Learning about CBD and how to live with that - PSP Association

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Learning about CBD and how to live with that

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3 years ago•3 Replies

Hi all,

This is my first post... pretty long as I am opening of everything we’re going through. Some questions at the bottom.

My father-in-law was (“not completely”) diagnosed as CBD around 3 of years ago. At the begging he was diagnosed to have a stroke, then it looks it was Parkinson’s as his left arm shakes... but after a couple of MRIs and unsuccessful trying many Parkinson medications, it was suggested to be CBC.

Reading about it in the guide that this organisation sent me, it is absolutely clear that is CBD.

We moved with him 3 months ago to take care of him constantly and instead of having 2 falls a day (ended in AE twice) he had 6 so far, and luckily not serious.

I find very eye opening of the amount of help and resources that we could reach and we were not informed of, hopefully we could improve his quality of life more than we could do as a family.

Reading about other people’s symptoms and ways to handle them are extremely useful.

We are finding the mental changes pretty challenging. He gets confused easily, lost in his own thoughts, sometimes in the middle of a paragraph. He was a great reader, reading a book a week... now he cannot read a paragraph without getting lost with the words and with the concept. This year just signing Christmas cards was overwhelming for him, we allows him to do it at his own times and he forgotten about them... then got confused about what card for who and got frustrated and upset about it.

I was told and I read that it is normal for CBDs to get irritable, impatient and lack of empathy. We though he was just getting old and the impatience was mainly because of many years living by herself... but now, paying attention to every day things, we can see that he just want things now, without evaluating the priority of actions around him.

He is a very intelligent man, I am trying to talk with him and make him aware of the symptoms:

1. We call his left arm “Wilson” in a way to use humour to make h feel a little better: “It was Wilson in party mood who dropped the cup of tea, not you”, “it seems Wilson is more awake when you are stressed, let’s try to find calm first and Wilson will follow”

2. I told him that the syndrome play games with his mind and this is why he feels to do things IMMEDIATELY... “look, I was putting your left sock on, your mind decided to take the other shoe off at the same time....we could just wait to finish one thing and do the other after”. I asked him to try to identify these moments of “urgency” and be aware that his mind is playing, try to wait a little to see what happens. Let’s see how he deals with that in the next days.

3. Some days ago he fallen when he got up as he though the cleaner was going to come into his room soon... it was 8am and they normally come 10-11am. He tried to rush to go to the toilet and his legs didn’t react as fast. When I told him the times, he was surprised about his confusion.

Questions

1. Confusion: is this going to get worse or just stay in this state? We’re getting mentally prepare for getting worst.

2. Coughing is almost constant.... pretty unpleasant and worrying for everybody around. I will suggest to try some of the stuff shared in another post. I wonder if that can drive to something worst.

3. We’re considering hire somebody to help him to get cleaned and dressed instead of asking my husband, mainly for my father-in-law to feel less uncomfortable. I wonder when is the right time to do it as right now is one of the few things he can still (even it takes hours) to do it by himself. Would that help him or making him more useless?

Thanks foe the time of reading me and i appreciate your feedback.

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3 Replies

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AJK20013 years ago

Sounds like you are doing a great job looking after your FiL and he is very lucky to have such a caring family. In response to your questions. Q1 - I would expect he would get more confused but as too how confused he gets, everyone is different.Q2 - has he seen a Speech & Language Therapist (SALT) to have his swallow assessed. Have you adapted his diet at all? Is he producing a large amount of saliva? Mum coughed alot and this was managed to some extent by diet, we found quite early on things such as seeded bread should be avoided as they lingered in the mouth & caused coughing hours after they's been eaten. Then later pureed foods & thickened drinks helped. If excess saliva is a problem talk to his GP, there is medication that can help.

Q3 - yes get help. A good carer is a godsend in many ways. they relieve some of the pressure from you & your husband, they will encourage your FiL to do as much as he can for as long as he can without putting himself in danger, they will bring in news from the outside world, they can become a friend to your FiL & yourselves which help with feelings of isolation, they will help your husband & FiL to maintain a more normal father-son relationship. It is however important to get the right carer for your FiL and develop a good relationship with the Care Agency. One thing I realised as time went on & Mum's needs changed was the right carer for her also changed, something the agency pointed out first & managed the change by reducing the number of calls the original carer did, so that Mum got used to it, as to lose her in one go would have been quite traumatic for Mum, even though they weren't getting on so well.

in reply to AJK20013 years ago

Thank you ever so much!!Q2: he got some help, they given him the thickeners for the drinks that he didn’t like ama stop taking them.

Last night, after reading this forum I encouraged him not to drink milk with tea and eat chocolate before going to bed and he didn’t cough! However, he wanted chocolate biscuits and tea tonight... it is not easy to try to help him like that.