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Topic Crystal Ball, anyone? Go to previous topic Go to next topic Go to higher level

By VioletV On 2015.11.07 16:43
I am asking for what, probably, no one knows. That is, what is the course for advanced PD memory loss/confusion?

My husband is physically quite well for an 80 year old who is 20 years into PD. He walks well up and down stairs, needs some help into and out of the shower, and out of bed. But medically he is very well. His only medication is Sinemet.

But mentally things are slipping, and it seems to be happening very very fast. In late August we took the 16 year old back to school, then had a little vacation in the Berkshires (Hi Al!). In the hotel he had a strange episode of disorientation x 3. We visited several sites, museum, saw a play etc.

Since then the memory loss has galloped along, so that today 3 months later he retains very little of day to day experience. Last month we went to dinner (again out of town visiting the teen at school) on Friday. On Sunday we went to the same restaurant (where we've been half a dozen times or so) and he asked me "have you been here before?"

We visited neuro office 6 weeks ago, and then yesterday. He did not really recognize the NP we saw, didn't recognize the office. This time he had trouble keeping the thread of what he intended to say, which is a marked change from 6 weeks ago. He has pretty good insight into the loss, and is clear that he doesn't want to try anti cholinesterase inhibitors (which,given their modest effect, seems to be an ok decision, I guess).

Now my question. Is this the pace you experienced with cognitive decline in PD? Is this super fast (seems that way to me). About 3 weeks ago he asked me to get a POA established so that I could formally make the financial decisions, sign etc. (I have been doing it, with him signing checks for more that 18 months). What is in store? Should I be looking to hire more round-the-clock help now? Getting him to make decisions while he is more-or-less still here?

Am I freaking out? Guess so!

By carman96 On 2015.11.08 23:09
Get a POA and make it legal! I waited too long and now the lawyers won't do one because of his dementia.
Are you sure there is no underlying infections,like UTI? That can cause a quick decline.
Sounds like he's done pretty well up until now.
My husband is 11 years into it and his dementia is pretty bad. It was a gradual decline over several years though.

By VioletV On 2015.11.10 18:54
Thanks for that suggestion. I've had the paperwork for a while, and yesterday we went to the Notary and made it official. I was concerned that the banker/notary (who knows us) would think he wasn't quite oriented enough to be signing knowledgeably. But the lawyer-instincts in my husband kicked it, and he handled it like a champ.

It's a sad thing to have to do this, and I will continue to have him sign checks and other documents, and include him in discussions and decisions as long as possible. But it is a relief to have it done. So sorry that you don't have that relief yourself.

And as to the UTI I took him to have it tested the day before the neurology appointment just in case. No infection. It's just PD advancing in its inexorable way.
Rotten rotten disease.

By LOHENGR1N On 2015.11.10 22:51
Just a quick suggestion, if we PWP are going to continue to sign papers and checks. It might be good to stop by our bank at different times when our MED's are at different levels just to sign our names so they have them to compare as our signatures vary and to avoid confusion and the banks questioning the validity of the signature.

By exhausted wife On 2015.11.11 07:34

By VioletV On 2015.11.20 11:00
So we went to the PCP and had all the tests for possible sub-clinical infection. As she said "looking for reversible medical causes for change in mental status."

Good news - no infection. Bad news - no infection.

So that makes me think that this is the next stage, that we are beginning the long slide into deep dementia. Today he had Capgras-like symptoms. And maybe this is funny. When he is aroused from sleep he can be combative sometimes--seemingly REM sleep behavior disorder. But being a lawyer he fights verbally and not physically. He has a counter argument for everything. And that is exhausting, since he gets upset if I don't respond.

For the first time, really, I feel scared and deeply deeply sad.


By Trusting On 2015.11.20 23:44
I understand the feeling of frustration when our pwp repeated ask or tell us something over and over. My husband had begun to try the arguing thing with me and I lost patience. I felt so bad about it.
I went to my doctor and he increased my medication. He finished my sentence when I told him I was losing patience......and he said, "and you feel guilty". I said YES. He told me to not be so hard on myself. He told me to stay on the added dose of medicine and I must say I feel better. I just didn't realize the stress I was under. I love my husband and grieve that I am losing him little by little. Blessings to all of you.

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