Hi everyone I have just come back from a week away with my daughter and grandsons, yes it was a lovely break, but all I worried about was George, he had a fall, but was fine.
People say oh luck you had a break, but these people don't understand what I have been through, and still going through, our people saying George looks well, come around to our house and spend a week here, see what you think after a week.
I am tired fighting George's corner been doing it for over 2 years, will continue to fight it, and fight the people who think I am lucky to get away, have to get our children involved, for me to have a break. Feel really upset about it.
I feel exhausted spent the last 5 years, telling doctors at the beginning that George was unwell, only to get no he is ok, our don't you think he is better? No I would say and the get ignored.
I have aged in the last 5 years, we have lost our retirement plans, I have lost my husband to PSP, I have neglected my own health, to be there for George, so how am I so lucky to have a break away from PSP? Sorry for the moan but I feel totally lost as to why I am so lucky to get away. Sorry Yvonne xxxxx
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Yvonne, They just don't get it. I would do anything to have Don back but remember so well how he suffered, not fair. You can tell us anything because we have been there and done that.
I understand what you are saying i hear this too. Even when we have help we are not off . Its always their day and night. God bless you and give you new strenght.😇
Truly do understand where you are coming from,I do believe that the people who have love one's with PSP really know how we are feeling. Wish I had words to make you feel better.
Unless you live with PSP 24/7 you will not understand the stress, anxiety and guilt that builds up inside you. Yes .. you can have visitors but they can go home and once again you are left to cope. Glad you had a break you deserved it. Take care. Love Jxx
Absolutely no apologies required Yvonne!! I’m sorry to say this but where others are concerned they are so ignorant to Psp that they say stupid things! I cannot believe how many people say my dad looks so well (I feel like saying are you actually thick)?! Then they think that mum n I must be so rested now that dad is in a nursing home?! Again stupid! The fighting doesn’t stop and sadly won’t stop until Psp stops. Rant away Yvonne, we are all here for you and I’m sending you huge hugs!! By the way I’m getting quite close to telling people they are stupid and to foxtrot Oscar but it probably won’t help because they’ll never bloody get it! X
Amanda sending you a big hug and to your mum. I am really close to telling this person to **** off can't stand people that are force, getting me down. I can't understand people that say how well George looks, get real please. Yvonne xxxxx
Oh, Yvonne. Don't they see that you didn't get away from PSP anyway. You just changed the scene.
I always wanted to scream when visitors commented on the tranquil scene and how good he looked. The only ones who really knew were those who had had sole care for a few hours. They had experienced the stress.
I understand your despair. Big hug, Yvonne. You are doing so well.
Empathisd with your post so much, yeah we have breaks which is great but all we want is to be with our men and women, them being well, enjoying the times we have been robbed of.
I am away from the 27th, i have decided to go away close to home and be a hermit for a week , friends will pop in but i want to be on my own, rog has live in care which does work better, but they are so vulnerable you can't help but be constantly worrying.
So today another new care manager calling to discuss care plan, last #### for brains came and did it when i was out, clever that!
Julie sounds lovely just to be by yourself, nice fire, good book, bliss. Idiots why do they do that? George has been asked for a phone consultation, we can just about understand him, feel like saying read up on PSP. Have a good break. Yvonne xxxx
So true They would ask for Bruce's verbal verification for this or that I'm like "you sure?" and I'd put him to the phone and let them sort it out what was just said...hahaha ( dark humor)
Phone consultation, how bl....ludicrous, last time we were asked I agreed after they insisted ..... he fell asleep holding the phone after grunting he needed a poo. ....half hour later they rang to ask if I had authority to speak for him. X
YES! Yvonne, you are lucky to get away for a few days. To get some rest, learn to breath again. Imagine how you would feel with no break. Think of the state George would be in, if you didn't get that rest. Caring for someone with PSP is a full on 24/7 job. You do it all by yourself. What do you think the Health and Safety police would say, if you were an employee?
Of course you didn't enjoy it, or even feel the benefit the break. I still feel the effects now, some 10months on. It's going to take years to get over the caring for Steve, only then will I have a chance of coming to terms with his death.
The people that say, how well George is looking, take as a compliment. That is your doing. He is relaxed, well cared for and safe, of course he looks OK.
You know you have to keep on fighting the good olde NHS, I still feel bitter about the lack of care or understanding of the disease. You will find the strength to carry on doing this, until the end. There is always a small bit hidden carefully away, in your little toe. That's what this week away has done, re-filled that extremely important little place.
Those of us that have cared for our partners 24/7, know exactly where you are coming from, understand your pain and frustration. I hated having to rely on the family so much, for my self preservation. Still do! But it's what families do, why we are all there for each other. I suspect you are always first in the queue, even now, if there is something wrong with one of yours! Let them help you and yes, think yourself lucky that they are there for you.
This person that has upset you, feel happy for them. Obviously, they have never had the misfortune to experience PSP or it's like. Next time they say anything, reply that you are so happy for them, that they don't understand. That should hurt a lot more than a quick "runaway and play!"
Yvonne, I have my arms around you so tight, you can't breath. Please know we all are all with you, every painful step.
Oh Anne thank you so much for your kind words, I have a live in career which I have given up all my night sits, we pay for some care on top which is not cheap, other people think it is easy for me, but it is not I wished they would understand that I still have George to look after, medication to sort out, dictors to deal with, all bills and household jobs, I wished that people did not assume that I have it easy, it's bloody hard, yes I am lucky, but I still pay over 800 pounds a month towards his care.
Next time is see this person I am going to tell here we're to get off.
I have felt unwell often but still carry on with every day life. Anne you are right the toll of looking after George has had a toll on my health. Thank you for the massive hug Anne you are an amazing lady. Yvonne xxxxx
Also meant to say the children have been so supportive, covering breaks etc., they said we are paying back what you and dad did for us. So blessed xxxxx
I was fantasizing about a break yesterday. How I like to go somewhere quiet for a week to veg out. Sleep as long as I wanted to. Then I wonder how I could do it. If i’d be comfortable leaving Larry in someone else’s care for a week. His speech is bad enough they would have a hard time understanding him.
I'm in the view that respite is essential, if you want Larry to stay at home for as long as possible. You will be surprised how well he will be able to communicate with someone new, especially with a trained person. Steve went into hospital, he couldn't talk at all at home, but told the nurse all about his children, our house in South Africa. wish I could have been I fly on the wall. Perhaps it was just me he didn't want to talk to!!!
Yep Bruce could do that too. he could talk fairly well until he got real sick but even then a few clear words to his carer was a blessing and a shock...
Jeff 166, When I left my son for just two days to visit my daughter and grandchildren (I live Los Angeles and they in Portland), I was constantly worried. When close by, I did not worry so much, probably because I knew I get to to him within 15-30 minutes.
I think worry (while we are doing the caring) is like guilt when our loved one has died (why wasn't I kinder or more patient? why didn't I hug him more?, etc etc) . The situation reminds me of an expression my father would give me (when I was in a lose lose situation), " Pick your poison." PSP puts us in that situation more often....PICK YOUR POISON.
BTW, I was the one with a social security problem. I went in person to the local office and got all my answers. Apparently, no matter what you say on the phone (if you have initiated the call) they can't see identification (driver's lic, passport, etc) as when in the office and tend to be rude. I wish they would state better to go to local office than call.
It is pick you poison isn’t it. Part of my latest stress was Larry had a dental appointment Monday. Getting him there and back had been on my mind for weeks. We live in a house with ten steps to the street walk. Had to get him down them then worse back up. Told him my concerns about getting him back up. Had bought a transit chair to move him about once on the street walk. His cousin drove us to and back from the appointment. Getting home got him to the stairs and asked if he wanted to try going up sitting on his butt one step at a time. He said no then walked up so much better that I could have hoped for. What a relief once in the house.
Glad you got your social security question answered.
I hope you do not take offense, but I was comforted to read your post . Although I am very sorry that you are experiencing stress and constant hardship , you truly puts words to my feelings. People just can’t possibly understand the tremendous struggle of PSP. The worry of not knowing what will come next, and how we will be able to manage. I am also concerned about my own health and well being, both physical and emotional. I joke with Dan and tell him He should of married someone younger.
I constantly have people telling me what I “should “ be doing, and ways they think will make it easier. They do not understand the disease, our finances, etc,, yet they all have their ideas. Sometimes the things they say just make you know they have no clue.
It’s great to have this site and people who know that everyday with PSP is a struggle
So true Yvonne. Is it lucky that our loved ones have PSP? Is it luck that no one, especially doctors , even knows what PSP is? is it lucky to have to arrange and maybe inconvenience others so that you can get a few days to rejuvenate? And is it lucky that your still tired and worn out? If this is luck, we don't want it.....
I am sorry for both you and George. I know neither one of you signed up for this but how did you lose your retirement plans.....I mean I know you're not putting anything into it but you still have what you DID put into it, right? Make sure your money is still attainable...
Aging...I see women 5 years older than me who look 10 years younger than me....I still cannot sleep; wake every two hours....tried lots of meds and I cannot believe how groggy I am.after 8 hours; drugs are still doing making me sleepy....and if that's not bad enough they help me to lose more precious memory as it dampens my neurotransmitters ....So do I do drugs to sleep? or get up 3 times a night and finally wake up at 4:30....maybe one of these days I can just sleep like normal people...
If you find the answer Andrea, let me know. Just the same, either fall asleep reasonably quickly, to wake up 10mins later and that's it, until five minutes before I have to get up, or I skip the first bit and don't drop off until 6/7 in the morning. its so boring,isn't it? Far too tired to read, so just lie there, thinking!!!
Yes exactly! when I finally get tired enough to sleep, I have to wake up!!! My little piddly job is very multi tasked oriented, and I am realizing I have lost much of my multitask ability...I am certainly not a teen anymore.....especially since I no longer like doin' all nighters and then going to work.....i'm in a fog...
Thanks well it looks like several sweet dreams have come and gone since you wrote this post...sorry I am dog tired though I still cannot sleep....too tired do type though hahah
Good afternoon lovely lady, hope you are feeling less tired, I am totally exhausted had a really bad night last night, George slept for one hour, feeling totally stressed, I have forgotten about my week away. Big hugs Andrea xxxxxx
Yvonne, is this starting to be a pattern of not sleeping? (Especially if you are the only carer you need to get your sleep). My mom was in respite for a week, night 6 (last night) they finally called and asked for permission to administer nozinan. Apparently she slept. Are picking her up today and will assess with dr if this is something we can use.
We had that experience in the past as well. This time is the worst it has ever been for us. They gave her a shot last night at 11 pm now 18 hours later she is still sleeping. But at least she is peaceful for a period of time.
Andrea I agree with all you say, yes will make sure that I am ok when George is no longer here, I have to think about my life after PSP.
I feel like I have ages quicker with all that is going on.
Doctor gave me sleeping tablets, which I was taking, but don't want to get use to them, I wake up as well every few hours, I feel like I am not in a deep sleep, half way, it's horrible, don't think I slept well in the last 3-4 years. Big hug to you. Yvonne xxxxx
Nobody will ever understand how difficult it is to care for someone with PSP unless they have tried to do it themselves fir a couple of days . There are so many distressing aspects to it. It grinds you down. It is heartbreaking. Too much to deal with. I miss my mum so much as she used to be years ago and yet when I look back now all I see is the dreadful suffering. She didn’t deserve it as non of our life bed ones do
Dear Yvonne, you have brought back so many memories and I really feel for you. Some people said silly things to me and I even told myself that next time I’d biff them on the nose but then I realised that nothing was said in malice, just ignorance and my tiredness made me see things in a different light...or rather darkness. Looking back I can see they said things they thought would make me feel better. How would I or Colin have felt if they had come in and said how awful he looked. I also remember how awkward I sometimes felt not knowing what to say to a friend of mine who has a severely disabled now 43 year old daughter, PEG fed since she was 9 months old, doubly incontinent all her life. I felt so bad when I remembered some of the stupid things I said to her but no one can ever understand something they have never experienced.
Being upset and angry at people only hurt me Yvonne so I learnt to smile when they said stupid things and some I stopped inviting round. I now have all the time to myself I longed for when I was exhausted during 6 caring years. I long to have Colin beside me to enjoy all the things I am now doing, things we had planned for our retirement but I wouldn’t want him back with PSP.
Sending you a great big hug Yvonne and feeling frustrated I can’t do anything physically to help.
Thank you Bev will do just that, I feel better about it today, going to ignore them, think you are right about not knowing what to say. Going to just smile and ignore them. Thank you all for your support. You are all amazing people xxxxx
People dont understand at all. Their is no getting away even if you leave it is always with you . You have to ck in and think about it knowing full well what you are facing when you get back. Every day i make plans of what i whant to do but my plans are always changed it drives me crazy. This sickness sucks.
I know exactly how you feel Yvonne, nobody but the good folk on here understand what it like to care for someone with PSP. I took Ben in for a weeks respite and am so worried that they won't look after him properly.i am off to Bristol to see my sons and grandsons and should be full of joy, instead I'm constantly thinking are they feeding him correctly, are they making him comfortable, are they taking time to try to understand what he is trying to say, will they put his radio on, will they turn the TV in the evening, and on the list goes. You just can't help worrying when, in fact, you know he will be OK I'm not sure if it will be a rest, we'll see!
Kate that is how I feel worried about George, but guilty for leaving him more than anything, because I now he will be well looked after, children are all near bye, but the guilt of leaving him, the look in his eyes when I say goodbye, feel that this should be our time. Kate have a lovely time with your boys and grandchildren, Chris will be fine, big hug to you. Yvonne xxxx
Yvonne I feel for you. Good to let off steam with those of us that at least have an idea of some of your pressures. People mean well but the reality is that PSP takes over our lives even when our loved ones are in respite. We still worry, can’t sleep etc. It is not something we can just switch off from sadly.
I do believe it is good to get little breaks away from the caring role just to try and keep us sane but it is never the break others imagine it will be.
Yes, people don’t seem to understand that you long to have some time away, but. When you do all you think about is “are they ok. I need to get home” I try to remember that until you have experienced caring for a loved one, watching them deteriorate you really don’t understand how physically and emotionally draining it is. So have a rant it will make you feel better
PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms…....but, you can achieve a reasonable quality of life, even interesting despite how hard this disease is for everyone.
In few words these are my experiences on PSP disease hoping they will be useful :
My wife suffers from PSP. The first symptoms (difficulty speaking as if she had a stone in his mouth and a slight tremor in the ring finger) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).
In my opinion, as long as possible, the best place for a patient PSP is their home. This entails the need for assistants to help the main caregiver and to be able to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries with it produces a remarkable wear physical and psychic.
In principle, the limit I have set to send the patient to a nursing home is dementia or the need to apply specialized medical care.
We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.
We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ are a big help.
Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at the health of the main caregiver is and his/her medical history.
The bottom line is that jobs and occupations of the main caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.
From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.
You deserved a break Yvonne and you needed a break.
You devote your life to loving, supporting and caring for George who you have lost, along with your plans for a happy retirement together, to PSP - and to the detriment of your own health. So no, you were not "so lucky to get away" - you had a much needed, short week of "respite" with your daughter and grandsons but I've no doubt George was with you in your heart and in your thoughts night and day.
I so so so agree with you, I am fed up fighting . I'm exhausted I get 2 hours sleep a night, to be fair the hospice doctor is trying all sorts of drugs but nothing is stopping this agitation all day and night. My husband has catheter , bowel incontinance, can't feed himself or hold his feeding cup. No mobility at all, constant calling and agitation. Our caring agency enquirer if we could have pads as I have been buying them. The answer was NO because he has a catheter . The connection ?????? Then we got given a bowel chart to record all movements for 2 weeks , that was collected and the latest news today is we are unlikely to get the pads as we get attendance allowance. The connection is ???????? I'm really not perturbed about buying the pads but it's principle and I think of those who have no idea how to go about these procedures , it's the same with CHC funding ....a lottery. Some of the rules in these instances have no bearing on reality. PSP does not always fit in their little boxes. Rant over , sending hugs Yvonne
I know Yvonne, I'm so tired I'm snappy with everyone . It's awful isn't it , thank a God we can moan on here and folk understand. Try and take care xxx
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xxoxo
My heart is breaking 
