My caregiver confession to you today, is that there have been times when I just wanted to run away.

With young onset Alzheimer’s, it becomes noticeable and is diagnosed before age 65. Typically, it progresses more aggressively than later life Alzheimer’s. But, there is not timeline. And with no timeline or even expectation of the rate of progression, it becomes overwhelming to the caregiver, very quickly.

So, here we are, starting our third year of my husband’s disease, although to be frank, there were signs two to three years earlier, just off and on.

I felt like I could handle it, full time caregiving. And in the beginning, which I’ve written about a little bit earlier in the blog, a lot of my attention was on all the legal and financial forms and steps that I needed to get done. That kept me pretty busy for months. And, it was the time that was probably the hardest on my husband. Suddenly, though he had been getting lost when he was running errands for over a year before this, his doctors said he couldn’t drive, couldn’t use firearms, and shouldn’t use any power tools that might cause serious injury if he had a lapse in judgement, such as with a chainsaw, for instance. So, he became very restless and irritable at me, who seemed like the one who was making all the rules. But, my marriage advisor told me, I had to stay calm and not take anything personally.

In the first 6 months, from November to April, I left the house a total of 4 times by myself. Our lives were turned upside down. My husband was still fairly lucid more often than he is now. But, he had moments he thought we were divorced. One day, he looked me in the eyes and asked me if I had seen Anne. I asked him to repeat it, and he asked again. I said jokingly, “well, which one?” And he recovered, realized he had made some mistake and said, “oh, well you, of course.” That was in the first year.

As the days wore on, and all the decisions fell on my shoulders, and I gained weight and had few clothes that fit me, I had moments, when I just wanted to run away. We had had so many fun adventures and trips, mixed in with all the normal ups and downs of a longterm marriage. And it all stopped. I missed that life. We were no longer a couple, but a caregiver and a caregivee. And it hurt. It still hurts. But, I’m coping much better, and I haven’t run away.

Anne