My Mums speech is getting worse, struggling to understand when she does and a lot of the time she can’t. She looks so upset but can anyone explain what it’s like for her in her head. Is she fully aware or just slightly aware
Her mobility is awful but she refuses to stop or consider a nursing home, so I feel as if I’m waiting for her to either seriously hurt herself or worse before she will accept that she needs more than she can have in her flat.
Hi
I posted on here a couple of months ago, you might want to read it and the replies....
I feel for you Kelmisty. I was in exactly the same situation a few months ago. My husband had some mobility but it was becoming very difficult at home and it was no longer safe. His speech was deteriorating too but we could get by. He then fell at Easter and broke his hip. He was in hospital for three weeks and they wanted to send him home. I said no, because by this time we were about to move into an assisted living bungalow. So my husband went in to the care home in the grounds of the assisted living and I moved into the bungalow.
It took a while to get used to it and I have felt guilty for ages that I am no longer caring for him. He wanted desperately to live with me but I just had to say no.
He now has hardly any mobility because of the fall and his speech is getting to the point that some times nobody knows what he is saying. I think he does understand and must be frustrated at times. However he is calm now and I am beginning to enjoy again the time that we can spend together. I pop in all the time and give him breakfast, or lunch or supper. He joins in things that I never thought he would - games and puzzles and singing!
It was not what either of us wanted after only being together for 20 years and about to enjoy retirement, but we cannot change that so I am trying to make the best of it. The care and nursing staff are great and some cheerful and encouraging with him. I have been lucky to find this place.
I wish you and your Mum well, Kelmisty. Perhaps encourage her to think that care is not the end but a more relaxed and safer way forward.
Dear Jak63
Thank you for your story, it’s made me feel better about my mum going into a care home.
She has lived with me & my family for the last 6 years.
She currently has very limited mobility and has had several falls, the recent one last week a day before she was due to go into respite.
Her speech has deteriorated over the last 3 years and she can’t put more than 2/3 words together. Very frustrating for all. She can’t write anytime either as her spelling has also deteriorated. Several scans during the last 2 months which have ruled out MND & Parkinson but possibly PSP and waiting for MRI results for dementia.
Due to respite in July but with a view to be there permanent as it’s become 24 hours care. The night visits to the toilet are taking its toll especially when it’s 3/4 times a night.
It breaks my heart having to send her there & she doesn’t want to go. I’m hoping like your husband she’ll join in activities. It’s a brand new care home so only a few residents therefore hoping she’ll have more attention to start with.
Any experiences of care homes from anyone ?
Hi Martini
I have been so lucky with the care home as I have heard not such good reports of some. If your Mum does get diagnosed with PSP, do as much research as you can on the likely symptoms and make sure the care home does the same. The nurses looking after my husband knew about PSP but had never had a patient with it before. They all took time to research it and are now more than aware of his specific needs and also the direction the illness is likely to go. I could not have asked for me.
I wish you the very best for your Mum and your family.
Thanks, Mum is so anti them but they say she has mental capacity and I just have to put up with it! Feels impossible as I can the with her 24/7 as I have to work full time.
Hi Kelmisty, whilst my mum had some mental capacity the decision to go into permanent nursing home was decided by doctors/nurses - she needed 24 hour care and my Dad couldn’t cope at home, my brother (who lived at home) had just had a stroke and lost the use of his right arm and I am not a carer (ie. I would struggle to provide any care) so a nursing home was the best option for Mum.
I think this is why I have the guilt but at the end of the day Mum is receiving good quality care as often as she needs it, which is what’s important.
A tough decision though ❤️
Hi, I would say she's fully aware like my mom was. We used to practice the alphabet and get her to keep moving her mouth with the pronunciation of letters and words. Keep practicing. It's hard... take care
Hi
I was with carer friends yesterday and we were having this exact conversation. One friend had finally moved her mother into a care home and the other was saying how often her mother was falling and spending hours on the floor until rescued but her mum refused to consider moving into a care home. Another friend had recently had a bad accident herself and meant after 6 years of looking after her dad at home she was having to discuss a care home with him and he didn’t want to go. It seems it takes a serious accident either for carer or sufferer to make the decision for many and then it’s panic stations. Very hard decision. Sorry you are in this situation.
My husband goes for Speech therapy but it has not made much difference. He speaks so fast I have difficulty understanding. So now he spells out few words so I understand the context. He can't write but is able to type out messages on his phone.
HiI have PSP and my speech is poor. Fortunately for me I did manage to download an app onto my phone called speech unique to which I had previously downloaded some 300 sentences and then they were able to use my voice. This was done with the assistance of my speech therapist .I agree that it's a bit late for your mum but I thought that if I mention it then some people may read this for the future.
My mobility is OK atm but I too think that I may have to go into a care home in the future as my partners patience is not good. But time will tell.
I wish you luck x
Is 'speech unique' an Android app, please? I can only find 'speechify' and 'speak unique' on Play Store.
I'm sure "Speak Unique" is the one that can do text-to-speech with an individual voice based on voice banking. It is available on Android.
I have an android phone so I guess that it is. I apologise for not replying sooner x
Hi Kelmisty, I hope this video will be useful for you. youtube.com/watch?v=nX_xwG-...
speaking problems will, generally, result in dysphagia and pulmonary infection.
There are many walking helper. Physiotherapist will be a good option to find the best helper.
Try to read the contribution in this site from rodizio rodizio.
Good luck
Sorry, is not rodizio look for Rodicio Rodicio
Hi Kalmisty!
It seems that PSP-RS patients retain their mental abilities to a very high percentage. In our case, this was almost our case during the 8.5 years that we lived with the disease.
It is possible to delay the loss of mobility through gym exercises and walks, but the progressive loss of mobility cannot be avoided.
As I suggested via internal chat, I have documentation that may be useful to you on this journey accompanying PSP.
Hug and luck.
Luis
Hi, I am writing this from a hospital bed. I fell in the bedroom and broke 4 ribs. My speech has gotten so bad I can hardly make myself understood. Get your Mum the best care you can. I live on my own and I'm very independent, I fear I've left it to late.
Dear Beffazoid122
Very sorry to know about your fall and broken ribs. Wishing you a very speedy recovery.
You can find care, you can write. Just ask for help, tell the hospital you need more help.
My Mum lives independently like you with carers four times a day, but still refuses even though it’s to her detriment.
Speech
losing speech
Deterioration of speech 
Depression in CBD and Speech therapy in non native language
speech
