NLP, (neuro-linguistic programming), a master practitioner in EMDR, (eye movement desensitization and reprocessing), Supervision, Hypnosis, PAIRS, (Practical Applications for Intimate Relationship Skills), and is a Certified Grief Counselor. She was the first affiliate of the John Bradshaw Center in the United States and has made appearances on national TV shows including The Oprah Winfrey Show, The Mark Wahlberg Show, Maury Povich, The Montel Williams Show, and many more.

For more information on this remarkable woman and her work, please visit the website:  www.joanechilds.com.

My husband is dying and I don’t know myself

My husband is dying and I don’t know myself

I spend a lot of time thinking about hospice care these days.

As my husband’s health declined it was as if we could hear the clock ticking more loudly. All the plans we’d made for growing old, the life we’d imagined, was not going to happen.

If our lives were a movie, we’d be going bungie jumping right now. Unfortunately, not all of us will be healthy enough to travel the world and live it up until our last days. My husband’s decline was slow at first and has sped up more recently. He can barely muster up the energy for doctor’s visits. The places we have not yet visited and the things we have not yet done will not be done. That door has closed already, while we were too busy with work and kids and everything else. The opportunity slipped away without us even noticing it.

Now I meet with the hospice nurses. We talk about ways to keep him comfortable. But they’re exceptionally kind and want more than simply managing his pain. They ask me questions about him. They ask him, too, sometimes when we’re together, sometimes when we’re alone.

What is it that makes him ‘him’? What gives his life meaning?

And then they think of ways to keep those threads alive. He can’t do what he used to do, but they come up with creative solutions so he can still participate in his life as best he can. We take him on excursions, carefully planned and modified to allow him to enjoy these final days.

He does not have to lie there in this hospital bed set up in our dining room and wait for death. He’s spending that time doing the things he enjoys, be they meaningful talks, beloved activities, or just playing video games with our sons.

It’s made me question what I’ve been doing these past few years. Because while I can answer these questions for my husband — what makes him ‘him’, what gives his life meaning — I can’t answer them for myself anymore.

Who am I? I’m a wife and a mother. My whole life revolves around other people. It did long before he got sick. I’m not sure my life ever revolved around me, but once I got married and the boys followed soon after, I stopped even considering myself.

I knew it when they were little and they’d ask me silly questions. What’s my favorite color? What’s my favorite hobby? I have no idea. But those things stopped mattering when I left elementary school, so I didn’t think much of it. Kids are so obsessed with favorites.

My husband doesn’t have a favorite color, either, but he has hobbies he’s passionate about. He’s always had friends with ties beyond a shared property line, the proximity of their desks, or the age of their children. He’s had interests that I know only the faintest things about. My life has always just revolved around him and the boys. I know all of their wants and hopes and dreams, but I don’t know my own.

The thing is, my husband has been a great husband and a wonderful father. He doesn’t love the boys any less than I do. But he kept himself while raising them. I lost myself along the way.

Soon I’ll be a single mom. I want the boys to have a parent who’s a full person, not just a vessel for them. How will I go on after my husband’s death if I don’t even know who I am?

As my husband tries to enjoy his last days with us as a family, I’m trying to find myself.

Anonymous

Many Cancer Survivors Change Their Prescription Drug Use for Financial Reasons

Many Cancer Survivors Change Their Prescription Drug Use for Financial Reasons

A new analysis indicates that many cancer survivors change their prescription drug use (including skipping doses or requesting cheaper medications) for financial reasons. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study provides important information on the financial burden experienced by cancer survivors, suggesting non-elderly cancer survivors are particularly vulnerable to this phenomenon.

Although research has shown that cancer drugs can represent considerable costs for cancer patients and their families, there is limited information about changes in prescription drug use for financial reasons among cancer survivors. To further investigate this, researchers from the American Cancer Society, the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health used 2011-2014 data from the National Health Interview Survey, an annual household interview survey conducted by the CDC. This nationally representative survey included 8931 cancer survivors and 126,287 individuals without a cancer history.

Among non-elderly adults, 31.6 percent of those who had been recently diagnosed and 27.9 percent of those who had been previously diagnosed (at least two years earlier) reported a change in prescription drug use for financial reasons, compared with 21.4 percent of adults without a history of cancer. “Specifically, non-elderly cancer survivors were more likely to skip medication, delay filling a prescription, ask their doctor for lower-cost medication, and use alternative therapies for financial reasons compared with non-elderly individuals without a cancer history,” said the American Cancer Society’s Ahmedin Jemal, DVM, PhD, a senior author of the paper. The study also showed that among privately insured non-elderly cancer survivors, one-third of survivors enrolled in high-deductible plans asked their doctor for lower-cost medications compared with less than one-fifth of survivors enrolled in low-deductible plans.

Changes in prescription drug use for financial reasons were generally similar between elderly cancer survivors and elderly individuals without a cancer history. This is likely because of uniform healthcare coverage through Medicare.

The findings may have significant policy implications. “Healthcare reforms addressing the financial burden of cancer among survivors, including the escalating cost of prescription drugs, should consider multiple comorbid conditions and high-deductible health plans, and the working poor,” said Dr. Jemal. “Our findings also have implications for doctor and patient communication about the financial burden of cancer when making treatment decisions, especially on the use of certain drugs that cost hundreds of thousands of dollars but with very small benefit compared with alternative and more affordable drugs.”

In an accompanying editorial addressing the financial toxicity of cancer, Daniel Goldstein, MD, of the Rabin Medical Center in Israel and Emory University, stressed the need to avoid unnecessary testing and treatments. He added that “when two different treatments exist with equivalent efficacy and safety, the cheaper treatment should always be chosen.”


Full Citation: “Do cancer survivors change their prescription drug use for financial reasons? Findings from a nationally representative sample in the United States.” Zhiyuan Zheng, Xuesong Han, Gery P. Guy Jr., Amy J. Davidoff, Chunyu Li, Matthew P. Banegas, Donatus U. Ekwueme, K. Robin Yabroff, and Ahmedin Jemal. CANCER; Published Online: February 20, 2017 (DOI: 10.1002/cncr.30560).

About the Journal
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.

Follow us on Twitter @JournalCancer and Facebook https://www.facebook.com/ACSJournals

About Wiley
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.

Retail Savings Guide for People with Disabilities

Retail Savings Guide for People with Disabilities

Maxwell Ivey

In this guide, let’s look at ways those with disabilities can stretch their dollars. The purpose here is not to portray anyone as “less than” or “needing special help.” For us, the bottom line is “If you can save money, why not do it?” We just want to make sure you know about the options.

There’s one thing we know for sure: people like Jon Morrow, Joni Eareckson Tada, Stephen Hawking, and so many others, prove that a disability doesn’t mean “incapable.” Not by a long shot.

Discounts, Services, and Special Offers Available to People with Disabilities

Here’s a two-word tip that can save you hundreds or thousands of dollars every year: Always ask.

Businesses typically instruct their employees to refrain from suggesting discounts. That’s not because they don’t want you to save money. It’s because they don’t want to risk offending someone

Many customers would be glad if a clerk pointed out a senior discount, or “15% off for women on Tuesday” special, but some shoppers would get angry at the suggestion. That’s why store workers seldom say anything. In most cases, you need to know in advance about available specials, or you need to ASK.

Asking, by the way, is a simple procedure. You need say nothing more than this: “Hey, do you offer any special discounts that I may be unaware of?”

Businesses love it when the word gets out about their specials. Discounts bring in customers and discounts encourage repeat visits. They WANT you to know. Our aim here is to help them out and alert you to special prices you may be missing out on now.

Organizations that Help People with Disabilities Get Discounts and Special Pricing

Let’s begin by reviewing a few of the organizations that advocate for people with disabilities. These groups can provide all kinds of assistance. They can also be an excellent platform for finding opportunities to network with others.

Discounts for People with Disabilities

This site was founded by a couple who totally “understand the financial burden of disabilities.” After Mara was diagnosed with Multiple Sclerosis, their lives changed dramatically. Her income-producing ability decreased, but expenses shot up.

They first discovered a tax discount Mara’s disability made them eligible for. That encouraged them to look for other potential savings. They needed every penny they could save.

And once they started looking, they began finding opportunity after opportunity. So they started a website to help others with a disability get help.

Features of Discounts for People with Disabilities: You can search by U.S. state and county to find special offers close to you. Categories included are extensive.

Here are just a few of the types of discounts listed:

  • Assistive technology discounts
  • Banking services special offers
  • Education discounts
  • Health care supplies at reduced rates
  • Prescription plans for discounted medicine
  • Tax breaks for people with disabilities
  • Transportation help and rides for those with disabilities

Be advised that not all (or even most) of the offers you will find on this website are free. Many, however, are low-cost or tied to another program that will help with a purchase. Use the search feature there as a way to open your eyes to the potential.

Disability.gov

This site is a clearinghouse for information on programs and services available via the U.S. federal government to those with disabilities.

Here are the categories covered:

  • Benefits for people with disabilities
  • Civil Rights and those with disabilities
  • Community Life – includes information about financial help, independent living, personal assistants for people with a disability, community-based help, and more.
  • Educational Assistance for students with disabilities
  • Employment Opportunities for those who have disabilities
  • Health, Housing, and Transportation assistance for those with disabilities
  • Emergency Preparedness, Technology, and Accessibility

Check the Quick Links section for easy access to programs and phone numbers that can open the door to a whole array of services aimed at providing help for those with disabilities. This site alone has the potential to save you thousands of dollars annually.

Invisible Disabilities Association

Not all disabilities are obvious. Some suffer from mental disorders, learning disabilities, and other maladies that are often “hidden.”

According to the Americans with Disabilities Act (ADA), anyone who “has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment” qualifies for benefits under the act.

Accordingly, the Invisible Disabilities Association (IDA) seeks to reach and educate those who may not realize their rights and the potential benefits available to them. While the IDA doesn’t list specific discounts or special purchasing offers for individuals with a disability, it is an excellent clearinghouse for information.

Here are the categories covered:

  • The definition of “invisible disability”
  • Living with invisible disabilities – encouragement and online resources
  • Programs for those with disabilities, including the Brain Ideas Symposium
  • Disability awareness – including a blog and a newsletter
  • Disability awareness events – seminars, awards ceremonies, other events
  • Networking and involvement – social media and a support community

If there’s one message we want to get delivered with this guide is that discounts, services, and special offers for people with disabilities are widely available. In most cases, though, you need to know about them and/or ask about them.

Few people will approach someone with a disability and say, “Hey, did you know you’re eligible for a special program?” The risk of offending someone is just too big to risk saying something.

Microsoft, for example, goes above and beyond in their desire to employ workers with disabilities. Microsoft success stories abound, yet you generally need to hear about the opportunity in order to take advantage of it.

SeaWorld and other entertainment providers often provide programs to help guests with disabilities avoid long queues for rides and offer discounted admission for these individuals and their assistants – but you have to ask. Call guest services in advance to find out what you’re eligible for. They want you to have fun, and they’ll often go the extra mile to make sure you do.

Managing a disability can be tough, but you don’t have to handle it all by yourself. Plenty of people, programs, and organizations want to help. Your end is let your needs be known. Never feel bad about asking for help. None of us can function well without the love and assistance of others.

This article first appeared on CouponChief.com: https://www.couponchief.com/guides/savings_guide_for_those_with_disability


Maxwell Ivey (The Blind Blogger) is an inspirational and motivational personal coach who also runs a business brokering carnival rides and amusement equipment. A native Texan, Max loves to sing and spend time with his unique and crazy dog, a “Greymation” named Penny.

31 tips for future-proofing your home

31 tips for future-proofing your home

Taking preventive steps to help reduce the risks of injuries sustained from falls and slips can improve a senior’s quality of life. Aging adults can make accommodations to their home by age proofing their home to minimize future in-home accidents.  Age-proofing a home isn’t about remodeling the entire house. Safety updates can be as simple as eliminating clutter or installing new light bulbs. Although purchasing a fire extinguisher, buying a new bed, or paying contractors to install handrails or an in-home elevator may all require spending some money however, these costs are helpful investments to ensure a senior’s safety and quality of life.  This infographic published by Easy Climber, provides a home improvement checklist to the aging population to help make aging in place safer.

31 tips making your home safe for aging


Easy Climber is part of one of the country’s largest home remodeling companies, an organization dedicated to providing products and services that enable seniors to successfully age in place.

Happy and Mobile in Old Age

Happy and Mobile in Old Age

As we grow old, our bodies and immune system becomes weak and we get prone to developing various health issues. In addition to the possibility of developing various diseases commonly associated with old age, such as dementia, diabetes, and cardiovascular diseases, increasing age also limits our mobility.

Joint pain and arthritis are common problems among the elderly. Even if people take good care of themselves and keep the diseases at bay, they do get affected by mobility issues as they age which affect the quality of their lives.

Here comes the role of assistive technology. Commonly known as mobility aids, the sole purpose for the development of these tools is to enable the elderly to continue with their activities and regular lifestyle. With the help of assistive technology, seniors can avoid becoming dependent on their family members or nurses, and can perform their tasks on their own.

What Comes Under Assistive Technology?

Dr. Helen Hoenig, an Associate Professor at Duke University and Chief of Physical Medicine and Rehabilitation at Durham VAMC, assistive technology can be defined as “all those devices that are used to compensate for physical limitations”. According to her, the term can be narrowed down to refer to those devices, tools, orthotics, and prosthetics that are used to help someone carry out an activity.

How Assistive Technology Helps in Improving the Quality of Life for Elderly

Seniors, when faced with limited mobility, become dependent on others for carrying out even the simplest of tasks of their daily lives, such as walking, eating, self-cleaning, and changing clothes. Many people fail to accept this new reality of life or do not like to ask for help in the simplest acts. In the absence of any solution, seniors become unhappy and even go into depression.

On the other hand, dealing with older people with limited mobility is also a difficult and challenging task for their families. When family members are unable to take good care of such old people, they transfer them to nursing facilities or assisted living centers. Moving away from their loved ones is even more disturbing for a majority of seniors and makes them more unhappy and depressed.

Mobility Aids can be of extreme help in such situations, both for the elderly and their families. They improve the mobility of the elderly and thus, enable them to perform their own tasks. Also, when seniors have such helpful devices, they do not give up on life and continue pursuing their interests. In this way, the increasing age does not affect the quality of their lives.

Common Mobility Aids and Their Link to Happiness

Mobility aids that are most commonly needed and used by elderly include:

  • Walking Aids
  • Wheelchairs
  • Electric Scooters
  • Portable lifters and Ramps
  • Recline and Lift Chairs
  • Stair Lifts
  • Knee Scooters
  • Leg Lifters
  • Car Transfer Aids

With the use of any one or multiple of the above mentioned devices, the quality of life improves in old age. This may not be important to young and healthy people but for seniors, even the ability to continue living a normal life despite suffering from limited mobility is of great pleasure. If an old person with arthritis is able to visit his/her friends, to go to his/her favorite restaurant, or the nearest park, the pleasure he/she will get is beyond comparison.

Andy Canton

10 Financial Questions All Parents Must Discuss With Their Children Before It’s Too Late

10 Financial Questions All Parents Must Discuss With Their Children Before It’s Too Late

No one can predict the future. As mom and dad start to age and life gets a little more challenging, we do our best to tend to their medical needs to keep them as healthy for as long as possible. But one area that is often overlooked by many parents and their kids is having the money talk. Who inherits any assets that mom and dad have? Who oversees the estate? Is there enough money to pay for a home healthcare worker if needed?

When illness or death strikes, it’s a stressful time. To make things easier on everyone, it’s best for parents to talk about finances with their children years ahead of time, when everyone can think clearly and is more relaxed.

While there is indeed a lot of ground to cover, here are 10 must-ask questions that need to be answered.

 

  1. Have they named a durable power of attorney to manage their finances?

The first step is to find out if they have named a Durable Power of Attorney (POA). Without a POA in place, you’ll have to go to court to get guardianship of your parents in order to access accounts on their behalf.

 

  1. Where do they keep their financial records?

Whether they keep their money and documents in a bank, a safe or under the mattress, you need to know where to find records when you need them. Also, find out the location of keys or codes to lock boxes or safes.

 

  1. What are their bank account numbers and names of their financial institutions?

In addition to knowing where they keep their money, you need specifics on all account numbers. What banks and mortgage company do they use? Do they have an investment firm? How many credit card accounts do they have and where do they keep their statements?

 

  1. What are your parents’ monthly expenses?

Gather information on their mortgage, car payment, credit card debt, electric bills and other expenses.

 

  1. How do they pay their bills?

If there are automatic deductions being taken out of a checking account, you need to know about them. Do they use online banking/bill pay or only paper checks?

 

  1. How much is their annual income and where does it come from?

Do your parents receive monthly pension checks? Do they have dividends coming in from investments? Do they get money for a disability or alimony?

 

  1. Do they receive Medicare, Medicaid or Social Security?

If your parents have become incapacitated, you may have to investigate the status and eligibility of government assistance.

 

  1. What kind of medical health insurance do they have in addition to Medicare?

Do they have health insurance provided by an employer? If they are retired, are health benefits included as part of a pension?

 

  1. Do they have long-term care insurance?

A “regular” health insurance plan does not cover the cost of assisted living or a nursing home. Did they purchase a long-term care insurance policy to cover the cost of those residences? If not, and they can no longer live on their own, what can they afford in terms of housing?

 

  1. Do they have an accountant or financial planner?

Who is it and how do you contact them? Have they done any estate planning? Ask if you can meet with their financial professional with them to discuss their situations.

 

It’s best for parents and children to figure things out about money and plan for the future as soon as they can. All too often it’s too late, and trying to discuss money in a stressful time leads to more stress, arguments, saying things you regret, hurt feelings and broken relationships. Have the money talk now, before it’s too late.

 

Kurt Kazanowski, MS, RN, CHE, is author of A Son’s Journey: Taking Care of Mom and Dad, and has more than three decades specializing in hospice, home care and senior care.

I can’t be ON all the time

I can’t be ON all the time

Being a 24/7 caregiver means there’s someone who needs you 24/7. But I’m learning to accept that it’s just not possible.

Believe me, I tried. For the first few months I was unstoppable! Any time Joe needed me, I was there in an instant. It didn’t matter what I was doing, how tired I was, or how many other things needed to get done.

And then I couldn’t do it any more.

I started to slow down. I started to get sick all the time. I started to get angry. There used to be two of us in this marriage and it felt like now I was all alone, responsible for both of us. I felt bitter and trapped. That’s not the person I wanted to be. I don’t blame Joe for getting sick, but I also couldn’t cope with how much our lives had changed. I wasn’t angry at him, but I was angry and I was taking it out on him.

Something needed to change.

I can’t make him not sick. The doctors can’t, either. I needed to stop hoping for a miraculous recovery and accept that this is the situation I’m in and it’s not going to change. I can be wonder woman for a little while, but I can’t keep it up forever.

I was going to have to learn how to take care of both of us without burning the candle at both ends.

Joe is a grown man, the type of guy who never stopped to ask for directions or get help from anyone. He was a real independent, take charge kind of guy. I loved that about him. He took care of me all the time. I really leaned on him for a lot of things. At first, when he accepted that he needed to let me help him, I felt empowered. I finally got to return the love and care he gave to me all of those years. I could show how strong I really am. After a while, it got harder. I started to resent how much I was doing for him. While he leaned on me for a lot, I know he didn’t like it.

Step one for learning to do this long-term was pushing him to do more for himself. I can wait on him hand and foot when he’s having a particularly bad day, but not every day. There are certain things he can’t do for himself and that’s fine. But I realized I was babying him. There’s more that he can do than he’s doing. While he’s learned to let me do things for him and expects me to do things, he doesn’t like it any more than I do.

I started asking him to see if he can do things on his own. And he could. It was hard at first, but it was a fun challenge for us to do together. For a few months we discovered that he could do a little more for himself each day. Then we hit a plateau and it was frustrating, but that’s okay. His condition isn’t getting better, so now we know the maximum he can do on a good day and on a bad day and everything in-between.

As I pushed him to do more for himself, he also started to interrupt me less. Some things need to be done right then, it’s not optional. Other things can wait. He’d been interrupting me to ask for help for things that weren’t urgent and I was letting him.

Now we have a system that I check on him at regular intervals. He knows the longest amount of time he’ll have to wait before I’ll be there with him again and he can decide if he should call me in before that.

I can’t express how much this has improved our lives. He feels more independent. I feel more independent. And I can finally get things done. I had no idea how much trying to juggle a dozen tasks at once with constant interruptions was scrambling my brain!

Now some days I can do the stuff that needs to get done, from start to finish. When I hear him call for me I know it’s because it’s important.

I feel like I have my life back.

At first I felt like I was really letting Joe down by saying no to him. I didn’t even actually say ‘no’ and I still felt so guilty! But then I saw how happy it made him to get back to being the sort of guy who didn’t need someone else’s help all the time. We’re both so much happier now.

There are still bad days. It’s still exhausting. But now I know I can keep doing this. I could never stop being Joe’s caregiver — now I know we can keep this up, til death do us part.

Sara Waltrip

Beginning or End: There is No Substitute for Love

Beginning or End: There is No Substitute for Love

I once tried to make a list of the things we respond to from the day we are born, and one of the first ways we bond with a parental figure is by communicating our feelings through tears or laughter. Mother and father then have to listen carefully to how we make ourselves understood so they can react accordingly. A loving parent usually ends up able to interpret each nuance in their child’s sounds and demeanor.
Later, when we learn to express ourselves with words, we have a deep need to share each new experience with someone who cares. It may be a parent, a schoolteacher, a grandparent, a friend, or all of the above. But one person’s close attention to our joys, our sorrows and our endless questions are a vital part of our growth—especially while every little happening in our lives is still the most exciting thing in the world to us.

As we reach adolescence, it becomes even more confusing if there is no one there for us to relate our concerns to about the emotional and physical changes taking place. How many troubled teenagers say that all they really miss is a parent or mentor to spend time with—someone who will take the time to listen.

Loneliness and fear take root early on in our lives when we feel we have no one to talk to. And in the twenty-first century, when both parents often have fulltime careers, it becomes increasingly difficult for a  mother and father to find the time to listen to what is happening in their children’s lives. Emotional issues are usually the first to be put on the back burner and are considered “normal” for that age.

In my grandparents’ day, before the world was filled with high technology, families lived in a home where the children were usually born and where there was always a place for the older generation to live out their lives. The cycle of birth and death was not a mystery to young people who were active participants in all aspects of family life.

Now the aging process of a beloved grandparent is often, at best, kept at a distance while a staff of strangers takes care of them in what is now called “assisted living.” In these facilities all responsibility is taken off the family’s shoulders as the necessary level of care is upgraded with time.

This situation enables the next generation to ignore the final stages of life that the older person goes through and does not give the younger ones the benefit of the wisdom, love, or connection to those responsible for their heritage. And so the charade continues, while we permit ourselves to hide our heads in the sand and pretend that the impersonal care and feeding of those who raised us are adequate substitutes for our love.

The tragedy of abandonment of the ones who have nurtured us, who desperately need our love at the end of their lives, was overwhelmingly shown to me when I went to an assisted living home in New York City called Atria, where my old nurse Lucy, who had cared for my brother and me when we were born, was living.

When I arrived, I was told that Lucy was at a doctor’s appointment with her aide, so I went into a comfortable little sitting room to wait for them to come home. When I sat down, I noticed an elderly lady in a wheelchair talking on the phone with her son, pleading with him to come visit her. I could tell she was speaking in the most diplomatic way possible, so as not to anger him.

At the end of their conversation, I nearly fell out of my chair when I heard her say, in the sweetest possible way, “But, darling, you only live a block away.”

I have found that even when human beings have been forced to spend their whole lives in a state of lonely desperation, at the end, the door to their emotions is always ready to be opened. Although it may be only days or even hours before death that they find that loving ear, the deafening quiet of a lifetime can be erased forever in those last moments. It is never too late to make the connection, especially when it is a connection born of love.

Are You Helping Your Elderly Parent, Or Just Yourself?

Are You Helping Your Elderly Parent, Or Just Yourself?

I still remember the days when my parents chose my wardrobe. They paid for my clothes and therefore I had to wear what they wanted. Needless to say, their selections were less than fashionable, resulting in me getting a healthy dose teasing on the playground. This helped me learn a valuable lesson: when others get to make decisions on your behalf, it’s really hard for them to set aside their own tastes and motives. I call this the Decision Maker Bias.

Many decades later, I now find myself heavily involved in my parents’ care and often have to decide what’s best for them. Should they move into a facility or live on their own? Do they need a caregiver, or perhaps even a geriatric care manager? Should they downsize or keep living in their house with a stairway? I constantly catch myself forming strong opinions on each of these topics, but after some introspection I realize that there is a trace of my own interest in them. I genuinely want my parents to be happy, so I created a framework that helps me spot decisions where I might be affected by the Decision Maker Bias.

Kevin Trotman via Flickr

Kevin Trotman via Flickr

Proximity

We often try to get our parents to move closer to ourselves, thinking that they will benefit from us being able to spend more time with them. However, we also have to consider the cultural impact on our parents’ lives. Would a culturally conservative 90 year old from the Midwest feel at home near Berkeley, CA? Will they be able to connect with their neighbors, and will they find a local church that fits their needs? While it’s true that we might be seeing them on weekends, they may experience isolation and depression on all other days of the week. Also, their old friends and neighbors they leave behind are often restricted in their mobility, making it very hard to see each other again. When relocating an elder, we have to remember that this is more traumatic to them than we can imagine.

Safety

Safety is the cornerstone argument in almost all elder care discussions; we use it to downgrade houses, move our parents to assisted living facilities, veto long trips and outdoor activities, etc. But what we often forget is that money can buy safety – you can hire caregivers, install home safety equipment, use smart monitors, etc. In other words, the question should not be: “Is it safe?” but instead: “Can we afford to make it safe?” You won’t always be able to say yes, but be aware that being an overprotective adult child is not always in the best interest of your parents – sometimes the extra effort and cost it will take to keep them safe might be worth the happiness they’ll get out of their wishes for autonomy and independence coming true.

Relationships

I don’t believe that this is happening between me and my parents, but I’ve certainly encountered it as part of my work at Kindly Care – as caregivers and elders spend a lot of time together, inevitably they start forming strong bonds which can make the adult children jealous. Particularly, the topic of oversharing sensitive family stories seems to come up a lot. Caregivers are in a difficult spot – as a companion, a part of their job is to be a great listener, but not all topics are good for their job security. Adult children can get suspicious that the caregivers are being noisy, and it’s hard to determine who initiates such conversations. What’s clear in those situations is that the adult children face the Decision Maker Bias: their hurt feelings can hinder their parents’ ability to bond with their caregiver.

kindlycare professional caregiver and client

Hobbies

When encouraging my Mom to be more active, I usually suggest that we go for a walk. I just love the outdoors, and it’s one of my favorite ways to bond with her. However, I recently read in the New England Journal of Medicine that dancing trumps all other recreational activities when it comes to mental acuity in aging. Well, dancing is my least favorite activity, and now I face the same dilemma that parents face when helping their kids decide which sports to pursue – should I encourage something that we’ll both enjoy? This just reminds me once again that our personal taste has a real impact on the people we care for.

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Are there any other areas where you can spot the Decision Maker Bias? Leave them in the comments so that we can all be more aware, and get better at realizing our bias when we make decisions on behalf of the ones we love.


Igor Lebovic is the CEO of Kindly Care, a self-serve care management platform that makes it incredibly simple to privately hire caregivers without having to worry about sourcing, safety or compliance.

Follow Igor Lebovic on Twitter.

Featured image: Roman Nerud / Shutterstock.com