Good afternoon! Regardless of where you are in the caregiving process, I hope that something I’ll say today will be helpful to you.
I was asked to address a two-part question: What was it like to be in my shoes as an Alzheimer’s caregiver, and given that experience, what recommendations do I have for other Alzheimer’s caregivers.
First, a little background: I’ll be 71 years old next month. My late wife, Clare, and I had what we often described as a fairy tale marriage. Clare died 19 months ago, one month shy of her 70th birthday, and 2 months shy of our 49th anniversary. She battled Alzheimer’s disease for nearly 10 years. I was her 24/7 caregiver at home and then served as her part-time caregiver when she was in assisted living, a psychiatric hospital, a regular hospital, and finally in a nursing home. I started writing for publication out of frustration while watching Clare being misdiagnosed, in my opinion, for nearly 3 years. She was treated first for stress, then anxiety, and then for depression when I was already convinced that, even though only 60 years old, she was already in the early stages of young onset Alzheimer’s.
So, what was my experience like as an Alzheimer’s caregiver? It was probably very similar to many of your experiences. My life was one of non-stop daily stress, with much sadness and anxiety, often accompanied by periods of mild and/or serious depression, along with intense feelings of doubt, guilt, frustration, and many other emotions. Similar strong emotions often result in many caregivers taking anti-anxiety or anti-depressant medication, sleeping pills, meeting regularly with therapists, or experiencing dramatic weight gain or loss. In my case, stress drove me to my comfort foods. I gained nearly 100 pounds during those 10 years, and it’s only been in the last year that I’ve been able to start taking off some of that weight. I also developed eczema on my face.
As many of you already know, helping a loved one with Alzheimer’s just with the activities of daily living ... basic hygiene, dressing, eating, etc. ... becomes progressively more difficult. Caring for a loved one who is constantly confused, no longer remembers your name or who you are, or who can occasionally become aggressive, is emotionally painful. When Clare was placed in an assisted living facility, or admitted to hospitals after various falls, or had to spend 3 weeks in a psychiatric hospital when the assisted living facility could no longer handle her ... and then, finally, when she was placed in a nursing home ... I still served as her sole caregiver for several hours each day.
But caregiving was then no longer my primary role ... my role had morphed from primary caregiver to primary care advocate, making sure that she was being treated properly each day. But that new role was also incredibly stressful. Even though Clare was in excellent facilities, many staff members were not sufficiently motivated, educated, or trained to consistently provide proper care, and that led to many meetings with administrative staff.
There is also a tremendous amount of financial stress faced by most caregivers. Unless one qualifies for Medicaid, is very wealthy, or is lucky enough to have outstanding long-term health care insurance and prescription drug coverage, caregiving costs can be astronomical. Again, as I’m sure many of you already know, for someone with Alzheimer’s here on Long Island, assisted living facilities can easily run between $7-$10,000 per month ... or more ... and nursing homes will charge about $15-$18,000 per month ... or more. 24/7 home health aides will cost about $15,000 per month ... or more. Caregiving costs can drain not just your loved one’s bank account, but also the retirement life savings that you’ll need as the surviving caregiver.
Once Clare entered assisted living, I suddenly had to deal with daily loneliness and enormous life style changes. Going to sleep all alone in bed those first few nights after placement was painful and lonely beyond words, and living alone for the first time after so many years of marriage brought incredible sadness. I felt that I needed to be with Clare every day, so I visited her daily for 4 hours and I also took her out for longer periods a few times each week. At a certain point, facility social workers, observing my stress, suggested that I not visit so often. I tried doing that for a week or two, but I missed not seeing Clare so much that I went right back to visiting her daily.
One article I wrote during that time was titled, “An Alzheimer’s Spouse, Married Yet Widowed,” because I truly felt both married and widowed at the same time. I loved being with Clare each day, even when she no longer knew who I was or that we were married. But many days were extremely painful. We would be cuddling on a couch in the facility lounge, I’d tell her I loved her, and she’d say to me, “I love you too ... but can you please help me find my husband?” It is no surprise to me that studies consistently find that caregiver stress is a significant factor contributing to caregiver mortality.
One person in my Alzheimer’s support group said that caring for her husband was “grief on the installment plan.” I couldn’t agree more. I experienced what psychologists refer to as “anticipatory grief” for so long that I didn’t expect Clare’s death to hit me as hard as it did. But I was very wrong. Her death hit me very hard. But, fortunately, last month I was able to post a personal blog on my website titled, “Finally Moving On With the Rest of My Life.” I still miss Clare every single day, but that persistent daily depression and horrible gut-wrenching pain and anguish is now gone. I know that there will still be times of immense sadness, along with many tears, but at least I have finally climbed out of my black hole.
That’s an overview of how life was for me as a caregiver. With respect to tips for fellow caregivers, I’d like to offer some revised excerpts of another one of my articles, “5 Steps for Alzheimer’s Caregivers.”
Once a loved one receives an AD diagnosis, there are five actions that caregivers and their loved ones should take as soon as possible.
. The attorney will review and/or prepare necessary end-of-life documents ... wills or trusts, living wills, health care proxies, and durable power of attorney. Discuss long-term health care options. If you have long-term health care policies, review the provisions together. Also, ask the attorney to review your current financial situation to determine if any assets in your loved one's name, or in joint/custodial ownership, should to be moved solely to your name.
You and your financial advisor should discuss how to preserve, protect and grow your current income, investments, and other assets, and discuss plans for how you will pay for long-term care.
What will you do if no longer able to care for your loved one at home? Does your loved one prefer to stay at home for as long as possible, or prefer to be in an assisted living facility or nursing home? What do you prefer? If not discussed previously, now is the time to have these discussions to insure your loved one's input and allow some lead time to visit facilities if your loved one will not be remaining at home.
. Major hospitals such as and , and organizations such as the , have websites with lots of helpful information. There is also a wealth of excellent information at government sites sponsored by the National Institute on Aging and the National Institutes of Health.
Try to find a support group that meets solely for caregivers in your position ... for example, just for spouses, or just for children. Such groups can focus more sharply on common issues. But if you cannot find such a group, joining a mixed group is better than no group at all. Try to find a support group meeting weekly, but a group meeting bi-weekly or monthly is better than no group at all. Good support groups can provide many helpful suggestions and emotional support from fellow caregivers who "get it.”
If I wrote that same article today, however, I would add 2 more actions that caregivers should take:
Number 6. Check out websites maintained by other caregivers. One or more may provide you with helpful support and guidance. I don’t promote my personal website with advertising, but caregivers still find me because but my site gets more than 1000 visitors every month. Many caregivers read my articles there, not in the journals, magazines, or newspapers I write for, and email me with comments and questions.
Number 7. If you have planned to take any trips with your loved one a year from now, don’t wait that long. Take those trips now or in the next few months because your loved one may not be able to travel a year or even 6 months from now.
Caregivers who act quickly on the recommendations I’ve offered today will be in better shape to cope with what lies ahead. So wherever you are on that caregiving continuum, if you haven’t already done so, please meet with an eldercare attorney and financial advisor, discuss long-term care options with your loved one, educate yourself about the stages of AD, join a good support group, check out some websites maintained by other AD caregivers, and take whatever trips you had planned to take with your loved one sooner rather than later.
This concludes my prepared remarks, but I am happy to answer any questions you may have. Hang in there, please. Thank you.