hi, my mum is in her 6th or 7th year of psp she is now in a wheelchair although she can still stand her feet just won’t move. Her speech is barely there sometimes you can have a little conversation with her other days the words won’t come out. Her sight isn’t great but she doesn’t let you know that and still attempts to do puzzles and sits with the tv on. Swallowing isn’t good she is on a blended diet which she hates. She will have the odd thing that’s not blended and copes well with it but the fear of her choking is too much. She eats a decent amount but is still losing weight.
Ive been her main carer through this, I,maybe stupidly, promised I would keep her in her home until the end but at Christmas the whole family was ill including my mum and I couldn’t keep her safe anymore. She is now in a residential home where myself, sister and niece work. She really should be in nursing but the home have agreed they can cope with her needs. I feel defeated although I can see if she stayed at home she would of ended up in hospital very quickly with all her falls and impulsive behaviour.
Since Xmas she has had a near constant chest infection she looks so frail and tired but is still waking up every morning with a smile. I don’t know how she does it.
What more is there to come? No one can seem to answer or they dont want to. I hate watching her becoming trapped in her body and for me mentally I think knowing what could happen in the future will prepare me to some degree. I’ve took psp day by day up until recently now I’m really tired of it. These people who suffer with it really are amazing xx
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Sending hugs.🤗 It’s not easy being the main carer you have done amazingly for many years. I find the most difficult to deal with is lack of conversation with my husband as it’s very very limited. You will have more time to be with your mum and be a daughter and not a carer 💜💜
yes definitely, I can see my mum wanting to talk and some days if she’s had a good night she will talk very quietly other days it feels like she hasn’t got the energy to even try. She used to talk to anyone and everyone I wish we’d of recorded her voice
Don’t be hard on yourself. Our social worker told me that nearly everyone intends to keep their loved one at home, but almost no one manages it all the way. It often is so much better for the patient to be in a good residential care home. You did well to care for her at home as long as you did and to find a place for her now.
It’s frustrating not to know what the future holds, but truly no one can predict it, and that’s true for the course of most illness. PSP affects people so individually, and then everything depends on core health - and will to live. A persistent chest infection could become pneumonia, of course. How far will you go in treating it? Have you decided to go with PEG feeding if she becomes unable to eat?
Do I understand correctly that you and your sister and niece all work at this home? I hope this means that you can see your mother often and comfort her and each other during this hard time. Do take care of yourself. That’s important. Rest.
Yes all 3 of us work at the home my sister in the day and myself and niece do a few nights a week there so even if there is an issue with someone not being able to visit there is normally a family member there anyway.
Mum has always been against PEG feeding and has a respect form in place to say that and no cpr. She knows what she doesn’t want.
The home is constantly getting the gp out for her chest but they only give antibiotics think they will be out again in the next few days.
Yes I definitely need to take time for myself at some point. I can never step away and take a breather. We are a large family but I seem to be the one most involved and left with a lot of it which with my own family can be quite overwhelming at times.
Hi, have you been in touch with a dietician yet? They may suggest she is given compact Shakes to help her gain some weight and ensure she is getting all the nutrients she needs.
hi yes she is now having the yogurts instead of the shakes. They thought yogurts would be better not sure why. Wondered if it was because she has thickener in her drinks. She seems to like them though and is eating them on top of her normal meals so fingers crossed it will at least keep her weight stable
The yoghurt would be to encourage the use of the mouth and tongue; my wife cannot control her muscles in her mouth move the food from the front to the throat to swallow.The old adage use it or loose it comes to mind.
It’s hard isn’t it, no one quite understands it unless they live it and siblings who aren’t helping drive you insane. I’m in the same boat, although mum isn’t in a care home yet.
Whilst taking time for yourself is necessary, I bet you worry when you are there and worry when you are not.
What does the future hold? I ask myself that question all the time, I’ve been told pneumonia is common, if swallow goes all together then without a peg (my mum doesn’t want one) then nature will take its course.
Try not to dwell on it, i know it’s hard not too but focusing on the future takes away from the small positives now, I’ve done the same as you to start with.
I know your journey all too well. My Mom did not want a peg tube, and her swallowing became very challenging —- until she just couldn’t swallow anymore. We tried purée foods for weeks, she lost a lot of weight and one day she just stopped eating — she could not swallow anything. Her body was tired and she fought for 7 years. I find myself questioning every decision that I made, and have to remind myself that as her caregiver — I did the best I could in making her last days on earth the best I possibly could. Hang in there - one day at a time.
I moved myself to what’s called assisted living in the US less than a month ago because I recognized I was one fall away or one fire away (with an overheated pot on the stove) from serious health/safety disasters. I went into this kind of care earlier than others because I decided to make an easy transition at my own speed rather than struggle to figure out what to do amidst a disaster.
I’m at the stage very similar to your mom. I tell myself I don’t need that long list of assistance-with-daily-living tasks that assisted living facilities offer. Yet.
But…
Since I’ve been here I’ve been able to see clearly how difficult it can be to eat on my own. I ask for chopped meats at meals and they’ve gotten acclimated to that need so it’s ironed itself out. I also keep light meal components in my room for those times I don’t want what’s on the menu.
My hands seem to get worse every day. They feel more like paddles than fingers. It’s really frustrating.
I’m in a wheelchair outside my room, with a walker for short distances in my room. I’m feeling much less safe getting around than I did before.
I need a stylus (a special wide rubber-tipped pen) to click buttons and arrows on the computer nowadays, which, for a former software programmer, leaves me one step away from throwing the laptop across the room, except that I can’t even aim and hit the trash can with a tissue anymore. 🥺 Everything I try to toss any distance (like laundry into the closet or a fallen grape onto the counter) ends up at my feet. And don’t get me started about picking up small items thatve fallen on the floor.
Like your mom I’m having trouble speaking and can’t remember words often.
I cough a lot when I eat or drink.
I frankly don’t think there a lot of time left for me since I won’t accept puréed foods, thickened liquids, a feeding tube and I won’t fight pneumonia if it comes.
The upshot here is I’m glad I’ve done it. I think I’m only seeing these declines because I’m not responsible for every moment of every day so I have the time to see and care about them. The changes in symptoms can be subtle from day to day and they add up - when I was hustling to do everything I didn’t see how much I was losing. These declines aren’t “more visible” to me because I’m now “a lady of leisure.” They’re more noticeable because I’m not overwhelmed and running on adrenaline from moment to moment. I feel safer knowing staff are looking out for my needs even when I convince myself I don’t need help.
If your mom is in a similar stage or you’re a caretaker to anyone, think about this option. You both will need time. That doesn’t mean everyone’s given up. It means you’re preparing for the train that’s barreling down the track in your direction.
Spend time reminiscing, thanking one another and forgiving the mistakes everyone makes.
You’re on the right path, and truly lucky you all cross paths multiple times a day without all that extra pressure.
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