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.






8 Comments Add yours

  1. suth2 says:

    I feel for you and the troubles you are going through. It must be so difficult being by yourself after being with you husband for so many years. My thoughts are with you.


  2. Jennifer says:

    Oh dear – it’s awful when I have to recognize that my soul asked for this! Ha! It does help to remember that!


  3. YOU will AN SHALL and as now, grow in strenth, courage and love – remember you as a soul maybe asked for it and having got the trial are so equal to it like a splendid Joan


  4. Jennifer says:

    Dear Indrajit, thank you so much. I sometimes wonder if I’m going to survive this. I know I will, but I’m not sure how! You are a treasure!


  5. Jennifer ji (respectful Indian suffix), you always move me near to tears with your love, concern, strength, fortitude – in the Indian tradition you are a veritable Sita to Rama, the ever sacrificing loving spouse – it is a wonder we have people like you around, never giving up yet cheerful and energetic and hopeful – you must be an advanced soul showing us the way in a world where people often only react to crises like yours with the hope that it will all be over soon! Dont mind the Docs with insensitivities – in India though we have Docs who are more compassionate – but then we have never been docs ourselves – they are after all dealing with issues multifold on a daily basis when compared to what we do for our loved ones only once in a while – I dont know how to consloe you except to say that the greatest treasure you have is your unfailing love for your spouse, no matter what – your soul grows by the day every minute, every second as you try – God Bless You


  6. suzie81 says:

    That’s why having a blog is useful!


  7. Jennifer says:

    Thanks so much Suzi – I felt a lot better after I wrote that. Sometimes it just gets too much!


  8. suzie81 says:

    I’m so sorry – i’ve been following your posts for a while now and it always breaks my heart a little when you talk about your husband. My grandfather passed away from senile dementia and watching his deterioration was heartbreaking. I couldn’t possibly imagine watching my husband deteriorate before my eyes and I think that your post was beautiful, honest and shows just what an unbelievably strong person you must be…

    You haven’t abandoned him – you’ve done absolutely the best thing for his well being and that is entrust his care to people who are professionally trained to make his life as comfortable as possible.

    My love and thoughts are with you. X


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