Frustration

[Tillytott54]

Hey people,

So my mum has psp,diagnosed 18months ago but I believe she had symptoms a few years before this .

In 2017 she fell backwards down the stairs and broke her neck including multiple other fractures . I was at college at the time as a mature student studying 3 science a-levels and somehow managed to get through it and look after mum. I have since gone one to university and in my first year mum was diagnosed with psp.

Since then I have struggled to stay focused and provide the correct level of care for mum ,I took 9 months out due to failing my first year. I am now resitting year 2 and am due to attend a placement which means I will be out of the home for about 8 hours 4 days a week. My mum lives with me and I am her full time carer,no other family for support.

Adult social services said they would provide 3 half hour calls a day while I'm away however this worries me. She has had about 6 falls this month and I've caught her multiple times and saved her from what can only be described as catastrophic falls. I am petrified of leaving her and she too is scared to be alone for more than an hour.

I am debating of putting university on hold for a bit as good old social service have 5 days to put care in place and as yet they still have not made any assesment ,I'm disgusted with the healthcare system currently and the lack of support ,it seems you have to chase everything ,from medication to OT to care and help. The irony is I am a student nurse 😃.

Anyway just wounderd if anyone has been in this situation before ,do I attend my placement to continue with my future but run the risk of my mum having a serious fall that could of been prevented or do a take some time out and put my mum's life what's left of it as my priority..it's a battle of head ,heart and gut .

Sorry for the long post just so frustrated with this terrible disease and its impact on everyone xx

[NannaB]

Hi Tillytott54, I’m so sorry you are in this situation and you are correct, it is a battle of head, heart and gut. My situation was different as it was my husband who had PSP and I had promised to love him in sickness and in health. You know your mum needs full time help. I didn’t leave work until my husband had been diagnosed for 6 months. It was going home and finding him on the floor that settled it. He said he’d been there for hours. From then on I decided to do/not do things that I know I wouldn’t regret when it was all over, which was 6 years later. I don’t know what your relationship is like with your mum and if something does happen while she is alone, will you feel guilty but will you resent not being able to continue with your career. Social services will not provide full time care unless she is in residential care. Working my notice I had friends that called in regularly but there were still falls. Fortunately I was there when he fell in the pond and through the green house glass.

It’s such a difficult decision to make but I have seen how destructive guilt is when it’s all over. As you said, head, heart and gut.

I hope you make a decision you never regret whichever one it is.

Very best wishes.

[Tillytott54 in reply to NannaB]

Thank you for your reply ,it really is such a tough decision .my mum is my world and vica versa ,I would be overcome with guilt if serious injury was sustained while someone was not present you are right. The system really doesn't work very well ....

Thank you again and it is food for thought .

[AnneandChris]

Hello there

So sorry to read of your predicament. You mention your contact with social services but have you had regular contact with the District nurses? They used to come in to dress the inevitable wounds from the falls thst Chris had. They were instrumental in getting CHC funding to pay for his carers who helped look after him and covered respite days.

Are you able to get your Mum into a nursing home for respite whilst you're on your course?

We found that the falls decreased once Chris used a wheelchair.

Please look after yourself too, caring for loved ones has its own stresses and strains.

Take care and keep on keeping on

Anne

[AJK2001]

It's so hard to know what to do for the best for you both . I was lucky and able to take redundancy to look after Mum, but it was still a really hard decision to take and I still kept some balance as I knew that Mum pre PSP would not have wanted me to give up on my life for hers - she used to say" you have your life to live, I have lived mine" until PSP got hold of her brain and then she wanted the reassurance of me being there, so I had to remind myself of what she used to say. Does your Mum have a falls alarm? It won't stop her falling but at least you know someone would be aware that she had straight away and be able to take appropriate action. You can by them online - Age UK do one.

Or as Anne says, look at respite care.

Sorry no easy answer to this but as Nanna B says I hope you make a decicion you don't regret. xxx

[Mariawatters]

I’m sure your mum would love you to finish your studies ... sorry I don’t know where you live but is there a daycare place your mum could attend and she could come home to you at night . I know we have one here in Belfast ... at least she would be safe and cared for while you study and get on with your life . I find these dilemmas so hard to advise on ... as a mum I would hate my children to put their life on hold for me ....but if you are all she has it’s difficult plus these homes are expensive ..... not an easy one . Please don’t regret whatever you do because you obviously adore her and you can only do what you can do xx