I'm Jan's Carer she has MSA she is now very ill she is not in pain however she can't move from the neck down and cannot talk or even make a noise! her hands are like fists all the time, she can only eat liquidised food about the amount a small child eats as it hard for her to swallow as her tongue doesn't move ( she does not want a PEG) Jan was on medication but this was making her drossy she has not taken anything now for 8weeks+ and she a lot brighter for it and has No pain other than her hands sometimes
I have a kind girl (Glenis) come to care from 11am-3pm 5 days a week and I do the rest ,I also work I run a company (MD) and employ 19 people however i manage to get home 3-4 time during the day just to make sure she's ok!
A Matron (Kate ) super women (she looks like her) comes once a week to check on us both!
My day starts at 6am every day I wake Jan who sleeps in another room on a special air movement bed tilt the bed up a little then put the tv on in her room I then after my breakfast give Jan a little juice then go to work I then come back at 10am to get Jan showered dressed and down stairs (all the lifting is done by myself) other than stair lift. I then put Jan into a Reclining Chair where there's another TV 'I then try to feed her some yogurt usually then Glenis turns up to continue I go back to work!
Thank for reading so far
PS My other love of my life are 2 Manchester terriers with out them I would be lost. Barney & Pepper
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Bruce7
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Hello BruceWelcome to this forum, I noticed that you joined today. It's so good to hear such a positive attitude, we always say there's no point in making a bad situation even worse by not being positive!
I couldn't see where you live, but if in the UK, you should try and get the occupational therapists to recommend some lifting equipment for you. I look after Jackie by myself and we have resisted using lifting equipment until recently. A very painful back has reminded me of the risks and we have now started to use lifting aids to a greater extent.
It's so good to have you on board and look forward to hearing from you in due course.
Hi I've got the Lifting aids But they are not practical Jan is totally incontinent so how do i side the harness under also she is almost in the curled shape ridged then showering every day it would just take too long
Like you I'm 66 and I have a small terrier who looks up as if to say what's going on.
My wife always took him out but that's not happening now.
We tried the lifting aids and came to the same conclusion, they are large and not very practical (for us anyway). When L needs the toilet we found that by the time I got the equipment in position it was too late. I just lift her on to the commode when she wants to spend a penny now.
We have one in the lounge and one in the bedroom.
You're doing a great job looking after Jan ............keep going Bruce !!
It's a very friendly forum and people are happy to share their experiences so if you have any specific questions then just ask.
Thanks derek Jan wee’s on pads in bed and on the sofa/ recliner she only goes to the other once a week!!!
She has to have a Enema ( hope I’ve spelt it right) inserted by me then I carry her to the loo v quickly!
Then up to 45 mins later after checking many times I have to force it out it’s a nightmare , the morning of this ‘said deed’ I pace the house crying trying to pluck up the courage to get on with it it’s a living hell
My partner is 53 and has late stage MSA. She has spent the last two years incontinent and was wearing "Depend" pants (better than the supermarket brands) but also struggling to get to the toilet with only me to help her.
She recently had a catheter fitted and this has helped enormously not just with the moisture lesions and the need to visit the toilet but also just the amount of time it takes. It was also much less stressful for her. Very worth while looking into this.
They are a bit weird to begin with but very easy to manage, once you get the hang of it, particularly if the volume is low.
The district nurses (in the UK) fit and monitor them and provide supplies and show you how to change bags.
She also only went for a No.2 about once a week and this was very traumatic for all involved and involved warm water and rubber gloves. We had to visit the toilet many times because she has severe "coat hanger pain" and cannot sit on the toilet for more than 10 minutes at a time.
We found a daily dose of a mild laxative helped with this. Don't be tempted to use a strong laxative, that will work but the results were not easy to cope with.
Unfortunately she has now become much more ill and struggles to move, speak and swallow and she has moved out and into a care home as it had become dangerous for both of us for her to remain at home with only my care.
I too am a Director and run my own business and was also her only carer. This is hard and just wanted to say I understand what you're going through. Luckily I have an understanding business partner.
We tried to have carers in the house twice a day to help with showering and toileting but they were fairly useless as they simply didn't understand the disease. The first thing they said was "we thought you had MS", which granted is a bad thing to have but not at all like MSA.
Our Parkinson's nurse and OT helped greatly with training the carers when they could and advising the providers of the requirements.
They have also just trained the staff at the nursing home as they too were completely clueless about MSA.
Hi LiamThe trouble is We have gone Down road & Jan Wants None of it!! Jan a couple of years ago went into a Hospice to have her medication adjusted as she was on quite a few and I/we couldn't get the Balance right ! however all they seamed to do was to put Morphine patches on her to keep her sedated (she was like a zombie) I couldn't wait to get her home and your right they didn't know about MSA , I took the patches off after a few days she was a lot better . Don't get me wrong they were very nice people But!!
You say your partner is going into a hospice, I just can't let Jan go i'll be more stressed that I am now,
I'm going to try Baby food to see if she can swallow that.
I understand. My partner is waiting for a hospice place, currently in a normal nursing home. I obviously didn't want to let her go, but I was also feeling that I could no longer give her the care she needed. We have a teenage son living in the house and the disruption of nurses coming and going was having a big effect on him.
She was also terrified of our son finding her dead, which I can totally understand. No kid needs to see that.
She has Oramorph for when the pain gets too bad on an "as and when needed" basis which works quite well. After her re-diagnosis she reduced her Parkinson's meds a little which helped with low blood pressure events but she feels they still help her overall.
She is also on Gabapentin for the "coat hanger pain". Again this is a tricky one to get dosing right, but I believe she feels these have reduced overall pain levels but they take a good few weeks to start working.
Baby food could work. I used to just blend various foods. We found "chunky" soups blended were quite good, they are less runny when blended and you get quite a concentrated mix of food that way. She also liked "ReadyBrek" which is quick to make and easy to vary the consistency of.
Welcome Bruce to the forum. It sounds like you are doing a fantastic job and have a good routine. I hope you manage to have some time to recharge your batteries. It sounds like you get some joy from your dogs Barney and Pepper. We don't know what we would have done without our dog Max through this lockdown.
I feel so much for you and Janice. What a cruel disease this is and she is so young. My husband is 76 as am I so we have been fortunate in having some good retirement years before wheelchairs etc. I cannot lift my husband so we are using a Sara Stedy for moving from one place to another and this is ok as long as he can pull himself up and weight bear which is ok so far !
Hi Bruce. I wonder if it would help to contact the local hospice, as well as support for Jan (they may be able to offer additional care options too) they can also offer you support. Ours has been a godsend for our family?
Hi I have done but they do see the issues and manual lifting was the best all be it 2 people would be better however I don't have that luxury when needed
Fortunately Jan is v quite at nights as she can't speak or make any noise (only when she dreams some times)even though I still get up to make sure all is okAs for a Marie currie nurse I just can't even think about it as I would feel she was coming to the end also I would be thinking that's what Jan would be thinking, Hope you can understand that, What no one can understand is that she is taking NO meds now No pain other than hands which she had while taking meds! The Trouble with MSA no one knows enough about it to prescribe The Right Meds!
Hi BruceI fully understand the challenge with starting to use MC , we had the same conversation but it was resolved by talking it through and the emphasis that they were there to help me get a nights rest
Im really pleased to hear you get a proper night sleep. I found that part very hard!
Thanks To get Jan in and out of a car is too much of a job I've tried I once took her to Greece!!! and the dogs on my own now that was life changing I drove all the way there and back, she's more ill now it would be too stress full for both of us, I'm fortunate to have a large house with nice gardens when the sun comes out then she may be able to watch the dogs playing
Hi Bruce sounds like you are doing an amazing job and have a good wee team around you to help. So sorry to hear about Jan she’s just a little older than me, how awful for you both... My mum just turned 70 and MSA is a very recent diagnosis but had someone had uttered those words a year ago then we would’ve known that it was that and not Parkinson’s.. mum is still on double meds but a few kind folks on the forum have suggested that her PD meds could be acting against her, she’s certainly not getting much relief from them.. as I said in a previous post, we’re taking each day at a time. We used to love our spa breaks away together but mum is just too ill to even contemplate that right now. I hope you are making time for yourself too, I bet your doggies are a welcome distraction. I bought mum some headphones recently and have downloaded audibly so she can listen to stories and that seems to be making her happy and helping when she gets anxious, it may be something you’ve already done for Jan but just another suggestion for you.
I've been looking after my Sue for near 12 years now and have started 2 companies from scratch with one now have 10 in the team at the same time.
I have been very lucky with the aid that has been offered, we have accepted and utilised, otherwise, I could easily say that my Sue probably wouldn't be here now.
I've used Social Support from the council, Neuro Nurses, Occupational Therapists and more.
Sue luckily for me has accepted that I cant do all this on my own and in fact is grateful we went this way as she knows I am not overdoing myself and this can keep an eye on her all the time. We have carers visiting 4 times a day to get her up dressed washed fed and comfortable. I still look after the major things but this allows me work and social freedom.
What I am saying is, ask for HELP all the time, not just for Jan, but also for you.
Talk to all at the MSA Trust as they have way more knowledge and experience of where help could come from, but the hardest part of that process is agreeing and accepting that it is needed.
Keep up your valiant efforts and keep in touch with us all on the forum.
Paul,Part of my problem about getting help is ME! I feel that I'm passing the problem on to someone else and that I'm the only person in the world who knows what & how Jan is feeling
Also when I did enquire years ago I was told that it could be a different person(s) each time and couldn't say when or what time they my turn up! Male or Female. I'm very much in love with her and I Just can't take that step.
I have to agree that making that first step to allow others to look after your other half is the hardest thing, as you do feel like you are letting go, or giving up... But in letting go you release your time to "manage" the situation...you have to become a life manager.
Managing health professionals is not the easiest but once you build a rapport and trust it does help.
For your own health and sanity, you will have almost certainly have to organize and take the support eventually. Please consider in your plans the shock to you of you not being able to look after your Jan due to ill health, both even more of a shock to Jan.
I try and plan for every eventuality and I hope I am not coming on too strong.
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