Probably not ever going to be officially diagnosed
I have a really strong and independent mother was pointedly told me that she is not senile. And yes, senile, is a term that she used when I tried to have a conversation with her about things that I had noticed that were concerning related to her mental health. That was now, about three years ago although I'd seen things several years prior to then. But dad just said - she just needs rest.
In doing some research, I might gather that my mom could be somewhere in the latter early stages or moderate stages of I think Alzheimer's but of course we're just saying dementia. But I know that we will probably never have the opportunity to get her officially tested so that we have an actual diagnosis. She's just not that woman. I fear she will never reveal that there is a problem. I just don't think it will ever happen. More importantly, because of who she is in her independence, her strength, her will and the profession that she retired from... presentation is everything and she's made a career of presenting well and being very articulate so this is really hard. When I say hard, not just for her, but also for us because it's not easy to discern whether or not she even knows that she has dementia or whether that is the dementia itself . To this end, we haven't been able to really have any fruitful conversations about the changes in her mental health. The things that she's forgetting, the concerns that we have with things that have risen that question her safety and that of others. She's functioning fully right now. She still drives. She still cares for herself so at face value, you'd think nothing is wrong. To know her intimately as her daughter and to know her intimately as my dad, her husband, we know that something's off and something's not quite right.
Last year was a tough year and we definitely recognized a change in her mental health such that it declined and we felt this shift. But we really believe that this has everything to do with very significant events that might've been somewhat traumatic for her. We are in Florida so during the fall we always encounter hurricane season and last year was a pretty bad one and a pretty scary one. And we had a lot of hurricanes and the stress of the unknown with these storms almost back to back and I think that had everything to do with some of her decline. We also experienced a lot of the highs and lows with the election last year which I think for everybody was just dramatic no matter which side of the aisle you were on. Then more recently, the man who's somewhat responsible for keeping a roof over her head, not her biological father, but a father figure took ill and was in the hospital for at least a couple weeks. He has since bounced back, but I think that window of time was very hard for her even with dementia. She was exhausted from staying all day and night at the hospital. Somedays she was out of it becuase she was so mentally tapped out and was not sleeping. I'm not sure if she cried. I'm also not sure how she was affected emotionally, but I do know that she was impacted by it and I do know that she was not sleeping well if at all, although that's not really anything new.
If you have any advice on this or anything, please share I'm starting this journey as a daughter. I am an only child and I am quietly terrified of what's to come - just the not knowing...
I just convinced my dad just in the last few years that something was wrong. He was in denial, I think. She just needs to rest - he's say and then she'll get better. I think it was all apparent, at least to me, from the time she retired - that was 11 year ago.
share what you can I'm open thanks...
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@wctdoc1943 thank you for this post. Sorry I disappeared from the community for a bit. Everything that you wrote resonates with me. Let me respond to your questions:
Are you observing significant short term memory lapses, changes in her language function, repeating herself? YES - absolutely. This seems to be dynamic. Every day is different and sometimes it changes throughout the day.
Has she gotten lost while driving or had minor accidents? Most likely because there are long time lapses between when she leaves and returns and most often she says she is going to one place that is nearby. Fortunately, she is not driving much these days. I believe she is aware that something is not quite right and this is why she will stay home all the time. Plus and minuses there.
Is she able to manage finances (keep up with bank balances, pay bills on time)? Maybe. She's old school - so she still writes check for a couple of bills and mails them at the post office. My father has always managed the finances. Before dementia - she was not good with money management. I have noticed a pattern of anxiety with anything financial - anything with numbers (review anything or even conversations related to finances).
Does she do grocery shopping and make appropriate purchases? Dad does all the grocery shopping. She has always loved to shop. This has always been a coping mechanism for her. It is a problem now with dementia because she is aware (I think) of her illness and her shortcomings now and will shop as an escape. This is my own thinking here though and a pattern that I am recognizing.
Is she able to follow a recipe or cook a meal? A recipe- probably not. She will make what she remembers to make - which often is the same thing over and over again. The meal will be simple and not sufficient though - we help to supplement. For example, she'll just make a salad or just make a protein. She is not really able to consistently create balanced meals. She'll just grab things to heat up that are not appropriate for breakfast, for example. But this is not all the time. On a really good day - she pulls together a great meal independently - but then she is completely wiped out after that. She has a fixation with chopping (honestly scares me a bit because unlike many folks have shared on here - she is NOT sleeping)- although it's not as bad as it was say a year ago. Last year, she would chop everything at once - onions, carrots, peppers, tomatoes (some of which you'd chop as needed). We'd realize everything was chopped and we'd have to rush to use/eat things quickly. Now it is just carrots thankfully. 🙂
I love that you offered "Some patients with dementia are aware of their cognitive loss and fret about it. Others are either unaware or are in total denial, despite the evidence." I think she is a mix of all of these. Again, it depends on the day but overall - she's typically angry and combative which is very difficult for me and dad because we cannot get a solid plan for how to support her more routinely. Most often, she'll blow up at us over things we try to help with (because help is required, for example, with her dog) and when we try to talk about things together - she'll leave the room, go outside away from us, or previously leave in her car (this is not occurring now thankfully).
I do believe Alzheimer's is hardest for the caregiver. In my experience, most caregivers are coping alone and get help only intermittently from other family members or friends. A couple of hours of relief is welcome, but the hour-by-hour, day-to-day relentlessness , is exhausting. My husband is in complete denial about his condition, yet it's obvious to everyone, including his neurologist, that he's struggling. He still drives to familiar places and talks to everyone he meets, telling the same stories over and over, and when he does anything at all, like visiting his favorite coffee shop, he comes home and falls asleep in front of the TV. So all-in-all, I don't have it nearly as hard as lots of other folks. Still, the anxiety, loneliness, and frustration are constant. I've convinced him that we need to sleep apart in order for me to get a decent night's sleep. Otherwise, I wouldn't be able to cope at all. I love my nights and often wish they were longer.
I enjoy my two hours of freedom most mornings while my spouse heads out to his fitness class or gym. It allows me to get a few things done around the house. Both of us are exhausted by nightfall so we enjoy quiet time. He naps after lunch but I can't run the vacuum or clank around then.
@tullynut I like this idea. It's worth a try. Moms a little adverse to strangers and people in her home is doesn't know but maybe with some creativity...it's a way to get extra help and a way to tidy up and get her away from the kitchen, the washer and dryer for a break. The clothes washing is out of control. She gets upset if anyone else washes clothes. She mentions the other day that she is the master of the washing. I wish I was making that up...but sadly her words. I have started to sneak and wash when she's out because I'm noticing that she can no longer sort and everything is always dried on high and washed same temps, cycles. And of course, this should not be the case for all clothing.