I’m in need of a bit of support and hopefully information.
My mum is 79 and she was diagnosed with PSP in January 2016, she’d been showing symptoms for 2-3 years before that but she was told it was Chronic Fatigue Syndrome. She deteriorated quite rapidly after diagnosis and spent most of 2016 in hospital after falls. My dad cared for her until he physically couldn’t anymore and she went into a nursing home November 2017 (my dad then ended up in hospital himself and is now in the same nursing home as mum)
Now mum’s at a stage where I haven’t actually seen her out of her chair or bed for weeks and I haven’t heard her speak for about 2 weeks. Every time I go to see her she is unresponsive, sometimes she seems asleep but other times she’s just staring with this glazed expression. I’m at a point where I really want to talk to a medical professional about her decline but I just don’t know who to go to. The staff at the home are fine but they’re not doctors.
What can I expect to happen now? Does this sound like late stage or does it get even worse than this?
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Curlycat
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Does this nursing home have a schedule of visiting doctors who make patient rounds? If not, then a visit by a neurologist to see your mum is in order. It's possible that the neurologist would also have your mum be seen by a internal medicine doctor. If you have power of attorney, decision making for your mum, then by all means have her get seen. Your mum has that basic right. You must and are entitled to know her condition. Care staff cannot make those diagnosis and it isn't a nurse who can either. Do not wait. Take action. If a doctor cannot get to the nursing home, then have your mum be transported by ambulance to a hospital. Go to a physician first to describe the situation you are facing. That's only my input based on your post. Best wishes to you and your parents. It is terrible, I know firsthand in dealing with my beloved mum. Be strong. You are, it seems, her advocate. By all means then 'advocate' for her!
No there isn't visiting doctors in the nursing home, they call in the patient's regular GPs if needed. It's complicated by my mum's current GP being a personal friend of hers and it seems like she just visits mum unofficially, as her friend not as her GP. Last week my dad received a letter from this GP stating that mum is no longer mentally capable of managing her financial affairs so we're putting power of attorney into action now. We don't have easy access to a neurologist, we live on an island where they visit fairly infrequently and the next time mum has an appointment is sometime in 2019! She was diagnosed by the neurologist and had appointments every few months but according to dad he didn't say much other than there's no medication for PSP. I should mention my dad has a general distrust of medical professionals and this complicated the early stages of mum's disease because he dealt with it. Now he's not physically able to I want to take on the responsibility but not sure who to contact. Mum does have a long term health co-ordinator but she seems to only be aware of visits by the physio and speech therapist. I think my best solution is to try to contact her GP.
Thanks again, it is very terrible situation and a very cruel disease.
Don't forget about Hospice - I'm in the states. Here Hospice will come into the nursing home. They will do an assessment for you. In my experience the overworked staff appreciated the break Hospice was able to give them, too.
Thanks for your suggestion. We do have a Hospice here and it seems a fantastic place. Mum dealt with them quite a lot earlier in the disease progression when she was living at home and she even had a couple of weeks respite care in it. She had put into place a plan to go into the Hospice at the end of life stage but I think because she ended up in the Nursing Home that plan was changed. I need to look into it because I don't think they are involved anymore and I doubt they will come into the home.
The thing with PSP and CBD is that as the person deteriorates any new issues thrown up by worsening symptoms are managed by a doctor. You Mum will be under the care of a GP in the home. However there should be a neurologist in the background.
One possible route is to find out who her GP is and go and have a chat with them. If there is a neurologist find out who they are and telephone their secretary and ask if they will let you have an appointment for a chat, or a telephone appointment.
Our experience is that as the condition worsens it's other professions who become more useful, excepting for critical issues. O.T.s for equipment, Physio for movement, SALT nurse for swallow issues and so on. GPs of course for small alterations to medications and for things like antibiotics.
The glazed expression may well be the fixed look PSP folk get as they become less able to move their eyes. Most often the mind is still really active despite the stare.
PSP brings with it muscle weakness and fatigue. The person does become more sedentary as the illness progresses.
Other symptoms are often a deteriorating swallow needing a soft or liquid diet. Speech most often deteriorates, again loss of muscle ability, but again the persons mind can be pretty active still.
Have you read the articles on the PSP Assoc. Website? They are very good.
Hi Kevin, thanks for your reply.My mum has been seen by a neurologist but appointments are pretty infrequent because we live on an island where there isn't a neurologist based here so you can only get appointments when they visit. Mum has been seen a handful of times, she was diagnosed by the neurologist but I don't think they're active in her healthcare. The next appointment she has is for 2019. I think they're of the opinion you can only manage symptoms.
I know she is still seen by SALT and a Physio comes into the home because her long term health co-ordinator told me but I'm not sure what comes of these sessions.
Mum hasn't been able to move her eyes easily for a few years now, it does feel like this is a different stage. It's like she's catatonic, she doesn't move her eyes at all. I don't know how much she can be eating or drinking. She has needed thickener in any drinks for months now but she seems so inactive I don't know how she can be drinking anything at all.
Thanks I'll have a read of the articles. I have read generally about PSP since mum was diagnosed but it such a variable disease it's hard to know what to expect.
Yes, there isn't much a neurologist can do as the disease progresses. Earlier on they are very good for medication to alleviate some of the symptoms.
Is she still able to squeeze your hand? My wife and I do a lot of communication by hand squeezes from her in reply to questions.
So often she will lie there expressionless and staring, but when we get going with hand squeezes to questions I find her mind is very lively and she has quite a bit to say.
If the nursing home are doing their job they will be monitoring her fluid intake. They are usually very skilled with food and fluids.
The next thing you might well be faced with is a decision about whether or not to fit a PEG. That's a feed tube through the abdomen into her stomach. If she is unable to communicate she technically does not have capacity to make the decision and then it falls to the nearest, or most involved, family member. If there is a Lasting Power of Attorney then it falls to that person.
I do wish you well. This illness is such a heartbreak.
I'm going to try the hand squeezing and try to talk to her as normally as possible. She was always such a chatty person, it breaks my heart to see her unable to communicate. I do need to talk to the home about her fluid and food intake.
We're in the process of putting Power of attorney into place, my dad already filed it and me and my sister are going to ASAP.
Thank you again, it is such a cruel disease but this community seems very supportive.
I would ask one of the carers if you can speak to the care manager and then request a meeting with the doctor who sees her. Sometimes, if she is near her previous address, it may be her GP. She may not have seen one lately though as there is little anyone can do unless there is an infection or something other than PSP.
Speech does go. I can only tell you what my husband was like but I know others have said the same. He stopped speaking quite suddenly but eventually when I asked him why he never spoke to me anymore, he said he was speaking in his head. Then he was silisnt again. The effort of trying to vocalise was too much. Even after months of silence he would suddenly say something in reply to my constant chattering. On one occasion I was trying to remember someone’s name and he said her first and surnames clearly.
Can your mum squeeze your hand if you ask her to or put her thumbs up and down? However she appears on the outside, she probably hears and understands everything everyone says. Colin reacted differently according to how those around him acted. If carers spoke to him he could acknowledge them by grunting or doing a little humming laugh if they said something funny. If they didn’t acknowledge him other than doing their physical duties, he would sit, unresponsive and looked depressed. When new carers came in I would tell them to chat while they worked, telling him about their families etc, nothing that would require an answer but being so close physically to someone and not talking is uncomfortable for anyone. I would never speak to others in the same room without acknowledging him in the conversation and trying to make him feel included. He would sit with a glazed expression because he could no longer move his eyes or his head or blink but when I squeezed his hand or kissed him, he would squeeze mine back, I knew he was still in there. Make sure all the carers in the home know she can hear and understand everything. If they talk to each other and ignore her when they are doing things for her, she will get depressed. Anyone being ignored would, especially away from home without family around them.
I expect you do already, but when you go to see your mum, talk to her normally, tell her about your day, remind her of funny things that happened in the past, read to her and touch her. Even if she doesn’t respond, she is probably chatting away in her head. You may see her respond in some way but even if you don’t, keep talking.
Thanks for your reply. I will try to speak to her GP, she has been seen recently by her because my dad got a letter saying that she deemed mum incapable of dealing with her financial affairs so we're putting power of attorney into place. The problem is the GP is a friend of mum's and I don't know the purpose or outcome of the visit. I also don't think she has much experience of PSP.
That's the difficult thing, I do try to talk to mum normally but up until recently she's always replied a bit unless she's actually been properly asleep. I think the past couple of weeks I've been assuming she can't hear so don't chatter like I used to. It's becoming very hard to visit because I have an 18 month old and it breaks my heart when she goes up to her Nana and smiles at her and plays peek-a-boo and gets no response. I'm finding it very difficult to hold it together at the visits. I haven't tried the squeezing hand thing but I've touched her arm and held up my daughter to give her Nana a kiss and got no response so I think she may be beyond that now. But because of your message I'll try to go back to chattering about her granddaughter because I know she always loved to hear about what she was doing.
It must be difficult visiting with a lively youngster. When my youngest grandchild came to visit, I would read him a story with him sitting on my husband’s lap for a short while. His blank face would soften. You reminded me of an occasion when I took my husband to our church. He sat motionless in his wheelchair staring down as the sermon was preached. A very young child who hadn’t gone out with the other children, came and stood looking up at him and stared back. It was obvious the child was playing “who will blink first”. The child was wide eyed and they started watering with the effort. Eventually he had to blink and then ran and got his older brother and they both did it. At this point Colin started his funny expressionless humming laugh which scared the boys and they ran off. At which point the pastor said, “Well done Colin, I knew you would win” and the whole church burst into laughter. We don’t have pews and I always put his chair at the front row and one end of the large semi circle so most people saw what was happening. We had many funny moments during the 6 years I nursed my husband and many happy memories during a time that could also be horrendous. Now I remember the good times more than the bad.
Sorry I meant to reply to your message. That's a lovely story, thanks for sharing it. My mother would have found that very funny too, that was exactly her sense of humour. And yes it was/is challenging with a toddler! xx
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