Is there something else we should be doing?

I haven't posted for a while as I have been really struggling with the decision to put my mum in a home. My dad wasn't coping and she was awarded continuing care. When I enquired, the continuing care health fund could only offer a visit 4 times a day and 2 nights which was not enough care for me to be able to have her home with me as I work, have 2 children and another due in April.

My dad has found a truly lovely home for her and she has been there since mid Dec. Obviously, although the care she has is excellent and the people there are very caring, I still arrive to visit to find her mouth really dry, or she needs changing I thought I may start to feel better about it as time went on but I don't. I dread visiting her as I don't like leaving her there and if I miss a day of visiting, I feel such guilt. Basically, I am driving myself crazy.

Since she has been there, she has not been out of bed once. We did request that they take her out and try to put her in a recliner in the lounge so that she has a change of scenery, but they felt it was too risky as she cannot support herself and flops to the side. Her muscles are wasting away and now one leg is pulled up to her chest constantly. If we try to straighten it, she looks like she is in pain.

They have suggested nil per mouth because her swallowing is so bad but when we visit, we take her soup or thickened drinks and swab her mouth with water as the oral care they give leaves this dry residue on her lips etc. She is PEG fed.

She cannot communicate at all by speaking and even when we ask her to blink or raise an arm to indicate yes or no to questions, she cannot always respond, although this is hit and miss and sometimes we get excellent responses from her.

So, she is bedridden, can't communicate and can't really eat or drink which is probably as bad as it can get.

What I am wondering is, is this inevitable? If we insisted that she be taken out of bed (perhaps if we bought one of those wheelchairs that have neck support) would she build a little strength and be less rigid. Do all people with PSP end up bedridden and curled up? Is there anything we could be doing to improve her quality of life? Or would she just find it traumatic to be taken out of bed? Does she get bored lying there or does the brain protect itself and she perhaps doesn't feel it like we would. Mostly, she seems comfortable I have to say and not in pain, but it is so hard when we have no idea what she is thinking or feeling.

Can anyone with any experiences of the end stages of PSP give me any advice, ideas or reassurance?

Cate

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  • Dear Cate,

    My feeling, based on my experience with Derek, is they don't like being moved. Last time he was in respite they were hoisting him into a tilt n space wheelchair with head support every day but he looked very distressed in the wheelchair so I asked them to stop. He doesn't seem to worry about being in bed 24 hrs a day and like your mum he seems comfortable and not in pain.

    Our local hospice is now onboard due to a CVA last week and have prescribed a syringe driver to deliver meds to stop his limbs contracting as he is no longer able to take Baclofen, even in liquid form. This should enable the carers to move him without causing too much trauma. This might be an option for your mum or maybe administered through the PEG.

    He was recently turned down for CHC on the grounds that his condition was not unstable, not unpredictable, need I go on!

    Best wishes,

    Jan x

  • I am saddened by this and feel sorry for everyone involved. In the end you also have to think of your own health too. I would still urge you or other relatives to visit most days if possible because every moment is precious and you will realise this when they are gone. Basically she needs to be moved every couple of hours to avoid bed sores. And a small radio, tuned to a bbc talk radio station and left quietly on in the background, might give her brain some mental stimulation when alone. I think if she was in pain you would usually notice it in a facial expression or she will make a slight noise. So yes if you move her rigid and contracting leg and she looks like she is in pain then she probably is. I never really noticed a contracting leg with my mum. My mum had a bent and rigid arm and the only thing that reduced the rigidity and made it more pliable was rubbing in topical ibuprofen gel. If your mum has a peg you can try some ibuprofen or paracetemol and wait 15 minutes and then see if the leg is more pliable. Also try massaging the leg muscles to see if this helps too? If not then maybe muscle relaxants may help? You mentioned a wheelchair with neck support, and I think this would be very helpful if the head falls back alot. I bought a cheap Miami Cervical Collar off the net in the end and while it certainly straightened up the neck and the posture of the jaw, it restricted the movement of the jaw, so I was concerned my mum might struggle to breath with it on. I felt maybe a soft neck collar which does not restrict jaw movement may have been better, because alot of people with PSP probably breath through the mouth alot in the end. So yes I see no harm in using a wheelchair(with neck support) to move her around occassionally if she is not in pain and if she is in pain then a small amount of painkiller may help.

  • I just noticed Jay29 post. Very good advice too. Basically if your mum is very distressed when moved then maybe best to not move the her too much, and if she is very rigid and stiff then it may not be the best thing. You will have to use your own judgement based on where your mum is in this illness, but as I said you can usually tell from facial expressions whether someone is in distress.

  • Also I suggested in my post giving some painkiller with the peg. Actually I have no experience with a peg so do not know if this is possible or how a peg works. So basically ignore this advice!

  • Hello Cate,

    Mum died in a nursing home back in August, she did not have a peg so virtually starved which was awful to watch as pureed food and thickened fluids eventually were not tolerated, but it seemed a natural progression of the illness if you know what I mean. The last 3 days of life she took virtually nothing.

    The staff in the nursing home insisted on getting her out of bed and into her recliner which we had made for her and left her in the lounge for long periods. To the extent that I had to ask for her to be left in bed sometimes. So difficult to know what is best but I felt that Mum was too weak to be got up. She died a few days after that decision, so I left it a bit late I think.

    The staff in your Mum's case are obviously worried about her falling out of the recliner, but in my experience if the chair is reclined sufficiently there is no risk of falling out, a change of scenery may be welcomed. However if it is too much of a battle getting her into the chair maybe it is best to leave her in bed. It's so difficult to know what is best, isn't it?

    Mum's mouth was always coated and dirty and this was a source of distress to me, and I'm sure to her, however I took some satisfaction in trying to freshen her mouth by using oral hygiene swabs on the outside of her teeth and in her cheeks as she inevitably bit down on the stick if it was put inside her mouth, but I also used inter-dental brushes to clean between her teeth using a tiny amount of toothpaste and a little water that she seemed to cope with.

    Mum's last couple of days therefore were in bed, where I massaged her very dry skin on her arms and legs very gently with lotion, it seemed to warm and moisturise her skin. Her breathing became very bad and she choked weakly on her saliva a lot but still she seemed to manage it. Until the time came when her GP suggested a cocktail of drugs be given subcutaneously to help to relax her and ease her struggle. Unfortunately there was a delay of a few hours between the suggestion of medication and the actuality as the prescription went missing at the pharmacy, and where I was troubled that the decision to medicate was premature, she suddenly started having full body spasms which looked very painful. In the end I was crying and praying that the medication would come as Mum was so distressed.

    After the start of the medication she became relaxed and peaceful, the spasms stopped and her breathing quietened.

    My daughter and a close friend came to sit with me at my request for a couple of hours, and we chatted about times past, had quiet music playing in the background. After they left I settled in Mum's recliner beside her bed for the night, holding her hand. It was like that for a few hours until it occurred to me that this could go on for a few days, so I decided to go home for a sleep at about 3.30 am. Just as I was about to get into bed at 4.15 am the phone rang. It was the nursing home to say Mum had passed away.

    I have to content myself with the idea that it was Mum's decision to wait for me to go before she gave up her battle, because it had always been my real intention to be there with her at the end.

    I write of this to say that we can only do what we think is right at the time and all we can hope for is that our precious one understands that we are doing our best for them. To create a calm and quiet and gentle environment, and be painfree, seemed to be best for us.

    I so much recognise and feel for you the indecision that is troubling you. You can only do your best, and every sufferer and carer understands what that means, so don't beat yourself up. It doesn't mean though that I don't have the feeling that Mum is telling me off sometimes for putting her in a nursing home, and letting her die on her own!

    My thoughts are with you, take care of yourself, have a massage or a facial yourself sometimes, or even a day off visiting your Mum, she will forgive you I'm sure.

    Brenda

  • Brenda, Thanks for the story about your mom. My wife is in the early to mid stages of PSP. I appreciate knowing what the end is like because I don't want to get blindsided when the end comes. It is the sharing of experiences we become more knowledgable and able to cope with this terrible disease.

  • Thank you all. How wonderful to have somewhere to go where people actually understand! That in itself is so helpful.

    Jan, I have been looking at those tilt n space wheelchairs so what you say about Derek really makes me think. Perhaps I should just relax about her being in bed as she does seem comfortable there and I would hate for her to be in distress. I am so mad on your behalf that Derek has been turned down for CHC. How can they say he is not unpredictable when he has had a recent spate of infections?! I can only think that the reason my mum was awarded it so easily was because my dad kept ringing 911 in a panic and she was more in hospital than out of it for some time.

    Superman, thanks for your advice. We do rub topical ibruprofen on her shoulder which is sore but we could try some on the leg that is contracted, even if we don't move her. She has the TV on, sometimes set to radio, sometimes day time telly so she always has background noise.

    Brenda, thank you for sharing your story with me. It is so sad and I am glad that the drugs made her peaceful. As you say, what can we do but our best and sometimes we are our own worst enemies with the guilt trips we go on. Sometimes I remind myself that if my mum was well and could speak to me she wouldn't be happy with me beating myself up. I'm sure your mum would be exactly the same.

    Cate

    x

  • Dear Cate, we are at the same stage with mum. We have been through all the same with trying to help her have a reasonably quality of life by having a normal 'day', getting up at a decent time of morning and out of her room whenever possible. I have been going every day since she deteriorated enough to go into the nursing floor and had just got them into the habit of taking her into the lounge for meals, entertainment etc before Christmas when BANG she woke up the day after Boxing day unable to move anything other than her eyelids After several days of testing she finally showed positive for UTI and started antibiotics. Although her mobility improved to the extent she could lift her arm and hold a drink she has not walked since then and has had at least 2 further infections which have set her back again.

    You can get what is known as bucket chairs. They support someone in a variety of positions and can be wheeled as they have a handle at the back. I know they are expensive and have asked at mum's care home if they have any spares but not pursued it as mum still wouldn't be able to say I have had enough can I go back. She does find it a bit too much being around lots of noise and if they forget her sunglasses she can be left facing up at a ceiling light or a bright TV because they forget she is light sensitive. This makes her eyes water, her nose run and she gets into a terrible state so she just sits with her eyes closed in that event. She was happy with me just wheeling her about for half an hour and then back to her room.Now that she has to be hoisted it is a fine art picking a moment when someone is free to hoist her in and out of her chair.Currently her sacral skin is so dry that it has broken down so she is on bedrest for a few days to heal it. Her swallowing is deteriorating almost daily so I am guessing it is only a matter of weeks before she begins to starve.She has lost a fair bit of weight. She has refused a PEG or NG and I respect that. It would only prolong thngs and she wouldn't be able to cope with an operation at this stage anyway. The only thing I have found is a good care plan and ask to review it. but most of all getting it in writing from professionals eg PSP advisors, SALT team , physiotherapists etc means they have to follow it as if the CQC come in and find it is not being followed they can give them a red flag which can seriously compromise their business. As lovely as the home is , the carers do not always understand mums needs and I do feel like I am banging on about everything but they say they understand and it's my mum and they would be the same.

  • It is quite incredible how each infection can cause a set back from which it seems it is impossible for people with PSP to bounce back. It definitely seems to me to be a disease which works in plateaus and then sharp declines. Thank you for the tip about bucket chairs. I will look into them. All the very best with your mum x

  • Cate - I am very upset after reading your post. All I can offer you is my experience. My father was not bed ridden until the final few weeks of his life - when it was too painful to get him up - - -we stretched my dad every day - he was washed, dressed and in his chair every day. My caregivers were trained to get him up and transfer him - he also had a til-n-space wheelchair that was very helpful and supportive for his condition. We moved to a hoyer lift when dad had problems supporting his weight but by golly - he got out of bed. As far as the dry mouth is concerned - the home should be using dry mouth gels or sprays and should be moistening the mouth with swabbs. The delimna with PSP is the level of care that is needed - can the home provide it or not? Do they have too many other patients with a high level of care? If I were you - I would pop in more often - and if she is wet or in need of a change - they are not doing their job. You should probably check her for rashes etc if they are not keeping her clean and dry. Also - make sure you are looking around the PEG to make sure they are keeping that clean and taped up to her chest. Every life deserves to be lived in a dignified manner no matter what the disease! If they are not doing their job - raise holly hell!

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