Hi all,
This is my first post here. I am hoping to get an idea of some other people’s experience of the level of healthcare assistance that has been provided to their loved ones in the latter stages of MS.
My mum is now 59 and was diagnosed around 20 years ago, she is now completely bed ridden only leaving the bed via hoist for showers and the occasional trip out with my dad in her mobility vehicle. She has a care package provided by a local home care company and is visited 3 times a day. This package works well for my mum and the carers cannot be faulted for their care and dedication. Where I think my mum’s care is lacking is in the provision of assessments of the disease and what medications she is taking and the effects (good or bad) of those medications. My father is my mum’s primary carer and I really do feel that he has been left to fend for himself somewhat in this regard. He is the one who has to request changes to drugs and possible other solutions, he does not seem to get much help to do this and it seems a constant fight to push for what may be needed.
Is this normal? Do other carers have experience of having to constantly push to have their loved ones assessed? Is it the case that as my mother is now deemed at the end of life stage, that health professionals will simply look to maintain a level of comfort rather than assess for possible complications. My mother’s swallowing is deteriorating quite rapidly now, when does someone asses for that? It just seems that the whole approach is very reactionary with little planning for what is to come. Is this a resource issue or just ‘the way it is’?
Thank you very much for reading and I would be grateful for any replies or guidance on this.
Ryan
Hi Ryan, I saw your post on the other forum and followed you here.
It is so sad to watch a loved one deteriorate to this stage of a chronic illness.
I have PPMS and carers coming in, plus my hubby is my main carer.
As regards your mum`s meds…I think it would be either her neuro or GP you should be asking…or your dad I mean.
Does your mum have district nurses coming in at all? If so then these persons would refer her for re-assessment.
Regarding her swallowing difficulties…SALT…speech and language therapist look at that. Ask GP for an urgent referral.
Maybe your dad could consider speaking to the GP re palliative care?
I dunno…as \I said…a tricky one.,…and sad too.
Boudsxx
Hello Ryan, my wife had PPMS and your story is similar to ours. Boudica405 has great suggestions for you and your Dad. One thing that gets overlooked at this time, is your Dad is most likely in need of respite time off - an hour, a day. But I am sure it will be hard to get him to take the time off. He loves your mum very much or like a lot of men, they just walk off.
My wife had three son’s who were loving kids until my wife came down with MS and then they disappeared even at the end when she was in Hospice. They resented the updates, would not call or come by, stopped contact on her birthday and other Holidays. I do not know if you are the only child but anything you, family or friends can do to get you dad out of the house for any time would be a blessing to him whether he acknowledges that or not. Try to spend time talking with him about any interest he had. Try to take his mind someplace else for minutes, hours or days. I am sure he is reluctant to leave her but he needs a breath of fresh air. I know what he is going through and I did not trust other people, like nurses to be with my wife. I asked questions and watched their every move like a hawk.
I wish I had more so say, Boudica405 did a great job regarding options. When my wife passed away, I knew I was going to die, and I wanted to. Your dad is going to need his strength more down the path. Be there for him now and later. I wish you all the best. Contact me anytime and I will respond. Always, Jim
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