The reality of my new life post-caregiver has begun to set in. And it is not comfortable here.
I am faced with a strange experience. My husband no longer lives at home. I know that he is much better taken care of in the memory care unit than I could do at home. But I miss having him here. Just talking to him, which we have done daily for 35 years, is now difficult. First, because he has difficulty speaking. The disease that is shrinking his brain, cortical basal degeneration, has also affected his speech.
This has been progressively getting worse for about a year now. At first, he would tear up because he was so frustrated at not being able to frame the words and get them out. Now he will struggle for a bit searching for the word and the muscles to speak, and then give up. He’ll just say “I don’t know.” Which just means he doesn’t know how to get the words out.
Luckily he is being treated by a speech pathologist. I have noticed that he can now say sentences that weren’t possible earlier. Simple sentences, to be sure, but still sentences.
And I miss him. We would watch TV together in the evenings while I knit or fuddled around with the iPad. I would fix his breakfast and lunch and dinner and make sure he had clean clothes and was clean. We would discuss stuff around the house and he could say yes or no and try to give me some clues as to what to do. Now that is gone.
I am lonely. I almost feel as if he has died, although I know he hasn’t, thank God. I am reminded how the ER doctors questioned why I didn’t want him to have another stroke. As if dying for him would be the best thing. I was appalled. I am not ready to face his actual death. I do not know if I will ever be ready.
One thing I haven’t done is allow myself a good solid cry about all of this. Not since the first day I learned that he had something seriously wrong with him. Which was way back on January 5, 2012. A long time ago. I’m going to do that today.
When I first started noticing memory issues back in 2000, I was told by our doctor that it was selective memory. But then he had irrational anger, which even me, stupid lay person that I am, knew was a sign of something bad happening in his brain.
After our move here to Maine we went to a practice that was so bad they wouldn’t do anything to cooperate with you at all. They wouldn’t help with medication refills, they got prescriptions wrong and they wouldn’t correct it. They became irate if I contacted them and explained WHAT they needed to do. So I found a new practice.
Our doctor has been out of the country since sometime in May. She has some sort of family emergency. But while that’s occurring, I have had to deal with my family emergency without her support. Granted she did get home healthcare into our home while I was looking for a nursing home placement. I had no idea they all have waiting lists a mile long. It never occurred to me that just finding a place would present issues.
The hardest issue for me with his being in the memory care unit is that he is not as bad off as many there. Which means I have to deal with some seriously odd people when I go to visit him and it makes me feel bad that he has to deal with them all the time. I want to bring him home, back into a normal environment. An environment where it is just us and not all these very weird people. I am seriously tempted.
I visit him often. I hope to find work soon so I won’t be able to go see him every other day or so. Hopefully regular part-time work where I will still have time to live my life. I can go back to my seasonal employer, but honestly there are never enough hours and it is so uncertain that I can’t count on an income from that. I need to earn money at least up until February when I will have my pension check. Then things might get easier. Or not.
I have come up with various hair-brained schemes to keep myself busy. One was a course in Ayurveda. Well, forget that. The course would cost around $8000 and that’s with scholarships. Right. So we can put that back into the not possible pile.
Right now I’m just reading. It keeps me from going over and over and over the what ifs. Or how can I? All regarding taking care of my husband. Even though the staff at the nursing home expressed surprise that I was able to care for him as long as I did, I still feel I should do it longer. I feel as if I have abandoned him. And I don’t like that feeling. Sigh.