I'm sorry I have so many questions......my heart broke last year when my father told me My Mum with PSP and him would never come over to see us again in Australia. My Mum has travelled all her life with her business and all her beautiful holidays. Now since her diagnosis Dad refuses to travel IT ALL A FORIEGN COUNTRY. This is one thing my mum has said she wants to keep traveling and see us and all the grandchildren. My father refuses. : ( when I travelled to see my Mum in the Uk I ask the question to the specialist given mum condition is there any reason why she can't travel and in not so many words is said to my Mum if it make you happy and you want to see your daughter and grandkids do it do now whilst you still can.........I so miss my Mum and last time saying goodbye to her at the airport was like being at a funeral. My mum is very slurred and falls but uses the bathroom still, has a healthy diet we could arrange a travel campaign if Dad still refuses.....am I being selfish wanting to have my mum stay with me on a holiday I know PSP with no denial. Has anyone else stopped holidays due to PSP
Going on holiday: I'm sorry I have so many... - PSP Association
Going on holiday
Hi, my husband was diagnosed Sept 13. I know he has had for many years before that! Now, he in a wheelchair out, a walker, with my help indoors. Can barely talk, is incontinent.
We travelled until April this year. We have a house in South Africa, so that made travelling the last few years a bit easier. Knew the local doctor etc. didn't matter that he destoryed the shower screen. We are very fortunate, that we could afford to travel business class. We have had to stop now, insurance is getting to be a pain, can still get it, but I am sure any claim, would be denied! Also, life would be too hard, the house has steps, lovely large tiled floor areas, to build up speed during a spinning fall!!! We were going to go to Europe in a few days, but didn't bother, I can't do it anymore.
So, in answer to your question, yes it is possible for someone with PSP to travel, you can get insurance. But for the Carers, it bloody hard work, I can fully understand your Dad saying no, the organisation, the length of being in the plane, getting to and from the airport, trying to keep her upright all the time, so as not to ruin the holiday, from the time of booking, until getting home again. The stress levels are huge.
This is from someone, who loves to travel and has done everything possible to keep our suitcases from gathering dust!
S hates the fact we are not going away now. I keep toying with the idea, but NO wins all the time. I'm afraid, this is one time that you will have to accept that your Dad is right. He has to stay to be able to care for your Mum and if he feels he can't cope with the added stress, then I am sorry, but it will be you doing the flying!
Sorry I can't be more positive!
Lots of love
Heady
Hi I agree with Heady, we are off to Cyprus next week four half hour flight, all ready stressing about it, George is in a wheelchair, and a frame with help indoors, very dangerous he is, so many falls, our apartment in Cyprus, only has a bath, I am stressed about cleaning him, keep asking myself have I done the wrong thing? The flight to Australia is so long, not sure if it will be to much for your mum, and your dad to cope with such a long journey looking after your mum.
George diagnosed in May last year,min Cyprus , while on holiday and again in January, and I feel has has had it much longer also.
I agree with Heady, I think you will have to do the travelling. Sending you a big hug. Yvonne xxxx
We had our last holiday in 2011and it was a well planned easy travel journey but i still ended up in tears over it all. We caught a coach from the end of our road down to london then taxi to the euro star. Get of in paris easy peasy apart from the luggage keeping Brian on his feet having to think for both of us and by the time Brians son met us in Paris i was so exsusted and was really ready for a nervous breakdown. Then there was Brian out of his comfort zone. Then the lack of understanding by his son and family about the lack of mobility and his apathy.
By the time we got back home i said that is it we cannot go on holiday again. The very thought of travelling now would make me run for the hills. Janexx
Yes, oh yes. Nightmare. Last one for me - 4 years ago now. Packed the bath lift, the mobility scooter and the wheelchair after taking the back seat out of the car and went to a disabled user friendly hotel on Hayling Island. Unfortunately we had a bowel movement on the way there which was tricky.
You couldn't swing a cat in the bathroom and I was stressed for the entire week. Just when it couldn't get any worse, the fire alarm went off at 2am one morning and it was pithing down with rain. Oh deep DEEP joy.
Sorry but I agree with the others. I took my husband away for the last time in October last year. It was a 3 hour car journey and we stayed in a totally adapted ground floor flat. My brother and his wife came as well but I said never again. The physical and emotional strain was exhausting. 5 months after C was diagnosed we went on a cruise and that was amazing but 7 months after diagnosis I wouldn't have wanted to have done the same holiday. Things can change so quickly. I agree your parents should do all they can while they can but only if your dad has the energy and will. He should never be made to do anything he can't cope with.
I know you have been to see your parents but have you had sole responsibility for your mum for any length of time? Unless you have, even though you have seen how your dad copes you can't know what they are both going through.
Your mum has PSP but your dad is suffering as well. If you have read many posts here you will have seen how we have all had times when we have thought, shouted, cried we can't do it any more. Please don't put added pressure on your dad by making him feel guilty for not going to see you. Accept his decision, only he knows how he feels. I hope he has support. He won't be able to do this alone.
It's not the same but we now have Skype and FaceTime so you can 'see' each other regularly and hopefully you will be able to fly back to see them again.
When you do speak to them, try to be positive and make them smile and laugh. They will want to hear all your family news, not talk about PSP for long, and if your mum mentions going to see you, however hard it is, tell her it will be too much for her, support your dad and don't give her reason to be cross with him.
Lecture over. Try not to be sad.
Sending a big hug and hope you get to Skype soon.
X
Thank you all for your support and advice. I can see it is harder for the carers when it comes to travel and completely understand. Sadly your partners sound more advance than my mum.... When I went over I took mum out with me everyday to give my dad a break and would love to have brought Mum back with me to stay in Australia for 3mths but then I don't think Dad would want to be away from Mum that long. Unfortunately Dad wont except help he says he is perfectly capable but like I say can mum do everything for her self at the moment. She has slurred speech n has had a few falls which sadly my Dad blames her for falling not PSP and gets quite nasty with her. Stress n not copying I hear u say but he has always been this way. I wish my father wasn't going to be mums sole carer as he isn't this type of man, don't get me wrong he loves her but everything will be her fault. This is why I ask the question of travel as I would love to look after mum here in my home for a positive out look in life laughter n happiness and to give Dad a break at the same time. But given that I totally understand where you are coming from too. And will respect it probably too much for him but I also know Mum is sad n needs more positive around her not slapped down. Oh the miles are a killer ox
Oh sweetie. My heart breaks for you. Your dads doing the best he can as we all are. Can you afford to fly over and pick your mom up and give dad a break? I miss our trips and was a stewardess forTWA, but it is hard. Big hugs!
We last flew to Florida in April 2013. Have to admit I did get a bit wound up in the airports, but lots of help. Priority boarding, seats near toilets etc. so it's doable, but must admit Oz would be a bit daunting!
So holidays now? We have just woken up in a car park in our camper. We are about 150 miles from the Med in Spain. Being self contained makes life relatively easy. And the shower is small enough that if J falls she can't go anywhere. The days are slow, but we get to see the sun, and J doesn't need to get out of the camper at all, if not in the mood. But she's not much good at map reading now, so sat nav is essential!
Back in 4 weeks to be lighting the wood burner I suspect!
It's a really tough one Troubles. All the advice given above makes so much sense, yet it is awful to deny a PSP sufferer something they want to do when you know that tomorrow, a massive downhill slide might prevent them from ever doing it again. I know that in the last year, even getting my Dad ready and out of the house into the car to the local Health Centre was an absolute nightmare and had to be planned like a military operation, so I can understand where all the carers are coming from. Day to day caring becomes so hard after the long, drawn out illness that this is, any additional stress can be breaking point.
I also understand your concerns over your Dad's personality, and that he isn't cut out to be a carer. Neither was I! It was the last thing I could ever see myself doing, yet when it is required of us, we step up. Sometimes we make a hash of it, but we learn as we go.
I can totally see why you would want your Mum out for a three month visit, however, although she seems to have been diagnosed quite early (which is rare), you never know how much she might deteriorate in three months. She might manage the trip over, but not the trip home. You would have to consider this, and if your life could turn to full time caring if that occurred. The websites often quote a life expectancy of five to eight years after diagnoses, but many people have the disease for several years before the eye problems make an appearance, which is usually how they separate this disease fro others which appear very similar in earlier stages. The neurologist told us she had one patient who had been diagnosed fifteen years ago, and was still going.
I think, all things considered, your Dad will come around to accepting help eventually. Unfortunately and heartrendingly, this disease leaves most people unable to do anything for themselves over time, and this is when your Dad will probably seek assistance if it's available.
No one can tell you what to do of course, only share our own thoughts and feelings. I was in a similar situation (although not quite those miles!) and decided to give up job, sell house, and move in order to care for my parents, who lived in Spain. If my house had been even remotely suitable, we might have done it the other way around as things would certainly have been easier for me in the UK. As it was, my house was impossible for both of them, so I came to Spain.
You're in a tough situation. You could make your parent's stay permanent, or your Dad could travel back and forth, but if you're not in a position to take over her care full time, then maybe it's best to leave the decision to your Dad, and just visit as much as time and finances allow.
Sorry we can't tell you what you really want to hear. Search your heart and you'll find the right answer for your family. Love and hugs x
Oh my goodness, your poor heart must be nearly broken but it sounds like across the miles on Skype is the answer for u all now. I still travel to Ireland with my hubby, I do all the driving now because of sight issues, but even though I have assistance in the boat I've told my family and friends I need someone else with me as I can't manage him in my own. I will go as long as I can but the time is fast approaching when I'm going to have to say NO. It's going to b hard so I do feel for u. There is no helpful answer to your dilemma, either u travel or just the boho e, sorry. Life is so cruel to us all. Your father is doing the best he can in the strange circumstances he finds himself in.
Thank you Onthemead, pippin2328, Sharon637 and Duffer, My heart wants Mum to come over but it also tells me I can't see my parents apart for a moth or 3 at a time after all their yrs together. especially when symptoms can change so rapidly. I have been over this year on my own but I leave 6 kids and a hubby behind who hubby needs to take time off work to watch the kids whilst I'm away for us all to go over cost us over $20,000. We just loved enjoying mum and daughter time. Thank you all so much for all your support
Dear Troubles. I am late weighing in, and it sounds as if you have come to a decision, but I have to say that every case is unique, and some folks don't decline as quickly as others. My guy had a long plateau after diagnosis, almost a year without much change at all.
We traveled all we could after the diagnosis, and had three good years of it. It was great, even if I had to do all that wrong side of the road driving. Last year, year four, I was a nervous wreck when he flew to Scotland from Boston without me, but he made it on his own, with wheelchair transport when he changed planes. That part wasn't bad. He was visiting his children, and despite their close attention he did fall, so ended up enjoying the excellent attentions of the royal infirmary in Edinburgh. His kids were upset about it, of course. Ultimately the good memories they made outweighed the trauma, but I don't expect anyone will suggest another attempt. we just did one road trip this summer, and I discovered that it has become very hard to manage the rest stops. It's just physically èxhausting and stressful. I came home and basically collapsed for several days. So I am with those who wrote saying it can be harder than you'd think to manage a trip.
What I mean to say is that if your mother is still independently walking and if you could manage to convince your father to permit it, it shouldn't absolutely be out of the question, right now. Someday it certainly will be, and one day he may be sorry not to have had the break. I do have to ask, what does your mother think about it?
Anyway, with six kids you do have more than enough to manage, so I admire your willingness even to have considered having your mother for an extended stay. It must be very hard for you to be so far away, but sometimes the best thing you can do for your parents is to take care of your own family.
Hang on. All the best. Easterncedar
My husband travelled all his life. Reading and travelling were the hardest things to lose. But Going On Holiday, take the doc's advice. My husband travelled with PSP until he couldn't any more. He was in the same situation as your mum. He did make a trip back to the UK, He was checked by the specialists and told that as long as he got the use of airport wheelchairs to take him to and from the plane he was OK to go.
We found that if I didn't go, we could afford for him to go business class (Emirates from NZ) making it so much easier for him.
He got to the UK, he even took a train trip north. He went to Ireland and the US before coming home.
The main thing is as long as there are other either side, it's OK. If you mum can get to the plane's loo on her, she should be OK.
Check it all out.... your mum might be able to make it still ..... and if she can, do it while she can.
Hope all goes well, let me know. K
Hi,
My husband was diagnosed with PSP in September 2014, we used to go abroad on holiday twice a year. We went to Menorca in May this year, took our youngest son with us who is a big and strong and we stayed in a private villa with its own pool. The help we got at the airport was fantastic but without my son I know I couldn't have coped! Although we were given seats close to the toilets it was still a struggle to keep him upright on the plane!
When we arrived at the villa I could see that it was going to be difficult to keep him safe, it was very hard work and we struggled without all the facilities we have in place for him at home. He was out of his comfort zone and fell off the toilet onto a tiled floor which resulted in a nasty gash on his face.
I came home feeling more tired than before we left and unfortunately I know that it will probably be our last holiday.
I don't wish to sound negative but it is a very stressful experience and I would think long and hard before attempting to do it again!
I agree with Heady, it would be too much for your Dad and if there's any way you could visit your Mum it would be a far safer option!
I do hope you manage to find a way to see your Mum, I can fully understand your concerns, it must be very distressing for you being so far away...
Love and hugs....Pat xx
Ox Pat.
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