Conversation for Alzheimer’s Caregivers
We are lonesome animals. We spend all our life trying to be less lonesome. One of our ancient methods is to tell a story begging the listener to say — and to feel — ”Yes, that’s the way it is, or at least that’s the way I feel it. You’re not as alone as you thought.”
—John Steinbeck.
My husband was diagnosed with Alzheimer’s disease eleven years ago—the stigma and misinformation surrounding Alzheimer’s weighed us down as we began learning to live with it. We were helped by talking with others who were traveling with us on this journey none of us ever wanted to take. We benefited from each other’s stories and we were warmed by our connections.
One of the reasons I created the book I Still Do … Loving and Living With Alzheimer’s, was to contribute to the discussion we—as individuals and as a society—must have in order to clear the clouds of fear and whispers surrounding this disease. I am telling my story so that someone else will be more comfortable telling their own.
I’d like to ask you to expand the conversation surrounding Alzheimer’s by telling your story here. I believe that everyone who chooses to be a caregiver is made of special stuff, and I’m interested in knowing who you are, why you chose to take on such a challenging role and how it’s changing your life. It’s a story only you can tell.
Ultimately, this site is yours and you will decide what you want from it. But—for my part—I’d like this to be a place where stories are shared.
This is the story behind the creation of my book I Still Do:
My life was upended in 1998 when my husband, Ed, was diagnosed with Alzheimer’s. We had been married for three years. I was recently widowed and he was divorced when I fell in love with this accomplished man who ate the right foods, exercised and completed his crossword puzzles in ink. There was no history of the disease in Ed’s family, but Alzheimer’s doesn’t play favorites and it doesn’t play fair.
The future, as we had planned it, wasn’t going to happen.
For a couple of years after receiving Ed’s diagnosis, we evaded reality and denied growing evidence of the illness. It was true that Ed had trouble with his memory. He didn’t track conversations the way he used to and he was sometimes uncharacteristically irritable. At the same time, he also avidly read his medical journals, became an active partner in a start-up business, and played tournament golf—amazingly sinking his third and fourth holes-in-one.
Searching for answers, I bought a stack of books on Alzheimer’s. It took me two years to open the first one.
During this period, I was actively involved in making, exhibiting and selling fine art photographs. I focused my eyes and my camera on strangers and, occasionally, took superficial snapshots of the man I love. I’ve always seen things more clearly through my camera lens, and I wasn’t ready to confront—to literally zoom in on—what was happening to Ed.
Eventually, the dancing and the denial stopped. I began making photographs of my husband, my friend, my lover, and muse. I photograph Ed to remember him, to celebrate him and to keep him close as he’s leaving.
Ed’s support, encouragement, and partnership as we worked together on what started as a photography project and ended as a book, resulted in a great gift to me—personally and professionally—but I ache because we can no longer share the results of this special collaboration. Ed’s Alzheimer’s has progressed to the point where he has severe visual agnosia and his brain no longer makes sense of what his eyes see. Photographs and written words hold no meaning for him. And he’s forgotten that we created a book—together.
My husband, Hank, was diagnosed in 2001. From that moment we became everything Alzheimer’s, education, support groups, community advocates. He did not mind sharing his life with Alzheimer’s, partly because it put him in the spotlight, which he has always loved. We encountered kindness, lower expectations of him and a pride in trying to help others begin to come to grips with the disease, embracing it rather than rejecting it. The Alzheimer’s Association and the Shiley Marcos UCSD Alzheimer’s Research Center have been unparalled in their assistance to us.
As the disease progressed for Hank, life became more challenging and I learned how to do things I never wanted to do or thought I would ever be required to do. About two years ago things became more difficult for Hank, and therefore for me as well. We fared quite well until June of 2008 when Hank had to have surgery which required a general anaesthetic. His function declined measurably and required placement two months after that. It was the unexpected issue I thought I would never have to deal with. “No, not us, never for us” was the feeling in my heart. Hank and I both survived this drastically unexpected step. He has been there for 10 months now.
I know he is safe, getting wonderful care and is calm and content. I am able to spend my days with him and we are enjoying one another in a joyful, unrestricted manner. It took time for him to adjust, but he looks forward to my being with him and I do as well. I take a photo album each day. He always took all of the pictures and made the albums. We have 86(!) of them and we are on the 3rd go round of looking at them. It is so enjoyable for both of us and helps him see familiar faces and places. Our life was filled with good times. If we didn’t have these albums he made, alot of that would be lost in my memory bank as well. After 54 years of marriage there are many events.
I admire your love for your husband, Judith. I adore mine as well.
Thank you for your blog. Will look forward to your published book.
Jayne
You and Hank are so fortunate to have 86 photo albums and 54 years of marriage filled with what are obviously rich memories. What a gift.
You mentioned learning many things you never expected to know as a result of being married to someone with A.D.. I’ve heard that from others, Jayne, and wonder if you’d mind expanding on that?
In December 2005, my partner was diagnosed with Mild Cognitive Impairment (MCI). At the time, she was 49 and I was 43. I’d like to add my story to your blog though it is not fully written. We are in the beginning chapters.
I wouldn’t trade these three years. I’ve learned to live with ambiguity as I’ve wondered whether her MCI will progress to AD. I’ve learned a lot of other things too.
I’ve learned of the strength one can possess while keeping your knees bent. Someone I am close to said that this disease “requires you to practice the things you need to practice anyway – living in the moment and going with the flow”. I try to do just that.
I’ve learned a lot about neuroscience – mostly what a mystery the brain is and how little is still known about MCI and AD. I cannot seem to get a definitive answer on how likely it is that MCI converts into AD.
I look forward to the publication of Judith’s book, reading other stories here, searching for answers together and being a part of this conversation.
In November 2002 my husband, Carl, was diagnosed with AD. He had just turned 69 and I was 53 and had retired in July 2002. We were looking forward to many years of travelling together. He started taking Aricept right away but that was the extent of our “dealing with it”. We continued to travel and pretty much ignored what might be ahead for us. I’ve always been an optimist but also a realist. Obviously not the latter with respect to Carl’s disease. My mom suggested I go to a support group and there was one close to home. I started attending in 2004 and, after a dozen or so meetings, I decided that I was getting nothing out of the group. Every one else had been in the group for years and I never felt like I fit in…maybe because I was much, much younger than the others. It never occurred to me to find another group. Fast forward to April 2007. Carl and I had just returned from a marvelous 2 week cruise and for the first few days when we were home, all he seemed to do was sleep. I figured it was jet lag. Our third day home he had a dental appointment and, as usual, he drove himself. The dentist called about 30 minutes after he left and asked if he remembered the appointment. He was missing for 6 hours when he FINALLY made it back home. He had no clue where he had been or where he was supposed to be going. The next day we went to the doctor and he was diagnosed with pneumonia. 10 days of antibiotics cleared that up. However, his cognitive level had declined quite a bit due to the pneumonia. From this point on, when I was going to be gone for more than a few hours, I hired caregivers. He strenuously objected but accepted it when I told him it would make ME feel better. In the late summer of 2007, we started attending the support group at the ADRC. One for him and one for me. Wow! What we had been missing for all those years. Wonderful people, wonderful facilitators and we both made friends almost instantly. September 15, 2008 was the next major incident. That day he woke up in a fog and his cognitive level rapidly declined. We went to the doctor who immediately sent us to the ER. He was hospitalized for 10 days and, again, the diagnosis was pneumonia. However, this was FAR worse than in 2007. He was delirious and never, at any time, did he know anything other than his name and my name. MRI, a scan and a series of blood tests were all negative. Just the pneumonia. Though he recovered from the pneumonia, he lost the ability to dress and bath himself. He couldn’t go to the bathroom on his own and couldn’t walk very well. He couldn’t use a walker because he couldn’t learn how to use it. His cognitive level this time slipped dramatically. I saw that I couldn’t take him home so I decided to place him in a board and care for 30 days. Maybe he would regain some of his abilities. He’s been there almost 9 months now.
Learning new tasks is good for your brain. Learning new tasks you do not choose is also good for one’s growth as a person. I truly became a handyman, learning how to fix a toilet, use a power drill, etc. For me the most difficult thing to do was to insist on quality work from workmen who came into our home and expected to get direction from my husband. He didn’t care anymore how they did things – he just liked having them around to talk to, so if they were nice they could easily take advantage. He began to accept mediocre results. That meant I had to take action and take over. Planning everything was another unexpected activity. Hank had always been the event planner in the house. Now he wanted to continue a similar agenda but it was now my job. The most difficult thing thrust upon me was being “the boss” and keeping him thinking he still was that boss. Making all of the appointments, being the record keeper of medical visits results, staying near at a social gathering so that he was able to recall names or faces of people we knew, dispensing medicine, paying the tab in a restaurant, checking everything constantly for him. Your life becomes a completely new entity when Alzheimer’s is a guest in your home. Driver, nurse, accountant, mother, cheerleader, activity coordinator, mechanic, painter, even a doormat at times. It seems so long ago when I had to assume these responsibilities and many others. Yet, it really is just a blip in a life. It does give you alot of stories to tell to your friends. One side note – it occurs to me that early on the most time intensive you have is the process of searching for “lost” items, facts, things that your spouse or family member has displaced. If we added up all of the hours on that one thing it would seem like a lifetime within itself.
Jayne
Yes, it was quite challenging (yet so VERY important)to gradually take over responsibilities while, at the same time, making Carl think he was still doing everything. One of the hardest was secretly taking away his access to money. I waited too long and literally paid for that mistake!! When I returned from a 3 day hiking trip, he told me how a “friend” came over and trimmed the trees in our backyard. He proudly showed me how nice everything looked. Well, the trees were trimmed for sure but not all THAT much. I asked him who is friend was and he showed me the business card the guy gave him (a friend???). And, according to Carl, he only wanted $4,000 in cash to do all the work!!! FOUR THOUSAND DOLLARS????? Yep, and he’d gone to Union Bank (1/2 mile from our house), where we had an account. Though I was furious with Carl, I tried to remain calm on the outside. Why be mad at him anyway? It’s the disease, not Carl. I beat myself up over it though as it really was my fault that I had procrastinated. I took the ATM card from his wallet and closed the account at Union Bank. Though his name remained on other accounts, he had no idea where our money was. Oh yes, about a week after the tree trimming, I noticed Carl out on our driveway talking to a guy I didn’t recognize. I went out immediately and Carl introduced his “friend” though of course he didn’t remember his name. I knew full well who he was though. I told Carl we had a plumbing emergency in the house and he needed to check it out ASAP. After Carl left, I gave the man a piece of my mind and I told him that if I ever saw him on our property again, I would call the police and have him prosecuted for scamming Carl. I told him I had a sister who was a lawyer (true) and a sister who worked for the police department (just a volunteer but I didn’t say that). I must have scared him because he never came by again.
In our case, Sue, it was subscriptions for Golf Magazines – a far less costly lesson. Every time Ed sent a check to pay for a year’s subscription, he’d get a notice with a reminder that he should renew his subscription; so he did. By the time I figured out what was happening, he had pre-paid for thirteen years worth of golf magazines.
Based on the stories I’ve heard, this is a lesson that’s usually learned the expensive way. But it doesn’t have to be — limiting access to credit cards and the checking account is difficult (almost as difficult as taking away the car keys) but it is possible.
Thanks for sharing your story; it’s a good heads-up for caregivers who haven’t yet been through this type of experience.
Judith, a friend told me about your book and I can’t wait to read it. My husband was diagnosed with AD 3 years ago. He is 56 and I am 44. Not what we had planned at this stage of our lives. The support of our friends and family has been wonderful, but it is still such a lonely, lonely place. Losing a little piece of your best friend, lover, etc. day-by-day is absolutely heartbreaking. Thank you for writing about your experience for not only those of us dealing with the disease, but those I hope never have to.
I feel awful, Shannon, for not responding sooner to your heart-rending post.
Between moving my husband to a facility in late June, the release of “I Still Do” in early October, and my advocacy on behalf of AD caregivers, my live has been lived on the run and I haven’t checked my blog in months. That won’t happen again.
It’s hard to deal with AD at any age—but 56 and 44 are entirely too young. I’m glad you have the support of friends and family and I hope you are comfortable asking them for specific help. I tried to do too much by myself for too long—and that just doesn’t make sense. I also hope you have a passion of your own that you will make time for; please don’t let your life be defined by AD.
I’d like to hear from you and know how you’re doing. You and your husband have my very best wishes.
I can’t wait to read this book. My darling husband, Will, was diagnosed with AD at 49 in 1997. His family has a strong genetic link for early onset.
I was 42 and we’d been married for 13 happy years; great careers, lovely new home, lots of friends and interests. Our life derailed.
I continued working full-time, managed all the finances, worried about the mortage and the costs of his illness, planned for his long-term care, dealt with Social Security and the details of his retirement due to disability, life insurance, struggled for years with my own grief and emotions and with his, all of it. he was cared for at home for 4.5 years and then, he became unmanagable and at 54, he was still young and strong. He went to skilled nursing care at the Alzheimer’s Resource Center of CT. This is an amazing, innovative place, that hs done nothing but dementia care for 20 years. I thank God I found it; many are not so lucky.
I heard an almost elegaic tone in your voice about caregiving. I did not find it so. In the 7 years he was ill, i was frightened, lonely, confused, resentful, and often enraged at a world that would take my beloved in such anguish. The long bereavement process with AD was devastating, even with help from mental health professionals.
Will died at 56 in 2003 from a traumatic brain injury resulting from a seizure. In the last 6 years I have struggled with post-traumatic stress disorder that has made friendships, intimate relationships, and even work, once my solace, difficult. After 22 years at 1 university, I’ve had 3 jobs in the past 4 years. None of the mental health professionals I saw diagnosed ptsd. When I asked one of them 4 years ago about the possibility of caregivers and ptsd she asked if I was having nightmares or flashbacks. When I said, no,she said, “Then you don’t have ptsd.” Last year, my sister was reading a book by Johnathon Shay on Vietnam vets and said she saw me on every page! After that,
I finally found a professional who when I described the last deciade of my life to her, said, “Absolutely ptsd!” and I have continued to work with her for the past year.
Are there any other family caregivers out there who have similar experience with ptsd? I’d love to know. It’s something NO ONE talks about and I can’t be the only one.
I guess this is a grim snapshot of my experience with AD. But it’s honest, though incomplete.
I agree that there are compensations, if you are willing to open your heart to them. It forged incredibly strong bonds between me and friends who chose to stick by me to the end. And they did; and it saved my life, many times. One couple used their vacation to take Will to Florida to give me a week off. They all gave of themselves unreservedly for love of me and Will. 6 years after Will died, I am still close to those friends and they are a huge part of rebuilding my life. The same is true of my brother and sister.
Thanks for the opportunity to “talk”, and hope to get some insight on caregiving and ptsd.
Kate
Kate,
Your comments really touched me and, as I told Shannon, I’m horribly embarrassed about being away from my blog for so long. What you’ve said needs to be part of the conversation surrounding AD and caregiving. Just as each person with AD has a different experience, so, too, do caregivers. Your experiences have been horrific—but, as you’ve said, you’ve been fortunate in friends. I’m sorry it took you so many painful years before you found the help you needed. I think your comments will help others.
I know I’ve had it easier than many others and I know I’m fortunate in that regard. Which doesn’t mean it’s been easy—it’s not. Ed continues to decline and I’m unbelievable sad (and angry) about losing my best friend. I’m heartbroken that I can’t share with him my life surrounding the release of “I Still Do”—it’s part of our partnership and our lives together, but he has severe visual agnosia and his brain doesn’t recognize the photographs or the book. He doesn’t understand how many people he’s helping as a result of “I Still Do”—he doesn’t know how many people feel they know him and how many care about him. All of this, and so much more, is heartbreaking to me.
Through this journey, I’ve tried to focus on those things that are still left—to me and to Ed. That’s easier to do in some situations than in others. I’ve also been fortunate that Ed has retained a sweet nature.
I hope you’ve been able to get back to your work and find the satisfaction from it that you used to. My love of photography and writing has helped keep me sane.
I wish you well and hope your story makes others feel less alone.
Judith
Thank you for your stories. My dad age 65 has Alzheimer’s. I have been his caregiver until recently. He is not at Assisted living with his kitty “Gus”. He still knows me(as of yesterday), I sure miss him.