Her Final Year

I posted something on my Facebook profile yesterday, which got a response from someone who had cared for her parents until their deaths. Basically, she was afraid of revisiting being a care-provider by reading Her Final Year – afraid that it would confirm her fear of having been a poor care-giver.

This – *exactly this* – is one of the biggest reasons that I think that Her Final Year can be helpful even for people who are no longer care-givers. Because it shows us making mistakes, failing to do this or that right, learning only too late (or almost too late) that we should have done something differently. From the homepage for the book:

Much of the material in the book is intensely personal, even embarrassing. We have decided to share it ‘warts and all’ because that is the reality of being a long-term care-provider for someone with dementia. You will make mistakes. You will sometimes feel crushed by the isolation and stress. You will get into arguments with family and friends, and even say or do things that you later regret. You will occasionally resent, or even hate, the person for whom you are caring. We did. It’s completely normal, but seeing how others experience these things can be very helpful.

Back in February of 2008, I wrote this:

I’ve also seen others in different forums who have almost felt like they had to defend their own decisions regarding a loved one who has Alzheimer’s or some other debilitating illness leading to hospice care. I’ve witnessed those who almost seem resentful that we did what we did, because it somehow implies that they did less — that they cared less.

No. We were able to make this work out. Barely. Everyone has a different situation, and each family, each person, must come to their own conclusions, their own solutions. None is better or worse than another. Because my wife and I don’t have kids, we didn’t have to juggle that aspect of life at the same time. Because we live here in the same town as Martha Sr, and have professions which allow a considerable flexibility in terms of work hours, we were better able to adapt to providing care at home than most. Our solution worked for our situation – barely. Those final months were very demanding, and I will admit that I was pushed further than I would have thought was possible, and failed and succeeded in ways I never expected.

I will not judge another — this experience has taught me humility.

That was very early in my recovery, less than a month after Martha Sr died. As I got further away from having been a care-provider, I came to see more the mistakes that we *did* make. And I came more to understand that I had to accept those mistakes, those failures, and forgive them.

Putting together Her Final Year was part of that process for me. If you read the book, you will see those mistakes. But hopefully, you will also understand them. Because that is all part of the process of being a care-provider. Just as it is part of being human.

Jim D.

(Cross posted to my personal blog.)

Alzheimer’s Disease isn’t fickle. It doesn’t target just one demographic: it doesn’t care how well you’re doing financially, or if you’re popular, or what color you paint your toe nails or if you’re hairy or hairless. Anyone may find themselves either a victim or a potential care-giver. (From our latest Facebook Update.)

Ronald Reagan had Alzheimer’s Disease; now WaPo is reporting that Pat Summitt has been diagnosed with early-onset dementia:

Three months ago, Summitt, 59, the blaze-eyed, clench-fisted University of Tennessee women’s basketball coach who has won more games than any other college coach ever, men’s or women’s, visited the Mayo Clinic in Rochester, Minn. seeking an explanation for a troubling series of memory lapses over the past year. A woman who was always highly organized had to ask repeatedly what time a team meeting was scheduled for. “She lost her keys three times a day instead of once,” her son Tyler says. She was late to practice. On occasion, she simply stayed in bed.

There are tests which help doctors determine the type – and stage – of dementia. For some folks, these tests make sense. For others, they may be misleading. Such was the case with Summitt, according to her son. Per the WaPo piece:

Next, she was asked, “Do you know today’s date?” She has never known the date. She deals with dates strictly on a need to know basis. Frequently, she doesn’t even known the name of her hotel — there have been so many of them, and they all look the same, and they are all called Radisson or Clarion or Hyatt or Hilton.

This has always been Summitt. She has always mislaid her car keys and forgotten where she put her cellphone. She has always juggled too many responsibilities, and obligations. For this reason, the numbers from her test results are somewhat misleading, according to her son.

When I was the primary care-giver for my mother-in-law, I also noted that the tests (sometimes as simple as asking someone if they remembered a person’s name only a few minutes after being introduced) were not fool-proof. From the entry “Penny for your thoughts” in the February chapter of Her Final Year :

Part and parcel with spending more time with Georgia by her on the occasional consulting appointment and running errands with her was that we established a better understanding of each other. One of the perks of this was helping her cope with her memory and mental lapses. I encouraged Georgia with clues and triggers to help her remember things like names. The neurologist’s name — “Dr. Penny” — was one example. I placed a penny in Georgia’s hand while we waited for him, after the second time she asked me his name. A minute or so later, I asked her the doctor’s name. She looked at the penny in her hand and smiled. “Dr. Penny,” she replied with a grin. When he entered, she didn’t need to look at her hand. In fact, I think she’d pocketed the penny by that point. But she did remember his name.

This was one of those doubled-edged sword things. The blade cuts both ways — my helpful “hint” to Georgia to help her alleviate the stress of not remembering the doctor’s name and help her feel more at ease likely factored into the doctor’s evaluation, as from his perspective Georgia was able to recall his name w/o assistance.

I didn’t really think of that at the time.

Continuation of this thought… Folks suffering from dementia, particularly in the early stages, do a lot to try and compensate as well as hide their affliction. Caregivers, in spite of the best of intentions, may be enabling a form of denial in some ways — that was the thought I was trying to articulate above, wondering if my assistance to Georgia to help her with the doctor’s name was just one way of potentially helping her hide her symptoms, even though it was also a positive reinforcement of my role / relationship with her as caregiver/protector/assistant etc.

Sometimes, in our efforts to be helpful, we may thwart some of the simpler yet rudimentary tests that doctors use to establish the parameters necessary for a diagnosis.

It’s one of the additionally frustrating things about finding oneself in a care-giving role: can your efforts to help the loved one also impact – possibly negatively – the ability of doctors to develop an accurate medical picture in order to make a proper diagnosis?

A crucial factor that goes hand-in-hand with this is the issue of communication. Not just between doctors and care-givers, but also doctors and patients, patients and care-givers, and all of the preceding in various combinations as they need to communicate with family, friends, legal assistance and social workers or state & federal employees.

So, what’s ‘the problem’?

Borrowing liberally from the section of our website called The Problem, here’s the basic issue:

You may be asking yourself, “So what? Why should this interest me?” Regardless of whether you are currently providing care for a loved one stricken with Alzheimer’s Disease or not, age-related dementia and care-giving are huge issues — ones that will become even greater as the baby boomer generation ages into and through the retirement age.

How big a problem? From pages 16 & 17 of the 2011 Alzheimer’s Disease Facts and Figures report:

The number of Americans surviving into their 80s and 90s and beyond is expected to grow dramatically due to advances in medicine and medical technology, as well as social and environmental conditions.

Additionally, a very large segment of the American population – the baby boom generation – is reaching retirement age. In fact, the first baby boomers are reaching age 65 this year.

By 2030, the segment of the U.S. population aged 65 years and older is expected to double, and the estimated 71 million older Americans will make up approximately 20 percent of the total population.

As the number of older Americans grows rapidly, so too will the numbers of new and existing cases of Alzheimer’s disease and other dementias.

• In 2000, there were an estimated 411,000 new (incident) cases of Alzheimer’s disease. For 2010, that number was estimated to be 454,000 (a 10 percent increase); by 2030, it is projected to be 615,000 (50 percent increase from 2000); and by 2050, 959,000 (130 percent increase from 2000).
• By 2030, the number of people aged 65 and older with Alzheimer’s disease is estimated to reach 7.7 million — a 50 percent increase from the 5.2 million aged 65 and older currently affected.
• By 2050, the number of people aged 65 and older with Alzheimer’s disease may triple, from 5.2 million to a projected 11 to 16 million, barring the development of medical breakthroughs to prevent or more effectively treat the disease.

Perhaps the most ominous entry in the report is the one a few paragraphs further down the page:

• When the first wave of baby boomers reaches age 85 years (2031), an estimated 3.5 million people aged 85 and older will have Alzheimer’s.

That’s a pretty hefty chunk of the population.

That “hefty chunk” of the population means an increased burden on our healthcare and support systems. Given the recent trends toward carving out more unnecessary and unwise chunks from Social Security, Medicare and Medicaid, that translates out to one heck of a growing future problem. And if the current course is maintained with regard to proposed changes to Medicaid, it’s going to be a very costly problem to boot.

Her Final Year: A Care-Giving Memoir

James Downey and I co-authored a book about our experiences, and folks over on Daily Kos have been very supportive of our effort. We wrote it because we felt others could benefit from our experience, particularly as we related our experiences through the lens of “as it happens” using journal entries, blog posts and email. As we prepared for publication and began to develop both the website and Facebook page, and then began to create a marketing plan, we learned more about just how large the problem will likely become.

It’s pretty sobering, and downright scary.

We’re starting to get some formal and informal reviews. By “formal” I’m referring to ones that are posted to Amazon.com; informal ones are posted to us through various mediums such as Facebook or through email.

Here’s the gist of the Amazon reviews – so far, all 5-star ratings (thank you!):

• “Highly recommended for anyone dealing with dementia,” posted July 23, 2011 by Pam Crabtree

• “Good resource also for those not directly involved with dementia related care giving,” posted July 26, 2011 by James Kasper

• “For folks who have already walked this path, (and could possibly walk it again), this is a must-read book.” – from “Review of HER FINAL YEAR, A Care Giving Memoir,” posted August 13, 2011 by Paige A. Strickland

Remember, Her Final Year: A Care-Giving Memoir is available in both print and kindle versions as well as at a few select public libraries, so if you haven’t read it yet – what’s stopping you?

Did you know that 2011 is “The Year of the Caregiver”? The National Family Caregiver Support Program (NFCSP) is celebrating ten years of working to help caregivers, and the US Administration on Aging has declared 2011 to be “The Year of the Caregiver.” Read on for more information and for additional news for caregivers and caregiving.

Note: I am not affiliated with, nor do I necessarily endorse or have any additional information about, any of the organizations linked to in this document. – JB

From the website of the National Family Caregiver Support Program (NFCSP):

“For ten years, the National Family Caregiver Support Program (NFCSP) has provided much-needed services to assist family members who care for grandparents, parents, spouses, and children who cannot care for themselves. NFCSP funded initiatives, the Aging Network, and other caregiver organizations continuously strive to meet the needs of both caregivers and the people in their care.

To recognize NFCSP’s decade of achievement and the family caregivers we serve, the U.S. Administration on Aging is collaborating with national caregiver organizations to sponsor a year of celebration.” - Read more at CelebratingFamilyCaregivers.org

In a way, the timing couldn’t have worked out better. The population is aging as Baby Boomers begin to head into retirement, and many of them are confronting – or will be confronted with – caregiving issues concerning themselves, their parents and their siblings.

Many “Boomers” are already caregivers and don’t realize it.

And many of the offspring of “Boomers” – their children and grandchildren - are finding themselves in the role of caregiver. For many, it’s nothing new or different: it’s just a fact of life, something that’s always been part of their routine.

One of the biggest concerns during caregiving is that family caregivers and caregiving professionals are sometimes at odds with each other. It’s important for both to realize that caregivers are full partners in healthcare, and just as important as this – perhaps more so, in terms of quality of life for the patient – is the critical role that communication plays in caregiving. It touches not only the interaction between the patient & caregiver, but also the interactions between the patient and the world – including, at times, professional caregivers and legal/medical representatives.

The Costs and Responsibilities of Caregiving

As the population ages (particularly in these times of economic uncertainty), more and more people over the age of fifty find themselves caring for aging parents. There are costs associated with such care: costs to caregiver health, costs in terms of lost wages and lost retirement, costs that aren’t covered by or exceed insurance…it adds up. A recent study by MetLife showed how “Boomers” could be find themselves in double jeopardy as they take on caregiving roles: The MetLife Study of Caregiving Costs to Working Caregivers: Double Jeopardy for Baby Boomers Caring for Their Parents (available for download in PDF form at the link) gives a sobering overview of it. It’s worth reading and sharing.

Caregivers often find themselves shouldering a lot of responsibilities for the safety and security of their loved one, ranging from helping to keep them free from scammers to the need to be aware of how to make the home a more safe and secure environment.

Part and parcel with the safety & security issues – and oft unmentioned in conversations I’ve had with a few others – is the need to include a degree of emergency preparedness planning. (The Administration on Aging has some good information relating to that at the link provided.)

With all these concerns, what many caregivers refer to as a labor of love can quickly drain resources – physical, mental, emotional and financial. Caregiver burnout becomes a very real concern:

“…there are two goals of equal importance that all caregivers should adopt. The first, which almost all caregivers do automatically, is to provide the best possible care for their loved ones. The second, which many caregivers never consider, is to give the best possible care to themselves.

Both goals require commitment, patience, understanding, compassion and respect to both the person being cared for and to the person giving the care.

Caregiving is an all-encompassing responsibility too large for one person. The caregiver must learn to ask for help rather than feeling the job must be done alone.” - Betty Berry of Senior Concerns

Read more: http://www.vcstar.com/news/2011/aug/16/betty-berry-senior-column-caregivers-need-to/#ixzz1VVEZDVp8
- vcstar.com

Fortunately, there are a lot of resources available for caregivers. The National Caregiver Support Program (NFCSP) is one – there are lots of others. Some of these can be found in the form of compilations of options on a web page like the Caregiver Resource Links – Assistive Technology page from The Caregiver Partnership. Others may take the form of new technology that may or may not be suited to one’s own particular caregiving situation.

I’ve recently started to see more opportunities for caregivers in the form of informational symposiums like The New Age of Caregiving Symposium that will be taking place in Clearwater, Florida on September 23. (Reminder: I am not affiliated with, nor do I necessarily endorse or have any additional information about, any of the organizations linked to in this document.)

Undertaking the role of caregiver is a big responsibility. Yes – it is definitely a labor of love. And yes – it is often the hardest job you’ll ever have.

Become as informed as you can when you start your journey, and use any resources that you can in order to expand your capacity to take care of both your charge as well as yourself. There’s often help “out there” – it’s often knowing where to look or receiving the right information about to access that help that is difficult.

With luck, experienced caregivers and new caregivers will find their way toward each other using various forms of new media and technology, so that knowledge can be shared and the roads we must each travel may be marked with helpful information and guideposts.

Namaste.

If you check the publication date for Her Final Year, you’ll see that the Kindle version was published on July 14, 2011 and the printed version on July 15th. Of course, we didn’t actually see the book or “launch” it for almost another week, but still I feel like the anniversary deserves some attention.

It’s been . . . interesting. A little frustrating, because sales are still very low, and it’s clear that most of the people who said that they were going to buy it haven’t gotten around to doing so yet. On the other hand, those who have gotten the book and read it seem to be very, very impressed. There are now three formal reviews up on Amazon and all are laudatory.

Furthermore, as I’ve mentioned, we have several things in the pipeline which will help a great deal. Coverage by local papers, at least one large regional/national paper, college alumni magazines, and several broadcast and podcast media. In addition, people online in different forums and social media are starting to take note of the book, and that will help to spread the word. And all of that is very encouraging.

I’m always a bit torn about being self-promoting. That’s not really my personality style, and never has been. But on the other hand, I really do believe in this book and that it can help others understand more about dementia and what it is to be a care-giver. And that seems to be supported by external responses to the book so far. All of which adds to the frustration of it taking *SO LONG* for the book to start selling.

Well, OK, it hasn’t really been that long. Just a bit over three weeks. I have to keep reminding myself of that.

Jim D.

The following is from someone who knew Kathi’s part of the story from interaction on LiveJournal. Here is her review of HFY in full, with her permission and no editing.

Her Final Year: A Care-Giving Memoir and His First Year, A Journey of Recovery

Authors James Downey and John Bourke along with their wives, Martha John and Kathi Bourke have compiled a unique and very passionate account of their experiences as caregivers to Alzheimer’s patients. (Martha and Kathi’s mothers respectively) The majority of the writing is from the men’s perspective resulting in a distinctive point of view. Society typically assumes that the wives/daughters take on this role, but for these two families, the husbands became major care providers and share their experiences through a collection of journal entries and email communications over the course of several years.

Whether the condition be Alzheimer’s or some other chronic or terminal illness, many characteristics are universal, which makes this collaborative memoir very useful and relatable for anyone going through a similar experience with a loved one. Their accounts are emotional, very honest, and at times humorous, (Yes, you do need to find some bright spots every day with your “patients”!) Their advice for dealing with bureaucracy and practical coping strategies is solid and useful.

Much of the book is divided into twelve months to equate to twelve stages of care and life with a family member suffering from Alzheimer’s /Dementia. The final section, His First Year, addresses the aftermath and how these gentlemen and their families redefined their lives after the patient passes and the role of caregiver comes to an end. Readers will not find a more real, heartfelt and honest account out there aside from your own personal experience. For folks who have already walked this path, (and could possibly walk it again), this is a must-read book.

It is assuring and comforting to know that as long term care providers to a close family member, our personal feelings and ideals are “normal” and okay. It is in many ways, a personal and solitary journey, but this memoir lets the reader know they are never completely alone.

Paige Adams Strickland

All of us experienced a lot of emotional turmoil while going through and assembling then editing Her Final Year. It wasn’t just dealing with the memories, but also in dealing with the items which we had written at the time – the very thing which makes Her Final Year a powerful book for others made it very difficult for us to work with.

And just recently Martha and I have been experiencing another kind of echo: our elderly cat is dying, basically of dementia.

Our vet has assured us multiple times that she’s in no real pain, and likely won’t be, though he has told us what to watch for to be sure. He’s also asked us multiple times whether we want to euthanize her. Frankly, he’s been a bit surprised that we haven’t taken that route, since the amount of care she needs has increased significantly, and will likely increase even more before the end.

Neither Martha nor I want ‘Her Majesty’ to suffer, and we have no qualms whatsoever in euthanizing her if it comes to that. None.

But we have also been through this, and know that a natural death is nothing to fear. That is one of the lasting effects of having been a care-giver, and going through hospice with Martha Sr.

Still, while it is a good thing, this also touches very close to those memories of Martha Sr’s last weeks.

Very close, indeed.

Jim D.