n November 2015 I was diagnosed with dementia, and in February 2016 I was diagnosed with Alzheimer’s disease. I was 61 at the time.
When I found out, I cried. We all cried, even the doctor. I just thought this can’t be happening, they’re just playing with me. I was in denial for a while. I wanted it to not be there. But then I thought, it could be worse.
Now, I feel like I can do pretty much everything that anyone else can do. Actually, sometimes I feel like I can do things better. I can often remember things that my husband might not remember. Like when we are grocery shopping and I will remind him not to forget the butter, for example. I’m still pretty good at remembering directions, especially if I am familiar with the area.
I wished I didn’t have this. I have trouble with numbers and telling the time, so we have a device in the kitchen that makes it easier for me to keep track of the days and the time. But I can do pretty much everything that anyone else can do. Right now, these are the only things that are really challenging for me, so I don’t care. I don’t want to dwell on it. My brain just doesn’t work the way that most people’s brains do.
It was because of my diagnosis that I lost my job as Counselling Coordinator at a local college. I had taken two leaves from my position because I had been experiencing symptoms and it was becoming increasingly more difficult to work.
During one of my leaves, I completed an intensive program in Toronto to become a certified psychotherapist. My plan was that when I retired from the college, I could practice as a psychotherapist and run my practice from my home office.
I completed the certification to be a psychotherapist and got an A plus. I was the first of all of the counsellors at the college where I was employed to complete the certification. Unfortunately, however, because of the Alzheimer’s, I was not able to follow my plan and did not return to my job at the college.
THE HEALTHCARE SYSTEM
If the doctor doesn’t know that I have Alzheimer’s disease when I first meet them, then I “out” myself. I tell them and just get it over with. Almost all of my doctors now know that I have Alzheimer’s disease. We have learned through experience that it is best if my husband John comes into appointments with me. He doesn’t speak for me, but he’s there to give me help if I need it.
I’ve never felt like any doctor has overlooked me or treated me with lack of dignity or respect because I have Alzheimer’s disease. They have all been very good.
When I told my work colleagues, friends and acquaintances that I had Alzheimer’s disease, I don’t think they knew what to say or how to react.
But today, I still go out with friends from work on a regular basis for dinner and a movie. They haven’t left me behind and I was worried that that might happen. We have a very close circle of friends who are very supportive and see each other on a regular basis. My friends will come up to stay with us here at our home or on our boat. In some ways they are more attentive than they were before. We spend much of our summer on our boat, so we have our boating friends too.
My family was shocked but not shocked. In many ways I don’t think they were surprised. Even though I tried to hide it, they saw that something was going on. Our daughters are both fully aware of the situation but it is a bit of a dicey subject. I don’t push it on them.
I don’t feel that I have faced stigma. I’m like everybody else Most people don’t notice unless you tell them.
I think it’s a lot better these days; there’s much more acceptance. People have a better understanding. I feel sorry for people who don’t have the same support that I do.
It’s kind of hard sometimes for people who are living with dementia. They are doing their best, so have patience with them.
HERE ARE MY TIPS TO HELP YOU UNDERSTAND:
- There’s a lot of loss, but I just keep going on. I don’t hide my diagnosis; I share with people what I’m living with. It’s just that the wires are crossed so I might do things differently. I’m grieving the loss of not being able to drive any longer. That is the biggest loss for me. Where we live is out of town and I don’t like to always ask my husband to drive me around. So, it’s important for people to be aware that when someone loses their drivers’ license, that is a big loss.
- I might not be able to follow conversation amongst a large group of people, especially if I’m not in my own home. In situations like this I might need some extra support. I do much better in a one-on-one conversation. It’s helpful for people to be aware of how I might be struggling and to connect with me differently.
- I’ve learned through experience that when we travel, it’s best for us to stay at a smaller resort. It’s easier for me to find my way around and I don’t get lost and overwhelmed so easily. I still want to be independent, but since I might get lost it’s good to have things in place to help keep me safe.
- I get upset when I feel like I’ve made a mistake, it really gets me down. I just want to feel “normal”. So, if you don’t need to, don’t point out the mistakes. It isn’t going to help anyone and it’s only going to make the person who is living with dementia feel bad. Don’t get mad at the person for what they did, it’s no big deal.
- Don’t always jump in and take over. Don’t do things for me if I can still do it. Let me participate in the planning and decisions.
- I just keep going and doing the things that I enjoy doing. We enjoy our boat in the summer, we run an Airbnb from our home, we are very social, I enjoy my dog, travelling, riding our electric bikes. There isn’t much that I can’t do. Remember that I have had things taken away from me, so don’t take anything more away if you don’t need to.
- I like to be involved and participate in making decisions, but it’s easier for me to keep up with what is going on if it’s slowed down. Then I can more easily participate.