In the time it took for a blood clot to travel from my Mother's heart to her brain, both of our lives changed. Within a few short months, almost all friends, acquaintances and clergy had become scarcer than hen's teeth. (Hens do not have teeth.) Hence the term I coined: "Solo Full-Time Caregiving." I was alone in my caregiving duty, and I did it full-time, with full-time meaning 24 hours a day, 7 days a week. No days off for 5+ years. After a year and a half or so, I did hire a lady to stay with Mom a couple of hours a day, usually twice a week. Those were my hours away from the house, and I did not go far. Fortunately, the gym we went to is 6 blocks from home.
I am keeping this story as short as I can, as I have published a book of 249 pages which paints the whole picture. The book's title is "Just Before the Stroke of Seven." Even with the book, I edited out another 500 pages of almost daily writing. By sharing some of my story here, my hope and prayer is that some other person in a similar situation will learn that they are not the only one doing it solo and full-time.
To this date, I have not found any publication which tells such a story or offers suggestions about how to accomplish even the mundane tasks which were at hand. Pretty much all caregiving writing makes the same suggestions --- take time off; create a caregiving team; take care of the caregiver's needs, etc. I could not figure out how to do much of that, with an 80+ year-old Mother, stricken with aphasia and dementia, always at my side.
This is not self-aggrandizement or self-pity, Dear Reader. This is just the way it was. My Mother's stroke left her with Wernicke's Aphasia, in which the language center of her brain got whacked. She talked a lot, but it was mostly word salad. Within a year or so, Dementia presented itself - or became more pronounced, as a friend suggested. The situation was that my Mom could not be safely left unattended at any time. She could not make her own food, take care of her own bodily needs, answer the phone or make any real decisions. My duty involved taking care of all of that for, and with, her.
I did finally make the choice to leave Mom alone for a couple of hours at night once I put her to bed. She was asleep quickly and deeply most nights. For the sake of my own sanity, I had to take that chance and it worked out. She came to no harm, and I only went the 6 blocks to the gym. This was probably illegal for me to do, leaving an at-risk person alone, but it is all moot and over now.
Remember the solo full-time term mentioned above? Picture yourself having to tend to all of someone like my Mother's needs, as well as your own, by yourself. And put yourself in Mom's shoes, stuck with me 24 hours a day. Charming as I no doubt am, she needed a break from my company. I had a couple of friends I could consult with on lighter matters, but the more important decisions were mine alone to figure out. I asked a family member, the only one available, to please allow me to put them on the checking account, in case something happened to me. The answer was "No."
I had no contingency plan, even for financial matters. In case something happened to me and I became dead or incapacitated, there was nobody we knew who could have stepped in and seen to Mom's care and/or placement in a facility. (There was much more to the "no contingency plan" scenario, but it is too much to write about here.) Hence, I stayed close to the house and avoided risky travel, even across town. And so it went for 5+ years, until my Mother died. She lived her last 6 months in a lovely group home, as keeping Mom in her own home had run its course.
There is more to this, Dear Reader (and perhaps fellow Caregiver) but I promised to keep this story short and readable. I am not here simply to pitch my book, and to make the couple of bucks a copy that I sell via Amazon. During the years of caregiving, I wish I had come across someone else, or their writing, which dealt with solo full-time caregiving. I might not have felt so alone, odd and isolated. Reintegrating myself into the world now that my chosen duty is over and Mom is gone? That has proven quite a challenge, but not insurmountable. I read recently that if mountains were smooth, we could not climb them. Such is life.
If you have made the choice to be a caregiver, as I did, and to keep your parent in their own home, I urge you to keep the faith - whatever your faith looks like. And if you know a caregiver who is looking a bit bedraggled, they could probably use your help for an hour or two now and again. Drive by their home and see how the yard looks. Stop by their home and see how the inside looks. Help them out if you can. If you cannot, please try to find someone who can and will. I sure could have used some help in those areas.
Lastly -- if you are a member of the clergy, please do not abandon folks like me, or other caregivers and their charges. Please....we do not need or want rescuing, at least I did not. I just could have used some moral support and spiritual/religious reassurance and guidance. Mom, too. But God took care of us, and we got through it all. I did the best I could, and to this day I do not know what I would have, or could have, done differently. I am at peace with it and I forgive those who were not around Mom and me. I still miss them. We only miss people we care about. By the way, my Mother's name was Marcie Rula.
Shalom