My symptoms rise and fall in no distinguishable pattern. Some days are good days; some days are worse. At this point in my disease, I have really no reason to complain. As far as I can tell, I’m still intellectually intact and enjoy good conversations. Last week I spoke about my Alzheimer’s to a group of people training to be hospice chaplains. I talked for about twenty minutes, sharing a bit of my previous history, what it’s been like since I noticed symptoms and where I am now. After that I led a discussion that went well. Yesterday I read my spiritual autobiography to our small faith community and again led an energetic discussion filled with personal sharing on all sides. In some ways, then, I feel completely unimpaired.
The constant difficulty at this point is losing things … all the time. It’s not that they stay lost for very long; they’re usually hiding in plain sight. At Sunday’s church service, I couldn’t find my backpack; I asked around and nobody had seen it. I searched around the (small) room for three or four minutes and finally found it in an absolutely obvious place. It was not, however, a place where I usually leave the pack nor did finding it jog my mind of having put it there. Shortly thereafter, a friend asked why I didn’t have my glasses on; I hadn’t noticed they were gone. I nearly panicked, thinking I might have left them before church at a coffee shop. I was about to run over when I noticed the glasses lying on the table next to which I’d been sitting. I rarely remove my glasses outside our house and never without a specific reason. I have no memory of taking them off or even why I might have taken them off.
These are tiny things. They happen to everybody. But they are happening to me many, many times a day. Several times day, I will roam through the apartment, looking for my jacket, my backpack, my beltpack, or my slippers. Such little episodes are less frustrating than they might be because I am conscious of my Alzheimer’s and expect things like this to happen. I’m more curious than anything else. Having shared my diagnosis with people close to me, I’m not embarrassed when I have to ask them for the third time whether they’ve seen my notebook.
The more frustrating difficulty is the decreasing inability to synthesize bits of information from various sources. Sometimes it’s quite simple stuff like stories from several computer files (see “Confusion”); other times it’s listening to reports in a meeting and not being able to pull everything together. Most days it doesn’t come up, but it’s frustrating when it does. Usually, though, I can just remind myself: “You have Alzheimer’s, David. What do you expect?" Usually, I can let it go.
Monday morning I biked downtown to a reception of the Alzheimer’s Association Advocacy Forum that is meeting here in Washington to lobby for better funding for research. I attended one of their sessions. Some of the speakers had Alzheimer’s and some didn’t. Unless they mentioned their diagnosis, however, I couldn’t tell which was which. Yet our predominant cultural image of Alzheimer’s is the old woman babbling in the corner or the man lying almost comatose in the nursing home bed.
In fact, those of us with Alzheimer’s range across a wide spectrum of symptoms. There are a lot of us out here with early-stage disease who are still actively living our lives. Unless I die earlier from something else, I will live for many years with this disease. Right now, I have memory loss that seems significant to me, but you wouldn’t notice it unless I mentioned it or you were paying strict attention. I still teach and engage in deep conversation. Later, I expect I’ll have more significant memory loss but will still be able function meaningfully in my family and community. Still later on, I may be quite disoriented yet still live with and contribute positively to those around me. And later I will move toward those disturbing cultural images that bother us. (Even then, I’ve been told by caregivers, I may be able to have real relationships with those who care for me.)
The general public would be a lot less scared of this disease if more of us with mild impairment “outed” ourselves as having Alzheimer’s and talked openly about it.
Hello- There's a gizmo (think I saw it on Amazon) that allows the user to electronically "mark" any item to be able to retrieve with phone. Sorry, can't help with name. There must be several versions.ReplyDelete
Living in the eternal "now" has always been the best way to live. Don't you think?
Lovely post, thank you. I noticed that Alzheimer's is affecting my husband's vision, especially the ability to see contrasting colors. Black on black and white on white are hopeless in our house, and since he wears almost all black clothes and we have dark living room furniture, you can imagine the number of black jackets, briefcases, and caps that go missing! Double thumbs up to your encouraging people with Alz to come out of the closet, if you will, so that people can see it's just a disease, albeit one currently without a cure that causes loads of shame. Mazel tov!ReplyDelete
"Just a disease ..." Exactly! But it has become so much worse than just a disease: so much scarier, so much more embarrassing, so much more shameful. I hope we can bring it back out of the closet and back into the family of diseases.Delete
David,If I remove my glasses, I have a difficult time finding them without having them on. I try to always put things back in the same place which usually eliminates the need for my search and find missions, but I must wonder if a person gets less organized as they age.ReplyDelete
As for your advice for people to come out of the closet--Bravo! The best books I've read this year have been by authors who were given a diagnosis of Alzheimer's. Those books enriched my life! Thank God for those who came out of the closet. Thank you, David.
What were those books, Bea?Delete
I am reading your blog often with great interest since my Father was diagnosed with Alzheimer's many years ago. I am very glad you are willing to share your experiences with us, as personal as they may be. I am still unclear to the reasons behind my Father's behavior will never know if I did the right thing in his behalf, and I am hoping you will shed some light on our relationship.
May God be with you,
Interesting idea about coming out. I am undergoing the Neuropsycological Exam in two weeks. If I am classified as mild, I wonder if I come out at work, if they will ask me to retire? I am 64.
Wow! That's an interesting and important question! (Being retired, I hadn't even thought of it.) My guess (and it's only that) would be that the Aging Discrimination laws would require them to show that you're not fit for the job, but you should surely take that into account before coming out. Thanks for the heads-up.Delete
WOW thank you my Mom is dealing with early stage Alzheimer's and I as her daughter seem to be dealing with it with more difficulty than she. I watch her do things and forget things often and I keep focusing on the things she has lost or I have lost I am not sure which. It is so nice to read about your positive ways and thoughts while dealing with it. It has helped me to see what she is going through and see it in a very different way. Thank you so much. My Mom is 84 so I guess we could say it was "expected" whatever that means, a line that bothers me when that remark that escapes from well minded peoples mouths. I am pretty sure it is not expected at any age. Good luck on your journey you have helped me. BReplyDelete
You're absolutely right about the "expected" remark. It actually cuts both ways. On the one hand serious mental decline is NOT a normal sign of aging and shouldn't be "expected." On the other hand, approximately 50% of 85-year-olds have Alzheimer's and the percentage increases as we age. So, no, it SHOULDN'T be expected, but it's still pretty likely as we age.Delete
I have never been a 'neat-freak' and, while my house has been clean, I was able to work with areas of 'reasonable messiness'. Those days are gone. I must maintain clean, clutter-free surfaces, and I spend an hour or two each day going over items on each 'surface' asking 'What is this and does it belong here?'. I find it helps to do this out loud.ReplyDelete
In fact, I have learned it helps to 'think out loud' often now, e.g. saying out loud "I am putting my keys in the outer pocket of my purse". Some people look at me funny, but quite a few nod in recognition (just about everyone I know loses keys!)
Recently, I have had great difficulty if I have more than one thing in my hands. For example, if I have my purse and a shopping bag of groceries, I will search for my keys in the bag of groceries. If I have more than one thing in one hand, such as my keys and the newspaper, it takes me a long time to figure out how to get the key into the lock. The process of 'place newspaper down or tuck under opposite arm, find key and place in lock' -- that takes some figuring out now where such a simple task used to be routine.
I think this kind of sharing is so important. It's important to know that there are all levels of impairment, and it's important to have them described in some detail and get some idea of how you work with them.
The more I think about it, I will just request some kind of documentation from the Doctor and keep it in the background if/until they approach me.Delete
Thanks David! Another important 'tool' in my tool-kit -- "Ask for help".Delete
Now that takes a lot of mental re-programming for this independent, bread-winner, liberated woman with just a teensy-weensy bit of a stubborn streak. But this process of learning how to say "Help" has been most gratifying. I have found that most people, like me, LOVE to be asked how they can help (the more specific I can be, the better). "Oh, what's the word for those gloves you put on your hands while cooking?", "What store am I in -- they all look the same nowadays?" "What day is today?" The conversations I get into as a result, often with complete strangers, have been wonderful!
I have been trying to simplify my life to reduce stress. The fewer things I have the less there is to keep track of. A helpful book has been "The Hoarder in You" by Robin Zasio. All of us collect stuff to some extent or another and she goes into the reasons why we surround ourselves with things.Delete
I agree, thanks for the book title. I will look into that. I have a post further down about my Grandmother and my Mom. I know I will get this someday too. We are now starting to get rid of "stuff" I think a lot of people have too many things that we don't even need or use. Then there are people that have nothing, so we will donate. The big issue is we had to move my Mom's entire apartment into our house. At first I couldn't go through her things, I would just start to cry. Now almost 6 years into this, I'm just too tired. One day at a time, one item at a time, I guess.Delete
"Asking for help." When I was fully functioning cognitively, I was not afraid to ask for help. I had the confidence to say to myself: Well, if I, who is SO competent ;) need help, then others will, too, and I can feel free to as for help. Surprisingly, this grace of being able to ask for help has persisted even as I've become more disabled. I can't really explain it, but I actually LIKE asking for help now. Perhaps it ties me closer to other people; perhaps it's a way of recognizing my dependence on others and making it into a positive. Whatever ... this former Type A personality has been given a real gift.Delete
Thank you for your blog, David. My 70 year old husband (and business partner) was diagnosed last August and we've pinned the onset to 2004 when he made a pretty significant business mistake.ReplyDelete
He reads your blog as well - you are having some very similar experiences.
A number of caregivers or relatives have wondered about how to respond and if they are doing, have done, the right things. A friend lent me a video called "Senior Gems" which is free for the asking - anyone can Google the name. It was VERY helpful - I wish I'd had it's wisdom when my mother had Alzheimers.
Great post. I came across your blog while I was reading articles about how to deal with Alzheimer's disease and memory loss, I'm definitely happy I did because this was very informative. Thank you for sharing this with us!ReplyDelete
This has changed the way I am seeing my "perceived" shortcomings. Thank you for generously sharing your strength and optimism.ReplyDelete
Just heard about your blog today from CBS in the morning. So I immediately when to it. I then suggested it to my friends and family on facebook. I have an 89 year old Grandmother with this disease and it just hurts my heart to see her mind going. But I am cherishing her as she will not be here much longer. Thanks for talking opening about your disease. I pray they find a cure for this terrible disease. She attended my wedding last May and after the wedding, I had to remind her that she just saw my wedding and I got married. I was still in my wedding dress.ReplyDelete
It is heartbreaking to be with people you love who are gradually losing their mental faculties. I would try to distinguish, however, between your grief and her experience.Delete
The grief can be appropriately painful and difficult, but in our grief, can we ask the additional question of how much she is suffering? I have been surprised in the comments to this blog how many people have indicated that, as far as they can tell, their loved one is not suffering but, for many, happier than they were before. I am at a very early stage now, but already it's true for me. I am closer to my emotions and deeper into relationships with others. I am happier than I was before this illness.
By all means grieve, but honor her experience, too.
Saw Dr. Hilfiker on CBS this morning. My Grandmother had Alzheimer's. My Mother is in a nursing home with multiple health problems and late stage dementia. This is truly the worst disease, in my opinion. To watch someone you love slowly slip away. There are days she knows me and days she asks who I am and what my name is. To think of the way she once was, and not too long ago, she could run circles around me, is heartbreaking. Since she went into the nursing home, I now have heart disease--the stress does affect the main caregiver. I don't mind though, she raised me and my 2 brothers who she hasn't seen in over 27 years. That's for God to deal with--not me. So I look at this time as my time to look out for her. Thank you for listening.ReplyDelete
I also saw the CBS show this morning. Immediately, I had to learn more. So I read Dr. Hilfiker's autobiography, which I found enlightening. I fear that I will have Alzheimer. So, I wanted to know how the symptoms begin. His story gives me a new perspective on the experience of Alzheimer. I am grateful to Dr. Hilfiker for sharing his journey.Delete
I've felt from the beginning that the impact on the caregiver is the worst part of this disease. I hope you can find some way of being with your mother, of enjoying what she still has, of appreciating your relationship with her and that those experiences can alleviate some of your pain.Delete
Thank you,David for giving us your inside look at alzheimer's.ReplyDelete
I think it would be a real service to the rest of us if you would take Arle Hagburg's (4-21-13)suggestion and look at the research and experience of Dr. Abram Hoffer, MD, Ph.D. He wrote about his over 50 years of experience of using Niacin for many conditions, including alzheimer's. His observations are included in a 2012 book by Andrew Saul, "Niacin, the Real Story". Many people could be helped by using his information.