Broken hearts all around

Tonight’s support group was a tough one. There was a pretty good turnout, a few regulars and lots of new people. And there were lots of tears. I have often said I feel lucky as far as Alzheimer’s caregiving goes. Mom was never outrageously combative. She never got mean. We had rough times, sure, but she handled much of the transition associated with the disease – the loss of driving, a move to assisted living, a move to a nursing home – generally pretty well. Especially compared to some of the stories I hear. And the early days are the hardest in so many ways. Of course, it totally sucks and hurts to see Mom decline and observe her as a shell of her former self in her current condition. But all the things that the patient and the caregiver have to figure out in the early days of the disease are upsetting and exhausting, sometimes frightening, and always new and therefore uncharted territory. So my opinion is the early stages are the hardest for everyone involved. At this point, I feel lucky still, with a mom who is content, safe and so loving and affectionate.

Most others who were at support group tonight, I think it’s safe to say, are not feeling lucky.

A man and his daughter came to recall their wife and mother, respectively, on what would have been her 80th birthday. She died almost a year ago. Her husband still comes to most support group meetings. He lived and breathed her disease for 17 years, keeping her with him at home for 14 of those years before his own health forced him to move her to the Alz center. “I get emotional,” he always says when he tears up. Of course he does. They were married for 62 years.

A woman talked about how she feels like half of herself is missing now that her husband has moved to the Alz center. She put it off for a long time but knows it was right for him and best for her, too, to move him in August. He has adjusted well, but sometimes he is mean. She also is still mourning the fairly recent loss of one of her sons, as well as her best friend’s son, who died at age 36.

A brother and sister have a mother with vascular dementia. She is living at home with her husband. These adult children both wept talking about their mother’s confusion and anxiety, their dad’s attempt to adjust to taking care of his ill wife, and their realization that their mom’s health problems are a wake-up call about mortality in general. A bright spot: the mother’s illness has really pulled the family – mom, dad and three children, all local – closer together.

A man talked about how his mom, living at home with her husband, repeatedly says she wants to go home. His solution: He lets her gather up her belongings, sometimes even the dog, and they load up in the car and go for a drive. Fifteen, 20 or 30 minutes later, he circles back to the house and announces that they are home. This strategy has worked numerous times. But every time he does it, he fears that this will be the time it doesn’t work. And then what will he do? His father described how his wife doesn’t recognize his older self, and that she will tell him she is waiting for her husband, and where is he, anyway? “It’s like a knife in my heart,” he said.

A woman really struggling with moving her mom to the Alz center has cried every time she attends the meetings. Her mom often talks about wanting to go home. She is fairly high functioning, but can’t safely live in a home setting. This daughter is just consumed with guilt and sadness. She is very close to her mother.

We often have Ohio State nursing students observe our meetings. This time, one student cried throughout the meeting while listening to our stories. I have never seen that happen before. I asked her at the end of the meeting if she has a relative with Alzheimer’s. No, she said, “It’s all just so sad.”

Yes, it is. It really is.

5 comments so far

  1. Andrea Carlisle on

    Yes. Very sad. And it takes courage to share sadness. Thank you. I wish I could thank all of them.

  2. margaret massey on

    I bet that nursing student is going to be an amazing nurse.
    How smart of Ohio State to give them that experience so that they have more depth to their knowledge.

    Nice that you can be in a solid place to help the others who are having a much rougher time right now.

  3. momsbrain on

    Andrea: It was an unusually open meeting. Some are more emotional than others. It is so nice to have a place to safely cry and get some comfort.

    Meg: I know what you mean about the student. I hope she doesn’t become overwhelmed. I do enjoy having them there – they sometimes look a little shell-shocked by what they are hearing. I do feel so lucky – I don’t know if I made clear that I was NOT crying, that I said very little and was glad to “yield” my time for those who really needed to talk.

  4. JudyDearing on

    I think I would like to attend a support group and may look into locations soon. I also am fortunate that Chrissy’s disposition is gently, humors, and usually compliant.

  5. momsbrain on

    Judy: I am grateful for this support group, especially because it is weekly. And of course it’s conveniently located at my mom’s facility, though anyone can attend. It creates a real feeling of community for me. I hope you can find one that you like.

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