Forum

New member- support for care & MS

Hi everyone,

I am a new member to this forum. My father suffers from MS & has done for 10+ years, and has lived and tried to deal with much of this on his own, he is 57. I guess what I am doing is seeking for help and advice in desperation, to those who suffer or support others who suffer from MS.

As I said above, my father has tried to live alone with his condition since he was diagnosed, and myself and my sister unfortunately do not live very near, but are doing all we can to help him. Until recently, my dad received an opportunity to be given the chance to live in an extra care/ assisted living environment, where he could potentially have been cared for and become part of a community where the residents participate in many social activities together. This particular environment would have been immensely life changing for him and to manage his condition, to have a better quality of life than he has now. The opportunity for him to be offered a place was pending on an assessment he would have to do. Meanwhile my father has been in hospital for the last 3 months because he’d been so unwell and had a clear deterioration in his condition. It took us a great effort to organise between myself, sister and the hospital to get him there to attend the assessment, which completely exhausted our father after the assessment had finished. We were unsure of which way the outcome could have gone, but unfortunately my father was unsuccessful in gaining a place to live in this extra care setting. The overall outcome of this would appear that the extra care place, were not willing or prepared to meet the needs of our dad. He has many needs, with things he can’t manage on his own anymore and now needs help to do these things because his MS prevents him from doing it. And so we find it sad that this potentially supportive and safe environment who promote a persons independence, are not willing to support the needs of somebody who suffers with MS, which leads to my question, of well if this supported living environment isn’t right for him then what is?

I wonder if anybody would be happy to share their thoughts/ experiences, or if anybody has experienced anything similar to this? And how are people with MS able to get the help and support they deserve?

Any help & advice would would be greatly appreciated.

Many Thanks,

Hannah

I know the sort of place you mean and that level of care probably would have been okay. However it sounds like his health has declined, to the point where an extra level of care is needed - possibly in a nursing home.

Where either of you with him when the assessment was made? Was it in his present home or in hospital? Does he have any mobility?

My own mother had to go into a nursing home. She didn’t like it, didn’t want to go, but her health had declined and she could not walk or bathe herself or toilet herself. At that level, a nursing home is best otherwise there is the risk of infections, which crop up again and again in the elderly.