Hi! I’m new so please bear with me. I dont know if I’m looking for support, advise or just to rant!
My auntie was diagnosed 25 years ago and is now at secondary progressive stage. She is only in her early 50s, lives with her husband at home. My uncle works full time and my auntie has carers attending 4 times a day to help. Unfortunately, we have landed on a bad company and several health care professionals have lodged safeguarding issues with the local social services. My uncle finds it hard coping with my auntie as she has zero mobility and has lost nearly all her ability to speak. They are no longer happily married, more sleep walking through life. She hasn’t been outside for 7 years as she has no access out of the property and is living downstairs in the front room. My uncle says he is tired after work and cannot help because that’s the carers role and what they get paid for.
I obviously stepped in and took over with supporting her. It has been non stop for 12 months. She hasn’t seen so much as a GP for 7 years let alone her MS nurse. I arranged carers 12 months ago and from then everything has gone down hill. I have arranged occupational therapist who have provided much needed equipment. They were financially assessed for home renovations such as a ramp and a lift but they had to contribute so couldn’t go ahead. I have arranged pain clinics and MS nurse appointments and respite and a social worker and speech therapist and care line. The list is endless. My auntie forgets that she no longer has mobility so is often found on the floor with damage to her catheter. The carers call me to help as they have other calls as does my uncle when he finishes work. I live 20 mins away, work full time as well as being a single parent. I obviously don’t mind going to help (neither her or my uncle will press the care line button!) but I am at a point of exhaustion. I get at least 5 calls a day from her health care professionals and social services from the safeguarding complaint and then 9 time out of 10 I am called to help on an evening because he can’t help her. I just feel burnt out and I was so close to saying “ you help your wife im done!” But I really can’t do that as I know nothing will be done. I don’t resent my uncle. I know it is hard work. Especially working full time too. But I just feel like I’m at breaking point. I know I have to keep going and I somehow find the energy every day but I’m worried that energy will burn out! I feel so guilty for being so close to just walking away and being a real neice who just pops in for a coffee and a chat rather than popping in because we have someone coming for an appointment that day. I just feel so alone in this and so so burnt out!
Oh poor you. No wonder you’ve signed in with the user name Stressed. I do feel for you.
There’s no real advice I or anyone else is likely to be able to give you. We can only speak from our own experience and your family is totally unknown to us as are you.
However as a quite significantly disabled person with MS, I would absolutely hate to have put anyone family or otherwise into the position you are in. It seems to me that you cannot continue as you are. Having to work as well as be a parent means you can’t give your aunt as much of your time and energy as you have been.
Is there any possibility of having a family meeting, maybe with other members of the wider family? Perhaps there are other people who could share the burden with you? Your aunts MS nurse could give some input as to where support can be reached. I understand that your uncle doesn’t feel that he can help his wife after having done a full days work, but is it realistic to expect you to do the same?
I’m sorry I can’t be of more help. Just know that we are available if you need to let off steam, rant, complain and have some understanding of the dilemma you are suffering through.
Sue
WOW! You are entitled to a rant! I take it they have no other family and you the only extended family - if not, get a family meeting together and work on a plan that gets you to the niece who does enjoy a visit, a coffee. As for your uncle - he might benefit with somebody to talk to and recognise he’s struggling too.
Keep ranting - you seem to have got the professional teams in and so hopefully you’ll feel a difference and have got space for “me time”
Bless you & phew what a lovely niece… Unfortunately as an Mser it’s so hard for us and our loved ones to deal with this forum is really a brilliant place to use whatever you need 
Hello sweetheart. I was so incensed to try to help when I read your post. Of course you feel at the end of your tether! Who wouldn’t? It is high time to get the social services involved again.
I am the caree in our family. My hubby did everything for me by himself for 11 years. He was breaking under the pressure, so I insisted we got carers in. Over the last 10 years, I have had around 20 carers…some direct and 4 agencies. The agencies have never been any good… management issues, rather than carers. Had to fire them!
It is so hard to find the right carers, as you know. But social services may be able to help.
Of course it doesn’t exactly entice applications when they don’t get decent wages. I do some topping up but no more than I can afford.
I wish you luck and am sorry I can’t offer you a better solution.
Love Boods xx