My husband and I had been together for 25 years when we first got the news. He’d been having trouble for some time; forgetting things, having trouble concentrating and generally struggling in his day-to-day life. After a while, I got concerned and finally convinced him to go to a doctor. It wasn’t long after that when we got the diagnosis: dementia.
It was a scary word to hear. It immediately brought to mind concerns about his health and safety and a fear that he would lose all the years we’d gained together. Taking a step back, though, I realised my husband and I had gone through a lot together and this was another obstacle that we’d tackle together.
If you’re like me, your initial knowledge of dementia might be limited to what you’ve seen in movies or heard about second-hand. The first thing I did to help my husband was to familiarise myself with what was happening and what was to come.
Dementia, I quickly learned, wasn’t just memory loss. It was and would continue to affect not only how he could accomplish daily tasks but his mood, personality and his ability to communicate too. I also learned that for my husband, these were symptoms that would worsen over time. For me, this further enforced that my husband would need me like never before from that day forward.
From the get-go, the symptoms weren’t as bad as they would become. It was subtle changes at first. We were both retired, so I didn’t have to worry about him at work and it was mostly little things around the house I would need to remind him of. I might need to remind him of a step he forgot while he was making dinner or he might get confused about where he was.
As I said, I knew pretty much immediately that the way my husband and I interacted and relied on each other would change. The advice I would give to a couple in our shoes would be to embrace this change. Dementia is going to progress whether you are ready to handle it or not. The best way to go about it is to be ready to make a change from the beginning.
As time went on, things got worse, as we were warned would happen. Gradually, instead of reminding him of how to cook dinner, I was reminding him of the names of things around the house. I even noticed he would have trouble making decisions.
I learned the latter problem was because he was struggling with what his doctor called ‘abstract thinking’. When I gave him too many choices, he would get lost. Now, instead of asking him what he wants to do for the evening, I give him choices. For instance, does he want to watch TV or go to bed? He seems to have an easier time when I phrase things this way.
I also saw changes in the way he behaved. My husband was and is still a sweet and gentle man. Once in a while, though, he’ll get confused and lash out at me or become suspicious of a friend we’d made over the last few years. The first few times this happened I was taken aback. Was he mad at me? Did I do something wrong? Then, I would remember it was the disease and mood swings were part of the package. I try to give him time and keep the mood light when I can.
On the running list of hard lessons I learned as his symptoms progressed was the day he got lost. We were spending time on our front porch just enjoying the warm day. While we were relaxing, though, I happened to doze off. When I woke up, I couldn’t find him.
I was panicked right away. I looked all through the house and the yard, wondering where he’d gone. The worst possible scenarios were running through my head. Was he scared? Was he hurt?
I was about to call emergency services when a neighbour called and told me that he’d wandered into their garden. It was a relief that he was okay, but it was also concerning that he and I both didn’t know where he was.
That’s when our daughter introduced me to a medical alert system, which we have for him now. When he wanders off or gets confused, he can just press a little button for help and it even lets us know where he is!
I take the lessons I’ve learned over time from these incidents and I’ve applied them to our daily routine. Recently, I made sure to offer simple scenarios. “Do you want eggs or pancakes for breakfast?” instead of “What do you want for breakfast?”. When I’m talking to him, I make sure it’s quiet. We’ve found that if we try to have a conversation and there’s background noise, he loses track faster, so I try to turn off the television when we’re having a conversation.
To keep him from panicking about where he is, I do my best to go with him everywhere. In the afternoons we tend to take walks on the trails by our house.
Sometimes he forgets who he is too. In these times, he might ask who I am or talk to me the way he did when we first met. These were hard to get the hang of at first, but I’m learning how to react to it a little better each day.
My husband has been there for me over decades and we’ve accomplished a lot in that time. Each day we learn a little more and make it through with the same persistence and love we always have.