I have looked after my mum for 3 years since my dad died. mum was diagnosed about 5 years ago. I do have careers that help me now as I cannot do it by myself anymore.
We are now feeding mum with a syringe as she cannot open her mouth, she has refused a peg feed but still wants to eat, at the same time she says she does not want to be here anymore.
I am finding it difficult now because mum still thinks she can speak and gets annoyed that I don't understand her yet she is just making a moaning noise. I know she is still with it, but how much is hard to work out. Sometimes she is quicker on the mark than me!
Has anyone else been through this situation?
It is driving me crazy at the moment, I used to have so much patients but now I find I just get very annoyed and I feel so bad.
Does anyone have any advice? palliative care are involved and tell me to walk away but that is very hard when you are the only persons way to communicate and you see the person you love trapped.
Mum has become very stubborn and fixated on things, she won't let anything go, which is very difficult. I never know what is really important or not because it seems everything is the same to mum.
Is anyone else experiencing this or has?
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Victoriab
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hi victonab i am sorry that you are in the position you find yourself now i think you need to be away from your mum for a while to get yourself re-- energised if there is such a word i can understand how mum feels not being understood i get this from my wife she reckons i mumble
which i cannot help im afraid \\\it made sense to me i kept thinking she needs hearing aids but i was wrong again her ears were tested and they were fine it was just the old mumbler here \\ but i know we are very trying and can get on each others nerves so i suggest that you have a break from her for a while before you say something that you might regret later on \\ because we may look a little confused and may not say much but inside we know whats going on sorry i cant be anymore help mate but good luck and keep loving your mum she will need that more as the time goes on and feels wanted but for your own self i would still take that break peter jones qld australia psp sufferer
I know exactly what you mean..My Mother in law has PSP and she too cannot speak and mouths words which make no sense..She is finding it very difficult to swallow and looks like she is crying but is is more of a frustrated wail ...Sometimes when i go to leave (She is in a nursing home) she hangs on to my hand and just wont let go..It is so pitiful...She weighs only 44 kilos now and is a tall woman so i dont know how much longer she can go on like this..i know she would like to Check out if she could..It is such a cruel condition...My Ma in Law is also very fixated..She was a OCD hoarder when she lived by herself which in itself was a problem I think sometimes she is worried about what is going on at her house as she has no control over anything any more...I feel for you and hope you manage to get some respite..Please look after yourself or you will go nuts...Take care love..
I find myself also frustrated at times and my wife is not as far progressed in PSP as your mom. I've accepted the fact that I may say things out of disapointment or frustration and have explained that to my wife. Hopefully your mom will understand that you get frustrated NOT with her but with the awful PSP that is in her body. We are all humans and no matter our love for them we can still get upset/frustrated at times. We have to accept it as one of the tolls that PSP takes on us as caregivers. PSP is a difficult war and it inflicts injuries on us caregivers and eventually death to our loved one. Stay strong and try not to dwell on those moments as they are only a small blip on the life of your mom and she probably won't remember them later.
There is no real end stage as such, as the person with PSP can go on for many years with PSP, especially with a peg fitted. However as the years pass so the disease becomes progressively worse, and speaking and eating eventually becomes almost impossible. I would say that without a peg you are coming close to the end, especially when you mentioned that she is now unable to open her mouth.
Not opening the mouth could be because of muscle contractions to do with the jaw and neck? Muscle relaxants may help this? I would check the insides of the cheeks for oral thrush as this may be hampering the opening of the mouth. Sometimes I would put a small amount of ibuprofen topical gel on the jaw muscles which may have helped a bit with regards to the jaw locking problems. Maybe using a board or visual props for "yes" and "no" questions, held up in front of her line of vision which she can point to, may help you maintain communication with her too?
Unfortunately, all the things you mentioned sound very familiar and my thoughts are with you. Also you must have done a good job of caring to get your mum to this stage in the illness.
It's so hard not to get annoyed and frustrated when dealing with PSP constantly and we all end up feeling guilty about the way we react to sufferers.........I too was told to walk away but as an only child I have no one else to rely on and mum needs to see me each day if only for a short time....she is now in full time residential care. I have had to educate all the staff in the home as they had no knowledge of this terrible disease and struggle to understand her needs. She is losing weight alarmingly ...now only 42 kg....as she throws most of her food away. She seems not to be able to stop herself from doing this and blocks the loos up all the time yet when someone sits with her she will eat. However, the care home say they don't have enough staff to sit with her each mealtime.
With regard to communication ....try the hand squeeze.....one squeeze for yes....two for no. This seems to work for us.
All I can say is how true everything that has been written is. It is so hard to take a break, we all feel no one else can care for our loved one they way we do, and who else can understand their needs?
My husband isn't anywhere near the end stage, but watching his mobility, speech, independence and communication ability all disappear slowly is heart breaking. I do get annoyed with him at times, especially when he says he can't move his feet or his left arm, but as soon as he sees the doctor or physiotherapist he is able to move albeit with difficulty. This does annoy me, but I know deep down it all takes a great effort on his part.
Victoria and everyone else, small breaks do help.
Take care
Peter 2.
I understand how you feel. We had 4 carers coming in to help my sister and I but in the end we had to resign to a care home and going throught the education process of the staff and all over again when mum moved to the nursing floor. She has also refused PEG and NG but we didn't want to prolong things with those anyway. She has been coughing a lot more with food and drink since being very ill 2 weeks ago but I am hoping it will be stable for a while. She is still eating well when she has a 'good' swallowing day but with tiredness she sometimes struggles. I can tell she is fed up as it was her last pleasure left in life other than visitors and going for a ride in her chair.
If you are in England there is a service called Crossroads where a person will come and keep your loved one company while you do something for yourself-my mum used to have this for Dad when she was caring for him and even sometimes went upstairs for a nap to catch up on lost sleep. Unfortunately when Dad passed on her PSP became obvious.
I do feel for you and can sense the frustration that you are feeling. We tried all sorts of things for my husband Chris with his communication difficulties and in the end I found that trying to find a sentence that would require a yes /no answer and then get him to squeeze my hand once for yes and twice for no worked best- not 100% succesful but better than anything else. I too wonder if she has a thrush problem in her mouth and would certainly encourage you to get this checked and would endorse the suggestion to try ibuprofen topical gel.If it helps, good andif it doens't you haven't lost anything.
Some times I found just by discussing with the carers and the GP gave me more answers in how to help. And yes i too used to get angry and frustrated and say things I later regretted. I am comforted by the fact that everybody else is saying the same thing. We are only human and can only take so much.If you can get her into a hospice for a few days it may give you a bit of rest and recuperation time.It realy does sound as though you are worn out.
What i used to do at this sort of time would be to do all that I had to for Chris and then curl up inthe arm chair in his room and go to sleep. At least he knew i was there and this eemed to comfort him.Look after your self 'cos it's a long haul back. I am six months after his death and still trying to sort out my own health problems brought on by lack of self care whilst nursing Chris. My thoughts ans prayers are with you and mum
Hi Victoria, yes everyone has gave good answers, my hubby has one of those programs which is on the tv from a laptop computer, but he never uses it unless pressed too? and he can if he was inclined type messages to me and the TV would talk? but still he doesn't. It seems your mum wants to tell you something but cant, you have to put yourself in her shoes and ask her sentences of what you would need to know if you were her? and get her to squeeze your hand, Ten to one she will have forgotten what she wanted to ask after you start this, so just ask if she has had enough of what your doing. give yourself a brake for a few days respite, your Mum will cope if you tell her, because this carer business will make you insane if you don't. good luck take care
Hi Victorian, I have been dealing with this issue for many years. We first were able to ask questions with yes or no answers and now it has gotten to the point where it is really hard to tell. My experience has been to get up close and remain calm and ask questions in a soothing voice. I can usually tell based on sometimes numerous questions what it is he wants but have narrowed it down to bathroom, pain, music, light, or noise. Music is a God send when you don’t understand and yes explain to him that it is frustrating to him but also very frustrating to you. Be gentle with yourself and him and last resort walk away with love ifvyou can after you have tried all you can. I find you can narrow it down even just hearing the tone of his voice. This is the gift we receive if you can persevere. Not easy, but rewarding. Just a suggestion, of course. God bless and keep you and find loving caregivers that have experience! That seems to be the biggest struggle for me. But now have a few I can depend on, for now.
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