My husband has PSP and has slowed down a lot lately. We now have a stairlift and an adjustable bed. He tends to lean to tbe right and this seems worse in the afternoon and evening. Because of this if he starts to fall he goes this way. Also he gets back pain as well because his spine is now out of line. Does anyone else experience this? He has Butan pain patches and takes paracetamol but nothing seems to help although hard to tell unless you stop these.
I am feeling very lonely and miserable at the moment. I pick up my grandchildren from school every day to get me out but feei guilty. I am going on holiday in August for 2 weeks and will get a live in carer. I feel bad about this but need to forget about everything although I know I will have to go back to reality. I dread that for some reason I'm not going to get there and feel very selfish. I also know that you don't know what the future holds and it may be very bleak.
Sorry just feel that I need to let this out!
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LindaK12
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Don't apologize for posting of your feelings! All of us who are carers here have felt the same way! Think it is perfectly normal! We are as trapped in circumstance as our loved one.
Understand your reason for picking up grandchildren - but ask yourself if you are taking on too much. Do you have to do it every day?
Have you tried introducing your husband to an occupational therapy class run by Hospice? I have had no contact with them myself, but understand they can do more than just end of life care. It may help your husband get out and meet people with similar life threatening problems. He may take a bit of persuading! I think he would benefit from meeting others who are also dealing with s****y lives!
He sounds rather negative. Could this be because he is depressed, and that an antidepressant might help? In fact, you both sound under pressure. Absolutely understandable! You have come to the right place for help, understanding, and maybe solutions!
You both sound like you need a holiday! Could you try just a weekend away in UK as a 'trial' to see how you both manage. It doesn't have to be any more than somewhere you would both enjoy together. Can you manage without a carer?
It may still be hard work for you! You will need to plan, think and pack for both of you - and probably plan toilet breaks along the way, and maybe be prepared for the odd 'whoopsie'. You may not be at that point!
Do it for him! You may then feel less guilty about going away by yourself.
Have been here and done both. Have not had so much trouble with insurance tho, my love only had diabetes and high BP to declare. I did arrange a wheelchair at the airport. He refused at first, but then had a bit of a mental breakdown in Singapore and it was gratefully accepted! While we were away in UK he had a "heart episode" - not sure what, but when we arrived home again, he was given a pacemaker not long after. We had no other diagnoses, but he was slowing down, and there was suspicion of PD later on but not at that time.
So you see, it is possible to travel if you put your courage to the sticking point and DO IT!
Talk to him and see if you can persuade him that it can be doable! Talk to the insurance people suggested and see how you get on.
NOTHING VENTURED IS NOTHING GAINED!
Keep your chin up! You will find lots of moral support here. And perhaps see what other assistance you are entitled to and can get in the UK. There is plenty of advice around on here.
Thankyou but he has no confidence going out as he is frightened of falling. We do have a light weight wheelchair which is a boon, and a lightweight walker which he uses all tbe time. He encourages me to go out as I think he feels guilty but I know he shouldn't be. He goes to an excercise class/physio at tbe local hospice every Monday and enjoys meeting the others (all different ailments). He did go to a day class thete but this only lasts 12 weeks and they have a waiting list so have to try and fit everyone in. I think he feels secure in the knowledge that there are professionals there if needed. He takes anti depressants already and has been very unlucky as in tbe past has had prostate cancer, back surgery and stents fitted. Now PSP and not knowing what the future will bring. He tries to be as independent as he can be and usually falls when he has over stretched himself.
In the afternoon he likes to watch tbe horseracing, after we have had our meal (we eat at lunchtime).
I suppose my reason for tnis post was that at the moment I am not feeling strong and feel rather helpless and mentally drained. Hopefully my strength will come back. I am very grateful that I have my health to look after him
He sounds like a caring loving man who shows his feelings! My love bottled his up because of circumstances early in life that made him self reliant and frightened of showing his true feelings.
Your husband has gone through a lot already. You are his rock! Stay strong for him and you will help him through this.
To do this, you must take care of yourself!
Look at the care package you have and see if you can reduce your load a little. You are not deserting your duties by doing this. You will be able to spend more time being his wife and companion.
Another thought. Have you approached your OT, or your local Parkinson's group? Ours here had helpful suggestions for exercise and dancing. My love was no dancer but he surprised me by wanting to be at the meetings and he really enjoyed the interaction. He loved jazz!
Keep posting here. You have many 'locals' who will help you who already post here.
No need for apologies. I was 'there' myself Wednesday when I posted as I think I felt that I had come to the end of my tether. That is what this website is all about xxx
Nigel has CBD not PSP but they are related and he too leans to the right. It is always a first sign of an infection or things going wrong as it becomes far more pronounced. We have to have a very sturdy zimmer frame in the house and I have one upstairs and downstairs. We also now have a proper electric wheelchair through OT which I use with him as he could not manage one himself. He lost confidence too and I found the lightweight wheelchair too heavy to push. We had to wait quite a while for it but it is invaluable. The lightweight one is not out of use as it gets him down our path and is brilliant for getting my recycling bins out too. If you get the OT booklet off the PSPA association you can give it to them and they may be able to provide you with more equipment to help. We recently had a shower chair with arms and a drying chair as he was sliding off the ones without arms. I have also made the decision to move to a bungalow as he gets quite anxious getting onto the stairlift at times and if he seizes up cannot use it at all. Think I am crazy though as I now remember why I never wanted to move again!
I do hope that you enjoy your break so that you can recharge your batteries. I have a friend carer who is doing that at the moment. I am not brave enough to do that but have had some marvellous respite breaks with Revitalise, if you are in the UK, where we go together and there is 24 hour nursing and personal care. Grants are available if funds are a problem.
Big hugs and good luck
Ali B xxx
Dad who has CBD always leans to one side or the other when sitting or in bed. He has pain in the neck/shoulder area from his head being always forward, chin nearly on chest, and uses an aspirin type patch for the pain.
As for going on holiday don't feel guilty, as a full time carer you need a break also. You have someone to fill in for you so just make sure they know what to do in case of an emergency and have your contact info. I had a bright red folder in which I had a form that listed all Dad's medicines, what he was diagnosed with, doctors contact info, my contact info, etc in it. If I was ever away and another carer was here and something happened then that carer was instructed to get that folder to whatever medical help was needed. I also had a laminated "daily routine" made so Dad would hopefully get most of things done he needed during the course of a day.
LindaK12, we are living parallel lives! The description of slowing down and leaning then falling describes my situation with my husband, C. However, I gratefully report that he has no pain. Thank God for our blessings.
The listing (like the Tower of Piza) has grown increasingly problematic. Chris walks with a gait belt, I walk backward while he is repeatedly told to focus, walk heel/toe, etc. We basically dance our way across the room from the dining room chair to the stair glide or wherever. I literally "lead" and he follows.
-- Then the fun of trying to get him to sit down begins. That is currently our biggest issue. Chris is unable to bend his knees and sit. "Touch your knees, reach for your knees!) used to work which bent him forward and his bottom could be pushed to the seat. Pushing on the top of his thigh produces nothing and maybe even resistance. --
Re: the leaning to one side. I've found that holding Chris' gait belt on each side of his waist while facing him with his hands on my shoulders and asking him to do knee bends in the fashion of a "squat" type exercise helps him to even out his balance. Also, I'll ask him to put his weight on one leg then the other pressing the ball of his foot and the outside edge of his foot rocking to the inside edge along the arch helps him to engage his sense of touch to the floor. These are tiny "exercises" that help tremendously. While visiting family, they have been blown away at the rapid improvement in his "walking" even if for that short distance from a recliner to the dining room, or bed or bathroom.
I'm not sure how I figured this out but I will say that Chris did yoga about 25 years ago (thank God!) and he was a terrific dancer (!hahaha!). He understands what I'm saying because so much emphasis was made about foot placement in yoga. I feel quite confident that standing (with assistance or holding on to a bar) and focusing on the feet helps and can be learned even if one has never done yoga. Simple things like becoming aware of the pressure of the foot on the heel vs the ball vs the outside edge vs the inside edge, raising the toes, standing on toes (we do this using a chin up bar left in my son's door jamb) all helps.
I truly believe my husband would have been bedridden many months if not years ago. Sadly, in spite of all his efforts and mine, that day is fast approaching.
You mentioned guilt ... I have it in spades. I learned last week that I will have two days of adult day care. When I tell you I was walking on air that doesn't even begin to describe the happiness. And, at the same time, I felt guilty. I am following through, however, my house is literally falling apart. The care giving might not take 24 full hours and I do have 10 hours of help per week but I am so dragged down and maybe even depressed that I can't do the simplest things. I have horrible anxiety about all that I neglect like finances and home maintenance and my own health! The loneliness can be overwhelming. We don't want to complain, how can we! We always put that smiling face forward and fake it till we make it and make it we do. And all this with serious prayer! I can't imagine what would happen if I didn't have my faith and meditation!
I am SOOOOO happy to hear you are going away in August. As my husband is now in home hospice, I should be able to get a short respite care time after six months. A few months ago, that would have been a "never gonna happen." Now I know that if I don't get that and it can't come soon enough, I will drown. I'm so glad to hear you "let it out." This site is a safe place to do just that. I feel particularly free here.
A caregiver's support group has also been a tremendous help to me. It was there that C's PSP diagnosis became to pass. We had been down that PD, Parkinsonism, "Be grateful it's not FTD (frontal temporal dementia)." route. Ive been going for well over 5 years now. What a blessing that has been and I've even developed friendships with some of the folks and their partners. These are special friendships.
Well, I've certainly blabbered on here. Thank you for your share. It clearly resonated with where I am. It's comforting to know we are not alone in all this.
Having read your post my problems are put in perspective. We don't have carers at the moment but that day may come. Also how must our husbands feel? Thinking of you x
Linda and Hubetsy, I echo the good comments made by Jen and Ron. This is a safe place for venting - and its absolutely necessary! Vent every maddening, resentful, angry, hurt, sullen, bitter feeling you have! We understand each other and dont judge. We've all been there.
If we don't keep ourselves as healthy and same as possible, what good will we be to our lovedones if WE breakdown? The really hard thing is our dear patient may well not understand this: they may have cognitive losses and/or become more like children in that they cant see beyond their own need and fear of loss of security. Of course we understand that, so we have to lovingly but firmly pull ourselves away and take care of ourselves.
Most of all, as our wise Heady always says to all of us: "Ditch the guilt!!"
My wife Mary has these symptoms and is also incredibly stiff (almost rigid). I try to give her a soft tissue neck and shoulder massage three times a day which our physiotherapist taught me. It is not difficult but time consuming but gives relief and helps her straighten up temporarily. She did moan that I was not as good at massage as the fit, young, good looking physiotherapist but she is now grateful for my 68 year old attempts! Also we have found that Cocodamine is our pain killer of choice but is on prescription. Beware though it can cause constipation which we manage with Sena tablets. As a carer you have to get used to self recrimination, guilt and emotional turmoil. I never thought that I could cry to the extent that I do but remember, if you burn out, he will have no support. Rob
Rob it sounds like you are doing a great job with the massage! However who wouldn't like a good looking young man to do it instead? 😁. You sound like a great husband and I am sure Mary is very glad you are there for her. The crying is normal. I was able to cry more before my husband died than afterwards. I think I only caught up with that months later. The tears still come if someone is nice to me! Have to be careful or everyone will avoid me? That is why everyone on here is a friend and we all understand the feelings that go with this awful condition. Take care of yourself and cry when you want to.
My husband also has PSP was diagnosed three years ago but on looking back has had it a lit longer. He had one very bad fall and now he leans to the RH side. He also has prostate cancer that is controlled at moment by injections. Unfortunately he is now in a care home as I could not get the help and struggling to manage him on my own. I visit him every day and feel guilty when I am starting to do things. You do need a break and I used to occasionally put him in for two nights respite to get a break. Go on holiday and enjoy the time to recharge your batteries. I am going away next week for a few days the first time for two years and know I will feel guilty. I also at times feel lonely and miss him so much just being there but we have to make a life for ourselves. Have you tried Crossroads to come and sit with him say once a week so you can get a break. Paulinex
Reproducing the phrase of Anne-Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Also in our case we notice an excitement and obsessive attitude in the afternoons that we try to alleviate with activities and distractions. We are also testing CBD Oil in the afternoon but I still have no conclusive results.
By private mail I send you our experiences with PSP hoping that they can be useful. Each case of PSP seems to have its peculiarities but there are many symptoms in common with other patients and solutions that could be useful and you will find in this forum.
I go ahead reproducing the phrase of Anne-Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
My husband started CBD oil a few weeks ago and we had to discontinue the drops at night due to wakefulness at bedtime. He now gets 10 drops under the tongue (which can be difficult) upon waking. I'm not certain but it seems like he is talking (such as it is) more.
Linda you need to let it out. I have days like this. Sometimes I cant be strong. But I am. Make the most of the good times. You must do what you must. Do not feel guilty. Take each day as it comes. You are doing the best that you can. There are no rules. Take care ... V
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Feeling confused 
Holiday and CHC
