Mental Decline

[Indiana-Girl]

Good morning, Everyone!

It is hard to be despondent on a day like I am enjoying. The sun is beautiful on the snow and the temperatures are heading towards 40 today I hope to take my hubby out for a wheelchair ride this afternoon.

In the last few weeks, but especially the last few days I have noticed a decline in my husband’s mental acuity. He has begun to repeat everything I say, sometimes many times over. He becomes quite agitated if I ask him a question, regardless to what it may pertain. Also, he seems to be losing ability to distinguish between passing gas and an actual BM. His walking has become almost non-existent in the past few weeks. We are waiting on an Assist to Stand apparatus and it is my prayer it will help me safely get him into his wheelchair or bed or toilet. His urologist is concerned that he is not adequately emptying his bladder which is another issue. His neurologist is on board with having a nurse visit each evening.Finding one in these challenging times is another problem. Is/has anyone else had all these symptoms collide all at once? I am almost at my wits end as I watch him go deeper into his mental hole and physical purgatory.

[key4u]

I doubt repeating words is mental decline I expect it is because he is losing the ability to control mouth and throat muscles to say different words and there is one or some that he can still say. However saying these words still requires extreme effort and concentration likely the cause of the frustration. We tried many communication aids but there were none suitable for when both hand and eyes are affected. We had some success using a white board for hand writing and as eye control was failing we just did one letter at a time in the same place wiping the area clear, and I would write the word at the top as each letter arrived. Sometimes the letter was illegible so they would re-attempt as a capital which was usually easier than lower case. This took a long time but we would schedule time for it.

Speech & Language therapist will supply communication aids but at the time nothing was suitable. Their most advanced was software called Grid that could be controller with a button but required either good eye sight or good hand control but sadly PSP takes away both.

Stand aid will help a lot, if it’s a turn table then OT can also supply a commode shower chair on wheels so you transfer to that from the bed then wheel it to bathroom over toilet. The bucket helps with accidents on route.

If pre-emptive toilet trips are becoming frustrating the continence service will supply pads so don’t need to worry about accidents anymore and changing the pad can become normal routine. However BMs are great and having them is a good sign things are going well inside so might be a good idea to encourage them.

Dietician can probably suggest a change to diet to help reduce gas, maybe becoming more sensitive to dairy as the digestion system stops working properly. It’s a good idea to track BMs on a chart to give you early warning of a blockage. Laxitives are a necessity and as I mentioned about BMs are good best to take a lot of them, we were probably too cautious because didn’t want too many big messes but I think we should have given the full dose of Laxido. We were only doing 1 packet a week where others do 1 per day. If we noticed lack of BM we took packets every day until arrived. This did appear to affect energy levels and a LBM can lower blood pressure which can be a scary experience so best avoided and take a lot of laxatives .

[LuisRodicioRodicio]

Hi Indiana-girl!I'm sorry you're going through these moments.

Some previous details:

-What diagnosis does her husband have? PSP ?, CBD,? ....

-How long has he been diagnosed with?

The development of the disease has general guidelines but each patient has their own peculiarities.

Our experience has focused on PSP-RS (PSP-Richardson

Syndrome).

Anyway the PSPA Association give you a very nice information:

Section 1 Introduction to PSP and CBD

pspassociation.org.uk/app/u...

Section 2 Living with PSP

pspassociation.org.uk/app/u...

Section 3 Caring for someone with PSP

pspassociation.org.uk/app/u...

Section 4 Later in life

pspassociation.org.uk/app/u...

Hugs and luck.

Luis

[Indiana-Girl in reply to LuisRodicioRodicio]

Good morning, Luis! My husband has been diagnosed with CBD but I am told the only time they are certain of the exact disease in the Parkinson’s plus syndrome is through autopsy.

[Marilyn_cbd12]

Hello, Indiana Girl. I used to live in the Chicago area, so I remember how beautiful those rays of sunshine on snow can be! One suggestion-- have you considered engaging Hospice? Hospice is generally considered an appropriate resource (insurance approves it) for the last 6 months of life and I have read that most people say that they wish they had engaged hospice services earlier for their loved ones. My husband had been diagnosed with CBD and it was a great help to him - and me-- for five months, before he passed in August last year. I found that Hospice could get equipment and medications and personnel to our home faster than anyone else could, and they did not have difficulties getting people to our home, in spite of Covid. Those who did come observed safety protocols related to Covid and it was so helpful to have them. Just a thought...Marilyn

[Indiana-Girl in reply to Marilyn_cbd12]

Thank you! I am not sure he is that close to final days as he can still feed him and sleeps well. I pray he would be released from his earthly body to join the Lord in heaven where he can be free once again. But right now, I am waiting on a nursing agency to come out and evaluate him and even that takes forever due to COVID and weather. I will most definitely keep your suggestion in the back of my mind as I k is that sooner rather than later, I will have hospice fir him. 😢