If you know or are caring for someone living with Alzheimer’s disease or another dementia, you see what daily life is like for them. But seeing something and experiencing it are two different things. What is life really like for your loved one or friend? If we could step into their shoes and see through their eyes, how would our perspective and understanding change?
“Great advancements have been made in the detection of memory illnesses over the past few decades, and because of that, we’re able to diagnose individuals much earlier than before,” says Barbara Harrison, Executive Director of Bridges® at Pembroke, a memory care assisted living community in Pembroke, MA. “Since there has been such a big push for recognition and knowledge of these types of diseases, the stigma around them has lessened and people are much more willing to speak about their experiences. Each person’s journey is unique because these impairments are so complex, but hearing their individual stories helps us paint a bigger picture of what life is like for them – and how we as caregivers can help give them the best quality of life possible.”
We’ve put together a story from the point of view of “John,” which is a composite of real comments from a number of actual patients in the early stages of dementia. Due to the decline of cognitive functioning in the middle and late stages of dementia, we have very few first-hand accounts of people living through those stages. However, seeing how people react and are affected by the early stage can help us support and nurture them through every stage of the disease.
John’s Story
I started to notice something was different when I became increasingly frustrated about being unable to find things. I’m not talking about things I used yesterday or even earlier in the day – I’m talking about things that I just had in my hand and I suddenly couldn’t remember what happened to them. This started happening with more frequency, and I would get more and more angry with myself. Why couldn’t I remember? I had such a good memory before this. I would just try harder to remember, because I was sure I could get through this on my own.
This went on for a year or so and I ended up hiding a lot of my difficulties from my wife even as my memory issues started becoming worse. I could still carry on a conversation, but sometimes I had to search for words, or I had to substitute phrases like “the food eating tools” instead of “silverware.” I would start to get angry for no reason, or I’d think that my kids had hidden or taken away my keys or other items when they came over to visit. They hadn’t, but I just assumed they had because I didn’t remember putting them away. Finally, my family and I were concerned enough that we went to the doctor, where I received the dementia diagnosis.
It took awhile for me to come to terms with the diagnosis, and it took a little bit longer for me to start telling my friends and family. Acceptance is something that I deal with every day, actually, because of how things are changing and how I feel any given day. I do have a really strong support system, which helps a lot.
Knowing that I have this disease is a relief on one hand because I know what’s happening to me, and my wife and I stay on top of any changes in my symptoms and talk to the doctors frequently. But it’s still difficult and frustrating, because I can see how I’m declining, how quickly I’m forgetting and I know what my future holds. That’s hard for me, but I know it’s harder on my wife and family because eventually I’ll reach a point where I’ll be beyond the point of it bothering me, and they’ll still have to deal with it.
Sometimes I feel that my wife is being overprotective because she’ll go ahead and make decisions for me. And for some things, that’s okay, like taking over the home finances because I can’t remember how to pay bills or even write a check. But I’m still independent enough to do some things on my own and make my own decisions, so we’ve had a lot of conversations about that and how our relationship is progressing. We do our best to communicate as much as possible, because I want to understand her feelings and she wants to understand what I’m going through. We don’t always see eye-to-eye, so to speak, but I know that eventually I won’t be able to make decisions on my own, and we’ve talked a lot about that and made plans for what will happen when I get to that point.
My daily life these days is sometimes good, sometimes not so good. When I try to speak, I know what I want to say in my head, but when the words come out of my mouth they don’t always make sense. My anxiety level is frequently high and I get stressed out over normal things like going shopping or taking a shower, or even walking across the street. That’s not always the case, but it is scary to doubt myself and my abilities that way.
It’s also frustrating not to know things that I know I used to know. I’ll wake up and not know whether it’s night or morning, so I have to ask my wife or look it up online. I can’t finish a book anymore and I used to love reading. I can still read short stories and the newspapers, but if I read anything over a few pages I forget the storyline. I appreciate that I can still read, however, and even if I don’t always remember what something is about, at least I know that I was enjoying reading it at the time.
Then there are the scary things – those moments where I realize what’s going on, and I know things have progressed, which is not a good feeling. For example, I spent a few days wondering why my sweater wouldn’t close. I thought the buttons had fallen off. But it turned out that my brain was tricking me – I saw the buttons but it just didn’t register that they were there. And at one point I had a hallucination that there was a ghost in our kitchen. That was terrifying. And more and more, I’ll find myself somewhere and not know where I am.
At those times when my mind is clear, I remind myself that I must be prepared for what is to come. I know that there will be days when I’m angry, when I forget where I am and when I won’t be able to do things and will have to rely on others. I’ve taken up yoga and meditation, which helps during those times.
It’s crazy the things you end up forgetting. I used to pump gas for my wife when we were out but now I can’t remember how to do that. I’ve forgotten how to cook pretty much everything. But I’m so thankful and lucky to have my wife, because she’s been an absolute saint and helper throughout this all.
I do a lot of things to keep my brain as sharp as possible. There are games I can play on my phone and on the computer, and I also do crossword puzzles a lot. There are all sorts of apps these days to help you keep up your reflexes, reactions, that sort of thing. I do what I can and I try to live in the moment. I enjoy the times I spend with my friends and family, and I’m doing everything I can to document things and make happy memories while I’m here. Even when I get to the point where I won’t be able to remember it, they still will, and that will help them through what is to come.”
If you would like to learn more about what to expect when living with dementia, please contact us at 781.754.4500.
Compassionate Care for All Stages of Memory Loss
Bridges® by EPOCH at Pembroke provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents each and every day.
Dedicated Memory Care
The team of compassionate dementia-care experts at Bridges® by EPOCH at Pembroke delivers 24-hour assistance and inspiring programs that exercise physical and cognitive abilities – all in a supportive, purposefully designed environment.
For added peace of mind, we offer simple, all-inclusive pricing options that help make the process a little easier for families.
Community Amenities
Characterized by a beautiful residential design, Bridges® by EPOCH at Pembroke provides everything residents with memory loss need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a peaceful and secure environment where residents feel at home.
Call us today at 781.754.4500 to learn more about Bridges® by EPOCH at Pembroke or to schedule a personal tour.