Changing character

Dear Maeve

Sorry to say, but 'Yes' character changes are all part and parcel of PSP. Hallucinations can sometimes be caused by a reaction to a particular medication, although it can also be due simply to the changes taking place within the PSP brain. One of the first things I noticed with my husband when he started PSP was that his character changed. It was like living with a stranger - which put a terrible stress on our marriage - as I was unaware then, that he was in fact ill.

You say you are getting tired through lack of sleep so it sounds as though you may be your sister's sole carer? Does she have a Social Worker? (Arranged through her GP) They may be able to give advice on perhaps a day centre in your area where your sister could go for a few hours each week - thereby giving you a break? Maybe it's time you had a little extra help with a carer coming in for an hour or two to free you up for a little while so you could catch up on sleep or go out shopping or whatever?

Caring for someone with PSP can be really exhausting and difficult, but I found that by finding out as much as I could about the condition and trying to educate myself to be one step ahead of the various stages, I was prepared for what was (liable) to come in the future and could plan ahead. I always discussed everything with my husband too as I was aware that people with PSP are most of the time, intellectually sound.

Have you joined the PSP Association? Their address can be found on their website wwwpspeur.org It's free to join for PSP sufferers and their carers/family. Firstly, you will be sent a Carers Information Pack which is full of information that you will find invaluable not only about the condition, its symptoms and stages, but with other helpful facts. You will also be put in touch with a PSP Specialist Nurse in your area, who you can get in touch with if you need help or advice. The PSP Magazine which will be sent to you at regular intervals will also list dates and venues for your local Support Group Meeting. Here you can meet other carers going through the same worries and frustrations as yourself.

Good luck.

Maggie

Hi Maggie ,

Yes, I have joined the PSP association and have all the info from them. As to a social worker - I have tried and tried to get one but cant get past the person on the phone who promises to send an e mail to the social worker. The PSP nurse for this area is now trying- fingers crossed she will have better luck. I am the sole carer. I do use day centres, friends, and family to get some respite but it does not help with distrubed sleep. Hopefully the change of medication is going to help . Thanks for your support

Maeve

I too found that my husband's character has changed, he is now quiet and passive. His comments seem quite random at times but more often than not are a delayed response to something that has already been spoken about. When the Sinemet medication was increased I was warned of the possibility of sleep becoming restless and hallucinations. So far, touch wood, neither of these has happened. I agree with Maggieh, the best route to a social wrker is via a GP referral. Or if the social services keep fobbing you off ask for the duty social worker and if you get through be a little bit creative with the truth, sound desperate and say you are afraid for your sister's safety and that you need some help. Good luck.

Hi Maeve

I think the character changes were the biggest problem for me when my husband had PSP. He was always a sunny natured person and even after 42 years of marriage and close friendship we still talked a lot and found things to laugh about. PSP changed all of this. He wasn't exactly moody but became very quiet and withdrawn and like your sister would come out with some strange statements. It took quite some getting used to. Sleepless nights I'm afraid are the norm with PSP also because they tend to nap during the day. Whenever he went to his Bingo morning at the Day Centre and the Disabled Bowls morning I would try and catch up on sleep.

Not at all easy.

Love

Lina

Hi Maeve, looking back over the last three years I can now see the character changes were probably one of the first things to occur. After over 30 years of marriage, my husband, who had been full of life and had an opinion on many subjects started to become non communicative. When I asked him was there a problem, he replied that after a long marriage there was nothing to talk about. These changes then continued to get worst and then the physical signs started to appear, such as falling over for no obvious reason.

What I now find very hard is getting a straight answer to simple questions. I give him time to think and try not to rush him in any way, but he comes out with bizarre answers on occasions and then laughs loudly. In some ways it's nice to hear him laugh but often it is OTT and I find myself getting very irritated with him.

At the moment we are not receiving any outside help, but other family members, especially my daughter is very supportive. I can see that soon we will need greater support than this.

With the disturbed nights, we have found what has worked for my husband has been the use of anti depressants and some night sedation. We both have benefitted from this regime.

Good luck and I hope you get good support from your GP.

Peter2.

Hi Maeve,

As someone else has hinted you are able to self-refer to social services and don't need to be referred by your GP. Your local council's website will probably have contact details for the Adults with Disabilities team who are likely to be the team that would pick up your case and they may well have a duty system. Presumably though you have had some input before as you say your sister goes to a day centre?

hmfsli

Hi there,

I am finding different areas different means of getting hold of a social worker. Here, you can telephone Social Services to try and get hold of a social worker BUT you cant get past the person answering your phone call. I have tried. I have found a day centre myself for my sister to go to without social services help. We had a social worker but she deemed as I was coping I did not need her services and our case was closed. Does no-one realise that PSP is an on going problem and gets worse as time goes on.

Thanks for your thoughts - I shall keep trying.

Maeve

Hi Maeve,

One of the things that comes over clearly when reading the blogs on this site is that there is such inequality of provision across the country. It does seem to be something of a post code lottery. Have you tried contacting your local councillor? Sometimes they can push things along. Keep your chin up and don't give up.

hmfsli