Alzheimer's advocates often make the point that the disease isn't just "what it is" but how we see it. Do we view our loved ones as victims of a terrible tragedy that has robbed us of them, replaced by hollow facsimiles? Or do we embrace this latest iteration of who they are and look for the joyful moments and life lessons within? Essayist Robert Leleux argues for the latter in a New York Times "Well" guest post.
Writing about his grandmother, who went from feisty and crusty to mellow and forgiving of long grudges (including against his mother), Leleux argues that his own "failure to accept the change she was undergoing" is the source of his grief over her condition.
He says that being with her taught him to live in the moment more. He believes that people with Alzheimer's still have "wisdom and insight" that shouldn't be discounted.
He writes: "I routinely hear right-minded, enlightened folks, who would never think of labeling a child 'retarded,' describe people with Alzheimer’s as having 'lost themselves,' as being 'already gone,' or even as members of 'the living dead.'"
It's essential that we reassess our thinking about the elderly and dementia, which is mired in the thinking of limiting, derogatory labels, he says. We shouldn't focus on what's lost, he believes, but what's there -- and that's the path to finding the joy in Alzheimer's.
His argument is one that many Alzheimer's caregivers can relate to. But perhaps not all of them. One wonders, for example, if he might find this perspective harder to adopt if his experience were with, say, a life partner rather than a grandmother. And some may argue that the stage of Alzheimer's influences such thinking. Is it easier to find peace and joy "in that struggle to be present, to appreciate every minute spent 'walking her to the garden gate,'" as he describes it, with someone who's experiencing mid-stage "pleasant dementia", compared with the very different experience of the severe stage?
Only those who are on this Alzheimer's road can say for sure -- and even then, the scenery and the feelings inspired by one's personal stretch of road are probably different for all.
Image by Flickr user h.koppdelaney, used under a Creative Commons license.
After reading all of your comments, I have to agree with what each person has said, because we all would have to agree Alzheimer's effects each person so differently. My husband has been in the early to moderate stages for almost 6 years and has been one of the lucky ones helped by Aricept and Namenda. Caretaking is hard work and you do wish on some days there would be someone to watch your back too. I'm still working full time and have been very lucky to be able to do so. My husband has never been in denial and tells everyone what is wrong with him. He carries a card that I made for him that explains why he can't talk when he gets stressed and it lists my cell phone number on it. He still drives in town to the familiar places but I see the progression accelerating now and know the much harder times are to come. He just had his second hip replacement surgery and completely lost 4 weeks mentally. My biggest fear was that he wouldn't come back to where he was prior to the surgery, but we've been lucky. I can't say that I don't find joy in many precious moments, but there are many times that are so sad and hard, and I don't think anyone would disagree it's very hard to watch a man you've been married to for 44 years become more like your child. Each day is a new adventure, but each person is so different. And yes, you do have to be the primary caregiver to truly appreciate how hard it can be. My hugs and prayers go out to each of you caretakers.
Whew! We as caregivers sure have a broad range of experiences. My 91 yr old Mom has dementia and has lived with me since 2002. My Mom was very difficult for the 1st few years while she was ambulatory and vocal. I started out as the sole caregiver but now she is on hospice and she gets a visit monday through friday where she gets a bath and she is sat up in a geri chair (she is bedridden now). I would encourage all caregivers to consider the help they can receive from hospice, some are better than others, even if you have a negative experience with one, you can always "fire" them and find another one. Also, my Mom has a part time sitter during the day, it really makes a difference! Now my Mom is in late stage yet sometimes she gives us a smile, or a kiss, or even says "thank you" and it blesses all of us when she does. She is surrounded by love and she responds to that. Please call the local hospices in your area and talk to them, find out what each one offers, they are all different but you should be able to qualify.
Thank you for this article. My mom was diagnosed with dementia at age 85. She is now 93. She live with me and my husband for 7 years, up until a few months ago, and I enjoyed her so much during those years, even when she needed constant care and forgot who I was. I know this is a rare blessing, but she has remained so sweet, peaceful, and uncomplaining. She no longer worries about the past or the future, but lives like an innocent child, in the present. She no longer has a stressful, too-busy life, and is a model of contentment. Having her with us caused us to move more slowly and have more patience. I gave up a lot of extra duties that weren't really important and concentrated on just a few important tasks. She is now in a care home because she cannot move and needs round-the-clock care. I love going to visit her and just holding her hand, while reflecting on the years of love she gave me. She is definitely still a valuable person.
I too agree with the last two comments. At one time, all I could see was how being a caregiver for my husband could help me become a better person. I looked at caring for him as a gift and a joy. I am the sole caregiver of my husband. I think if the author lived night and day with someone who has dementia, I wonder if he would have the same opinion. I think that just as people with Alz have stages, so we too as caregivers go through stages also. Rigit now my husband is almost at the last stage and he can be incredibly difficult to care for. By the end of the day I have nothing left. I think we caregivers try and keep as upbeat an attitude as we can and of course never belittle anyone with this terrible disease.
I agree with Robert Leleux - while alzheimer's is a horrible disease, as caregivers we help to make a difference by how we handle the situations. I as a caregiver had many highs and lows, mainly because of the stress of being totally responsible for another living being. Even though there were many challenges living in the moment and allowing my mother to be herself "whatever that meant at the time" was part of the secret of my being able to be close to her --to see her smiling and enjoying herself as she looked at magazines, read her collection old cards, etc. I believe that we are all happier when we live in the moment. And when you are a caregiver its is the only way to go if you want to feel the joy of this experience. When we think as Robert does we do have a different experience - I saw my mother as a jewel -- she knew that she could not articulate what was in her heart and it frustrated her...so I tried to find other ways for her to express herself like our herb garden and our collage of the family photos, etc. I even wrote a book about our experience which I planned to present to her...don't know if she would have been able to read it or not but she would have loved the cover...unfortunately she passed before the printing. The name of the book is Backyard Musings of an Organic Dabbler by Barbara G Henderson and it is on Amazon.com I am not telling to buy it but you can go there and get an idea of what we did by viewing the table of contents. While I think we can learn from our past mistakes, I think it is a waste of time to dwell on the past...as it cannot be changed. Release it, forgive it, move on...is the kind of self talk that I believe in using. Besides the only power to make change is in the present moment. We could die in the next moment - All of our moments make up our memories of the past and our hopes of the future. My best...
I can't resist! This is why I am proud to say, caregivers have shared their stories in two editions of Finding the JOY in Alzheimer's. (Disclosure: I edited both volumes and even have a few stories of my own and am working on another one: Finding the JOY in Caregiving.) We all can learn something from someone; whether they walk with dementia or not. We have a choice. Finding the JOY makes life easier for our loved ones and for us as we care for them.
this disease obviously has you living in the moment no matter what. I also don't and cannot see anything positive coming from alz. To watch your loved one disappear completly,to look them in the eye and as they look back at you only to see that blank stare of not understanding anything you just said.. I am the full time caregiver of my 77 yr.old mom,who is in early late stage alz.. I do try to see this in some sort of positive light but I never succeed.... I have instructed my grown children if I ever get alz. please ,just put me in a home,make sure i am well cared for in this home though. I dont want my kids to watch me fail on a daily basis and feel they are not doing enough to help keep me going. because this is exactly what happens. no matter how much you know you cannot stop this disease the caregiver always feels some sort of guilt for not doing enough.
I read the article in the Times, and while I understand what the author was getting at---that the changes that Alzheimer's brings to a loved one can be positive, and we shouldn't belittle those who have the disease---I thought it was a bit too sentimental and sugary for my tastes. Leleux didn't mention if he was actually living with his grandmother and providing her day-to-day care: I'm guessing he doesn't, otherwise his outlook wouldn't be so positive. I'm also guessing his grandmother is at that relatively mellow stage of the disease, or she might be one of those patients who is blessedly free of agitation and the paranoia that can hit suddenly. My mother was diagnosed five years ago and at 90 is now becoming more difficult to deal with: she refuses to allow me to bathe her or help her with basic hygiene tasks like brushing her teeth. She slaps and kicks me when I even touch her. She also refuses to see her doctor and becomes violent if we bring her to the clinic. Now my father is showing the signs of the disease. Like Leleux's grandmother, he was crusty and feisty, but with Alzheimer's those traits have turned into anger and paranoia. He refuses to give me money for groceries and accuses me of stealing from him. As a result, their refrigerator is filled with rotting leftovers and their pantry with ten-year-old bags of flour and dusty canned goods. He forgets to pay the bills, but when a collection agency began calling them at 6 a.m. (yes, illegal, but that doesn't stop them), he claimed he'd wrote out the checks, but I had thrown them away. I'm now in the process of organizing their financial and day to day care, without my parents' knowledge or participation obviously, but there is little positive about their situation. It's one thing to lose your memories about the bad things, but an entirely different thing to lose your ability to make a phone call to your bank and remember why you're calling them, or distinguish between fresh, wholesome food and and stuff that is rotting. I think I'd ask Robert Leleux, is this something you would look forward to if you knew it was coming? Do you believe you would have control over your thought processes to "accept" your loss with dignity and grace? My own response has been to pray I never behave the way my parents do towards my own children. I see no good in that, and I don't think they would, either.