In the past, for reasons of privacy and also my own confusion, I have written little, if anything about the enormous challenges of caring for my Dad. He fell over in 2012 and gave himself a significant concussion. He was 6 weeks in hospital, at the end of which I was given the ultimatum to get him into a nursing home as the hospital did not acknowledge his post-concussion syndrome, claiming his dementia caused all of his memory trouble and that at 84 (then) he was not safe in the community. He has been in one, 20 minutes from my home since then. It is an expensive home, with some very caring staff. There are also some very callous financial decisions made by the 'for profit' organisation, and by certain staff members. One of whom informed me over 2 months ago that in her opinion (she's a Nurse Practicioner, so her opinion should be professional) my Dad was at the end of his life and we should withdraw all medications. I disagreed with her, and rightfully so as Dad has once again beaten the odds to continue to do well for someone with his medical conditions.
The problem that I face tonight is about Dad, but moreso about myself. It is about our relationship, and his relationship with the community and my children.
While Dad was terribly ill, both my husband and I took 6 weeks off work. We did not want my Dad to become increasingly unwell and die alone. We wanted him to be as comfortable and as well cared for as possible. So one of us (usually me) spent most of our waking hours with him. We ensured that he could get to the toilet when he needed to, that he had the right medication when he needed it, that he was not being given too many fluids, that he was warm enough, that he had plenty to eat, that he was treated as a human being and respected, not treated like an imbecile. This was a full time job, particularly when he was unstable, he needed oxygen therapy, he needed an upright sleeping position, he needed the best nutrition in the smallest food quantities because he couldn't eat a lot at a time. None of those things come as part of the 'service' at a nursing home. They do not provide one staff member to sit and provide spoonfuls of food for an hour or more so that one person can get their entire meal eaten. They do not assess the food for excessive (and deadly) salt content. We provided that to him, and he lived. And this makes me happy. If my Dad didn't want to live, his body has given him plenty of opportunity to give up. But he doesn't and for that I'm grateful. I still enjoy his company. I find it somehow reassuring that he is still there, despite the burden his continuing life places on mine. It is the circle of life, this is how things are.
What I struggle with, is the prospect of returning to my own life. My husband went back to his work last week. These past two weeks have been more emotionally draining, and deadening to me than all that time while Dad was desperately ill and I thought he might die at any moment. I find it impossible to advocate for him effectively when I can only see him 3 times in a week. I find it demoralising to leave him for such long periods of time (more than 24 hours seems long) without seeing him, or speaking to him. He isn't good with the telephone so conversations on the phone are now a rarity. Today he told me that the place he was in is good "as long as you're not in it" He wants to come and live near us, or go home.
At this point, that is what I want too. I want to at least take his 'community leave' from the nursing home and find him somewhere to stay locally and then see how we go, what we need and whether we can make a go of it with him in the community. As I write this, it sounds easy, I am reminded to call back two real estates for more information to see if I could rent either of 2 local houses. And I've just thought of another 2 houses that may be available for rent. I think what frightens me most about this is that it will be going against what my elder sister wants, and I'm not known for ever winning any kind of disagreement with her.
I'm glad that I have friends who are learning from my experience with Dad, about what not to do, what to watch out for. But right now I could really do with the wisdom from someone else who can help me to both make his time happier, and to take away this dreadful flat feeling I have inside after leaving him in the nursing home to fend for himself for the past 2 weeks. I know that we (hubby and I) have been to see him at least 3 times a week if not more, but it is not the same as seeing him every day, or several times a day. There is no time to care for him, to be certain that he's getting enough food, or that anyone is speaking to him kindly, or that he's getting to go for a walk. When we aren't there, those things don't 'just happen'. I want to be there, to be a part of his life and care.
I do need to talk this big decision over with the family. I might be feeling bereft, however perhaps my children are enjoying the extra time with me that I'm sure they are having. I don't feel that that is the case, but it probably is. Another possibility is to bring him here overnight and see if we manage ok. I think we will have to investigate that for next weekend. It is something we've been meaning to do and he's always getting sick or we are too busy (usually collapsing after he's been sick). I've needed to write all this down because for me at the moment, Dad's situation is at the heart of my own situation. All of my energy is tied into how he is being cared for, I feel very responsible for his welfare.
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