New on here as at this evening ... desperate and frantic sums up my feelings regarding my husband's situation

My husband is in hospital since 4 weeks and I am desperate to get him discharged to a suitable care home appropriate to his needs. Up to my neck with social services and the Parkinson's Nurse and going to all consultants plus GP involved with my husband since July 2015 when he was formally diagnosed with MSA before a revised diagnosis of PSP in January of this year. I feel that the assessment made by the hospital social services case manager and the Parkinson's Nurse is incorrect as each care home that has assessed my husband says they cannot meet his needs. Meanwhile my husband is deteriorating on a daily basis on a ward surrounded with severely disturbed and critically ill people. Nobody understands the illness and I have to suggest that blood and urine tests are needed as I think he has an infection due to his quick decline in cognition, confusion, hallucinations and affected walking which he can now barely do unaided. I have requested a meeting with the social services care manager and Parkinson's Nurse to get them to change their assessment and to try and get the funding increased. Has anyone else been in this situation and if so did they ever resolve and get the care needed? Does anyone live in the Kent area and have knowledge of care homes who can provide the needs for an MSA sufferer? Are there any MSA sufferers in Kent at all? Many thanks to anyone who can help, most grateful.

17 Replies

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  • Oh, I am so sorry. Your situation sound awful. I hope someone over there sees your post and offers something useful, but meanwhile I want you to know you're not entirely alone. I'm sending from the wrong side of the Atlantic all the best wishes I have. Hang on. Love, Easterncedar

  • Thank you for your response and kindness. We heard yesterday that Don has been accepted by a care home, he moves in on Monday afternoon.

  • I soooo feel for you Cp612 . I have no answers except to keep fighting! I had same scenario in our hospital in Hamilton NZ and could do little. My man was diagnosed with CBD while in hospital, and then was only because I insisted a neurologist be called as I did not feel Parkinson's was all that was wrong. Did not explain the dramatic deterioration!. My love deteriorated before my eyes just like your loved one!

    I regret I did not insist on Hospice care. Dr would not consider as was fixated on disgnosis of Parkinsons. Said he had 6 months to live. He did not!!

    Push the facts of his deterioration and see if you can get somewhere. I pushed behind the Dr's back too! Try the neurologist.

    I agree that with that amount of deterioration, he should be given some gentle end of life care in somewhere like a Hospice environment! You may not get chance to get him home, with all care necessities that will need to be in place.

    It is a horrid battle! I know it so well! You have right on your side. Therefore fight to get what he needs. You are doing all the right things! Check him for anything you think is new and unusual. Perhaps read my posts. They may help you in regard to what happened to me!

    I so wish I had managed to get Hospice! Their care is so great and understanding! And the Resthome we got was hopeless, apart from the Dr who was an angel! Understanding and caring!

    You need to think of yourself too! Try and get someone else to spell you at your husbands bedside. And get some counselling if you can. Or rant on here! I will listen!

    Am thinking of you!

    Big hug!! Jen xxxx

  • I have recently been through the same as you, my partner was in local Hospice for 8 weeks with fantastic care day and night, they arranged all the necessary assessments and with my help we managed to find him a place in a Nursing home not too far from our home, with full CHC funding for 24 /7 care, it is part of the Barchester Homes which I understand are all over the country, the care there is second to none, he has been there three weeks and has settled in well, they are doing their best to involve him in all activities and I can already see a glimmer of his old self coming back, he has one to one day and night as he still thinks he can walk and with their fantastic care he now manages to walk with aid to the restaurant for most of his meals, I did go through a horrid feeling of thinking I had let him down by not continuing care at home but last night when driving home after visiting I had to admit that he is getting better care there than I could possibly give so I am sure we have done the right thing for him

  • Well Done!

    Lots of love

    Heady

  • Sounds like you definitely did the right thing. There is no place like home, but if you can't give the proper care at home you need to find somewhere they can be cared for. Too many people think if their loved one is not at home then they have failed because they aren't taking care of them. So untrue. That's part of the care, making those decisions for the proper level of care.

  • Thank you for your response and reassurance. How long has your partner been diagnosed? Don is already under the hospice, he has done day care for many months. They will be there for him when his time comes. I work full-time, our son is 16 and we have 5 flights of stairs that Don kept falling backwards down - he split his eye ball on one fall and Had to have an emergency op, he is now blind in that eye (on top of alll the other horrid symptoms). We could not cope with Don despite a care package at home .... he had lost his wherewithal and sense of safety - a care home is what he needs otherwise being alone all day this house would have killed him. Did the hospice help with CHC funding application? At what stage if PSP did you apply?

  • My partner was only diagnosed 18 months ago but on reflection he was suffering for two years before but being the fighter he is he managed to cover up the falls with various excuses, we managed at home for the first twelve months but things took a rapid turn for the worse when he got a second water infection, he fell three times during the night and the third time I could not get him up so had to call rapid response, they immediately admitted into hospital where he spent a week trying to clear the infection. They discharged him but like yourself our house has very steep stairs and I knew that it would be too dangerous for him so I booked a months respite in a ground floor room in a local care home, he actually fell 15 times in one night whilst in the care home and in the first week, he was black and blue from head to foot, and they got the Hospice nurse out who admitted him straight away into the Hospice where we had one to one care for eight weeks, they arranged everything, assessments, Chc funding, arranged all the meetings for us whilst he was there. During the meeting concerning the funding which was held at the Hospice all sorts of things were being discussed behind my partners back, I rather lost my temper with them and explained that I did not think it was right to discuss his future without him having a say in it, totally forgetting that although he understands everything I am the only person who can tell what he is saying, so I marched out of the meeting and brought him into the room, when they saw how difficult it was for us both to actually get from wheelchair to normal chair and for me to interpret his answers to them I think they just ticked severe in all the boxes. The Hospice would not discharge him until the Nursing Home could guarantee 24/7 care and that is what he has got at Barchester House Nursing Homes, he is never left alone day or night, he is still able to walk with assistance and they are encouraging this, letting him do as much as possible for himself but always there to assist, he plays dominoes and watches TV and joins in with lots of activities, yesterday they brought pets into the home and every day there is something different to look forward to, I am really impressed with the stimulation he is getting, and I can visit anytime I want even have meals with him and now it is pleasant time together not the constant struggle it was to keep him safe from harm,

  • Thank you for your reply, kind words and encouragement. We heard yesterday that he has been accepted into a care home, going in on Monday, what a relief. Yes the hospice is already engaged, Don has been doing daycare for several months - they will b there for him when he needs and hopefully he'll never need to go into hospital again! X

  • SPELL OUT PSP and all it's symptoms to anyone that is caring for him, or in your case refusing to care for him. it's frustrating that in 2016 people cannot or will not research an illness that is right infront of your face. I was told it is VERY rare, I call bullshit on that.

    We too are bringing my mother in law into a home on Monday, I have briefed the driector of the home and am bringing full literature of the disease to all the nursing staff so they kow as well, better to be safe than sorry

    I hope today is a better day, we are all here for you

  • fight fight fight...dare I say Bitch! You are your husband's greatest advocate and obviously no one else is going to get him the care he needs. And yes to some degree, (yours is pretty high degree) we have all been through this ..l.not getting what our loved ones need....I'm in the US so I cannot help you anymore than to say GET IN PEOPLES FACES...TELL THEM THE NEEDS OF A PSP PATIENT and DON'T STOP! a urinalysis is just one thing that they should be looking at not hard for anyone to do.....can you make a decision to transfer him to another hospital....well God speed to you , honey and good luck.

    AVB

  • Hello Cp612,

    I suspect we spoke last night and I hope the PSPA has managed to contact you.

    I looked up the nearest support group to you and from my records this would appear to be in Wadhurst, about 60 miles from your location. I’m not sure how much specific information I can give out on an open forum but if you contact me by email (jerrum135@gmail.com) I will forward the contact details. It may be there is one in a more convenient location, as there could be a new start-up and the PSPA will doubtless advise you if that is the case.

    I hope you soon get the help you so desperately need, if you read Georgepa’s post, and others it’s clearly never going to be easy.

    Kindest regards,

    Jerry.

  • We have an excellent support group in Sevenoaks - is that nearer to you than Wadhurst?

  • Hello Jerry thank you for your help the other evening, yes Carol of PSP contacted me. However, yesterday Don got accepted into a care home, what a relief, he moves on Monday coming. I have not visited the home, I was desperate to get him out of hospital in the first instance. Many thanks again

  • That’s good news and best wishes for tomorrow’s move. Jerry.

  • YES CP162 is the answer!

    I live in Kent (my husband with PSP died last month) but we, eventually, got CHC funding and found a wonderful nursing home near here, where the staff understood the condition and had previously had a patient with PSP. I cannot recommend them highly enough.

    Please send me a private message and I can give you details and/or meet up if you would like to discuss.

    Vicki x

  • Sorry for your loss Vicki and thanks for responding. Yesterday we heard he had been accepted into a care home but it is a 30 minute drive but I was desperate to get him out of hospital. He moves in on Monday afternoon. I am apprehensive as I have not visited the home - it is a dementia home so not sure whst it will be like 😞 Will find out soon enough. I would appreciate the details yes please, whereabouts are you in Kent?