Hi, new here so bear with me. I have posted here rather than in the carers section as I wanted to talk about ppms in particular. My mum is 67. She has had a PPMS diagnosis for 12 years. She has recently had a fall and had a second hip fracture. She mobilises in the house with a Zimmer, wheelchair or scooter if she goes out. My dad is on end of life cancer care at home with sadly only weeks left. He is her main carer. She had 4 calls calls a day for rehab period of 6 weeks which has stopped now. The combo of my dad’s failing health and her fracture has brought her new care needs into view. I live 6 hours away but visit every other weekend at the moment. On the days I am there, plus when professionals phone me, my mum needs help to get dressed, to get up off chairs and stools or in and out of bed. She gets stuck on the stair lift or on chairs. My dad can’t help any more and she relied so heavily on him. She is so reluctant to pay for care for her and she lives in a big detached house. We’ve got a key safe and falls alarm, and a carer 2 X a week to help in the shower. She has a cleaner and gardener now too. She has lost weight, frail looking, she is exhausted and that effects her mobility, her legs are severely contracted but she thinks she will be ok in a few weeks when the hip has recovered but in reality she was deteriorating before this, when my dad’s care ability reduced. I get this must be overwhelming and her whole world is shrinking as I can’t take her out on my own. A family member takes her to the chiropodist or for a hair cut but can’t do any more. She won’t have grab rails or ramps or any daily personal help and I can see the change in her by not getting the help she needs. Professionals keep telling me the situation will end in crisis, a fall or hospital admission but she just keeps saying she doesn’t agree to having to fund care and it should be free. She has sacked the social worker and matron. My dad’s going into hospice soon and she will be alone. I am not forcing her to accept anything but how would you, if you have PPMS like these these conversations to be handled, should I not try? Sorry for the ramble. I admire you all
Hi @lynette.emsley . Sorry to hear about the sad situation, not just about your mum but your dad, too. It’s hard at times when we see our mum & dad struggling. Do you have any other siblings? Or does your mum and dad have grandchildren? Maybe enlisting them with help in persuading your mum to have and take more help. Good luck and wishing you well.
It sounds as though she is completely overwhelmed, poor woman. It’s no wonder she can’t think straight.
I have RRMS and while I’m the same age range as your mum, am not in such poor shape yet, so I’m not the target audience for your question, although I think you’ve worded it well. So I’m going to answer a different question.
For what it’s worth, your family has so much pain and crisis to deal with that I would concentrate on your remaining time with your father for now. Your mother’s problems will still be there when his life has drawn to its close. Deal with certainty for now, and that’s probably more about honouring your father‘s remaining time and helping you and your mum through that as best you can. There’s a whole load of trouble ahead and much uncertainty too about her future needs, no question, but you and your mother have far too much on your plates to deal with that right now. In the meantime if there’s a crisis in her health, there’s a crisis, but it won’t be anyone’s fault, least of all yours. One thing at a time.
Totally agree Alison. xxxxx
Oh wow, I am so so sorry about your poor fathers diagnosis, i agree with Alison you need to spend time with him right now to say your goodbyes.
YOUR MUM. She is totally overwhelmed and in huge crisis, she should be in hospital or respite centre. She is just lost who wouldnt be.
I have had PPMS since 2007 still have mobility, but as time went on i relied on my hubby just a bit, he made me a few meals, checked on me, but i was fine overall still mobile but in the area where i was slowly progressing.
one day he went off to the IOW to check on a bungalow for us, we were going to retire there. he came home on thursday and passed away on the tuesday with sepsis.
My life fell apart. I didnt know what to do i still dont. his death i just wanted to go with him. My illness has slowly declined.
YOUR MUM IS GRIEVING she just doesnt know what to do or where to go. Just sit down and take a deep breath yourself you all are grieving.
Ring the adult social services in your area and talk to them, they will advise you what to do, and they will if they think its necessary send a social worker in under a guise, and talk to her. You or someone needs to become an LPA for your mum. Lasting power of attorney. this will give you rights. but leave all this now, let your mum alone, let her grieve and be with her husband who i expect she has been with a long time. try and get them together to spend the last time with each other.
this is the saddest story i have ever read. I know how she feels, but its worse for her as she has had to see him deteriorate.
leave her alone but support her, talk to her, talk to her about her life with your dad, where did you meet him mum, etc etc, show her photographs of family life, and cuddle her and your dad, get your family together to be around more this is a terrible situation.
does or will your mum have to pay for her care? if so call it a personal assistant. mum why not have a PA, THEY can take you out etc. but her head is all over the place and so is mine just reading this.
all i do every day is think to myself i will be glad when i can leave and be with my hubby again, i want to give up but i have my dog who needs me, he is 15 once he goes i am going too.
your very brave and caring, but i agree with Alison your dad is the most important thing at the moment.
i am so sorry for you all. my lovely hubby mike a few years before he left me, the year before after my mum passed away i got my diagnosis. xx
YOU HAVE A LONG WAY TO GO, you will then have to get her through the funeral, thats if she makes it. xxxxxxxxxxxx hugs
Oh Alison, I am so sorry for the sudden loss of your hubby who seemed amazing, and those retirement plans too. I love your photo! I am blown away by your so very considered reply. I am so glad I reached out, I hope I can stick around as I navigate what may help my mum. PPMS just doesn’t seem to get as much attention does it?
Thank you for your reply. You are correct. We all had a lovely normal day yesterday looking at my wedding album, watching a movie and eating ice cream together. It was great just to be together.
I am the only one, my son is 16, I bet she’d listen to him, he’s her whole world! Thank you.
Thank you for your kind message. I am very sorry that you and your family are having such a difficult time. I hope that you can share more of those moments of quiet togetherness.