Oh my goodness I am overwhelmed with all of the lovely informative messages.
I can't thank you all enough I feel like I am part of a great big family
I can only apologise for not answering you all but I am afraid to say I am gubbed ! gutted! Broken ! sad , emotionally drained I can't do this and all of the other ailments that my sweet gorgeous amazing husband has had.
I am not handling anything at all mentally I can't deal with all of what has happened to my darling Harry ... Why ??
Our Dr is a laugh I can't put down on paper/ Email / or anywhere what my feelings are regarding his lack of anything 🙈🙈
We are no further on and I am just sad ..yes sad ! And it's not even my journey
My husband is living for me ..I don't say that in any bragging way I promise you all that I can't watch this happening my life like his is over !
This is real despair ..how did it get so bad ?
Thank you to everyone who has posted but I can honestly say I can't do it I am scared beyond everything I can't even read all of the messages
What is happening ?
My sadness is unbearable
So sorry but that's the God honest truth ..
Love to all who are suffering I feel your pain ...I do
Love to all Marion xx
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Maz777
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Marion we just have to get on and accept what is thrown at us, we all felt like you at the beginning, then the fight begins to get our loved ones the care that they need, makes you strong, it is hard, you asked ourselves why me? We always thought when we retire we will do what we want, children are grown up, helped out with the grandchildren, we had plans to build a house in the mountains in Cyprus, we had the plans, the builders, everything ready to go ahead, then George got sick and all our plans gone, I hate psp is a really horrible illness, but we had to pick ourselves up and except that there was nothing we could do about it. The journey has been hard and soul breaking but we are still here, trying to be brave for George/ dad.
Doctors are sometimes useless, but when I first went I told them to read up about PSP and gave them leaflets from the PSP society, take stuff into them and ask them to read it. Sad yes we are all very sad, I can feel your pain, but we just have to take one day at a time, get over that day and you are ready for the next. We have all lost something which we will never get back, but we have to be strong for our loved ones. Sending you a massive hug. Yvonne xxxxx
Marion you don't have to thank everyone. We are all on your side. I know that feeling of believing your husband is living for you. I felt that way too but at other times I thought he was scared to die. Who knows which is right?
Just hug him and tell him you love him. When it's all over we will still be here for you to help you see a way forward.
Mostly you will just need people who honestly understand. I think you are right and we are like a big family propping each other up! If you need to ask anything please do.
Hi, myself, brother, sisters and I'm sure mum, all feel exactly as you do. Petrified and sad beyond words.
I'm trying to take comfort from this site by reading others posts, they're all such similar stories it's truly sickening.
The worst bit for me I guess is not k owing how long we have left with dad. Do we take time of work and sit with him daily, will he battle on for months or even years. Appreciate every case is different and based on the individual. But I have to try and get a sense for how far along the road my dad is.
I think if he had the choice he would have gone that day on the operating table, but my mum wouldn't let him. Nursed him through his coma and 5 hospitals later back home. Is his sole carer and fighting the battle everyday.
Today he seemed to have uncontrollable groaning that he couldn't stop or understand what it was. Scary to see, he was so him self when we first arrived today but dropped rapidly downhill and just then wants to sleep and zombiefy.
Its so so sad to see.
Tomorrow I will call the charity and try and get some information and help. Good luck with your battle. Try and stay strong.
I think there was a typo - about there being 'a' sole carer? He sounds like he needs more than one. Can you get more support?
When you say telephone a charity do you mean PSP Assoc. - They are very good and their website has a number of really good documents explaining PSP.
If you are in England or Wales check out Continuing Health Care - Free NHS home care.
As for how long? - everyone is different. If he is only just home you might find he is still recovering from his coma - he might rally more. Time will tell. I certainly would not be thinking of giving up work if it is only to be with him at the end. That could be many many months away.
It sounds to me like you badly need a PSP medical assessment and a Care assessment as well. An OT assessment to advise on equipment and, if in the UK, to lend you what you need. Then a care plan with appropriate support coming in be it carers or community nursing.
There are many here who can give you pointers. But knowing your country makes a difference.
Hi Kevin, yes in the UK. About 5 miles away from the hq of the PSPA as it goes.
No typo, mum is being left alone to care for him. Sorry the coma was October 2016, then had 12 months recovering slowly in hospital nursed everyday by my mum and hospital staff, then into Leamington and Wellingborough rehab centres.
Eventually home as he wasn't getting any better.
I think he was diagnosed with suspected parkinsons about 10 years ago for first time. Then the op was because his back was curving so badly over. But it definitely seems to have accelerated his parkinsons, or what now appears to be PSP.
My mum is a very proud lady and will resist help.
They were also told they were means tested and had to pay for helpers to come to them day and night to help get him into bed.
I've told my mum about this site, and asked her to call the PSPA today.
I really hope she will but has already said she doesn't want to know how it's all going to pan out. She will just take it a day at a time and keep doing what they're doing.
I will screen shot your advise above and WhatsApp it to her now.
Alls we can do is keep Chipping away in the hope that she will accept some help. I think part of the problem is though we have been knocked back that many times she's almost given up asking.
If your mother is struggling - and I expect she might be I would ask for an urgent application for 'Fast Track' Continuing Health Care. That is for care support at home provided for by the NHS. If she is struggling she needs to lay on the line that it is urgent, and if appropriate she cannot keep going alone much longer. Do not hold back. I'm afraid these things have to be fought for unlike many NHS services. If it is less urgent just ask for a Continuing Health Care Assessment. Depending where you are in the country that could take many months.
This is the NHS Advocacy site for Continuing Health Care - The fact that they have had to set this up gives you an idea of it being a bit of a fight. They are an arms length service and they are very good. Their explanatory pages are essential reading.
The G.P. will also do referrals for an OT assessment and a Care Assessment too.
You will then have a body of people who can get your Dad what he needs and support you.
I would also ask the GP for a referral to a Neurologist, or does he already have one? Neurologists are probably better than a GP at managing the different symptoms to make him more comfortable.
With all this in place you will have four wheels on your wagon.
Best to you all
Kevin
PS Do keep coming back here. There are a lot of folk with good hands on experience. I learn a lot by posting questions.
Tip: he Health Unlocked website search engine is poor. If you want to search use Google and add Health Unlocked on the end of your search.
Saying that re those assessments I'm pretty sure mum has had those done, he's got a hospital bed at home and a frame to push him round on, a wheel chair etc. I think she has managed to get a physio now too though I think she may be having to pay for that herself.
But a lot of that was done when it was thought he had parkinsons.
Would they need to be revisited now giving his updated diagnosis.
As others have said I think even though he saw experts in Oxford, it's still only a suspicion. They won't say for definite. I must say the symptoms match though.
Sorry Marion, just realised this discussion is all happening on your thread. Please forgive me, Kevin perhaps we could move it over to the thread I started. Sorry seem to have hijacked Marion's discussions here. My apologies I didn't even realise.
We are all here to be your sounding board so that we can help absorb your grief. Still, as great as we are, one sometimes also needs a local counsellor, a voice in your own neighbourhood to help you through something as overwhelming as the grief we feel. I really recommend you access every possible support in your community. A counsellor may be able to help you, in real time, sort out the "facts" from the "fears". But also keep posting here and keep in touch!
Have you tried to access some practical health support services? As vih4444 said, the supports she found (in the UK) most helpful were: "The Hospice Day Service, hospice volunteer for sitting and later Hospice at Home; the Parkinson's Nurse; Occupational Therapy (for providing equipment); PSPA Helpline and local support group; this site." At the very least the community health support service in Scotland (sorry I don't know its name) will be able to tell you what you can get in the way of support now, and possibly will be able to give you some support for you!
I'm in Canada, but when I called our community health team to ask how to begin "getting on the books" even if my husband didn't need carers other than me at the moment, I was surprised (pleasantly) when the intake nurse said "And what about you? How are you doing with this right now?"
You will find that members on this site say, over and over "Ask for help!" They are so right!
PS: I see you have a profile photo Is this you? A beautiful granddaughter? A favourite pop star? How gorgeous!
Don't panic! I know everything seems bleak and you feel out of control right now BUT you will cope, we just do. There were many times while looking after Derek when I thought I couldn't go on but, although unbelievably tough, it is also a good feeling to be needed and as a carer you are definitely needed. Do you have a supportive family or good local friends who can share the responsibility and perhaps give you a break from time to time. Try ringing the PSPA helpline, they will be able to give advice on how to find help and can just be an understanding listening ear. Do try to join a support group for carers in your area.
Dear Marion, you may feel that Harry is living for you. But you are keeping him alive and will continue doing so. Of course is sad,beyond words can express. We all feel like that. What's to be done? First, it's called acceptance. There is nothing you can do about PSP, but there are things you can do to help your husband live. Is he still walking? If so get him to some exercise classes. There are some specialise ones for people who,have Parkingsons. They won't keep PSP at bay, they do, however, keep him strong, physically and mentally. Plus they are good fun. I had to help Steve do these exercises do thoroughly enjoyed them.
Second, for you! Ask for some counselling. I found this so helpful. My problem was, I was so, so angry. I went for quite a few months and finally worked through it. If caring is getting to be too tiring for you, get help NOW! I didn't,until far too late and crashed. The pain and Truma that caused Steve, was, well, I should have been locked up for it. You are the most important person in Harry's welfare. You have to make sure you are fit and well, he will suffer big time, if you are less than 100%.
Get the Hospice involved ASAP. They are there to help peope LIVE with life limiting illnesses. Steve went to a day centre, once a week. He loved it, all those pretty young nurses looking after him! I had the day off, either shopping or sleeping.
Lastly, I always say PSP affects two people, one has PSP, the other suffers the symptoms. It is an evil, evil disease and takes over everything. DONT LET IT! Put your boxing gloves on and fight it with every ounce of strength, in you body. Then, start on the medical profession and social services to get the help Harry needs. In fact, anyone that gets in your way, whilst you care for him.
The Motto is "one day at a time." Believe me, it is the only way you will be able to cope with this. Today will bring enough challanges, without worrying about tomorrow.
Yeah take each day at a time and take relief from the fact you are doing your best. Dad used to enjoy his feet being rubbed when communication became difficult. Our best decisions were. As bad as it gets, theres always someone else far worse off.
1. Getting a live in 24/7 carer + night carer (thank you NHS!)
2. Supporting main carer (in our case mom) and sometimes making decisions for her.
3. Not going down the peg route.
4. Investigate every avenue of support you can i.e. Social services, PSP forum, Hospice (again marrie curry were great). There's lots of support out there in the UK atleast.
I have never stopped to say`what if`because I couldn`t continue every day if I did that.
Like everyone else I just get up and face whatever is thrown at us. Do the best you can and some days scream, shout, swear, cry. be sad - whatever it takes to get you through, and accept what a cruel hand life has dealt your loved one.
I found it easier to accept the final diagnosis for P because I had searched fruitlessly for several years before to find other answers, in fact it was almost a relief to know that there was nothing else I could do but accept the situation and make the best of it. Not easy but inevitable.
Dear Marion, Don't forget you have to put your own oxygen mask on first!!!!!! Eat properly and sleep - and drink lot's of water. Watch out for foods and or drinks that could be bothering you, too. I can't eat onions or certain chocolates or drink wine - they make me insane😱 (My poor husband pays😬)
We are all living in a state of "in the middle of tremendous traumatic Stress syndrome". We are grieving for our losses / our very selves!! ~ we are on unfamiliar shaky ground - nothing smells the way it used to!!!!! This is a scary journey...
I want to go out and play!!!!!
Please take care of your body - buy the expensive shampoo and oh my gosh exercise even a little here and there . Squeeze as many little favors in for yourself as you can. You'll make it. Join eBay - buy a pair of $2.00 earrings - They'll come in the mail as a gift to yourself. You'll feel special as you put those nasty sheets in the washer👍🏼 I know this trip isn't funny but when you're hanging on by the fingernails, you need to resort to desperate measures to stay alive!!!!! We are all pulling with you💗
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