maeve

[maeve]

Has anybody out there got any suggestions for dealing with apathy and generally not wanting to co-operate. My sister had a peg fitted a month ago and since then she has gone into herself and despite my best efforts I cannot get her to participate and rejoin the outside world. All she wants to do is stay in bed and watch TV with very little communication. Is this part of PSP or something more. This behaviour is so unlike her and I am finding it very difficult to deal with. Any tips or advice please----------

Maeve

[maggieh]

Hello Maeve

Without a doubt I would say your sister's apathy will be due to the PSP and not anything else. Apathy is unfortunately one of the well known stages of this disease. Do continue to stimulate her as you have always done. Draw her into conversations and ask her opinions. Even if you don't get a spoken reply, pretend, or make up what her answer would be; knowing your sister's character you would have a fair idea of what she would answer. Just behave as you always did around her, but remember her brain is taking longer and longer to take in everything in - and PSP sufferers do get exhausted and sleepy more often.

It could be that that she is feeling a little depresssed about following the PEGtube, so ask her. Get her to let you know in some way; maybe with a thumbs up or down - if she can't speak. If she is feeling depressed - another symptom - speak to her doctor. A mild sedative such as Citalopram may help her .

Love,

Maggie x

[maeve in reply to maggieh]

Thanks for your thoughts on this problem. She is already taking Citalopram . I will keep battling away and see what happens

Maeve

[Hidden]

Hi Maeve

It is very difficult to deal with the apathy which takes hold of PSP sufferers. When my husband was told he needed to be in a wheelchair he said to me "This is the beginning of the end". He felt that his life was over. I tried to counteract this by taking him out and about as much as possible with his three wheeled walker. It also served to give him some exercise in the outdoors. However it did not help dispel his apathy.

This is extremely hard on you if like myself you are the sole Carer. The main thing is that you are there for your sister and you obviously care for her and I'm sure she knows and appreciates this. A few days before he died, when I was helping Luigi with something, he said to me, "Thank you Lina and thank you for everything you are doing for me". It made me realize that although he seldom said anything, deep down he appreciated what I was doing for him.

Kind regards

Lina

[maeve in reply to Hidden]

Thanks Lina for those words. I am the main carer, as you were, and it is very hard. You are constantly battling with tiredness and life is very hard at times.

Maeve

[Jeff]

Hi Maeve,

The apathy is one of the things I find most disturbing with Jeff. All his life he was aggressively chasing the next adventure, now, he just sits in his wheelchair or lounger watching TV and sleeping. Even the things that he used to be passionate about, he just doesn't care to hear about any more. In the intial stages, his symtoms were angry outbursts and illogical arguements. I almost wish those emotions would come back! I would rather have him yelling than not caring about what is going on around him.

I still try to engage in active conversation with him. Ask him questions, just tell him stuff about what is going on with me, even chat about the weather. As recent as a couple of weeks ago, I could keep him going in a 7 - 10 minute conversation at a time. Now, he is down to 3 - 4 minutes before he says that he is too tired to talk. He is now sleeping 14 -18 hours a day.

I used to be able to get him out for most of the day just driving around, going for coffee or lunch, pushing him in his chair through the park. Now, if we are out for more than 2 hours, he just wants to go back to his room for a nap.

Some days he is better than others but for the last couple of weeks, I can't get a reaction out of him for love nor money! His condition is deteriorating more rapidly in the last couple of months.

Its truly alarming!

[PSPA_JillL]

Apathy is a very common symptom and one of the most difficult for carers and family to come to terms with. However I have found that for a lot of people living with PSP/CBD this is not as much as a problem for them . There are no easy answers. At this stage enjoying happy pleasurable moments is very important. Carers need a break, respite in what ever from is crucial. Physical touch is very important and valuable, massage and holding hands communicates a lot where verbal communication is difficult or no longer present. Music is also valuable. If you are finding things tough remember you can talk to your PSP nurse.