I know I’m not supposed to feel guilty, but I do.
When we were told that the baby I’m carrying would have severe disabilities, we knew abortion was an option but didn’t seriously consider it. This was our baby, no matter what.
But that choice won’t just affect my husband and I. It will also affect our daughter.
Our decision to keep this baby, to support in every way we possibly can, and love it forever means that our first daughter will never have the childhood we envisioned for her.
I feel like we’re stealing her childhood from her.
The internet is full of beautiful stories of the siblings of people with disabilities. I’ve been reading them when I can’t sleep, which is a lot lately. I find solace in them.
But I know our daughter, my husband, and I will have to make sacrifices. My husband and I made that choice together. Our daughter will have to live with our decision.
I hope one day she’ll be happy to take on that responsibility when we’re no longer able to.
Caring for the older generation
Qi Jianguang feeds his father Qi Wenjiang at the farmhouse he rented near the construction site where he works.Du Huaju / Xinhua Son honored for looking after his partially paralyzed father For many young Chinese living in the country’s rural areas, the only way to find a well-paid job is to leave their hometown and move… (more…)
As someone suffering with chronic pain for nearly 8 years, I can tell you it’s never an easy day. Every day and sometimes every hour can be different, I have no control over my body and how it feels from one moment to the next. Most of the time my mind wants to do things, but my body doesn’t allow it. I know that many caregivers and loved ones have asked or thought how can I push/encourage my loved one with chronic pain in a “good” way? I don’t want to push too hard, but I also don’t want my loved one to miss out.
Let me be the first to say we really do not like the fact we can not make plans anymore. We really do want to be an active participant in our friends and families lives. We do have the best intentions when we say we will be there and when we can not it really does bother us.
I decided to ask the chronic pain community how a caregiver or loved one can encourage someone with chronic pain. Here are our top answers:
“Help out around the house or with dinner so the person isn’t too exhausted to do other things. If it’s an event type thing the person wants to go to, make the person feel like they can be honest about how they are feeling. Let them know they will not let you down if they have to leave early.”
“I’ve been blessed with some amazing people in my life that help. Support is the key. I always think of the spoon theory. I only have a certain amount of spoons, and if I want to get out to do something fun, I need the energy, which is very sparse during a high pain day. I get the most help with people offering to take my kids for the night, bringing meals over, helping with housework. I have a hard time asking for help, but this is what I’d ask for. “
“My husband and young adult kids would buy me little things to encourage me. For example, Superwoman PJ’s, because I was doing therapy at home as well as at a place, and they saw how difficult the smallest task was. They didn’t treat me as disabled, but they were always there to make my life easier in trying to regain movement.”
“Pay attention first. Be a steady shoulder second. Understand that everyone is different and it’s about the individual’s ability to push past the pain. If you can do that then you will know how to push/encourage them in a positive way. After all, it may appear we need a push or encouragement, but really what we need is support. Be supportive and that will eventually give us the encouragement you are looking to give.”
“Read as much as you can about what they are coping with. Knowledge is the answer.”
“Communication is very important. A phone call or simple text asking how you are doing is everything. Keep communicating and supporting even if the person in pain keeps declining your offers to get out of the house to do something. Support is key.”
“For an event: Listen to why they are hesitant about attending, is it an issue that could be problem solved or is it an emotional issue/fear of showing their pain to judgmental eyes? Do they know they can count on you if they become overwhelmed/exhausted or if they are faced by a person offering up free advice without understanding what it took for them to even leave the house? Are you willing to be their companion and their guard dog? Do they know this, deep in their heart do they trust this about you? This is how you push/encourage them in a good way. You let them know that you’ve got their back.”
In closing, the best way to encourage us and push us in a good way is to be supportive and keep communication open. Come up with a plan, but keep things flexible. Please remember we are already hard on ourselves and we truly do not like missing out, making us feel guilty about it is never the answer.
About the Elizabeth pain
Elizabeth Pain has suffered with Complex Regional Pain Syndrome for nearly 8 years along with other pain conditions. She has been married to her best friend for 14 years and a mother of 3 amazing children. She became active within the chronic pain community nearly 7 years ago when she started an online support group for those suffering with CRPS and their family members. She finds comfort in helping others and has found writing helps distract her from her pain. Nearly 2 years ago she branched out and started a website for all chronic pain conditions called The Unbroken Smile.
Sometimes you can’t get help for caregiving, because no one is willing to step in. Even professional caregivers.
We are 68 years old and caregivers for our 40 year old Autistic daughter. She is high functioning and also obstinate and difficult to live with and work with. As we are aging, we are physically and emotionally exhausted and are unsure how our daughter will be cared for when we can’t do it.
She is a “behaviorally abusive” to us, making it very difficult to enjoy her. She can turn a good time for her (or should be) into a nightmare of hitting, swearing, pounding on herself and throwing objects. She is on medications to help, causing her to gain 60 lbs, making her tired all the time and not helping with her with her temper and outbursts.
Many things can trigger her outbursts, including not getting her drink filled to the top without ice. She will go into a rant and show her fists to restaurant servers saying they should be fired. She worries that someone will sit in “her seat” or “touch her stuff” as she works herself into an out-of control state. No words or actions seem to defuse the situation.
As caregivers we are constantly living in a state of foreseeing and correcting her environment to avoid a major outburst. We are emotionally empty and feel helpless. Other caretakers we have had help us will say, “how to you do it? You must have the patience of Job!”
Early on babysitters said our daughter can only be cared for in “thirds”. Anyone having to be with her more than that can’t handle her. Guess what? As parents we are in charge of her 24/7.
Feeling hopeless we are both very depressed. Others around us don’t see this as we don’t talk about it as we would quickly lose our friends.
We have had several psychiatrists and psychologists work with us and with our daughter, but none have been able to provide us with “long term” results. Let’s just say that many traditional methods do NOT work.
I could list many experiences we have tried, but I’d be writing a book. We have had many supportive people in our lives, but it doesn’t help as we face our aging future.
Desperate and tired parent caregivers!
Anita & Gary
Nearly two-thirds of the more than 5 million Americans with Alzheimer’s are women. NEW YORK, May 8, 2017 /PRNewswire-USNewswire/ — Women are at the epicenter of the Alzheimer’s crisis, and the burden on women is never more apparent than on Mother’s Day, when families come together to celebrate their mothers and grandmothers. The disease places an… (more…)
Some of us care for a mom who isn’t able to participate in a big celebration, but other seniors are able to get out and active with some accommodations and planning. Family caregivers looking after their moms can make Mother’s Day extra special. After all, these women only deserve the best in life, considering that most of them experience both financial and health issues during the twilight years. Here are a few suggestions:
To be able to wander and experience the many joys of life is a treat that’ll delight both caregivers and their mothers. Travel is a wonderful dream to achieve, especially during the retirement years. Of course, prioritizing a senior’s safety during a trip should always be practiced.
2) Learning Something New
The golden years offer a lot of opportunities for mother’s to experience. Caregivers can celebrate Mother’s Day in a productive and enjoyable manner by introducing something different from the usual. From crafts workshops to learning a new skill (such as being able to manage a blog, driving, or enrolling in a short course), the opportunity to continue learning during the twilight years will both be a fun pursuit of new knowledge and a way to help stimulate a senior’s mental health.
3) Earn Money
Another way to observe Mother’s Day is for a caregiver to help his or her mother earn some income. This can be done by checking local listings for senior employment opportunities and presenting the options to the mother. Another is through various ways to earn online, such as ads on a blog, online writing, or being a virtual assistant. Introducing the idea of how to make money even during retirement for mothers can be a great way to uplift them.
4) Spending Time with Each Other
More than anything else, seeing Mother’s Day as an event to truly spend and make the most out of the time with mom is a great mindset and focus for a caregiver to have. Perhaps this is what matters the most: considering the blessing of being able to care for a mother over the many challenges a caregiving role has.
Do you have other suggestions to include? Let us know below!
By Leandro Mueller
As the Online Content Director of FreeMedSuppQuotes.com, Leandro Mueller aims to push for awareness and promotion of the many benefits of Medigap insurance plans in the market. He hopes that his work will help boomers and retirement industry experts alike in their lives.
The emotional and monetary consequences of elder financial abuse take a toll on caregivers as well as seniors directly victimized, Allianz Life said Monday in releasing findings of a new study. A vast majority of both active and prospective caregivers reported that they had incurred costs when their elder was financially abused, an average of $36,000,… (more…)
Are children who have a physical disability as content and satisfied with their lives as children who don’t? Yes! In this enlightening talk, Lisa Thornton, a physician who specializes in the medical care of children with disabilities, will share insights she has learned from the parents of her patients who raise happy, well-adjusted children.
Lisa Thornton, M.D. is a mom and a Pediatrician who specializes in the care of children with disabilities. She is passionate about providing reliable health information for families and believes that childhood is the best time to develop lifelong healthy habits for the body and mind.
She is Medical Director of Pediatric and Adolescent Rehabilitation at LaRabida Children’s Hospital and Schwab Rehabilitation Hospital. She is an assistant professor in the departments of Pediatrics and Orthopedic Surgery & Rehabilitation at the University of Chicago Pritzker School of Medicine.
Dr. Lisa has provided health commentary for numerous TV shows and other media outlets. She has lectured to corporations and academic institutions and has led audiences to a greater understanding of a variety of topics including childhood obesity, childhood disability, and overall health and wellness. She is married with 3 children and has a brother with cerebral palsy.
What’s keeping me up at night?
Worry about finding a good fit for my son in the community. Somewhere where he will be accepted, appreciated, and feel good about working for. It’s a hard struggle.
Worrying about my dad. When he gets the hiccups at night. His really really bad teeth. The fact that he runs out of breath while he talks. How much longer is God going to let me keep him? How to keep from reacting when he pushes my buttons.
What am I really proud of right now?
My son. How much joy and unconditional love I get from him. How he makes life fun. Learning more about Autism Spectrum Disorder so that I can help others understand my son more.
What keeps you going when you feel like giving up?
My son. The joy and love that I get from him keeps me going through all of it. The bad, the ugly, the wonder, the joy, the huge love that I feel for him, all keep me getting up every day.
No matter how great your physician is, there is one question he or she is unlikely to answer: “How much will that cost?” It is not really doctors’ fault. Medical schools and residency training programs have traditionally shied away from teaching costs. For the most part, costs remain hidden even from many practicing physicians. Some would… (more…)
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.
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.
Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly
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.
See 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.
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.
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
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.
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.
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:
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.
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.
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.
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!
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!
NEW PROVIDENCE — As Geri Payawal Shepard walked with her son to Mount Sinai’s cancer clinic in Manhattan, families with young kids buzzed around her. She stared at them for a minute, trying to figure out why so many people were outside. Then, it dawned on her: For most families — those whose lives hadn’t been… (more…)
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.
Catherine L. Ford-Barbiero
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.
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.
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.
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:
- Krill oil
- Co Q ten
- A vitamin shake from Medifast
- Two hard boiled eggs or oatmeal
- Orange juice
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.
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.
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.
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?”
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 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.
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…)
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…)
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:
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
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.
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