Probably not ever going to be officially diagnosed

Posted by lkelley8 @lkelley8, Feb 26 9:15pm

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...

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

I realize it’s difficult to see someone you love decline. It sounds like she’s still rather active. And has people around her who care.

Her husband can consult with an attorney about ensuring they both have their estate planning documents in place, Healthcare POA, Durable POA, Advance Medical Directive, etc. That’s a good idea for any senior, so maybe she’ll comply.

Also, you or husband can send message to her doctor of observations so he can monitor and test. Most do cognitive screenings and suggest meds that might help slow down symptoms at the appropriate stage.

I took my cousin to a neurologist for evaluation initially to rule out things like a tumor, fluid on the brain, neurological disease, etc. which was done very quickly. She had blood work and an MRI. Her symptoms were very pronounced and she was immediately diagnosed with Vascular Dementia at age 63. At least we knew why she was declining so rapidly at such a young age. And, it helped to get her qualified for care and admittance to Memory Care.

If your mother ix not seeking services, that official diagnosis might not be critical at this point. If her doctor is aware, he can monitor it. Perhaps he could check her vitamin levels to ensure no deficiencies. That can cause cognitive symptoms. With my father, I realized that there might not be any benefit for him to acknowledge and accept that he has Alzheimer’s. Even if he did, he’d forget. So, it’s enough that we know and care for him.

Good luck with everything. I would have her driving evaluated. Check with her doctor and DMV about an assessment. The safety aspect is crucial.

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You mention it's been 3 years since you spoke to your mother about "senility". Now, it might be helpful if you suggest accompanying her to her doctor appointments. You could be a "second set of ears" to catch everything the doctors recommend for her. If she's forgetful, it's important that her medications are taken as prescribed. Sometimes meds cause confusion. If her memory gets worse, you both would benefit if you knew her physicians and if they knew you. That's the only suggestion that comes to mind at the moment. This is a good site, though, and I'm sure others will add their thoughts soon.
It's clear how much you care for your mother. I wish you luck in helping her.

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I relate to what you say about your mother. My husband has been declining for at least four years but doesn't seem to realize the changes he's experiencing. We don't talk about it, but I'm quietly and gradually taking on more of the things he used to do. The things he still can do--drive to familiar places, unload the dishwasher, make the bed, do the laundry--he takes great pride in doing. Looking at that list, I can see that he still does quite a lot. It's the endless repetition and the loss of words that drive me around the bend. Whenever I leave the house, I come home to find him waiting for me on the porch. Yesterday I walked up to a nearby restaurant to spend an hour with a friend. I was gone for an hour and a half, and when I got home my husband said he was about to get in his car and go looking for me. He'd forgotten where I was going and the direction I'd be coming from. We coasted along for a long time but things seem to be slipping faster these days. What is it they say? When the going gets tough, the tough get doing. We could all do with a little of Henry V's spirited rhetoric, I guess.

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I write on the whiteboard on the fridge…
Gym 9- 10 am
Or Lunch with Sue 12- 2 pm etc

I also phone him to say I’m on my way home.
It works for now 🤞

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Kathy, I also do that and even add a short note on the counter. It has been working very well and enables time for me to meet for lunch with women friends. My husband gave up driving and his car years ago so that is not a factor.

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@meitsjustme

You mention it's been 3 years since you spoke to your mother about "senility". Now, it might be helpful if you suggest accompanying her to her doctor appointments. You could be a "second set of ears" to catch everything the doctors recommend for her. If she's forgetful, it's important that her medications are taken as prescribed. Sometimes meds cause confusion. If her memory gets worse, you both would benefit if you knew her physicians and if they knew you. That's the only suggestion that comes to mind at the moment. This is a good site, though, and I'm sure others will add their thoughts soon.
It's clear how much you care for your mother. I wish you luck in helping her.

Jump to this post

Yes, either my dad or I go with her to appointments. She actually welcomes and prefers this ironically. She also allows me to schedule those appointments too - it is the other things, that if we try to help, we get push back. Typically, trying to help with other things that she believes she knows well and has always done on her own... upsets her and she will say things like "I am not stupid or I am not a child."

I do wish that she was open to trying medication. But she is not a fan or an advocate of any medication. Even when it is medication that she has to take, for example, after hip surgery, she will give us a very hard time.

She has been tested to check for any vitamin deficiencies and has also been tested for other issues and had an MRI. She is healthy overall - which is good.

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@celia16

I realize it’s difficult to see someone you love decline. It sounds like she’s still rather active. And has people around her who care.

Her husband can consult with an attorney about ensuring they both have their estate planning documents in place, Healthcare POA, Durable POA, Advance Medical Directive, etc. That’s a good idea for any senior, so maybe she’ll comply.

Also, you or husband can send message to her doctor of observations so he can monitor and test. Most do cognitive screenings and suggest meds that might help slow down symptoms at the appropriate stage.

I took my cousin to a neurologist for evaluation initially to rule out things like a tumor, fluid on the brain, neurological disease, etc. which was done very quickly. She had blood work and an MRI. Her symptoms were very pronounced and she was immediately diagnosed with Vascular Dementia at age 63. At least we knew why she was declining so rapidly at such a young age. And, it helped to get her qualified for care and admittance to Memory Care.

If your mother ix not seeking services, that official diagnosis might not be critical at this point. If her doctor is aware, he can monitor it. Perhaps he could check her vitamin levels to ensure no deficiencies. That can cause cognitive symptoms. With my father, I realized that there might not be any benefit for him to acknowledge and accept that he has Alzheimer’s. Even if he did, he’d forget. So, it’s enough that we know and care for him.

Good luck with everything. I would have her driving evaluated. Check with her doctor and DMV about an assessment. The safety aspect is crucial.

Jump to this post

My dad and I have tried the conversations about POA. My dad has arranged this from his standpoint but mom is not having any of that right now. I am not sure if we will get there.

I like the idea about the doctor observations. I may suggest that to dad and see if that's something we can do. I also like your suggestion about the driving being evaluated. I do wish that she was open to trying medication. But she is not a fan or an advocate of any medication. She has been tested to check for any vitamin deficiencies and has also been tested for other issues and had an MRI. She is healthy overall - which is good.

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@pamela78

I relate to what you say about your mother. My husband has been declining for at least four years but doesn't seem to realize the changes he's experiencing. We don't talk about it, but I'm quietly and gradually taking on more of the things he used to do. The things he still can do--drive to familiar places, unload the dishwasher, make the bed, do the laundry--he takes great pride in doing. Looking at that list, I can see that he still does quite a lot. It's the endless repetition and the loss of words that drive me around the bend. Whenever I leave the house, I come home to find him waiting for me on the porch. Yesterday I walked up to a nearby restaurant to spend an hour with a friend. I was gone for an hour and a half, and when I got home my husband said he was about to get in his car and go looking for me. He'd forgotten where I was going and the direction I'd be coming from. We coasted along for a long time but things seem to be slipping faster these days. What is it they say? When the going gets tough, the tough get doing. We could all do with a little of Henry V's spirited rhetoric, I guess.

Jump to this post

If I didn’t know I would think I wrote what you said.
Same here changes but he still does all his chores so as to speak and like your husband is proud to be doing them. We keep him on the same routine but he says occasionally I am getting so stupid but I tell him everyone forgets sometimes. I notice he puts things in the wrong places which is irritating but not life threatening. It just takes a while for me to locate them. I find I never leave anything out because he will take my pants thinking they are his, again not major but it tends to drive me crazy when I can’t find things. He has never been diagnosed and we have no other family so it is just me. I’m just happy that in-between he is basically the man I married although like you i seem to take on more things.

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@jeanadair123

If I didn’t know I would think I wrote what you said.
Same here changes but he still does all his chores so as to speak and like your husband is proud to be doing them. We keep him on the same routine but he says occasionally I am getting so stupid but I tell him everyone forgets sometimes. I notice he puts things in the wrong places which is irritating but not life threatening. It just takes a while for me to locate them. I find I never leave anything out because he will take my pants thinking they are his, again not major but it tends to drive me crazy when I can’t find things. He has never been diagnosed and we have no other family so it is just me. I’m just happy that in-between he is basically the man I married although like you i seem to take on more things.

Jump to this post

I can relate to keeping your things hidden or away from your loved one. The moment that I leave anything anywhere - somehow my mom gets hold of it and then we are on the search to look for it. Sometimes, it is literally within minutes. That either goes well or not so much. But it is really irritating and I am getting better with just letting it go (although tricky for me because I love the order of things having their place). Things show up in the strangest places. She gets really upset when she misplaces her things and typically dad gets blamed for it, I do as well - but typically dad's always to blame.

We've noticed that the kitchen is the hot spot particularly when a meal is being prepared - many things are out on the counter because either my dad or I are actively cooking. It seems to create a lot of anxiety for her because she wants to immediately put everything away. In her mind - there is clutter. Interesting enough, this is only the case with the kitchen counter. She has mail clutter at the kitchen table but somehow that doesn't seem to generate any anxiety.

During meal prep - we usually have to encourage her to help with a task like setting the table and getting drinks for everyone. But that doesn't always work because she ends up trying to take over the process again. Often she is actively trying to clean things that we need to use while we are trying to use them to cook the meal. It can be extremely intrusive so you really have to pack your patience. When it gets a little overwhelming for us, we encourage her to find us something to watch on TV. This is the time we might also encourage relaxing where we have her dog sit with her and get a warm blanket to help calm her anxiety. This typically does the trick and often she will doze off for a bit until the meal is ready.

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Don’t know if this approach might help or not, but I would give it a try. Instead of talking to your mother about her mental status, her changes, her decline, etc. drop that topic altogether instead bring up solutions without ever mentioning her problem. Something like, wondering if we Get a housekeeper to help me keep everything tidy. My friend Jane is very lonely and wants to develop more friends in the area so I wonder if it would be a good idea to have her come over and spend some time with us.

I found with my mother that discussing anything of that nature was never very productive however, she was always a pretty sociable, woman, and when helpers and caregivers came to her, she eventually saw as a visit from friends not as caregivers! I would give it a try. I think with a lot of people whether they have memory issues or not as they get older Their instantaneous response to any outright conclusion/statement is a great big no! When it’s presented in a friendly or non-caretaker way, I. E. A friend coming over, you may still get an initial note that won’t be quite as strong, but as you will be present in the early stages, you can just approach it that she’s here for me! Then you gradually work yourself out of that equation. Not sure it would work all of the time, but I do think it might work some of the time?

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