Cannot believe less than a week ago I was contemplating a long haul flight with my husband!!
We had 2 really good weeks ( reduced aggression, minimal incontinence, some comprehensible speech, an apparent enjoyment in social interaction, just intermittently coughing, sleeping for 3 hrs at a time etc). and then PSP and the reality of our actual life resurfaces with all of its challenges. Amazing how a short period of ‘ relative normality’ makes you think you can manage something you had previously taken for granted!!
My naivety surprises me, I guess we all get sucked in at times just wanting a more ‘normal life’
So no further travel plans from me!!!
Back to the grindstone of PSP and its unpredictability
Love to all from a chastened Tippy!!
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Tippyleaf
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Oh Tippy don’t you just hate psp so much, we build ourselves up on good weeks only to be pushed back further when psp raises its ugly head. Maybe they could all come over here to see and make believe he is over there? Sending you a massive hug. Yvonne. George has a chest infection at the moment, the syringe driver has been a bit of a nightmare, but district nurses have been amazing. Yvonne xxxx
So sorry to hear about George’s chest infection. Hope the district nurses can get the syringe driver sorted. When equipment works it makes life easier and when it doesn’t must feel like Another thing to worry about!!
Oh Tippy, it must be so disappointing not to be able to fulfil your plans. It doesn’t mean you can never go away though, if you are prepared to stay in the UK. I managed to find self catering properties adapted for the disabled and CHC provided carers from the area for us on 3 occasions. Another week I found a care home in the town my son lives in and CHC paid for it. We were able to take my husband out every morning, returning him in the evening so he could be with his son and grandchildren. It wasn’t easy arranging it all but was well worth it although my husband liked the self catering apartments better than the home.
I always found PSP gave me a false sense of security on many occasions. I’d just get used to the new normal when Wham! The roller coaster would take another dive and we would both have to learn to live with yet another additional burden. So it goes on, going along a steady plateau and then a dive, then another plateau only to dive again.
Thank you for your post about going away in the UK. I had hoped to get away in the spring but then Chris took a dive, about a month after my Mother died. I thought we'd get away only to have my dream shattered, but you sound as though you've cracked it.
I shall investigate what facilities are near my son and further west.
Have a look at bodbournemouth.co.uk It will give you an idea of what is available. We stayed here 7 times, and on 3 occasions I took my dad in his 90s with his mobility scooter and Colin in his wheelchair with the help of my brother and sister in law and CHC carers. We stayed in another very similarly equipped property in Southwold but unfortunately that is no longer being let. There are places out there.
Tippy, you are perfectly normal (in the PSP/CBD world): you are trying to have as much normal life as possible - both for yourself and hubby! Of course you dream and plan and do your best to make things happen!
As NannaB says, we keep adapting to each crisis and plateau. That feeling of "Oh, this is normal, now we can plan something" is our minds returning to good/normal thinking/feeling because who can survive in crisis mode all the time?
Sorry for your trip plans tanking...hope you can find something closer by that will accommodate hubby, and you can still look forward to a time away.
Darling Tippy, another shit of Psp! I feel like any plans always goes belly up where Psp is concerned. Just take time to breathe and just get through day by day, I can’t deal with it any other way. Much love to you darling x
A couple of days ago I was FaceTime-ing with my daughter. We have booked to visit her in the UK in October. She said to me, "Am I right in thinking this may be the last time you are able to come over?"
I laughed it off and said her dad had a few more good years yet, but the reality is I don't know. Ian's mobility remains a problem here, so travelling with him is not going to improve.
I guess we go back to the 'day at a time' scenario and see how October goes....
Fully appreciate your disappointment, Tippy, and I hope you find another way to enjoy your days.
So sorry to learn you cannot take your husband to Malaysia but I did think you were being a bit ambitious. I think at times we all think we can do the impossible. Even a break here will be hard work but you are coping amazingly, always so positive. PSP is the pits. They just think they can travel anywhere and do not see any obstacles. Imagine taking him to the toilet to change, there is barely enough room for one person in there. As Yvonne said perhaps some if the family could come over here. Pauline xx
You are right, considering I swore never again 2 years ago! His last trip was with a cousin but more than a year ago and no one else feels able to take him now!
John has had another fall and the paramedics have been out but he is ok Three weeks ago I was finally toldI have nerve damage and have to go and see a specialist in London. It has only taken them nine months to decide this. Hope you get a trip sorted. I think there is quite a bit out here that caters for the disabled and now you gave CHC hopefully you can take a Carer with you. Good luck. Hope to see you next month xx
ive neen through exactlythe same i was ready to book a holiday for us and our 14 year old as she is desperate to hv an abroad holiday as we hv always gone up until hubby took ill with CBD.
we went to our 1st visit at loros yesterday and i spoke about going awzy only to be told not to book in advance as the illness is so unpredictable. so more or less book, then go if hes doing good.
so disappointing as we as a family hv had so many changes to deal with i just want a bit of normality. xx
Hope you can take a Family break together or is there someone who could stay with your husband while you and your teenager took a weekend away. We have a son who wars 16 when my husband diagnosed with PSP. I try to have days out /occasionally a weekend with him. Need aa live in carer now to do that . But it is good to have time with our young ones - quite rejuvenating for both of us as they live this horrible disease too.
Hi Tippy, we are reading from the same page in the same book. I think the trouble with me is that when the better days surface I am subconsciously hoping for the 'miracle' but of course I soon get dumped back into our real world. I just don't make plans anymore but instead grasp the moment when things are reasonable because being away when things are really difficult just exacerbates my stress and I come home feeling a complete wreck. At the moment things are difficult. We have a hospital appointment this morning for R's back pain which has got to the point where standing for a couple of minutes leaves him in excruciating pain - perhaps PSP or something else but needs to be checked out. At the appointment he is likely to tell them he is fine because he just can't process what he is being asked - if anything will send me scuttling off to find the gin bottle this short trip out definitely will!! I am currently checking out care homes with the aim to get a bit of respite for myself. Not done it before so a bit of trepidation but I definitely know where my sensible hat is these days and gonna put it on and do what is needed. Best wishes to you - how the heck we are all sane is a miracle in itself. Hils. x
Do hope you can get the back pain sorted - how horrible for you both. Hosp /GP appt are difficult with CBD/PSP as processing and answering questions is so delayed. Never enough time for them to actually process and articulate.
Prior to appts now I try to make a plan with my husband and write up a list of bullet points based on his feedback. As he usually takes ages to answer I ask him if I should start off by going through his list . This seems to reduce the aggression and frustration after the appt and we get through the concerns we have. Too many appointments we left without an outcome as he too said he was fine when asked !!
Sorry to hear the trip is off, it's so difficult coping with the ups and downs. There are options in the UK for a break for you both. I took my Mum to a Warner Hotel which had very spacious suites with wet rooms & a patio looking out onto gardens, plus they had an arrangement with a local mobility company so I was able to hire a commode, perch stool etc which was all delivered to the room and then collected again. Found the staff very helpful. There are also hotels which can offer carers to help with getting up and going to bed - Safehands is one which has hotels in the Northwest, haven't tried them as Mum can no longer face even an hour's journey, sure there must be similar places across the country. Take Care Alison
Hey Tippy, we all have earnt that Tee-shirt the hard way. Please don't get too disheartened. With help and lots of imagination, you can still find somewhere to go, that doesn't involve flying.
Hi Tippy, I so get where you are coming from. This is the first time in 43 years that we have to call a halt to holidays abroad. My husband really wanted to go away to Spain and I would truly love to bring him, but I know in my heart of hearts I would not be able to manage alone. Even just the journey to the airport and trying to check in while trying to keep one eye on him that he hasn't fallen or wandered off is so stressful. I did it last year, he loved his holiday but I came back so stressed, I said I would never try that one again. He has progressed downhill since that holiday so his needs have multiplied and I cannot take the risk of anything going wrong as I would be on my own. I am currently exploring holidays here in Ireland looking for a safe place to go. I feel so mean not taking him away as it could be the last time, who knows with this awful disease. It is so unfair.........
Hi Ladyalone, we too are looking to go on a short break. W wants to go abroad ie Majorca, but I'm not so sure I could manage him on my own. I think he is thinking back to our holiday in Portugal last May, hitch was good, but our daughter came with us, which made it possible. So I'm now looking at Ireland too. Good hunting, hope you get something. Lots of love, Nanny857x
Hi Tippy, sorry you are not getting to go, this PSP has a lot to answer for, messing up our lives. Hopefully you will find somewhere that meets your needs which you can enjoy together and you feel like you have had a break and not stressful. Lots of love, Nanny857x
I am quite happy in the UK but for my exotic flower of a hubby he longs to go to the land of his childhood just one more time....... PSP is cruel in so many ways for all of us on this site
Tippy sad to say I had to deny my husband a trip to Ireland as I couldn't have managed him alone. He was so sad about it. So was I. Just came back from there last night. My first holiday since he died. I think he may have come with me! My watch stopped just a day before I left here and it started yesterday when I was coming back! Very odd as it is a battery operated one. Holidays are a nightmare too far with PSP! So maybe he understood after all?
This first trip without your husband must have been tough. So many firsts in this new life. I hope there were some happy moments too.
It feels mean to deny our loved ones a holiday but sometimes we physically and emotionally can’t manage them. I am exploring a few days away in the UK thinking if I had a night sitter it could work.
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Someone else lost to CBD
The Ice Cream Challenge
My mum is also free at last. Thank you for your replies.
