another step

[Kaye31]

ceiling joists are in. Carer can’t use them without a number 2 so struggling as we were before!

He’s not eating hardly anything, weight falling off.

Speech all but gone, understanding anything is just so frustrating and hard for us both. The speak machine is very slow.

Mood is low.

Whatever next???? It’s awful

[Niknak74]

Hi Kaye31

I'm so sorry your both on this journey. I can't give you much advice as my husband who had MSA for 7 years passed away before we reached this stage. I just wanted to say if your taking advice from MSA Trust, palliative care and occ health ref equipment which sounds like you are, then your doing the best you can. It's a very difficult thing at times to keep spirits uplifted and I did this through being able to speak confidentially with my friends and family in order that I could continue to be positive and support Paul. Its really tough for both of you, no getting away from it, but if you can keep supporting him at the same time as looking after yourself your doing a more than brilliant job.

I wish you all the best and keep your head up.

Nicci xx

[AMBD]

We had ceiling hoists installed in bedroom and lounge. I used them regularly by myself with no incidents. I couldn't have managed without them. The portable manual hoists I found such hard work.

[Derkie54]

Hello,

So sorry to read this sad post, we can't do or say anything to help but you're both in our thoughts.

Everyone is going through their own battle with this MSA and it's so draining, it's a daily struggle.

You're doing your best, take care.

Derek

[TK-67]

I'm so sorry to read this. Do you have hospice support for you and Jon? It's so hard at this stage as there is little you. The way I coped was to have a plan - drugs/plan for drugs on hand if you need them + agreement on when to go to hospital and when not. It took away some of the stress when things weren't good. We then just focused on each day, thankful for when it was good, even if was for shorter amounts of time and that helped with the no so good days. It's important to remember you though, make sure you have the support you need, often that's hard with family and friends, I had great support from our local hospice.

[writerinlimbo]

So sorry to hear where you're at. It is truly terrible and such a hideous time for you both. Like AMBD, I was able to use the hoist single handedly without any problem except it took somewhat longer rolling my husband back and forth till the sling was in place. But as you say, carers will only do it when there are two of them. Speech. Ugh. Eye gaze machine didn't help much and soon reduced to blinking - shut your eyes for yes, keep them open for no. Eating and swallowing becomes so hard that the weight does fall off. All you can really do is make them feel loved and cherished because however hard the care is, however exhausted or grumpy you may feel, the love remains a constant. And one day, you will look back on the worst of these days and give anything to have even this time back.