Can Dementia Screening Wait Three Months?

[blu]

My Grandma is almost 93 and she has undiagnosed dementia. I have an appointment scheduled with a neurologist for dementia screening, but they can't get her in until mid August. The doctor is supposedly really good, she has great online reviews and my mom's boss uses her and says she's really good.

I might be able to get an appointment for June or July with another neurologist, but her online reviews are mediocre. A relative that goes to her also isn't pleased with her but has limited choices in where she can go.

How can I know if Grandma can wait until August for a diagnosis? Will waiting that long make a difference? I don't know if there's any medication that can help her. She may have some depression too, I don't know.

She sleeps all the time. If I didn't get her out of bed, she'd probably never get out. Then after breakfast, she pretty much sleeps until bedtime. I wake her every two hours to use the bathroom and then she gets mad for waking her up. She states that if she had to go to the bathroom she would go, but that's not true. She pees in her diaper instead of getting up to use the toilet. I don't know if she deliberately pees in her diaper or if she no longer has control over her bladder. She was even napping in the waiting room of the doctor's office the other day. Then during the entire exam she was moaning or whatever that obnoxious noise is that she makes.

The one thing that does bother me is something that is my own fault. My mother and I don't give Grandma as much interaction as she would like. We used to sit and watch TV with her (I'd work a crossword puzzle), but Grandma would end up falling asleep. Mom and I got bored so we left. We used to play games with Grandma but she can't sit at the table very long anymore. She complains about the chair being too hard despite having cushions in it. She also can't seem to play anything other than easy, boring games like Rummy, Uno, Dominoes and Carcassonne and I end up becoming extremely sleepy and fidgety at the table. So I'm sure that lack of mental stimulation hasn't helped.

I was thinking about getting her a Kindle Fire so she could play some word or card games on it, but I don't know if she would. She falls asleep trying to do word searches in her book. Last year she was plowing through those puzzles and I was having to always buy new books, but at this rate I won't have to buy one before the end of the year. The good news is that she has an excellent appetite. She's always hungry. I wish she'd drink more beverages, but at least her appetite is good.

So any opinions on whether she can wait until August to see a neurologist? I suppose I could try forcing myself to play more games and interacting with her more. I have tried, but she really does drive me crazy - literally.

 

[Rosettastone57]

My Grandma is almost 93 and she has undiagnosed dementia. I have an appointment scheduled with a neurologist for dementia screening, but they can't get her in until mid August. The doctor is supposedly really good, she has great online reviews and my mom's boss uses her and says she's really good.

I might be able to get an appointment for June or July with another neurologist, but her online reviews are mediocre. A relative that goes to her also isn't pleased with her but has limited choices in where she can go.

How can I know if Grandma can wait until August for a diagnosis? Will waiting that long make a difference? I don't know if there's any medication that can help her. She may have some depression too, I don't know.

She sleeps all the time. If I didn't get her out of bed, she'd probably never get out. Then after breakfast, she pretty much sleeps until bedtime. I wake her every two hours to use the bathroom and then she gets mad for waking her up. She states that if she had to go to the bathroom she would go, but that's not true. She pees in her diaper instead of getting up to use the toilet. I don't know if she deliberately pees in her diaper or if she no longer has control over her bladder. She was even napping in the waiting room of the doctor's office the other day. Then during the entire exam she was moaning or whatever that obnoxious noise is that she makes.

The one thing that does bother me is something that is my own fault. My mother and I don't give Grandma as much interaction as she would like. We used to sit and watch TV with her (I'd work a crossword puzzle), but Grandma would end up falling asleep. Mom and I got bored so we left. We used to play games with Grandma but she can't sit at the table very long anymore. She complains about the chair being too hard despite having cushions in it. She also can't seem to play anything other than easy, boring games like Rummy, Uno, Dominoes and Carcassonne and I end up becoming extremely sleepy and fidgety at the table. So I'm sure that lack of mental stimulation hasn't helped.

I was thinking about getting her a Kindle Fire so she could play some word or card games on it, but I don't know if she would. She falls asleep trying to do word searches in her book. Last year she was plowing through those puzzles and I was having to always buy new books, but at this rate I won't have to buy one before the end of the year. The good news is that she has an excellent appetite. She's always hungry. I wish she'd drink more beverages, but at least her appetite is good.

So any opinions on whether she can wait until August to see a neurologist? I suppose I could try forcing myself to play more games and interacting with her more. I have tried, but she really does drive me crazy - literally.

I take it you are in the USA?. We have a different system here in the UK for getting diagnosis . To be honest waiting 3 months for an appointment is probably normal and may not make much difference to an outcome

 

[Sirena]

I doubt the appointment will result in anything other than just the diagnosis, so there is unlikely to be much point bringing it forward by a few weeks.

It sounds as if your grandma's abilities are deteriorating which is no one's fault, it's just the progress of the disease. Be guided by her as to what she should do all day - if she wants to sleep a lot, that's fine.

 

[canary]

The one thing that does bother me is something that is my own fault.

Please dont think that any progression (assuming it is dementia) is your fault. Dementia is a progressive disease and is cannot be stopped. If it turns out to be Alzheimers then there is medication to slow down the progression of the disease, but it wont stop the decline, and it certainly wont improve function. If it is any other sort of dementia then there is no treatment for the disease.

It sounds like complex things are now beyond her, so dont try and force the issue. If she only wants to do simple things that is fine. It is normal for people with dementia to want to sleep more.

 

[blu]

Thanks for the responses. Yes, I'm in the USA. I know this in a UK forum but I like the people here better and the advice has been so much more helpful and attitude free.

I think what will always bother me about Grandma's dementia is that there's no way to know if I made it worse. Her and Grandpa lived in their own house until mid 2015 when they had to move to assisted living due to Grandpa being diagnosed with terminal cancer. He died in early 2016 and a few months later the family agreed upon Grandma coming to live with me so she wouldn't be alone in there. Even though I strongly suspected she had dementia since before 2012, I never saw anything overly concerning until the first month she was living with me. At bedtime, I heard her kind of crying although I don't think there were any tears. That behavior (crying) is not her. Over the next few months it worsened and she developed this moaning thing. She hid all this very well when people were around her, but the walls are thin and I could always hear her when in a different room. Things slowly deteriorated until April 2018. She had physical therapy because she became too weak. She developed a urinary tract infection during this time and it was all downhill from there. Ever since then she will not get up to urinate, she pees in her diaper. I make her get up every two hours, but she still pees in her diaper between bathroom visits.

I often wonder if things would have deteriorated so quickly if I had left her in assisted living. I think all the moving was too much. I also think she expected more interaction when I asked her to live with me. But it's like all her bad/obnoxious behavior started coming out shortly after she moved into my house and it drives me away from her she's so annoying. I don't know if Grandpa had controlled her obnoxious behavior by yelling at her or not, it's entirely possible. So maybe she felt free to do whatever after he died.

I'll never know the truth about any of this. I'm just left wondering if any of it's my fault. I ask her every few months if she wants to go back to assisted living and she doesn't want to. Even when she gets mad and says she should go back she admits that she doesn't want to. I guess that's a good sign.

Sometimes I just wonder if it's worth "fighting" against it (dementia). Is it worth making her get up every two hours to go to the bathroom? Is it worth trying to make her do things by herself? Is it worth trying to make her do exercises so she's not weak and can still live with me? All I do is "fight" with her about doing these things. I have no interest in being around her anymore. All she does is sleep, so I wonder what the point of anything is.

I will admit that in 2011 or so, I expected her to have full dementia by 2017. I expected her to not remember anybody or anything by 2017. I guess I was more or less right, but it's still hard to accept. No one else in the family saw any of this. Even though I pointed it out to my mother after every visit with Grandma, she still couldn't see it (she now admits she didn't want to see it).

 

[canary]

Oh @blu none of this is your fault. You have not made it worse - dementia is a progressive disease and there is nothing that you can do to hold it back.
I should imagine that the symptoms were there long before you moved her to your home and it was only because you were there seeing her all day and hearing her at night that it brought it all to your attention. The weakness and incontinence is part and parcel of the dementia.

My feeling is that fighting it doesnt make any difference - she is still weak despite the exercises and she is still incontinent despite you taking her to the bathroom every 2 hours, so what are you achieving? You cant hold back the tide and are only making yourself miserable because you feel you are failing. Its a bit like feeling that you have failed because you cant move a mountain! Try accepting the disease instead - it wont change how the dementia progresses, but you might be feeling better about it.

 

[Witzend]

In my mother's case, all the diagnosis did was slap an official label on what we were pretty certain was there. She was prescribed medication for Alzheimer's but TBH even when she could be persuaded to take it regularly, all it apparently did was bring back some of the nastier behaviour we thought had passed. (I know others will have had differnct experiences.). So when she became very difficult about taking it, it was stopped, and was frankly no loss.