Mar 092012
 
woman

This post originally appeared on the ChicagoNow blog, “Ask Dr. Chill: Practical Answers to the Toughest Caregiving Questions.” It is being reposted here with the author’s permission.

Almost eight years at the Alzheimer’s Association — five at the Utah Chapter and close to three at the National Office right here in Chicago — left equally enduring imprints on my mind and heart. The mental imprint is analytical, bridging science and people in the shape of a fervent belief that a cure is inevitable.

The imprint on my heart is much different. It’s in the form of my own grandmother, who died of complications from Alzheimer’s disease and vascular dementia at the age of 89. It’s a delicate imprint, and it still hurts sometimes, even though she died more than 20 years ago. I see her face in almost every person I meet who has the disease.

It is because of these imprints that I took great interest in the Alzheimer’s Association’s recent release of its 2012 Alzheimer’s Disease Facts and Figures Report. This compendium of facts is impressive and startling. For a very cool visual summary of the toll that Alzheimer’s disease takes on individuals, caregivers, families, and the health care system, check out this 2-minute video marking the report’s release:

It gave Dr. Chill the chills…and some tears. According to the report, there are more than 15 million caregivers in the United States caring for someone with Alzheimer’s or a related dementia. In 2011, they provided over 17 billion hours of care valued at more than $210 billion.

But here’s the thing that really disturbs me. Caregivers don’t only care for people with Alzheimer’s disease and other dementias. There are caregivers for people with cancer, diabetes, heart disease, lung disease and those who had a stroke among other health complications. Some of you reading this blog may be caring for someone with a developmental or physical disability. Others might be taking care of someone who is simply having trouble maintaining independence due to the normal course of aging.

The numbers in the Alzheimer’s Association’s report are stunning, but they paint just one swath of the caregiver landscape. I started to wonder how much of the landscape remained. Some digging turned up a 2009 report—the most recent I could find that provides general numbers — compiled by the National Alliance for Caregiving and AARP. Caregiving in the US states there are 65.7 million caregivers in the United States caring for someone who is aged, disabled, and/or ill. Now that’s really stunning.

Remember that mental imprint I described? The analytical, more objective one. When I hear these kinds of numbers, my mind turns toward concepts of magnitude, awareness, research, the badly mired health care system, graphs, charts, grant proposals, and yes, cool videos that send shivers down my spine. In other words, I see the big picture.

But if you recall that other, more subjective imprint inside me — the one on my heart — I see a different vision. Try to imagine these massive numbers melting together into an indecipherable glob of hurt. What I see is one caregiver, one that represents the hundreds I’ve known over the years. She is tired, distraught, scared and doesn’t know where to turn for help. She feels incredibly alone. Yet she is not alone. As we’ve learned, she is literally in the company of millions.

It’s a bittersweet reality.

About Guest Blog Author Carrie Steckl, Ph.D.

Carrie Steckl, Ph.D. is a freelance writer specializing in caregiving, psychology, and aging. Her blog, “Ask Dr. Chill,” provides practical answers to the toughest caregiving questions.

 

  19 Responses to “Caregiver Facts and Figures: A Bittersweet Reality”

  1. My poem on Alzheimer's_What do I think of every day as I sit around and don't know what to say. What do I think of as I am droe around to what to me is a different town. What do I think of as you walk away, will you return ? Who are you any ways ? Oh that's right Alzheimer's has taken my thoughts away so I just sit here and suffer thru another day. My sister has Alzheimer's and I am her primary care giver for 6 years and it devistates me every single day that not enoug research is being done to combat this horrible condition. God Bless all the care givers and there families, not only does it affect the person it affects all who choses to be involved in a Alzheimer's persons life !

  2. I was the main caregiver for both of my parents who had Alzheimers disease. It is so sad, My Dad was a principal and school teacher and very intelligent and also my Mother took care of my grandmother for 10 years who had the disease. It is not easy to watch your loved ones deteriorate and not even know the ones that love them. My parents were married 61 years and they didnt even know each other before they died, because the disease took everything away from them.

  3. What's your point? Are you asking for funding for research? Are you trying to get sympathy and support for caregivers? What is your "awareness" pointed toward? Are you warning millions of people what may be in their future – with no hope of prevention, no hope of cure? As the wife who watched the decline over the years of her husband who had Alzheimer's Disease, I was always looking for helps/hints/clues on how to deal with the disease, how to care for my husband, how to handle the situation in the family, in public, financially, medically – all the many ways the disease affects the sufferer, the caregiver, the family, friends, and the people he/she comes in contact with. This article gave none of these things…..?

  4. A clear, concise summary. I lost my mother to Alzheimer's, and cared for her as long as I was able. Once she needed round-the-clock care, we were very fortunate in the choice of facility. My paternal grandfather did not fare as well, as his care facility seemed less that stellar, in hindsight. Mom had early onset…first symptoms starting at age 58. She passed at age 86, and it broke our hearts to watch the decline, and the descent into the abyss. My heart goes out to all suffering because of this; but it is especially devastating to know there are so many who go through it alone. A cure, or even a means to slow the progression by a large margin, would be a miracle. Pray for one.

  5. Funny how in the last paragraph the author notes "she" and "her"…and as a caregiver I understand completely as my brothers are no where to be found…it's been me for the past 6 years.

    • April 13, 2012Thanks so much for sharing this Bette. We all learn as we go, and it is very heufpll for me to learn from you, and others. Good job about doing something about the cell phone use. Sometimes people need to be reminded that there are times of the day when it is inappropriate and unprofessional.It also makes me feel good to know that I have company with some of the mistakes I made in the early days (and probably the later days, too) : )hmm might make for a good blog common errors in the early days of caregiving.

  6. My Mom has ahlzeimers…she has had it for probably 4 yrs or so. It has progressed quite fast I think. She really cannot be left alone, for more than a couple of minutes, she has mobility problems too. She is mixing me and my sister up and she see our father as several different people. She relives periods in her life, sometimes. She has forgotten how to cook, she needs help with most things. It is very sad that there is not more that can help with this disease. Another thing is when you have to start taking things away that they have had or that they have been doing their whole life. Meds don't seem to help my Mom…I wish they would.

  7. I love your quote “She feels incredibly alone. Yet she is not alone”. You nailed that. It is so true.

    For 8 years I was the sole caretaker of my mother who has vascular dementia and Alzheimer’s. Even though my Mom is a sweetie and basically very happy (I was lucky), it was the hardest thing I have ever done in my life. I came out of it financially destitute (almost lost my business), and very unhealthy due to the stress. I am trying now to get back my life, health and career. The verdict is still out whether I can recoup everything. All in all, I am happy I did it and do not regret the time Mom was with me.

    From what I have heard most caretakers share my story. They are alone with little help from family. Most all care taking falls on one person in a family. What can we do to support caretakers? How can we help them financially? How can we provide respite for these people who find it difficult to even go to a store to do simple grocery shopping or just need a few hours to breath let alone take a vacation or trip? The problem is getting worse. Even though caretakers save the country billions upon billions of dollars, can we even ask our government to help our caretakers in this taxed economy? What can I do to help after I mend?

    • I watched my dad, as the primary caregiver of my stepmom, go through some of what you describe. He was fortunate in that many of my siblings lived close enough to give him breaks, to help with mom, to give him a chance to vent or get out with his friends while one of them cared for mom. I've watched aging friends who were not so fortunate as my dad, did not have family close to help. Or if they did, the family did not seem responsive to the needs. Not all families understand the toll being the primary caregiver takes on a person. And many people who are caregivers will not burden others with their personal needs, feelings, etc. Perhaps your role in helping other families is making families aware of the needs of a primary caregiver? Being a caregiver advocate…being someone who, because of what you experienced, can then reach out to others who find themselves in the caregiver role and offer encouragement, practical ways to address their own needs with family members, etc. Just a thought….

    • I wish I’d known about these books when I was caring for my anilig parents. It was so hard and I look back at those years with sadness and a tiny bit of regret. The latter when I think of my impatience with my mom. My dad was amazing throughout their decline, but my mom had been enabled her whole life by my dad so when she was left along, she fell apart. I did my best but doing it all alone was very hard. Having the resources YOU provide, BB, is so wonderful!

  8. And I'm one of them, taking care of the frail and helpless old and sick people. Sometimes our role as a caregiver is overwhelming and don't know where to turn to, we too are human beings. There are times I feel so alone, but then I realized that I'm not. What shall we do if there are no caregivers like us, we play a big big role in making the sick and old, a huge difference in their daily life. Taking care of people with Alzheimer and dementia is not an easy task, one should be very understanding and must have a knowledge about the disease and one must have compassion and endless patience.

  9. My mom has had the disease for 6 years now and my dad is the primary caretaker although myself and sisters help. I just published a book "Recipes to Remember – my epicurean journey to preserve my mother's Italian cooking from memory loss." I have had coverage in the Wall st Journal on Daytime TV and soon to air WPLG Miami. It is a fundraiser for Alzheimer's as I am donating a net portion of proceeds to the so Florida chapter where I live. I was able to save all the recipes my mom prepared for us while growing up – but she can't cook a thing any more. We are grateful she can still feed herself. Visit http://www.recipestoremember.net to learn more and support me in spreading the word. There is a whole section in the book on facts and figures on Alzheimer's. We are in an epidemic and need help!

  10. My husband has Alzheimers. He's in the early stages, and although I don't see the progression of this cruel disease, our children (who only see us every couple of weeks) do. It breaks my heart that the wonderful, sweet, loving man I married is slipping away. I try not to worry about the future, which robs me of the joys I can have today, but can't help feeling this may be the best day of those yet to come. Reading comments from other caregivers is a comfort- the lonliness and isolation are devastating.

  11. I was the primary caregiver for my Mom. She died of Alzheimer's this past October. It was only recently, after my mother had passed away, that I started to search the blogs and read about other people's experiences. I wish I had taken the time to appreciate these stories while my mother was sick and while I was caring for her. There is a wealth of information and comfort to be found in the Alzheimer's community. Regular people doing extraordinary things. Sharing their trials and tribulations. Making you feel not so alone. If you are a caregiver or you are someone with the disease, please don't think you have to go through this all by yourself. As the writer above states: The bittersweet truth is that you are part of a large community. And we are all here for each other.

  12. I had no idea that memory iusess are not necessarily a normal part of aging whoa!My parents and my in-laws are, shall we say, pre-elderly (I’m sure they would just love hearing this!) and are capable, independent people. However, because of my work and because I know plenty of people in my age group (old Gen X) who have dealt with a whole range of iusess with elderly parents, I tend to do a lot of reading on this topic.I’ve just found your blog and see that it is chock-full of incredibly useful advice. Thanks for this post!

  13. I along with my family were caregivers for my Dad, Bob, who passed away on August 17, 2009 at the age of 70 after a 10-year battle with Alzheimer’s.
    Alzheimer’s is a heart wrenching disease and my hope is that someday there will be a cure.

    Caregiving will probably be one of the toughest things you ever do; but to me it was also the most rewarding and I believe the most beneficial for my Dad.

    Near the mid and late stages of the disease, there were good days but there were also lots of bad days. It was his smile that kept me going one day at a time. I found ways to cherish the little moments, not take anything for granted, and to be in the moment – a walk around the block, a hug and I Love You, spending time with his dog, and just eating ice cream. I treasured those split seconds when the person I knew as Dad would come back to me.

    My Dad loved life and didn’t let the disease take that away from him.

    Caregiving is a long tough road. So take time out for you and pat yourself on back for doing the best you can.

    By sharing our stories, we can help each other.

  14. I am grateful that I found this blog. I, too, am the one and only caregiver for my husband. Looking back, I think his symptoms started about 6 years ago. He was becoming vague, somewhat distant, didn't want to do things he use to (playing card with friends or board games). He was officially diagnosed two years ago with moderate alzheimers disease. I related this to his four daughters who live in a different state. We have been married for 24 years and have been very happy. However, being I am a stepmother (their mother died) they tend to have their own channel of communication. I think they were looking for me to step the left instead of the right , or anything they didn't like. Believe me , I remembered their and their children's birthdays, had them over for holidays, took them to theme parks etc. Well, I told the oldest one the diagnosis and I guess that started the grapevine of conversations. The youngest one who is 39 called him and said "don't say anything but she is going to put you in a nursing home". Huh??? I don't know how that happened. I have not heard from her again. I understand from the oldest one 51 years old, that the others pumped her up. Why I don't know. One of the four has not called him in 2 years until last week , she was here on vacation and stopped by to see him and said "Oh, he was always like that". Anyone out there have any of those experiences. I am trying to let it go, but find it difficult . Thanks

    • Dear JoAnne,

      I have not had those experiences, however, as a stepdauther I can assure you that their behaviors: indifferences, distancing, denial and lack of empathy is not yours to take on, nor is it a reflection of you. Just accept it for what it is and do you and the grand kids.. Just keep doing what you are doing. Keep the love in your heart as you take care of yourself and your husband. When you find it difficult ask yourself what are they (daughters) afraid of?

  15. I am extremely inspired along with your site as smartly with the structure to your blog. Is that this a paid theme or did you customize it yourself? Either way keep up the excellent quality writing, it is uncommon to see a great blog like this one nowadays.

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