PSP Association


I would love to go away for a few days in September the children have asked George to go to Cyprus it would be just the five of us, but George does not want to go, I have said to him how nice it would be just going with the children, only for 6 days, but he really does not want to go.

My middle daughter, is saying if dad does not go, then she would not go, and she said this was suppose to be for dad, but what about what I want? The other 2 children have said we should still go, I am feeling bad about leaving him, with a career and going away. What are everyone's views on this please be honest, I won't mind any remarks, I really would like all your input please.

Thank you all Yvonne xxxxxxxxx

21 Replies

Yvonne, if I were you I would do what you are comfortable with. Remember there is no right or wrong, just go with your feelings. That is what I do.

Audrey xoxo

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Hi Yvonne, you know George. How would he be with a carer looking after him for 6 days? Due to me hurting my back, C had to go into a home for a while. I visited him for long periods every day but he took a dive, became incontinenet and lost a lot of his speech. He was thoroughly depressed. Perhaps being in his own home it will be different for George. Does he mind you leaving him? If he doesn't then I think you should go but would you be able to switch off and enjoy yourself being away from him.

I know that I won't be able to go away now until C is no longer with us and have accepted that. I don't wish the time away but do as much as we possibly can locally or just sitting in the garden ( when the wind dies down). I want to go on nice holidays like all my friends and family (seeing all their photos on Facebook doesn't help) but I'm afraid what I want comes second at the moment. Strangely enough, I felt relief once I had made the decision not to go away again; one more thing I never have to worry about.

If you do decide to go, don't worry about your middle daughter. If she doesn't want to go, let her stay. Perhaps she didn't really want to go anyway but was only doing it for dad. Have you asked George if he would go away if it were to somewhere closer to home without having to fly. Perhaps he is daunted by the prospect of travelling abroad.

I'm sure you will get lots of other feedback and it will be interesting to see what others say.


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Hi Yvonne, Are you able to find out why George doesn't want to go. perhaps it is because he feels insecure and is not sure what to expect. Perhaps you can reassure him to some extent by showing him lots of pictures of where you are going and explaining that you will have lots of help with the children there. Do you see. The children a lot? Perhaps he is worried that they don't really know the extent of his difficulties and he therefore thinks it might be embarrassing to live at close quarters for a whole week.

We have been recently to Spain with out two daughters, one son-in-law and two young grandchildren. We had a lovely time and I think D enjoyed it although he did find it tiring being out of our normal routine and in an unfamiliar environment. He loved being with the family, the warm sunshine, being away from the relentless round of appointments and assessments etc. We found the travelling pretty easy with all the assistance available at both airports. I think it was good for us both to have the family on hand to help him with the difficult bits rather than just me and it was good that the family was made more aware of how he struggles.

Perhaps if you ask George at a quiet time when neither of you is stressed, you could actually get to the bottom of why he is reluctant and then try to address any of his fears specifically. If he is really determined not to go, perhaps your middle daughter would stay with him instead of him having to stay with carers.

I do hope you can resolve this so that you can both have a restful break either together or separately.


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Perhaps this would be a good time for the daughter who does not want to go to hang out with the dad who does not want to go. Then everybody who wants to go can have have a good time going!


ps Cyprus oohlala! going to Branson MO, is a big deal for most ppl round here!


I think you need to find out why he doesn't want to go and then try to work out a compromise. Perhaps the daughter that doesn't want to go should stay at home with him. It would be good if she had carers going in to do personal care like getting up and putting him to bed.

we had our last trip away in 2011 and it was a nightmare we went to paris to stay with his son and daughter-in-law. Brian was unable to walk very far was clumsy and upset everyone. I spent more time keeping the peace then enjoying myself. So i said there and then that we will never go away again.



Things always seemed to go wrong whenever I left my mum to carers for more than a day, and when I went for a week, the hospice that was looking after her and had promised to pamper her, decided they could not spend all day feeding her, and that her swallow was "unsafe"

I understand that the PSP association has accommodation abroad. It might be worth checking that out? The promise of appropriate accommodation might tempt him?


Thank you all for your comments I have asked him why he does not want to go and he says he has all ready had a holiday, went went to the cotswolds last month, we would be going to our apartment in Cyprus so it is not new to him. The only thing I can think off is that he does not want people to see how he is ie in the wheelchair, unable to walk far, how bad this illness is. I told him we could just sit on the balcony and enjoy the sunny weather, maybe go out some evenings, our stY in we have a nice kitchen, that we could take in turns to cook, and it is only 6 days.

I also said to my daughter you can look after dad, and she said mum that is not fair, I would get careers in to get him up and put him to bed, but she still said it was not fair, she was George's favourite, I know you should not have favourites, but he did, she has two children of 4 and 5 I know it would be difficult for her, but I feel a bit let down, having one of my low weeks. Sorry everyone trying to please everyone is hard. Thank you all once again for your replies really appreciate it.. Yvonne xxxxx xxxxxxxxxxx


Decisions decisions decisions, seems life with PSP is always about difficult decisions. Think only you can decide if you can enjoy a few days away without him without being ridden with guilt. A tricky situation. Xxx


I've just had a long telephone conversation with the PSP consultant who saw G on Tuesday whilst I out.

Anyway, consultant has told me it is very important to have regular breaks and has suggested respite care and said it should be for 2 weeks so I'd be at home for a few days then go away for a week and have a few days at home at the end. G had originally said she didn't want me to go away, but the consultant has said I must go away, we have a villa in Cyprus that we want to sell but I don't want to go there but instead visit my parents in Madeira.

You have to think about your own health and well being, it's no good if you wear yourself out, George would need care for longer if anything happens to you!


Dear Yvonne,

This is such a personal decision I don’t know if I can add anything useful but I can explain my experience.

Margaret and I had been going with friends to the Lakes for several years and it reached the point when it would have been totally impractical for Margaret to go. Following pressure from family and friends I agreed to go, provided we could find a suitable placement for Margaret. One of my daughters found a brand new care/nursing home close to where she lived, some thirty miles from where we lived, and said she would visit several times daily to make sure her Mum was OK.

As I drove away on the Friday evening, leaving Margaret propped up with numerous cushions in a standard rise and recline chair, knowing she had a far more comfortable purpose built chair at home, I promised myself I would never do it again.

I didn’t sleep well that night and it occurred to me that, if I removed the rear seats, I could probably get her chair in the back of the car. I could and did, and early on Saturday morning it was in Margaret’s room by the side of her bed, well most of it, I’d forgotten the footrest but Julie sorted that out.

I can’t say I didn’t benefit from the holiday, doubtless the break did me good but on balance I felt the distress to Margaret far outweighed any benefit to me. I’ve never been that bothered about holidays anyway which is why I started by saying it’s such a personal decision. There is no right or wrong, you can only do what you consider best in your specific circumstances and there is no one better positioned to make that decision than you. Whatever you do I wish you and your family the very best of luck.

Kindest regards, Jerry.


I understand it's difficult, I've just been away with my mum, we put Dad into a care home for 10 days for the first time. It was difficult at first for mum, she was very upset and probably feeling guilty, however we had a few days at home before we went to Tenerife, so she visited him in the home and could see he was perfectly cared for, so when we did get on holiday she was really happy and relaxed. It did her the power of good, after all no doubt like you, she is the main carer for Dad, she is with him 24/7, I have two sisters and we do our bit, but its very difficult with our own family commitments too. Mum desperately needed the break, she too needed to recharge her batteries ready to carry on caring when she got back. Try to explain to your daughter how important it is to both you and her dad. But at the end of the day, be selfish, go without her, you need the break! Good luck and all the best x


Thank you feeling so guilty trying to work it out in my head. Just feel I need a break, not sure what I am going to do yet. Thank you all xxxxxxx. Yvonne


Hi Yvonne, difficult one! First reaction, if you want to go, GO,!!!! Forget the rest that don't! Get George into a good respite home, if you can afford it, join your children and Have a good time! If he is unhappy, well, you gave him the chance to be with you and he turned it down.

Second one, why doesn't he want to go? Is it really that he doesn't want people to see him struggle. Surely, everyone sees this on a daily basis! But I understand, it's different, away. I am guessing he is frightened on something, you just have to find out what. In fairness though, I doubt he knows!

Third thought. Will YOU have a good time without him? Or will you spend most of the time, worrying and feeling guilty? If that's the case, not a lot of point going!

Fiddle has a good suggestion, have George in a home for longer than you are due to be away, so you both get use to it, before you actually go to Cyprus.

One thing I do know, even though you will have plenty of hands on deck, it will still be you doing everything for George. Having recently had a weekend away with my kids, yes, they did the cooking, planning, wheeled S around, it was still me, that had the disturbed meals for the constant toilet runs, the sleepless nights, the worry about him falling and wrecking the cottage we were in, or worse hurting himself and ruining the weekend. So the stress levels were fairly high. BUT, I wouldn't have missed it for the world! Everything worth having has a price!

Guess what I am really saying, is only you can decide, you know how you will feel. Why don't you try just a weekend away with out him, fairly soon, to see how you both feel. Maybe, that will decide George, that perhaps he will come after all, or he will be able to cope with out you for a few days!

When our house finally sells in South Africa, I want to go out, but I won't take S. Now whether, when the time comes, I will be able to do it, I don't know. So I am very interested to how you resolve this. Keep me informed!

Either way, Yvonne, you sound very tired and need a break, sooner rather than later. Try and get one, even if it for a few short hours!

Don't forget we are here, if you want to sound out more, then feel free, we will always listen and try and help!

Lots of love



Thank you Heady will keep you all informed, still not sure what to do, maybe I will try the weekend, let's see. I am tired have not really had anytime for myself since George first found out about the PSP.

He is going into hospital next week for 3 days for test, so will be up and down into central London, not sure how visiting times are does anyone now about visiting times, maybe I will google it. Thank you all once again Yvonne xxxxxxxx


Hi Yvonne, what sort of tests are they doing? Is it PSP related, or has George another condition?

I think visiting times vary, depending what sort of ward he is on. Try to get as much rest as you can, while he is in hospital.

Hope all goes well.

Lots of love



Heady when we last went to the hospital, they asked if George had any tests, we said only the MRI, brain scan, and a few others, and because his cousin also had PSP, they wanted to do some tests, they are saying he has got PSP, but they are also saying it could be an unnamed gene. He has all the symptoms of PSP, which the doctor confirmed. They said it does not run in families, when he's cousin died, they would not allow them to do tests on his brain, so I was not confirmed. Yvonne xxxxx


Hi Yvonne, I know this is going to be tiring for you, keep visiting George in hospital! But you never know, little things like this, is where the break through, we are all waiting for, will come!

My mother has Alzheimer's, my grandmother had it, her brother had it, to me, it makes sense that, me and my sister and our cousins, even our children, should all have tests for this disease. Again, research into this disease, may bring results for PSP as well. We all know, for both of these illnesses, it is NOT an old person problem, that's just when the symptoms reach their climax!

Lots of love



I talked to my husband about your dilemma, and he said without hesitation - she must go! I know he is actually more worried about me having to cope with caring for him as time goes on than about having the disease, and sees the need for carers to take breaks in order to continue giving their best. You can't keep giving and giving without replenishing. You all amaze me at how selfless you are, and I am not sure I can be. My answer to your problem would be to say 'I am going on this trip. I really hope you will come along and we will make it as easy for you as we can. If you really don't want to come I will sort things out so you have the best help I can find. '

Then go, and try not to worry. It is not much different from going for a few days and leaving the children with a friend. I certainly did that!

If the tables were turned would you want him to go?


Heady let's hope that it might be a bit of a break through for this horrible illness, I know it is going to be hard going up and down to the hospital, but at least I will be able to have a good night sleep, not sleeping well at the moment, I was up at 6 o'clock this morning, awake from 5 o'clock, washing on the line be 6.10, took George to centre, daughters came around and we had breakfast together, went to the hairdresser had my hair done when I got home my daughter had done the ironing, and the other one cleaned up my already tidy kitchen.

Picked up George I was 15 minutes late, and he is so miserable, because. Was late, but the icing on the cake was when the girls left they got the mat stuck in the front door and I could not open the door, had to get the ladder and lucky enough my son had left his little window open, and I had to climb through the window, lucky we live in a bungalow. Oh well baby sitting at our house grandsons, and they are still running around, they have just taken the dog into the bedroom, funny and games tonight. Love to you all Yvonne xxxxxxx

Finoni I, thank you for your lovely reply, still not sure what I an going to do yet, but I think we all need a rest a couple of times a year. Thank you for your kind words. Yvonne xxxxxxxx


I would suggest take the time and go. You are not always able to enjoy "you time" as a caregiver.

there will be a point in which he will be worse and you will not be able to leave, now while he is well enough take advantage of the time.

As far as George, as it would be nice to for him to go, 6 days of traveling to us is like 24+ days to him. Its exhausting with many worries.


Ahaigwood3 it only takes four and half hours to go, so from home to our apartment is about 6 hours, so it is not long. He is still deciding if he will go, tickets are going up, I have told him that I will go, because I need to get away. Near the centre he goes is a place were he could stay, which would cost me quite a bit of money, but they are not allowed to take him to the centre on a Monday and Friday, it is literally next door. It seems when you try to move forward, you are sent 10 steps backwards. Love Yvonne xxxxxx


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