There is always something to worry about!

HI Folks, I am new to this Forum. My husband has been ill for 5 years now with peculiar symptoms nobody, including doctors, could understand and, as usual, was diagnosed with possible Parkinsons. A year ago he was lucky enough to be seen in hospital for something else, but the Consultant in Charge of the ward was a Parkinson's specialist and said he unfortunately had PSP. It was a relief to me that we now had a proper diagnosis, but dreadfully sad that his downward spiral has now led to this final definition. I am finding it extremely hard, mentally and physically to deal with him at home. He is completely bedbound, has to be washed, dressed, toiletted and spoonfed either by our Carer or myself. He is very distressed, has great anxiety. He has developed more symptoms which I would like to share with you in case some of you can identify with them. On waking he is wracked with nerve pain all over his body, normal pain patches of morphine do not help. He has now lost his appetite and eats like a bird. I cook tasty evening meals which he says he would like, but only eats about 5 mouthfulls and gives up. He also has periods of hiccuping, usually after eating which lasts a few minutes. His body has completely failed him, yet his brain is very sharp and his memory better than mine. He has no problem with his eyesight either. Can anyone recognise these. I would love to hear from someone with similar problems. Love to you all Janet

26 Replies

  • Dear Janet, I recognize many, though not all, of those symptoms. The way the disease progression differs from person to person adds an extra layer of difficulty to all of this. The agitation was a problem for us for a period of a few weeks this spring. Haldol helped a lot to calm my sweetheart and let him rest. Massage was also very good - maybe that would help with the pain? Or maybe an adjustment to the timing of the morphine, so the pain doesn't get out ahead of him in the night. If he is always waking up in pain, perhaps it is because the morphine has worn off? My guy suffered a great deal because he couldn't speak readily; his mind was there most of the time but his memory was extremely variable, and being unable to communicate much was awful.

    Perhaps it is time to consider nursing home care. It is a very hard decision to make, as those who have done it have discussed here, but for some it has made the patient more comfortable while allowing the carer to behave as a spouse instead of as a nurse. And then there is the question of protecting your own health. I have lost count of the carers here who have succumbed to illness that might have been prevented or treated if the focus had been shifted a bit in time. Do look out for yourself, too, please.

    Peace, Ec

  • How are you doing matey ?

    Julie x

  • It's hard, but going back to work has helped. Thanks, Julie.

  • Well the hiccuping is one I recognise. My husband had them too. He had a good appetite but still lost a lot of weight. He also complained of pain in his legs and feet. I used to massage them. However in the end he ended up in a Care Home and was bedbound. We were waiting for funding to be approved for a Nursing Home. We got it just before he ended up in hospital with aspiration pneumonia.

    As EC said because it affects people differently not everyone has all the same symptoms.

    Take care of yourself. Have you got a decent GP? Or better still Neurologist?

    Marie x

  • Hello Janet. everything is familiar except hiccups. My dad's eyesight isnt impacted too I guess, but he isn't moving around too much for us to see if there is any subtle problem. Peace !

  • Janet have been thinking of you and your husband. Has he had a recent swallow test? The reason he is not eating maybe because he is losing/has lost his swallow. Get in touch with your local speech and language therapy team...otherwise known as SALT team. Ask for one asap!

    This happened to my husband but towards the end of his life! So I am very worried about you both. It doesn't seem he is getting very good medical care and exactly the same thing happened to my husband! Fight the system..if you have any energy left!

    Much love and a big hug to you.

    Marie x

  • Hi everyone who has offered good advice to me and hubby. He actually has had a speech therapist to test his swallow etc. and all was OK. He is not hiccupping all the time or every day. It just comes spasmodically. As regards his pain. Doctors say it is nerve pain and he has morphine patches which you have to leave on for a week. He also has a slight curvature in his spine since childhood and this probably also causes discomfort, also he has arthritis in his spine. Doctors don't seem to be able to help him with this. He is very stubborn, and when his Consultant appointment is due he won't go and I have to cancel them. It is a monumental task to get him now out of bed and in a wheelchair to be transported to hospital. The last visit costed us £100 to hire help. It takes 3 people to lift his dead weight. He should be looked after in a nursing home, but he says he would rather die first, so it isn't an option. I just don't know what the future holds for us. The Hospice people have been visiting quite regularly, offering counselling,physio, massage and good support. I thank God that these people exist who are so caring. Thank you all for your support. Janet

  • Appendorf, I wonder if it is time to try the CHC route (see numerous posts on this site!). If you were able to get it, you would be entitled to more care at home and respite breaks. The hospice could advise you about that or your Parkinson's Nurse if you have a good one.

    It also sounds as if you could do with more equipment to help you such as a hoist for transfers. You could ask for an assessment by the occupational therapist saying that you're not able to manage as things are.

    I am interested that you say your husband has curvature of the spine. My husband also had a scoliosis from childhood. I often wondered if there was some compression at the top of the spinal chord which could have caused some of the PSP problems - probably just coincidence though.


  • Thanks Vicki - I should apply for CHC, although I have read that it is quite a business, and not everyone gets it, but it's worth a try! I see what you mean about the Scoliosis. I am sure thats where a lot of his pain comes when he always lying on his back.

    Regards Janet

  • Yes there are a few hoops to jump through to get the CHC but it's certainly worth starting the process. It will be very helpful when you get it.

    Sorry about the dreadful spelling in previous reply. I hate the autocorrect and really should learn to correct it!


  • Thanks again Vicki - I think I will start the procedure with CHC after this Bank Holiday, after all we have nothing to lose. Can't see any major spelling mistakes - take care Janet.

  • Hi Janet

    It's so rough is this stupid illness

    Take the advice and definitely get in for CHC

    Get all the help you can get the community matron o/t salts again and your dr to refer to them all

    I don't know if it's the same where you live but we are up north and and our home basicallyest is kitted out with everything's. We ring Drs and the have to ring or call same day but matron comes every two weeks hospital appointments he gets transport opticians come for home visits also podiatrist.

    bGet yourself in for whatever you can Janet and all the best.

    My other half comes home tomorrow after 11 weeks in hospital so it's going to be like an ever open door for a while

    Sue x

  • Thanks Sue. We have investigated all the avenues, my husband having been ill fr 5 years.

    The Matron is absolutely useless, and our Doctors (4 in practice) can't even be bothered to visit, although we are only a 6 minute walk away. They just telephone back. we have had help from most of the agencies you have mentioned. I just wished I had help from 2 strong people to get him out of bed and into his wheelchair when he has to see the Consultant every few months, he won't use a hoist - and anyway it would take up so much room, which is in short supply around his bed at the moment. I just have to cancel the appointments - hopeless isn't it. I am full of praise for St. Christopher's Hospice (near us in Kent) who have given us plenty of support and send a lovely lady volunteer who sits with my husband so I can have some more 'me' time. My husband is a stubborn devil, and he hates the loss of his independence. So have they all, I suspect! Love to you both, Janet.

  • Hi Janet

    I've got a great medical team here that have helped enormously

    At the Drs they have 2% of people that are on priority list saying then must be dealt with asap . It's a shame in different parts of uk things are not the same

    Take care

    Sue xx

  • Janet

    You get an Ambulance to take him!! They are very helpful but having said that they were very reluctant to lift my husband. It seems everyone has been told they must not lift! Mad isn't it? They should be trained to do it as family carers certainly aren't?

    Have you no carers who take him to the bathroom or take him downstairs? If you could get him downstairs and sitting in a chair it sounds as though it is doable. Is that a real word?! Anyway in the end my husband went to hospital on a stretcher. He was moved by the Ambulance crew using a slide which they will have if they know the situation.

    I think you need to have a tough talk with your husband. Tell him you will be unable to look after him if he doesn't co-operate! It might make him see sense? Plus apply for CHC now!

    We had rubbish doctors too but the Community Matron was good. She was the second one though as the first one reduced us both to tears so I threw her out! 😊.

    You should not have to move your husband alone. You will really hurt yourself.

    Marie x

  • Thanks Marie, it really does take 2 men to get him sitting up and slide him into his chair. He absolutely hates going to hosp.and sitting in his chair for hours, as he is out of his comfort zone. He tries my patience to the limit, and I have really cracked up the last few days, plenty of tears and knowing I can't go on with this. He feels nausea most of the time, and is now not eating enough to fill a bird. I am constantly throwing food away. He has constant headaches and neck pain (which I constantly massage) I am on his case all day massaging feet, head and neck etc. He can still swallow, but is hiccupping a lot. He won't take hardly any of his pain medicine , or anti-sickness tabs as he says they all have some bad affect on him. Perhaps that's why the doctors don't waste time coming round any more.

    I think I will apply for CHS, not for home help, but I've read here that they give more respite breaks to the Carers. Do they pay a decent amount, better than the Local Councils where you have to fight for 1 week a year! He won't go into a home so we have to have live-in care, which we can pay towards ourselves. Bye for now, Janet x

  • Janet

    I hate to say this but regardless of what your husband wants perhaps he should be in a Nursing Home? I really don't know how you are coping. If you are not careful you will be ill and what will happen then?

    Apply for CHC tomorrow!! Also contact your doctor and say you are not coping! Tell the doctor you need to see him/her and firstly they need to see your husband.

    Put the fear of God into the lot of them and tell them you will have to go to the press with your story if you don't get help! You don't actually have to do it but they are not to know? Tell them that if they refuse to visit your husband or to see you.

    If you are not taking notes start to do it as you won't remember everything.

    Where do you live as a matter of interest? I am so angry for you! You have to tell yourself that this can't continue.

    We are all here for you remember and we will support you.

    A great big hug to you too. I think you really need it.

    Marie x

  • Thanks Marie, I am just recovering from a nervous breakdown and am feeling shaky today.

    I am also dreading my upcoming new knee surgery in 3 weeks, and who is going to look after him, because I wont be able to run around on possible crutches. It takes about 5-6 weeks to get properly mobile again. I am phoning my Hospital today to see if they can arrange for me to go into a rehabilitation centre for a couple of weeks to help me get fit again, but I will get help I promise and stop suffering in silence. I will keep you posted. Love JANET.

  • Janet I am glad you are going to get help. You are not superhuman. You are doing so much for your husband but he is really making things worse. He might not realise that but it's the reality?

    Have you got a Social Worker? You can have an assessment of your needs done too you know? Sounds to me that you are probably paying through the council for the care your husband receives? We had to do that too until we got CHC but it was too late by then.

    You have health problems of your own and you really must tell the stupid doctors how bad things are. Cry all over them if need be. Anything to get you the help you need!

    Marie x

  • Hi Marie,

    We do have a care manager through Social Services, who is coming round to see us to fill out the CHC Assessment papers, and I will tell her then that I am really struggling. Also, the Hospice Doctor is coming round to see Bernie and sort out his medication. They are used to dealing with this type of illness and more competent than our local GPs seem to be. I am feeling quite hopeful there will be some change. God Bless - Janet.

  • Janet glad to hear that. You are right about GP's. I don't expect them to know everything...but..! Good luck with the Hospice doctor. I agree they are more switched on and good you have someone coming to visit. Fingers crossed for you. Howl all over the doctor if need be! You are very vulnerable yourself so someone needs to listen to you.

    Marie x

  • Thanks Marie, I am quite a strong person - although very distressed at the moment - but I'm not backward in getting as much help from the Doctor as I can and can't wait to see her on Monday. Can you tell me what is the difference between a Care Home and a Nursing Home. I thought they were the same thing?

    Also, do you know the answer for Agitation , which is very bad with Bernie and I wondered if there are good medications to calm it down. I will ask the Doc on Monday - Luv Janet.

  • Janet

    The difference between the 2 type of home is a Nursing Home will give Nursing Care as well as general care. A Care Home won't do that. They will give medication and generally take care of the person but that's it. I discovered this to my cost when I told the people in the Care Home my husband was in that he needed help when eating. They told me he was playing up because I was there! We had been married a long time and the last thing he was was a person who played up! They refused to feed him, they told me he managed when I wasn't there.

    When we went to see the Neurologist in January he said he was at high risk of choking and needed help when eating. I told the manager at the Care Home and she threw her arms up and said: " this is ridiculous. That is a Nursing Home requirement". Total nonsense as I fed him and other carers feed their loved ones all the time. I know others were fed but they didn't have enough staff and that is the reality.

    We were looking at Nursing Homes at the time as we had just been granted CHC funding. However it wasn't to be. He aspirated and ended up in hospital. I can't ask what happened that last night at the home as I am so worried he didn't ring the bell for help. He told me he never bothered them and when I asked why he just shrugged and said he didn't. It makes me wonder if they told him off for using the bell? I fed him his last meal before this happened and he was alright eating it. However they kept lowering him down at night and if that happened then it might account for him vomiting. It haunts me. As does the care or lack of it in hospital.

    So you need a Nursing Home that I am sure of. Before using one look up their rating by the CQC on the internet. It will tell you what the place is really like.

    My husband didn't suffer from agitation he was very quiet and passive. So I can't help with that. I am sure there is medication for it as others have this problem. If you have a look at some of the posts or send a seperate post you will get an answer from people who are in the same position. Good luck for tomorrow.

    Marie x

  • Hi Marie, thanks for your comments. My husband over the last 4 years has been 4 times in a local care home - month each time. I know that their care is pretty basic. I couldn't put him in an NHS home. I looked at two recommended and they were ghastly. I wouldn't put a dog in there. So, unfortunately, had to choose much better ones which cost £1,000 per week, but the care was so much better and they didn't mind feeding him and the comfort was better. But it is a dreadful amount to have to pay.

    Alas, you get what you pay for. We couldn't now afford to do it. Does CHC pay more per week than the NHS, which, this area, it is £470 pw or I think £630 for nursing care, but they don't give it lightly.

    You are lucky that your husband didn't suffer from this chronic agitation, I was hoping someone would read this reply and perhaps mention some good medication for it.

    The Doctor has not turned up at the moment, but I will chase her up! Chin up! Janet.

  • Janet how are things? Have you seen the doctor? As you say it is a terrible amount to have to pay for not great care. CHC in our area offered over £800. Can't remember the exact amount. However that is not enough for a good care home now. One we found was £1400 per week! CHC wouldn't pay it! Told me to pay it myself. Neither can you pay top up on CHC funding. How stupid is that?

    Anyway 2 days before my husband died the stupid doctor in hospital came in to tell me he could go to the Nursing Home I wanted him to go to!! I haven't complained yet but I will. He actually asked me was I not happy?! I told him if he had said that a couple of weeks before I would have been but not now. This is the man who took my husband off all medication and fluids. I swing from outrage to despair everytime I think of this.

    Take care of yourself Janet. I hope things are alright with you.

    Marie x

  • Thanks Marie - nothing to report as yet. Thanks for the info on care home charges, keep well! Janet.

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