For last 4 days I've been trying to look after mum even took two days of work. But I noticed lately she has been choking / randomly burping and sometime pulls at her own hair. Its 2am she is wide awake and pulling her hair.
SALT came to see her last week and they said she is fine but now she chokes badly that she vomited .
I am scared to leave her alone incase she chokes. But tomorrow have to work, and am so exhausted.
Please advice , give tips....
Dear Xaiwal ,Am so sorry about what your Mom and You as her caregiver are experiencing ! Since I'm here in the States , not the UK I can only sympathize , but I bet that there are plenty of experienced PSP caregivers on the site here who know how you may be able to get some effective help to provide skilled care/Hospice care for your Mom. And if I remember correctly from my reading on the site , there's a PSP Association in the UK who you can call and get direction from ; at least I'm hoping !! I would also hope that you have a Dr. who can be of assistance ! It would be great if there are any other family members who could be called upon , though I know that may not be the case. Hang in there 😘❣️
Best of luck to your Mom and You!!
Love ,
Elise
Hi again. I replied to your post a few days ago. Your mum has a dementia diagnosis and now PSP and it’s clearly overwhelming for you. I can understand that completely. The choking resulting in being sick is actually better than not been sick as it’s better out than in. Coughing up mucus is better than swallowing it. When the Salt practitioner visited did they help you understand what foods and liquids were best for your mum as they need to be ahead of the progression and swallowing is going to become a major issue. I hope they understood she has a PSP diagnosis and not just thinking she dementia. Ring them back if you are worried as they have a contact number on paperwork they will have given you. You mentioned you have some care in place but didn’t say how much. It sounds as if you need more help. Have you had a social worker visit and assess your mums needs ? The social worker should do this and help you arrange a care package to keep her safe. Sorry I’m asking so many questions but there is help out there but the challenge is navigating the system. As suggested by others in your last post please phone The PSP association as they have immense amounts of information and can help you contact the right people to get help x
As she’s only just been diagnosed are you more stressed now you know what’s wrong with her? I panicked a lot to start with, reading about the illness. It’s so hard to know sometimes too much.
As others have said being sick is a good sign she has the ability to clear her throat. My Mum had periods of coughing not working and it’s a risk, but in her set up we have to accept and hope it isn’t an issue.
Have you got any carers set up? To help? Have you contacted Social Services or your local hospice who now you have a PSP diagnosis maybe able to help?
It might be worth having some care put in place for days you have to go into the office?
Sorry to hear your mother is deteriorating so quickly and the current symptoms must be quite distressing. The advice from the others is sound.
I would add that you have done so much for her and she is lucky to have you caring for her.
If you ever feel like it is getting too much and you want to consider alternative care arrangements, please don't feel any guilt. Your mother would understand. Be kind to yourself. 🌻🫂
Have you heard of Crossroads care? They are volunteers. I called them when my Dad was going through a difficult patch and was getting up all night and l had to watch over him. They came and did some night shifts so l could catchup on sleep. My experience with PSP is that there are waves of behaviour that come and go,
Hope you get some support soon,
But just to add having read the other posts you should have a social worker who can put a care package in place. It’s too much working and caring, l did it too but had a brilliant carer who ended up coming in 4 times a day.
Call the PSP association, they are a fantastic support and can even make enquiries on your behalf,
I'm sorry that this disease has visited your family.
I will just offer advice on the hair pulling, if your mum has long hair, arrange for a mobile hairdresser to come and give her a nice neat short cut. And then maybe get a silk hair bonnet that you can fasten on, or make difficult for her to remove. Pulling hair can cause scalp sores and it's just one less injury a psp body needs to have to deal with. Also a shorter haircut can make shower and drying time quicker, which is better especially in the colder weather.
I know it looks different and maybe not what was your mum's style but there comes a point where you are fully in charge of health and safety and it might help with comfort.
Thank you all for your advice and support. Mum is little bit better but in second round of antibiotics, she has few hours that are good others tough. But she is eating ok and startomg to manage her choking to some extent. I do have carers they are private and don3 calls a day. Mum doesnt qualify for social care . But as she has progressed , to move her we need two of us, I cant afford to carers per shift , so I help out, work and go crazy in process.
I will look into crossroads , hopefully there will be some help, but usually the volunteer organisation say am not qualified because I have carers and i work do I can afford them. But that doesn't mean it gives me time. I work from home mainly, very rare I go to the office, so all the dosotoct nurse , go visits etc i have to manage and meet them during the day and deal with mum sickness.
At night I dont sleep well, either am catching up on my admin or errands, or thinking what I have to do tomorrow an dget all anxious about it.
I try to carve up time for myself but as carer need two people, am the one who is doing it my family are not very helpful, sometimes when I expect them to come iem her son, he may not show up and we wont hear about it
So I have stopped relying on them all now.
And amongst all this , I've not had time to process my emotions, my mum is deteriorating, am losing her and nothing I can do about it , no one to talk about it , and all I do is deal with day to day madness .
Oops!
Care options? - Refused CHC - dad cares for mum 24/7. 
Quick response needed if possible. 
End of a Journey
