My mum is tired all of the time, more so over the last few months. Often falling asleep during breakfast. Anyone else experience this pls?

Consultant has said 6 weeks ago, mum is in the last stages of PSP. She is managing liquidized foods well and has had no chest infections. She is not able to stand anymore and speech is sometimes very hard to understand. Fixed eyes causes huge issues, she can't read and I'm not sure how much she sees of the tv. The tiredness is really bothering her. Any advise please or similar troubles? Thank you

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  • <y Ma in Law Moyra is also in the final stages of PSP and has had it for around 12 years..She cannot speak at all or stand and she has lost around 6 kilos in a couple of months..I think the tiredness is just the natural way the body winds down to its final sleep, which In Moyras case will be a blessing..This condition is so very cruel..All the best with your Mum love..Keep strong.

    Lynn x

  • my father is in the same stage like your mum Jo-Jo but you have to diference to be tired and be apathetic, cause ist no the same, apathetic its no interested in nothing and they can sleep all day....tired its diferent they shows really diferent , try to put her audiobooks and check if she listen them if she shows interest for that, try to put music aound her and check if almost open eyes, try to play with some rubick cube or try to play with calculator and she repeat numbers and multiplications....its only to get distract her mind i do this and works well...send u a hug from spain.....be strong.

  • hi

    i AM LUCKY(?)

    i have the slow sorst fo psp and am still able to get out and about wiht a good arm to hang on ot

    i respec tboth your mum adn mum in law s problems - sleepign TIREDNESS is difficult but inevitable when the bdoy is sayign enough!

    btu it will b a release for them whebn ti comes..can aheyy communicate at all?

    i do not want ot continue when ican no longer communicate in any way and have a LPA and a crucial a4 sheet ot go iwth it staating myh wishes

    HUGS AND LOVE

    jill

    :-)

  • Hi

    Mum was very tired in her final stages she spent most of the day in bed only getting up for maybe half an hour at a time. Just spend time with them tell them you love them often and make sure you look after yourself as well I know that is easier said than done. It just seems to be another stage in the PSP mum was so tired all the time

  • Hi Frances, this information should be given to you by your husbands consultant. Even though we were told my mum is in the final stages, with this awful disease it's almost impossible to say how long it will be, as although the symptoms are the same it's very individual to each person. I can see my mum declining a little every visit. She has very good carers at her residential home, who watch her very closely. Sending hugs to you my lovely xxx

  • Sorry I have no idea why I said frances, I have fibromyalgia so I'm blaming the fibro fog!! Stay in touch, I'm finding now towards the end I have more questions than ever but lots of experience with mums illness I'm happy to share if it can aid somebody else in anyway. Apologies again for the name error xx

  • Iamnot tired. My eyes closes allthe time .I feei that causes my falling. Icough so loud that childern weep and My neck pains with the result i amunable turnaround and see clock which is behind me.even whem I see the clock i find it difficult to focus

  • Frank sleeps for most of my morning visit, I am nor sure whether we have reached another stage in the PSP. Last week he seemed agitated most of the time - yes - another urine infection, that seems to be under control and now he seems to be so passive in his manner, this is a new side of the PSP with him that I haven't seen before but the calmness is easier for me to deal with that the terrible agitation of the last months.

  • Hi Jo-Jo

    My husband (64) has CBD (5years) and is now often asleep, the carers hoist him into his chair at 8.30am and he can sleep until 11am before he is awake enough to eat breakfast, we are at the stage that if he is awake I feed him as much protein food as he will eat. They put him back to bed at 12.30 and he goes off to sleep. He has lost 8kg in 7 weeks, no longer watches tv or has any interest in what is going on, he can talk a lot but we can't understand what he is saying apart from the swear words! We do read to him and play his music. It is heartbreaking to watch his deterioration and I feel so helpless. All tne best with your Mum, be strong for her, sorry not to have any advice, I think that Tony needs the sleep because when he is awake his mind is active with the talking and he talks through the night.

    love Lorri

  • Yes, this is how mum is now. She has PSP and has had it for approx 5-6 years but although she is 77 she had a very strong body to begin with. She now seems to have her own sleep clock and whereas she has always been best in the mornings she has suddenly started to sleep a whole morning and then be good on the odd evening. Everything is so exhausting to her not least as her breathing is shallow , hence the sighs she makes.Her oxygen level sometimes drops as a result.She hasn't really watched tv for about a year now as she couldn't see it properly and then it was too bright for her. She listens to it though and it keeps her company when others can't sit with her and gives her a bit of normality and even helps her to know what time of day it is.She sometimes has a lovely chat with the night carers and then can't talk the rest of the day. I wish comfort and strength to everyone. x

  • Yes my mum is in the same period and doing all the same. When I feed her dinner I makes sure she gets a quiet period before she eats so she can nap. Then I feed her when she wakes and it is more successful but she sometimes needs a nap before dessert. t I just keep chatting to her and asking if she has swallowed yet. his stops her falling asleep with food in her mouth. I don;t know what else we can do.

    hugs

  • Thank you all for taking time to help with my question. Jill I see so many of your posts you are such an incredible, brave and compassionate woman. Sending my love out to you all through these heart wrenching times xxx

  • Thank you all for taking time to help with my question. Jill I see so many of your posts you are such an incredible, brave and compassionate woman. Sending my love out to you all through these heart wrenching times xxx

  • Hello Jo-Jo, yes, my Mom was tired all the time too. In fact this was something that started right at the start of her illness in 1998 and we thought it was her thyroxine dosage that needed boosting. Towards the end of her 12 year illness the tiredness took over though she said she was unable to sleep at night. I tried to keep her awake during the daytime when I was with her by chatting, doing her nails/hair, watching TV with her, but she would fall asleep. Even on outings to the shopping mall in her wheelchair, I'd spend ages getting her ready, loading her stuff into the car, driving there and getting her into the shops, and she'd be asleep !! I think the effort of keeping the eyes open and head upright is a bit much given the muscle weakness. It is upsetting to us but at least while they are asleep it's peaceful for them.

    Jane

    x

  • I don't know why this post only just came up on my radar - but I just wanted to say that my dad has the same thing (sleeping). For example, yesterday we had had a busy morning so he hadn't had a chance to nap (or just fall asleep), so when we had lunch, he fell asleep right in the middle of it, his spoon still in his hand. And that caused me to have a very sweet memory of when my toddlers used to fall asleep in the middle of having their dinner or even ice cream, so I just sat there looking at him filled with tenderness. Funny how many mixed emotions this disease causes...

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