Liz seems to be going downhill fairly rapidly since being in care.
Here ability to speak, she can't open her mouth much at all and feeding is becoming very difficult, her ability to do anything with her hands or move her arms and legs so well.
Late this afternoon the Home called me to say she is refusing food and fluids today. I popped over and recognised the symptom immediately. She was lying on the bed as if asleep. She was clothed, so she must have been up earlier. She's very good at this as she does not move her eyes under the lids either.
I stroked her head and kissed her and held her hand under the covers, but she would not respond.
Finally I started telling matron jokes of the S&M ilk and what would be done to the nurses if they couldn't rouse her. ('Carry on Matron' style) The most delicate smile spread across her face. She never could resist my dark humour. So I shifted into saying that I would not let on that she was fine and just 'having a go' and the smile got bigger.
The sweat heart just wants to be home.
So having said to the staff that she's fine and just protesting I agreed top pop back before she was due to rise in the morning. I shall put my Santa hat on.
All in a days loving her to bits.
But do people go downhill more quickly when they go into care?
Kevin
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I don't know, Kevin. But Chris went into hospital with a chest infection. He could walk holding my hands, feed himself and hadn't spent a day in bed. He came home a week later, doing nothing - palliative care - and died 2 months later.
He was older than Liz ( 83}. Every one was amazed how long we managed and it felt as if it all collapsed and he just " fell off a cliff ". He'd had enough after 2 months. He decided he'd had enough - stopped swallowing.
It is all unpredictable - but she is a strong lady and will do it her way, including manipulating if she can ! [ I would too ! ]
Including about the stubborn streak which I both love and respect.
It used to pop up from time to time when we were deciding things and I would pretend to resist just to get the firm nod that I had seen sense in the end. If I was lucky I would get, with a wink, "Men are so hard to train." before a kiss of forgiveness.
Chris sounds like a remarkable man. Doffing my cap to him.
Don't know if there is a consensus on this. Does it depend on what stage they are at with PSP, that it just seems they deteriorate quicker? I imagine when it gets to the point where nursing home care is needed they are probably advanced. Jean would you think it's a faster progression the older the person at diagnosis?
Sadly Kevin I would say, often yes! However my Dad didn’t, he had gained a lot of weight but he is more confused, it’s a tricky balance......the real point here is that, 95% of people in care/nursing homes would obviously rather be at home, who could blame them?! It’s an awful adjustment process that takes time, patience is needed. Hugs my dear friend x
She is a little brighter today and is accepting medication. Hopefully she will accept lunch as well.
When she came home on Friday I found her urine to be very strong indeed. I have asked the home numerous times to ensure she get's enough fluids and that she needs prompting. They finally got the message and have unnecesarilly put her on an hourly fluids regime. So over medicalised, but at least she is getting the fluids now.
Sorry to hear this but can totally understand her wanting to be home.
Mum does this too and won't open her eyes but knows exactly what is going on. Even after a seizure she doesn't miss a thing. She maybe more confused these days but then out of no where she will make a comment about something and it is clear she taking everything in still. Mum also refuses to eat and drink at times. It is the bit of control they have.
I guess everyone is different on whether they progress more in a home, I guess also depends on the home and how they interact and spend time with the person.
Kevin I agree with Jean, when George went into hospital, beginning of the year he cane out unable to transfer, we had to get a hoist, he seemed better when he was home, I pushed to get him nursing at home, where the nurses came in, he was in a better place, not had to use the hoist. He has gone down hill a lot lately, choked so badly the other night though it was the end. Not sure about nursing homes, but I am sure Liz is in a good one, maybe she just needs to get use to it? Sending you a big hug, can just imagine you going in with your Santa hat on xxxxx
I know what you mean, Kevin. Thats how it seemed with Chris. He lost weight and was so much weaker and it can't be halted. And he was nursed at home so don't feel thats the problem !
I know my darling took enormous dives on the three occasions he stayed away from me and begged me not to send him away again, so I didn’t but I was in a better situation than many with night carers so I had a good night’s sleep and they would put him to bed and get him up. I was nearer 60 than 70 and in good health and although it was still exhausting and heavy, I was grateful I could keep him at home. One of the occasions he went away for two weeks was when I injured my back and couldn’t look after myself, let alone him. We would all like to stay in our own homes but everyone’s circumstances are different.
Liz may decide one day that she has had enough and refuse to eat or drink again like Colin did when he no longer wanted to be PEG fed. Liz may have just been having an off day and when she sees you in your Santa hat she may decide she wants to go on longer but I think if she decides to go it would be better when she is infection free and peaceful than struggling to breathe with aspirational pneumonia.
I’d love to see a photo of you in your Santa hat and a big smile on Liz’s face.
Hi Kevin. I really admired the fact that you were brave enough to recognise that you could no longer look after Liz and that you placed her in a home where she can get the support she needs. It took a lot of courage. I imagine Liz didn't realise how difficult things had become for both of you. Liz is lucky to have someone who took good care of her and is still taking care of her. Look after yourself and hang onto that sense of humour.
I echo Margaret and others posts. So incredibly hard to hit the end of a road as a home carer by the time we reach that our loved ones have deteriorate so muc and have such complex needs. You are incredibly in tune and mindful of Liz’ s every need more so than anyone else can ever be. A strong and determined couple you are.
Hope the Santa hat brings a smile to you both tomorrow. Be kind to yourself during this next part of Liz’s PSP journey
Dear Kevin, you are one devoted husband doing you utmost to keep Liz as well and happy as is possible. Ben has only been into respite twice and although he didn't complain I know he endured it and came out much the same as he went in. I too intend to nurse Ben at home until the end but like you may have to give in and place him in a home. Never say never is my motto, you just never know.
Glad to know that Liz is playing her little games with you and the staff, that's the problem in homes they don't know the little intricacies about your loved one and can misinterpret. Hope she enjoys her visit by Santa and chooses to open her eyes when he visits.
I think the staff were quite frightened and needed reassurance. I can't get in today because of the snow. We live at the top of a fairly steep hill and the home up another hill.
However the home has said she opened her eyes and accepted medication this morning. It'll be extra hugs for her tomorrow + hat.
Until an hour ago all of the roads around here, including the M25 and M1 were coloured deep red and in some places closed altogether. I know from my visits to Canada they would barely notice it!
Thinking of you both, Kevin. You know each other so well and you can still read her like a book! Have some joy with the Santa hat! Love to you and Liz.
Hi Kevin, I don't think they necessarily go down hill because they go into a home, it's more, that's why you couldn't cope, Liz was on a downward spiral anyway. I know those last few weeks with Steve, I wasn't coping at all. The nursing home where he was going for respite, had agreed to take him after the New Year. Of course, I now know, things were out of control, because he was dying.
I am sure, given a bit longer, Liz will settle down into the next plateau.
Believe it or not - no snow here in the West of Scotland🤣 Kevin, I was wondering how the home is coping with helping Liz to eat. Did they stick with your syringe method?
I spent 18 happy years in Galloway and sailing the West Coast. But don't worry they'll make it up in rain later I don't miss that part!
No they went white when I mentioned what we had been doing. Its not in the books you see. They are managing with very soft food and a teaspoon. They are incredibly skilful with it.
Sorry not been on here for a while but couldn’t resist having a peek to see how everyone was.
I’ve just seen that Liz is in care and sadly I feel that deterioration does happen very quickly in care, please know I am thinking of you both, this is so tough and I’m still struggling to get to grips that Keith is no longer with me.
Sending both of you a massive hug, try to stay strong as you’ve always been, your love for Liz is obvious, take care friend,
Thank you Kevin, I miss Keith so much but I try to remember that I did what I thought would be best for him at the time, but I know deep down that being at home is the best for people suffering this disease, if I’d have known he had so little time I would have cared for him at home where he wanted to be, I still feel this awful guilt that I should have hung on longer! 😔xx
I have not posted often on this group but I have gained a lot from it, from the way you have loved your dearly beloved Liz, and how much help and guidance you have given to others. My husband died from PPA plus CBD or PSP on 30 May (3 years post diagnosis). I had thought he might have another year or so and I was worn out. He went into a nursing home (that was excellent) to give me 10 days respite at the end of April. That happened to coincide with another downturn in his ability to swallow and he died 3 weeks later after returning home. No health professionals predicted that. Each person's journey seems so different with these rare illnesses. What is wonderful is that Liz can still respond in her own way to your humour; and that you have found the best possible care for her given her needs. I wish you well in whatever may lie ahead.
It is a worry isnt it? B. is now in a home after several hospital admissions. It is a very good nursing home. A lot of the staff were trained by our local hospice and his care is superb. Yesterday, I got a call to say that B had had a really bad night. They had nebullised him twice, had him on oxygen and had done some chest and back physio. The doc was called. B was already on antibiotic for a UTI, but it was changed as the doc found an infection in his right lung (usually, it's the left.) We didn't think he would survive the day, so poorly was he. Later, I was expecting to be called out in the night, but the medication worked and today he was trying to talk and much, much better.
The thing is, when I was leaving, he said he was coming with me. He does this every time I leave if he is not feeling poorly
I know I cannot give him the continual nursing care that he now needs. He seems to think that I am keeping him there and its my fault that he can't come home.
At present they are tweaking his peg feeds and meds all the time. It takes two to move him regularly. He is constantly monitored.
Since the cold, bitter weather has come I am crippled with arthritis in my back and neck. I took him to look at the Christmas decorations around the home in the special chair they got for him. After wards I could hardly move because of pain in my back. Despite this, I feel terrible when I leave him and I sense that he is very annoyed with me. It's so terribly upsetting.
I was so moved reading this. I was in similar situation and was able to manage at home but was so aware of my vulnerable back and told Chris so. No way can you cope in your position. I think we all understand how much the patient wants to die at home - if only it were possible.
Your post brought a tears to my eyes. So much love and so much sadness. Although it is a struggle you sound like you are doing wonderful things for him.
I always leave the home with a mixture of loss, guilt and hurt. I know only the first one is really 'valid', but my hypothalamus has its own agenda.
I'm sorry that you have to cope with arthritis on top of all of that.
Sending many hugs and wishing you both the best of what you can have still.
Thank you Kevin. I'm so grateful for people like you, for the support, and the knowledge that you know what I am going through. B. was fidgeting today and not particularly comfortable. I left after almost six hours knowing that all that could be done, would be done for him. The only reassuring thing at the moment. X
I dont know the answer to your question Kevin but I do know that each time Gerry went into hospital he came out slightly more incapacitated and less able than when he went in. Thinking back brings a few tears.
I sometimes imagine that I shall always have 'tears in the rain'. I don't mind them in some ways, they allow me to feel the love I have and to celebrate the person Liz has been and is.
Life is hard, but I hope it get's better for both of us.
My dad, 75 years old, went into a nursing home in June and has stayed fairly stable these last 6 months until just last week when he had down turn. Family had noticed a couple of weeks ago that his speech had gotten a little worse. Nursing home did not notice any real changes until a week ago. For the most part he stayed the same for the six months he has been in the nursing home. Granted, we just got the PSP diagnosis a week ago after his last hospital admission but first started seeing signs about 4 years ago. I'm sure how far along they are in the disease has a lot to do with it. For us moving to a nursing home was vitally important for his safety. He had a bad fall in April and ended up with a brain bleed, when he came back home from the hospital he kept falling. Nursing home was able to keep him safer than I ever could at home.
Hi tlovinsGosh, you folk have really been through the mill. Yes, brain bleeds are very serious indeed. Blood decimates the brain tissue with which it comes into contact.
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I don't miss that part!
