(Warning: Very long post today. I thought about breaking it into two parts but just wanted to get it out of my head today while I have time.)
Last post I mentioned how crazy things have been here lately. Here's the main reason why.
A few weeks ago, my mother (who is 93, lives alone, and has moderate dementia) decided on a new activity: going for walks to the grocery store. The grocery store is almost a kilometre from her house, and there has been construction along the main street of the route she would take to get there. The town is replacing sewer lines, which requires the use of heavy equipment. Various streets have been barricaded and there are detours around them. The detour routes change every few days as construction proceeds, and you need to be able to follow the detour signs and read the barricade signs.
Luckily, Mom has very kind and alert neighbours, and they have been able to intercept her before she gets too far. One time, one of them followed her for a bit to see how she was doing before making their presence known. Mom had gone past the barricades and was walking where the sidewalk was closed. Fortunately, the machinery wasn't actively operating at the time.
Every time the neighbours notice Mom walking further than the end of her block, they call me and I drop whatever I am doing and go take her for a drive or something else to keep her occupied. I'm concerned that her judgement has deteriorated to a point where she is no longer safe living alone. Even on days when I have planned to take her on an outing, she will go for a walk before I get there or after I have taken her back to her house. So it seems impossible to keep her safe because I can't be with her during all daylight hours.
In case I haven't sufficiently described my mother's general behavior here before, I will summarize now: she is contrary and always needs to be right. This is not caused by the dementia; it's a pre-existing trait (although dementia has made it worse). Her idea of conversation has always been to take issue with things other people say and argue against them. Although I am able to stick up for myself and will do so when needed, I don't understand arguing as a way of conversing with people. I like conversation to be conducted in a pleasant way, finding humour whenever possible and learning from each other when we don't agree. The one time I confronted my mother about her behavior, she defended it by saying it was just "debating" and that she enjoyed it. I know other people who converse the same way, so she is not alone in her view, but you get the idea: we are not alike and do not enjoy the same kind of interaction.
Since her cognitive decline began in earnest two years ago, Mom has refused to accept help except mine or my brother's. She NEEDS help with a number of things. For those two years, she has been unable to manage her medications. We tried a pill box, then pre-packaged pills from the pharmacy. Nothing helped, so I started taking her pills to her each day. She became unable to make or remember appointments, and didn't know what to do when she received bills in the mail. So I started helping her manage her appointments and bills. Her driving ability was becoming a concern - in general because of her memory loss and in particular because she got lost driving home from my house to hers (just a couple of streets away). Fortunately, her car needed repairs and the garage told her it wasn't worth fixing, so that took driving off the table. But her lack of a car meant I had to start taking her for groceries each week. She wouldn't take a taxi because of Covid. Now, two years later, she needs help at the grocery store as well, so hiring a taxi is still not an option.
I understood all along that getting out only once a week was hard for her, so I tried to include her in some of my other errands and take her for outings, but it never seemed to be enough. She was a little more content in the winter and on rainy days, but nice days brought out her restlessness. Last summer she worked it off in her yard, cleaning up weeds and old leaves. This year, she has done much less of that, because she worries about falling on the lawn.
Thus the decision to start walking to the grocery store. She wants the exercise and feels safe walking on the sidewalk. She thinks the store is just at the bottom of her street. She also thinks the mall, a ten minute drive away, is just a few streets away, and talks about walking to a neighbouring town where she grew up, saying it's not that far, when in reality it's a twenty-minute drive.
This has led to some exasperating, unpleasant, and loud conversations between us. She feels she is completely capable, both physically and mentally, of making the walk (the very nature of dementia means the patient doesn't have the ability to understand that there is anything wrong with their brain), and doesn't like being housebound without a car.
I understand her boredom - she is no longer interested in or able to do nearly all the things she used to do to pass the time. She doesn't read, she doesn't do crosswords or Sudoku, she doesn't watch TV, she doesn't make meals or bake, she doesn't do housework or laundry or yardwork. Basically, she eats, washes dishes, and walks to the compost bin several times a day.
I've asked her to accept outside help to give me a break, hoping to appeal to her helpful side (which does exist, although less so as the disease progresses), but she simply says she doesn't need help and if I don't want to visit every day, then don't visit every day. If I bring up the need for daily pill visits and buying groceries, she simply tells me to stay home and that she will manage her own pills and can walk to the grocery store.
One day she wanted to know why I thought she couldn't do those things. After telling her that it was hard to explain without hurting her feelings, and that I didn't want to do that, she said she wanted me to be honest about it. So I tried. I told her she had a brain disease that affected her memory, like a man we both know (and who she has repeatedly told me has something wrong with his brain). Predictably, she denied she has the same problem.
She is considered competent to make her own decisions until a doctor declares her otherwise. She is seeing a geriatric doctor twice a year, but he apparently doesn't make declarations of competency unless it's a crisis. Competency is to be determined by the family doctor. Mom hasn't had a family doctor for two years now, like the 150,000 other Nova Scotians who have lost doctors or live in under-served areas.
When Mom started her recent walkabouts, I asked the geriatric clinic for a re-assessment because I felt surely they would understand the danger she poses to herself. They said there was no change since the last assessment and unless she directly puts herself in the line of traffic there is no crisis. My brother was here for moral support and to try to impress on the clinician that I am burnt out and to ask what we can do if the geriatric doctor won't declare any of his patients incompetent and Mom doesn't have a family doctor to do it.
Her answer? My brother needs to "step up" more.
He lives three hours away (one way). He still works and has other obligations. He has always been available for me to talk to and to vent to (two completely different things), and tries to support me however he can, not just for mom's issues but for my own too. He does repairs for Mom when he visits, and has given me practical help including cleanup after the hurricane last fall. I don't know what more they expect him to do. (I wasn't present at the conversation between him and the clinician or I would have asked.)
I feel a strong urge to tell her - or, more precisely, tell the geriatric doctor - that it's the doctor that needs to "step up" and do his job.
The clinician's only other suggestion was to apply to the courts for guardianship. This is a lengthy and expensive process, and we still need a doctor to sign a letter of competence. Another dead end.
The ironic thing is that I believe Mom would enjoy having a care worker come to her home or even living in a care home. She loves to talk (and debate) and telling her life stories is one of the few activities she still has enthusiasm for. But she still thinks she is totally capable of taking care of her home, making meals, and doing personal care. She also thinks care homes are places where people are lying in bed and lose the use of their legs. She doesn't follow (and I think sometimes doesn't want to follow) the logic that some people are in bed without the use of their legs simply because they have gotten too feeble or ill to walk and that's precisely why they're there. She won't believe us that care homes provide different levels of care now than they used to. While she is probably not safe in the first level of care (assisted living), she would still have a fair amount of independence in the next level of care, one step down from full care.
So . . . for now and the foreseeable future, I am chained to providing at least basic care for her. I wouldn't mind so much if our time together was agreeable. But it is mostly not. I know this is partly the nature of dementia, but it is also very much her personality, is consistent with her lifelong behavior, and is very wearing to deal with. The time since my husband died has been hard enough without this. I don't mean to sound full of self-pity, but some days I am at my wits' end. I've had to refuse work at my job because I can't be sure of meeting deadlines, I've had to cancel my own medical appointments, and I never seem to have any energy for my own life.
That's pretty much the story here, the reason why stressing over the fawn in my yard was almost too much to bear. Stress from different sources builds and builds, and it can take something seemingly unrelated to bring it to a point of being overwhelming.
If you made it this far, thank you for reading.
Here's a cat who embodies everything I feel these days. I wish I looked half as cute being miserable.
