Challenging!

[TK-67]

Thought it might help to hear our experience over the last couple of weeks. Mum is now quite advanced and looked after in a nursing home. She's been there all through the pandemic which has presented a lot of challenges due to the lack of time we actually spend with her. We didn't go into her room for 16 months, now I have 'essential care giver' status, I'm allowed in her room, all other visitors still have to visit by appointment and in a visiting room.

Since being let back in, the home was feeding back that mum's behaviour was becoming challenging and that they thought they may not be able to meet her needs. I was told they didn't think anything else could be done. They had not reached out to any of the support we had put in place.

So with the neuro specialist nurse we tried to get a consultant appointment - we are very lucky that ours is an MSA specialist.

Finally after 10 weeks I got a call. I'd gone through the drug schedule, observed and talked to mum. And the consultant agreed with my thoughts on what could be tried so see if we could make mum more comfortable and was so supportive.

It is so stressful to be so challenging with everyone but I do it because we understand MSA and importantly mum's MSA. I know this is something others also find difficult and exhausting as we're not 'medical' professionals. However due to our situations we have become MSA experts. I feel vindicated that what I was saying was supported by a professional.

The drugs have now been changed and we have everything crossed that it helps even just a little - that's all that is important.

[Derkie54]

Hello,

It's all trial & error with MSA by the looks of it, everyone has different symptoms and vary in their response to drugs.

Hope the new drugs are good for your Mum, give youself a pat on the back, I think you're doing a great job.

How our lives have changed so much with MSA !!

I agree it's all a bit stressful and it's hard to give out advice when we're all on different journeys, but keep smiling if you can

Take care.

Derek

[Hidden]

Fingers crossed for your mum and her meds! I'm relating to what you said. Sometimes I'm a bit clumsy and interfere too much and then feel bad. It's about getting a balance. The professionals who matter come to understand that a 'link' person is often needed with MSA. They don't always have the time, motivation or specialist info, so a coordinating role falls to ourselves.

Sometimes I want to fling my hands up in the air and say please don't expect perfection from me. I've had no professional management training in how to manage people, and I'm learning as I go, and doing my best while being worried about my loved one at the same time.

Some of the language of social care and health nowadays is about working in collaboration with patients and their representatives. There are professionals out there who are really embodying this approach. One of them said to me: we have our professional experience, but you are the expert on your Dad.

So keep at it and may the force be with you! 🙂