Is it ok to ask how long?

I hate thinking this way - is it better to have an idea of timescales or not to think about it? Articles say 'within 10 years' or 6-8 years (re CBD) but is that your experience? In general I think it's good to find out as much practical information as you can, although it's getting me down this week. I wasn't able to help dad - very confused and anxious when I visited him in the home the other night and he wasn't comforted at all by my being there but then I don't think he knows me a lot of the time. Not that it's about me obviously, poor man. Sorry to moan - this is a very supportive forum - grateful for the posts!

[dorothy-thompson]

dear plum90

I agree, I want to know how long. My husband is going into his 8th year of PSP, and it

is no life for him or anyone to have to rely on and be dependant on someone else for even your basic needs.

I care for my husband at home, with the help of carers, but hour for hour, most of it is on my shoulders and I am 73 and find it all very hard and emotional most of the time.

I want my husband to go into a nursing home, so at least you haven't got that burden, but I am sure that has it's problems for you. However following the results of the recent NHS CHF , we have been told he does not have enough points in something called domain A, basically he can stand, with a great deal of help and assistance , so therefore does not qualify.

But we can always appeal and he will be reviewed next year. The Social Workers are all very supportive, we have lots of aids, our house is rapidly becoming like a hospital but I feel trapped and sometimes do not know what to do. I wander around shopping centres to fill the time before I go home and dread what the hours before bedtime will bring.

Don't worry about moaning , let it all out, that's what this site is for, and the next person who tells me I am doing a "grand job" I will strangle them!!!

Dorothy T

[peterjones in reply to dorothy-thompson]

dorothy'' your doing a grand job mate'' sorry dorothy i could not resist it===== peter jones queensland australia psp sufferer\\ but you are really mate\\

[Hidden in reply to dorothy-thompson]

Have you tried getting him into a home that does both residential and nursing care. This is what I did for mum as it was clear she would definitely need nursing care and once they are in it doesn't take long for the home to declare it if they need nursing care. This also means they are pretty much with the same carers and the transition is easier when they move on in care needs.Mum's residential carers were brilliant and all made a point of visiting her upstairs in the nursing wing right up to the end. Some of them did shifts upstairs too. As well as this I was able to take her downstairs in the lift to sit in the residential lounge and see the other people she had grown to know and join in with some of the activities or watch. Just because mum needed the care upstairs didn't mean she didn't know what was going on around her and she loved being able to choose.xx Dianne

[Peter3 in reply to dorothy-thompson]

Dorothy, How I can empathise with you on all of your points. I too could strangle people who tell me how kind I am and what a marvellous caring person I am. The truth is, especially at bedtime I could just scream and scream.

With regard to domain A on the CHC funding, like your husband mine can take his weight through his legs, but what I emphasised was his total inability to stand on his own and the unpredictable nature of the falls he has i.e. you never know when its going to happen and whilst most times the falls are either backwards or sideways, every so often my husband will fall forwards.

The other area is that of the unpredictability of choking which can occur at any time, although it is mainly at mealtimes, again, in my husband's case, the choking has caused him to have an altered state of consciousness on more than one occasion.

Finally, if your husband was left on his own, would he remember to eat, drink and go to the loo? Does he administer his own medication. If the answer is no to these questions, you deserve to have the assessment reviewed.

I've said it before, but reading your blogs your husband sounds as though he is at about the same stage of PSP as my husband. Peter received CHF just over a month ago.

Keep trying and good luck, you certainly deserve some.

Peter3. aka Mary

[manitoba]

Dearplum90,I agree with your sentiments totally. Everyone is different and I guess it all depends on the individual. Some may find it a morbid thought but I wish I could magically find out how much time is left for my dear wife who is only 63. Obviously the disease affects everyone differently and the pace of deterioration is different from person to person. I have heard an average of 5 to 7 seven years from diagnosis and also 5 to 7 years from the onset of symptoms. I have also heard that some individuals can live with it for up to 15 years. I guess all we can do as care givers is hope for the best and provide what comfort we can. As difficult as it is I would not want to trade places

[peterjones in reply to manitoba]

hi manitoba i agree with you its up to the individual i personaly would not liker to know especially as they reckon its only 10 years to the day of reckoning and i reckon i have had it since 2004 so i would be pretty close to leaving you now which i do not intend to do for some time yet i will beat this psp might even do it by older age if i can see yer mate take care peter jones queensland australia psp sufferer

[Kazsxy]

Dorothy, you need a break ,and your husband needs long term care. Do you live in the UK?

[LesleyB]

Hi everyone. It has been some time since I have been on the forum. My dad passed away from PSP 2 years ago and we only found out he had PSP 5 months before he died although it looks like he had had it for about 7 years.

As everyone has said it all depends on the individual, but for me I wanted to know and although after reading about the condition I had a good idea where I thought he was in the timeline it was still a shock to know he had less than 12 months. That said it helped me to really think about what we could in the short time we had. I wished then and still wish now that we had known a lot sooner as I would liked to have done more with dad and for dad and been better prepared as the condition went along.

It has taken me some time to move on and although the terrible time dad had is still with me I would like to say that I think the happy memories of dad have now overtaken that terrible time. My thoughts are with you all and your loved ones as I know how difficult it is. Lesley x

[Hidden]

It doesn't matter if anyone gives you a time scale as PSP affects everyone differently and therefore there is no fixed time. On top of that we are dealing with a tough bunch of people who seem to all be born survivors and they pull through a lot of what is thrown at them! Finally, it is the infections that get them and it all depends what their particular weakness is-urine infection.chest infection etc. I learnt to loved each day as it came-on good days we had laughs and went out on bad days I did things like make mum;s nails look nice or wash her feet and massage them.

Best wiahses for you both -and it ISN'T just about him, you are suffering too!

Dianne xx

[wendal]

Dorothy are you in the uk. My mother in law was going to day care and restbite for 2 years, her last restbite resulted in a bad fall.However, we had asked the social worker on many occassions that we were struggling and this was mainly due to her mood swings.This next part may sound dreadful, when we picked her up from restbite we struggled to get her in the car and when we got home we struggled to get her in the house.We contacted rapid response and they advised us to take her to a and e which we did.They found she had a urine infection and another fracture to her pelvis the hospital made the decision that she needed to go into residential home for further restbite care.I ask myself did we do the right thing as she is still in care 15 weeks later all her syptoms of her conditions are worse have we caused this or is the illness progressing.However, we are adamant as a family that if she came home we would all struggle to care for her so we are now trying to get social services to make her permanent she is in residential care and for nursing intervention we have district nurses coming in.Our time with her as a family is better and we visit her daily we have taken her to the park to feed the ducks which she enjoyed her teenage grand daughters enjoy going to see her the home makes us all very welcome and the staff ring me if they feel there is a problem or she is upset which I like.As a minimum you need restbite care to recharge your batteries.

[wifemo in reply to wendal]

Hi Wendal -

You ask if you did the right thing as the symptons are worse - surely this is most likely to be as a result of the fall? Visiting daily will be taking its toll on you, but at least I hope you are able to get some sleep.

Best wishes

Mo

[dorothy-thompson]

Hi to all that have asked about care/nursing homes.

Yes I would like my husband to go into care, two obstacles, possible family objections and money. Here in the UK if you have savings over a certain amount, you pay the full costs of nursing care. As the fees for a good nursing home are around £50k per annum, it doesn't take long to do the maths.

Please don't get me wrong, I have always believed that if one needed to go into care and one had to sell their house to fund it, so be it. I am not a believer in general of leaving things for my kids, we gave them a good education and they are all successful in their way. But if it's nursing care that is needed, then it should be funded by the state, after all back in the day, if you were sick you went into hospital.

Daughterno1, I have never thought of going down that route, residential/ nursing home, it is an interesting point and worth pursuing, thank you.

Thank you to to all, kind regards

Dorothy T

[Hidden]

Geoff receives chc funding, this does not have anything to do with the amount of money he has saved. We are in the UK. When I read other blogs about how people are caring for their loved ones at home, I feel very inadequate and know that I just could not do it any more.

Dorothy it sounds like your husband and Geoff have had their illness for a similar amount of time, have you involved your PSP specialist nurse. The one for the north of England and Wales is Jenny Reynolds and I have found her help invaluable.

Much love San x

[Hidden]

Dear Peter and Dorothy especially and All,

Those first two messages made me laugh out loud. I know just how Dorothy feels and Peter's quick snap response seems to be just typical of his personality and sometimes we need that 'light touch' just to diffuse the stress we all have. It has often crossed my mind that this site carries the views of the two sides of the disease, ie those who have it and those who are caring for a loved one. I have seen a graph of life expectancy with this disease and it showed that although most sufferers have a life span of about ten years, in fact some people do carry on to live much longer. It was in a proper medical journal, so Peter, as long as you take care, eat well and keep that great sense of humour, I think you are in for a great chance of hanging on in there for a good while. As for us carers, we also must look after ourselves and seek the help that we need on all fronts, My warning with nursing homes is, be very, very careful and find one that actually understands and has actually heard of the disease and one with a high proportion of staff who speak English as their first language. I live in Walthamstow in East London, and it is really difficult to get Continuing Care funding. I saw a programme on TV some time a go and it said on there that one only gets this funding when you are virtually dead already. I think this is what they thought about Dad and they have had a bit of bad luck as he has survived for more than five years. I don't feel bad about it as my parents, between them have paid into the NHS for over 120 years, and my mother got nothing out of it at all except a bang on the head, some accident whilst she was in hospital for a short spell, and she died within a few weeks after this knock and bleed in her brain, as shown by the post mortem. So, 'Good on yer mate' Peter and Dorothy, I will think of you as I, too, wander somewhat aimlessly round the shops trying to come to terms with it all and think what can I do to make things better.

[peterjones in reply to Hidden]

hi nader i have just read your em well mate i can say that you have already made things better by your em \ i am, glad that you had a laugh out loud mate its good for you better than all the pills and medicine i believe anyway

i cant answer for dorothy probably thinks i'm a bit of an idiot i hope not but there for the grace of god go i \\\i read somewhere i originaly came on this site to try and =lighten people up a bit because at times it was getting quite heavy with talk about dying and choking and everything else concerned with psp i know thats what this site is all about and what its for but i thought in my weird little way i will just try\\

you win some you lose some i just hope i have not lost to many\\\ but i eat well what i can eat \\ and drink what i can drink with a few\ quite a few coughs and splutters but i get there and i am still enjoying life at present i do not waste any days because i know that there may not be many left after all i am a chicken still at 78 in feb 23 rd \\ so now you knows my birthday i will expect a greeting of some kind in em form\\\ only joking mate \\\anyway i will sign off now before my one finger typing goes on me i know that this em is a bit disjointed but never mind im sure you will understand

what im trying to say \\ all you carers and people with psp have a great day try not to worry to much just have a day free of it\\ love you all peter jones queensland australia psp sufferer but it will not beat me

[Hidden in reply to peterjones]

Dear Peter,

Well you are a chirpy, cheeky chicken and I like it! Have clocked your birthday so continue the good fight. On a different subject, do you have Welsh connections? My mother was Welsh, her maiden name was Price. She came from Porthmadog, North Wales.

[jimandsharynp]

I feel your pain. My view is PSP patients can aspirate, get pneumonia, and die at any point. They could also fall, get a serious head trauma at any point. So I don't care about the "stages" of PSP or how long til the end. We are taking one day at a time. A wise man once said "don't worry about tomorrow, each day has enough trouble of its own".

Jimbo

[teena2]

Hi Plum90,

I keep trying to leave the past and get on with the present and then I see a comment on my emails and I feel I need to join in. Yours was one of those comments that brought me back again.

I agree with all those who have said it really is up to each individual as to how much they want to know. We had always been ruthlessly honest with each other and so when Chris was diagnosed in 2008 I went on the internet to find out what we were up against. Chris gradually learnt what the future held for him and our first task in order to prepare for the future was to organise an advance directive or living will so as to ensure that his passing would be according to his wishes and not at the dictates of doctors who have not been able to ask the patient or the family what they would like to happen.Having lodged a copy of this with all relevant people we were able to get on with living. My working life was as a nurse and so maybe I had an advantage over many others because I could see certain signs which indicated to me his progress through this dreadful disease. For Chris the tell tale signs of deterioration were a steady progressive difficulty with walking, talking and breathing, with muscle stiffening virtually every where, and when it got to the chest wall and his difficulty with breathing increased at a tremendous rate I suppose I knew the end couldn't be far off. None of this helped me cope any better and I was physically and mentally drained by the end. I think that when the last chest infection started I knew that he would not survive it.

Chris was able to prepare himself emotionally for his own death, which he obviously found very difficult (and I felt I had to be strong for him so didn't dare cry or show any despair). In retrospect I feel that we both were better able to share each day at a time together and do not regret giving him all the information about the illness. I am very aware that this is not for everyone. I had made a promise to him that he would stay at home and asked him to just go into respite care every few months which was how we managed to cope.

As regards how long does it last for: I had realised that he had shown some changes in personality and some cognitive failure for at least 4-6 years prior to diagnosis and was very surprised when, on one of our visits to the neurologist, I was asked about when I personaly thought the disease had started. When I asked if he wanted me to be wise in retrospect he said yes and so I included what changes I had observed over the previous 4-6 years. I suppose I was grateful to think that those who were able to look at any prodromal symtoms were actually taking note.

My thoughts and prayers are with you. Teena2

[Hidden]

Dear Tina2,

Thank you for your message, my father's progress with this disease follows exactly the path of your husbands' I have had so many mis-diagnosis that only now,after five years has PSP been suggested. He is in the end stage and it is so painful for him to cough to attempt to clear his throat and chest after food and drink. He is now totally immobile except for his arms from the elbow joint. Because no one knew about PSP he has been on levadopa for these past five years and apart from everything else he has awful dystonia from the upper chest region. I have read that there is such a condition of ' levadopa induced dystonia' and that this is very difficult to cure. Do you know anything about this? I too would have been very grateful had I been sufficiently questioned about prodromal symptoms, sadly our neurologists did not know what to ask even and the GP was worse than useless. My Dad was constantly being injured in the home as he was so stiff and unmanageable. I remonstrated and requested for us to have a second opinion. This was refused and also in consequence, the GP would not let me have the deputyship for health. I was too interfering and persistent Fortunately my daughter stepped in but it has caused no end of hardship and heart-break for me. I go with my father to the hospital on Tuesday and I need to be as well informed as possible about this dystonia so I can try to get some relief for Dad, he moans with the pain of it Do you think that medicinal cannabis might work and would be suitable to suggest? It is called cannabidiol and has all the psychotic inducing chemicals removed. It is used for multiple sclerosis maybe it would help with the stiffness too. Again thank you for not leaving this site, it must be difficult for you. You are so right, all legal issues must be in place as soon as possible.

[Kevin_1]

Hi plum90

We asked our Neurologist - He specialises in PSP. He told us everyone is different and its hard to predict.

Ten years is a top figure I guess... from what I think I've seen.

No harm asking.

Maybe someone else has a better idea than I.

Best wishes

Kevin