Early Onset Alzheimer’s is lonely for the caregiver

One of the things I learned right away, was how lonely it is to be a primary caregiver for a spouse with early onset Alzheimer’s. I’m sure this is true of other diseases too, but this is the disease that I know and write about.

In the last 2 years, I have learned coping skills for being alone when I’m not really alone. He’s always close by, except when he is wandering and trying to get away from the house and me, so you wouldn’t think I’d be so lonely! There are many reasons for this, but if you read earlier entries, you know that the thing that triggered the decision to get my husband tested by a neuropsychologist, is because he believed we were getting divorced. He packed up the pickup, while I was running an errand one day, and on Thanksgiving Day told one of our sons that “didn’t they know, we were divorcing and he was going to Texas.” During the confusing weekend following that declaration, I realized something was really wrong.

And even though he knew after the testing that he was in medium stage of progression for early onset Alzheimer’s, for some reason, he never really got rid of that feeling that I had done something wrong to him.

So, he rarely talks to me. He never touches me, not even a pat on the shoulder. I moved to the guest room on the main floor, because he acted terrified that I would come through our bedroom while he was dressing or I would wake up and he would be sitting up, staring at me, and he would be fully dressed. So I was advised to move to the guest room.

I’ve gotten used to it. I’ve gotten used to the pit of loneliness. And, I don’t write this to elicit feelings of pity. I’ve come to a very clear understanding in my life and know that I will be okay. The only way this disease ends is in death. It doesn’t ever get better, there is not treatment and the drugs have no proven results. The hope with the drug my husband is on, Memantine (Namenda is the generic name) is simply that during the progression, he will be able to function better. So, knowing this, I know that I will be a widow, I just don’t know when.

That may seem blunt, but please understand, this disease has affected our lives for at least 4 years, with 2 years being as I described above and in previous posts. I know, that unless I happen to go first, I will be a widow and maybe will never feel a husband’s arms around me again. It’s very likely, because the stats for widows who spent years caregiving tend towards them staying widows. That’s a hard thing to write and put out into the world. I know I’ll get through it, many women have before me. And, I try not to focus on it, because I am in this terrible, scary holding pattern. The other day, while making an appointment, it dawned on me that I didn’t have someone to hold me when I’m scared or sad or worried. I just have to buck up and deal. It makes the loneliness that much more insidious.

I put on a brave face. I know it is what it is. But, caregiver loneliness while your spouse is in the same room, is something you may also deal with, and if you are in a similar situation, I hope to share in future posts, ways that I have found to get out with people, and ways that I have found to handle loneliness when I can’t be around others.

I know this post is a little mishmash, but I haven’t really written much about this and I only touched the tip of the iceberg. But, that’s enough for now.

Be well, friends.

Anne