Mom mentioned to me that she discovered dad had been diagnosed with dementia 8 years ago this month. I think she discovered this in the little book she keeps with a log of what transpires at his appointments and discovered the info. Eight years with dementia—although we did not know then that it would be of the vascular type. We had run the gamut from hearing it may be Parkinson’s to hydrocephaly, but we never heard the term Alzheimer’s from any of the physicians at the military hospital. (One private neurologist said he had Alzheimer’s, but the symptoms just did not add up and her diagnosis did not agree with any of the other gerontologists or neurologists. Plus, the medications commonly used at that time for Alzheimer’s—Namenda and Aricept—did nothing for dad.) Eight years. And for eight years, we tried to get mom to go to a support group. Any support group. Or a counselor. To no avail. Well, that is not entirely true. One time, and only once, did she go to see the wife of a Jungian social worker/counselor I had known for over a decade. Mom returned, saying there was no way she was going to pay $120 a session to just talk. (Insert a big sigh here). And her reason for not going to a support group? She would end up helping everyone else and would get nothing out of it for herself.
So, my sister and I gave up trying to convince her to go.
And then one morning, she texted me that she was going to a group at lunch time while her respite caregiver was at the house taking care of dad. She said she had found an article in the newspaper with the date and time, and it was that very same day and at a time she could attend. It was being held at an assisted living center not too far from the house.
So, I waited with bated breath to hear how it went.
There were only 5 people there, they served lunch, but she wasn’t hungry. Hmmm. Not much information there. I gave it some time and asked if she was glad she went. Yes. Would she go again? Yes. And then it came. One gentleman was taking care of his wife, who had Alzheimer’s. She said he hit her when he did not, and the gentleman was concerned that he could be investigated for something he did not do. He did not know how much longer he would be able to care for her. Then there was a son who was helping to care for his mother. She had the same diagnosis and had wandered out of the house and was found 5 miles from their home. She was wearing an identification bracelet and was registered with the local police, but that did not help the panic he felt when he found she had left. Mom was not sure about the other people there. Turns out the person running the support group is a LCSW, which made me feel good about it. The group met once a month and she planned to schedule the caregiver so she could attend the next meeting.
But that is not the point. It is not enough. No matter how much help she, it will not be what she wants. So, what does she want? To not have to deal with this. She wants dad to be himself again. She does not want to be a caregiver. She wants to be cared for herself. We try to pamper her when we go to visit, my sister and I, but again, it does not change things. It is not enough. It does not change things back to the way they were. She wants her man back.
What would change things is her perception of this as not a burden but perhaps a gift, a gift of time with dad as he nears the end of his life. A change in showing frustration and embarrassment to acceptance that the roles could be reversed, and someone could be caring for her in the same situation one day. Wouldn’t she like to go out? Would she like to go for ice cream? Perhaps just sit and hold hands? A kiss on the cheek every once and awhile? She refused to talk to her doctor about her irritability, frustration and lack of sleep. So, the support group, bless it, was the next best thing.
The support group, through even this one single visit, might help her see that her situation was not so bad after all. Dad was not a wanderer, an embellisher, or bedridden. He could feed himself. She could afford help. It could be a lot harder than this. Still, the hurt, fear and hopelessness she feels remain.
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