how do you categorize the stages of PSP? my father is on a tube feeding already. very much bed-ridden...

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[PSPA_JillL]

PSP/CBD are very individual illnesses and in the UK often not classified by stage as it varies so much from person to person, if you look on the American sites they describe different stages. I am sorry to hear your father's condition has progressed.

[judy1962]

Hi, I am in America and I have seen these types of staging. My husband who has had the disease since 2004 but only had mild cognitive and balance problems to begin with has progressed to being fitted for feeding tube this month, he has no balance, he is very cognitively deficient, he is dual incontinent, he has difficulty breathing at times and gasps for air, he has hallucinations and wants to sleep most of the time, but I keep him going. When is hospice a support tool to be able to use? Has anyone had any luck with hospice. My husband is yound and strong but he has deteriorated immensely in the past few months. I wish we had more guidence with this disease.

[jimandsharynp in reply to judy1962]

We are in Florida and on hospice. Not because of the level of disability or nearness of death (hopefully) but because Hospice says we qualify. They send the nurse once a week to check vital signs. The hospice pharmacy supplies some of the modifications for free. The Hospice chaplain comes once a month. They delivered a Hoyer lift at no charge. We don't need it now but they are planning ahead. You don't have to be dying to get their help. They don't submit individual bills for service to Medicare. Medicare gives Hospice a flat amount monthly for ALL services they provide. You can still use Medicare for other health things. We wanted to get in Hospice before the "end". With the new health care who knows what changes are ahead. My feelings are once you are in most changes wont affect you. Our neurologist agreed we were a Hospice candidate to get us in. Go for it!

Jimbo

[PSPA_JillL]

Hi Judy,

I know the hospice system is slightly different here in the UK than in America, so cant comment on there. Here I would thoroughly recommend anyone with PSP/CBD to take up the support offered by their local hospice. They are fantastic. I know of many people with PSP who have accessed their services and have been very well supported. Different hospices offer different things so find your local hospice and see what is available. You may be able to refer yourself or may need Health care professional to refer you. They may offer psychological support, day care, family support, sympton control,respite, complimentary therapies, counselling, carer support, advanced care planning.

Judy talk to your husbands health care team and ask if referall would be appropriate.

[judy1962 in reply to PSPA_JillL]

Hi Jill, I have spoken to his Neurologist, but in the US the guidelines which are used for hospice for PSP are the same as those which are used for Alzheimers disease. The patient has to become very incoherent mentally before they can go into hospice. With PSP we know that the body fails first and when the mind finally fails it is too late for hospice because the patient only has perhaps days to live when the mind finally fails. Because of this most PSP patients as well as CBD and MSA patients never get to take advantage of hospice which could be so helpful to these patients. Usually these patients are offered hospice on the day that they die. We need to create greater awareness so that these patients can get the support that they need. I am not sure how to go about this but I do continue to educate my husband's physician and to try to advocate for him. The US seems to be behind the United Kingdom in this area. These patients deserve to die with dignity just as much as the cancer patients and others who are able to benefit from the program.

[jimandsharynp in reply to judy1962]

Judy, that wasn't true in our case here in Florida. We got Hospice on our neurologist recommendation. Cognition was not the major fact ctor. Speech degraded, swallowing, mobility, and all the PSP symptoms qualified my wife. We are doing well wife can speak, swallow (not a major problem yet), take only a few steps with assistance, some incontenenace, constipation, etc. still she qualifies for Hospice. If Hospice says she no longer qualifies she can still get back on Hospice later. You can go in and out of Hospice care. Hospice comes out, does an evaluation, your neurologist send Hospice a qualifying email/fax and you are in. I'd check to see who says you don't qualify, neurologist or Hospice.

Jimbo

[Julie-Alabaster]

Hi, my dad sadly lost the battle to PSP in January. As already said their are no categorises of the illness it varies from person to person. My dad from diagnosise was fairly good for 4 years still eating and walking but assited he could not walk on his own. The following 2 years were not so good. We had terrible hospital experiences which I think contributed alot to the progression. We had a live in carer which was nicer for us as he was still living with my mum and we could see the treatment he was getting. Sadly in my dads case he progressed to be very ill quite quickly from being able to tkae him out last summer even late in September and see that he was still having some quality of life then two months later in October contracted pneumonia, got over that but then went into a hospise just for respite, who then messed up his medication which made him very ill and then contracted pneumonia again in the hospise, was transferred to a hospital and beginning of January very sadly passed away. It is only now that I recognise how ill he was as if we got any reaction from him we were like great his OK. I dont know of anything that we could have done anymore to slow the progession down it's an individual thing. All I can say is make the most of the person and do as much as you can to make them comfortable and feel they are still useful. My dad found childish like humour very funny and loved being cuddled It seems mental stimulation is a big factor in helping the person. We used to take my dad swimming and he loved that - that was last summer and he could splash around and feel like he was doing something for himself. Its hard work but to see him having fun and moving freely was great (get a life vest though!!) best wishes to you

[judy1962 in reply to Julie-Alabaster]

Julie thank you for your message. I see my husband so much in your words. He loves to swim becasue he can, he loves childish humor and he also love cuddles. I dread the day that he gets pneumonia but I know that it is coming just as I have seen all the other things come. He chokes all the time and I am just praying that he is choking everything up, and the food and liquid is not entering his lungs. God bless you and I am sorry that you had to go thru this.

Judy

[Louise-Alabaster in reply to judy1962]

Hi Judy - if he does get pneumonia thats not necessarily the end! Dad got it and got over it - the second bout of pneumonia he couldnt fight but we found that dad kept fighting for as long as HE wanted to - I really believe he gave up fighting when he just wasnt strong enough any more - keep showing him lots of love and giving him a reason and he'll keep fighting xx

[judy1962 in reply to Louise-Alabaster]

Thank you Louise you have been so helpful with information and what to expect. Dave is very strong so he may be able to fight for a very long time. He just does not have the quality of life anymore. My daughter is very happy that I am caring for Dave but she also has on occasion told me that we never do anything anymore and that I am too focused on Daddy. I would like to have a life with her, but taking care of Dave consumes me. Did you ever feel left out and what else did you feel during your dads illness. My daughter is only nieteen and I am so concerned about her.

Love Judy

[Louise-Alabaster in reply to judy1962]

I think sadly we neglected mum a bit - mum cared for dad but when we went round we paid dad all the attention and not mum - this wasnt intentional of course but I think mum felt a bit left out sometimes. We kept weekends free to take them out and dad got all the fuss made over him. Since he has passed we have realised that and mum now gets all the love! But she was fine. In all honesty I dont think you can appreciate how much care they need unless you are there 24 hours a day, and your daughter probably doesnt realise how much of your time it takes. You know the weirdest thing after dad had gone was not that he had died, but that the whole rollercoaster stopped. We were no longer chasing nurses, social services, ringing hospitals daily, waiting for the phone to ring, doing the hospital visits rota, it was just a constant thing in our lives that was always there, and until it stopped I dont think we realised how much of our lives it took up. Do you not do things all 3 of you together? I have a brother and a sister so we did take it in turns, and at christmas for example, I would take mum shopping and one of them took dad, but apart from that it was all of us together. Sadly you cant really leave them, if you explain that to her and that you will have to do things as a 3 unit for a while. Its so hard to know what to do - maybe get her to read some blogs so she can see how difficult it can be. Or maybe invite her round for a 'girls' night once a week - Dave goes to bed and you get a DVD and takeaway together - that way you just be 'mum' for a few hours and not a carer - might help you too? I think thats what mum found hardest - I remember her saying to me one day (although she VERY rarely complained) she was no longer his wife but just his carer, and she said it with such sadness it was heartbreaking but it was true. As much as we miss him every second of every day we have all got a bit of our lives back. If only I had won the lottery I could have looked after him myself! You are doing a fantastic job, please dont feel bad about your daughter - she will understand xxx

[Louise-Alabaster in reply to Louise-Alabaster]

Sorry - rambling on as usual - I didnt answer how I felt about dads illness - ALL the time I thought 'why him?' he was such a good man - I used to think why not rapists and murderers? Why him? Felt angry and sad alot - still do. But sometimes on good days he used to make us laugh and I never regret anything we did for him. I miss my dad so much but at least I know he is free now xx

[KimmieF]

Hi, My dad has Psp and its very hard to watch them go from walking to not walking etc.Its frustrating and heartbreaking.I think you have to have his Dr.tell Hospice when he has 6mnths to live, then hospice will come, I think.Red tape.If you have any advice Id really appreciate it.We will pray for you and he.Please pray for us too.Keep posting and hang in there.One day at a time.