I was visiting with my youngest sister, Frankie, of Just My Opinion, about ten days ago. In the quiet of the early morning we were chatting about our on-line connections, and I mourned my lack of blogging in the past few months. "I don't have anything to say!" She corrected me, gently commenting that I have a lot to say, I just don't know how to put it down. She's so right.
I have avoided discussing my mother lately. My mother has had at least one seizure, and a host of small strokes. She is no longer in my care, but has been set up in a condo with a round-the-clock caregiver. She is mobile but requires a lot of assistance and attention. She is no longer able to do any of the things which were the mainstays of her life: writing, quilting, crafts, or cooking. She can read, but she can't retain what she's read, so she no longer reads her beloved English mysteries.
We are consumed with the problem of deciding what choice is best for EM. Do we leave her in the condo until she requires nursing, or do we look for an Alzheimer's unit? Do we need to talk to Hospice? Finding the right caregiver is a nightmare job, especially with the number of people who choose NOT to report their income and pay taxes. We will not hire a person who is unwilling to give us their social security number, so finding the perfect match is a difficult proposition.
Arranging for care for Elegante Mother on the weekend when the caregiver is off is equally difficult. My sisters and I have been sharing the duty, but it's becoming more difficult as time goes on. There is an entire book to be written about this problem.
We are in agreement that EM should not be moved to a nursing home until she requires nursing, but trying to find the right facility is another enormous undertaking. Our experience with the two nursing homes that she needed in the past has left us wondering if there IS a place that will give her the care we want for her.
One of the minor irritations came yesterday when I opened the phone bill to find that EM has been billed almost $700 for calls to Poland made by her caregiver. We thought we had put a stop to these huge bills by adding the International plan to her phone in June, but it seems her provider slipped up. What's the chance that they will take responsibility for this error and change the billing????
EM gave me her power of attorney for financial matters. I have spent as much time organizing her expenses as I do my own. I pay the bills that come in the mail, the rent, the caregiver, the hairdresser, and weekly expenses. I also have to sort through all the junk mail, and magazines which come, and deliver what is appropriate to her. We are afloat in mail that I need to put a stop to. I collected addresses from catalogs that need to be stopped, when I can make the time to send out the notices.
You can see how the problems are cumulative. It has become more difficult for me to care for EM because she is a 45 minute drive away from me now. It doesn't make sense to visit her for a quick visit when it takes an hour and a half out of my day to make the trip, so I try to spend several hours with her when I go. Usually I stop for groceries to restock the condo when I go to visit.
Yesterday, I dropped off the groceries and then went to sit with Elegante Mother while she had lunch. She is able to feed herself, although she requires assistance cutting things up. She tends to eat a cup of cottage cheese, a piece of bread or crackers, and some of the meat on her plate, and always, DESSERT! Anything sweet gets her attention.
I rarely quiz her on who she is or where she is. Instead, I ask her how she feels, or is there anything she wants. Yesterday I asked her what my name is, and she didn't have a clue. I asked her if she knew what my relationship was to her, teasing her as we do small children. "Am I your sister?" "Your aunt?" "Your mother?" "Your daughter?" None of that made sense to her. When I told her I was her daughter, she asked me to explain how that was possible. I told her that she had married my dad, and she has five children, 17 grandchildren, almost 26 great-grandchildren, and in February she would have a great-great grandchild. The woman sitting with us at the table was very impressed and told EM that was quite an accomplishment. EM looked suitably proud, despite the fact that she can't remember how it came about.
We never know what we will find when we visit. Mother is as likely to be connected and aware of her circumstances as she is to not recognize us. It's very difficult to see her fade away like this. Soon, much too soon, we won't be able to make any connection with her, and I hate to see her slip away like this. This is the woman who did crossword puzzles in ink, and wrote columns for weekly newspapers.
So, to bring this full circle, I have chosen not to blog about some aspects of my life because I feel that my mother deserves some privacy as she declines. But, what's happening in her life has a huge impact on my life. You may find me ranting about quality of care one day, or discussing how difficult it is to find the right home for an aging parent. These are the subjects that are foremost in my mind.
I know that almost everyone in my age bracket is experiencing something similar. I'm not the Lone Ranger of parental care. Perhaps by blogging about my experiences I'll find how others are dealing with the same situations, and it won't seem quite so difficult.