hi everyone, hope you all had a wonderful Christmas. I have a question! My wife is now at the latter stages of MSA, can’t talk, eat, finds drinking difficult, no mobility, and pressure sores. I am her only carer, I’m 63 with bad osteoarthritis and she is 59. We tried a care agency but they hurt her so badly that was instantly stopped now over a year ago. She can no longer manage on a Sara steady and can’t sit upright on a commode. The question, how do I wash her? Shower is no longer possible so I’m left with bed baths. I should now mention that she can ONLY lay on her back with a slightly raised head as she goes into a choking mode when flat. Same sort of problem if I roll her on her side and to top it off she has pressure sores on her bum which need constant attention with dressings.
Any ideas would be much appreciated.
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Oliverwindsor
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Hi, I’m finding it hard to reply without a tear, to be honest I was giving up, thinking “no help available” I have been told the trust is very busy however, I should have an assessment by the end of April! Our local hospice is aware of my situation and I think! Are trying to help. I had the hospice OT out to me who says there really isn’t much he can do to help with equipment as she is beyond that stage. He actually said don’t use the steady as it’s now dangerous but it’s all I have! I was sort of hoping the replies I’m getting might help me to sway decisions from the authorities to help me.
Hi, just an update on our situation you might find interesting. Monday I get a phone call from the district nurses postponing my wife’s catheter change visit from Tuesday to Thursday (today) so she spent all day in bed waiting for them to call! Not even a sorry couldn’t make it! I had to leave her in bed as my arthritis is so bad today I’m even finding it hard to write this update. Tuesday (2 days ago) I had a phone call later in the day from the district nurses saying they were coming on Wednesday to change her dressings, nothing! Luck would have it that I have been watching the nurses change her catheters for a few years now and have been changing her dressings for months, so I have a good knowledge of how to do it. Just finished doing both myself! Trust the nurses, trust the system! Trust the NHS…. Her GP surgery can’t even get her dressings sorted, I have to purchase them from Amazon! The only saving grace is the MSA trust, thankfully they gave me a cost of living grant of £500 which I put toward getting our car back on the road, without which I can’t even get her out of the house to the hospital. Why not call an ambulance you say, 999! I tried that only to be told there’s a 7 hour waiting time. The local hospice told me the person I need to speak to is on annual leave call back next week!!
I am sorry. This sounds like a really difficult situation. We used to have a carer who worked with me to get Geoff washed . Geoff was still able to lie on his side though which helped. But someone who would work with you would enable you to support her whilst slightly turned so that you can wash underneath her. I would hope that you are getting help managing her pressure sores from the district nurse or the tissue viability service.
Hi Diane, thanks for your reply. You may have seen my reply to Morganthreewheeler about help. The truth being just over a year ago I did get really bad care help and had to stop it! They spent 33mins at my home and the council billed me for seven hours! After I had an assessment so you can possibly see my issue. I have been told I can have a further assessment but it’s not going to be till the end of April, quite frankly I think we will both be dead by then! As for district nurses, joke a minute!!! Yes they do come and change her catheter every month, when I remind them, they do phone and make appointments to change her dressing ones a week, however, they never turn up! I phone and just keep getting excuses, no staff, emergencies etc. I have been changing her dressings. The last visit from a nurse was beginning of November! The catheter needs changing monthly. If I don’t do the procedures it’s not fair on my wife! And before you ask, yes I have complained, a lot of good that has done!! Just to go on a little more, now I’m having problems getting her dressings, the nurses order them but send the order to a distributor not a pharmacy so I’m now making my own! I know it sounds like a horror story but I promise it’s true. Our Parkinson’s/MSA nurse of 20 years left over a year ago as she simply couldn’t cope on her own, now there isn’t one, no replacement!! Basically all I have is the hospice. Her GP is helpful, he phones me every few weeks and with his help I monitor medication, I’ve now got her on oral morphine which helps her sleep. Got to help her now, will chat again. Xx
Your situation sounds hideous, Oliver. So sorry, for what you are both going through.
I know how much care varies around the country but in case this is useful to know, my husband's prime support came from Macmillan (who mostly took over from district nurses) and the council's OT. For last 14 months we had no involvement from Parkinson's nurse, however the Neurology dept's OT referred us to council OT ("they have bigger budgets") and we were supplied with every piece of equipment she thought would help, coupled with visits several times a month to assess new needs and provide training. Most useful equipment was day chair (MND one), shower chair, and hoists (gantry and then ceiling).
Referred to Macmillan by his wonderful neurologist, who were always at end of phone and visited as soon as requested. In last few weeks, Macmillan set my husband up with a syringe driver to handle all his meds and so visited daily to replenish. Also regular visits by their consultants and other nursing staff. You may not have a local Macmillan who can offer this, but to our surprise our neurologist said that some of the charities we thought as specialising in cancer care, extend to palliative care, irrespective of the disease. Also, Macmillan applied for emergency CHC funding on our behalf and approved within 24 hours. While you may have had bad experience with carers, they're not all rubbish and though ours weren't brilliant, they helped me feel we weren't on our own and alerted me to things that needed medical attention, which I might not have realised.
By the way, do you know about morphine patches? Easier when swallowing is difficult and delivers round the clock relief.
Brilliant reply. I couldn’t agree more. I am a recently retired Macmillan nurse and palliative care is not just for cancer patients. I was horrified to hear how much Oliver has to do for his wife. He needs to be her husband not her carer.
Hi, I'm sorry you're experiencing this , you must be exhausted! Do you have hospice care? They could do an assessment and referral for Continual Health Care Funding. My friend has this now and has 24 hour care. I know you say previous carers hurt your wife but not all carers are the same. My friend is also in the latter stages of this disease but with their support, she is able to use the Sara steady to mobilise to her recliner. You really shouldn't be going through this on your own, it's a huge job which is mentally and physically challenging.
Thank you for your input, I have today arranged a meeting with our hospice social worker for this week to discuss your points. You never know! Thanktagain for your help.
So sorry to hear this. I hope that you get the help you are looking for. I am in the early stages (Diagnosed June symptoms started summer 2022) good lucj
Hi, I feel so sorry for you. My only advice which to be honest my wife and I chose to ignore is get prepared well in advance of the future. If you are sure it’s MSA then you will 99% have similar issues. I wish we hadn’t left things so long before taking action.
Golly, can’t you sleep? It’s 3:30am or are you not in the UK! Just sort of proves my point, I’m up most nights looking after her and sleep when I can most days.
We were in a similer position, diagnosed in 2016 and using a Sara stedy. L can also cough and splutter when eating & drinking.
Unfortunately L had a stroke before Christmas and these are the changes we have made if it helps as she cannot use the shower either now.
We have replaced the Sara stedy with a floor mounted mobile hoist which was supplied by occupational health. This is useful as I can lift her from the bed (with some help from my daughter) to a chair which will hopefully help when it comes to bed sores. Bed baths are our only option now using flannels or body cleansing wipes. I roll her on her to her side and we have fitted a bed rail to the bed frame that she can hold on to and it does help.
For hair washing we have shampoo caps which you put on like a shower cap and then massage the head. We also use an inflatable wash basin which has a cut out for the head and it is placed on the bed.
She has no mobility whatsoever so her bed is in the lounge, she is at the centre of things and not isolated in the bedroom. The lounge is the only room she uses now.
I'm not saying it's the perfect solution, it's not but we struggle on and will keep adapting to our new normal for as long as we can.
I hope this is of some help to you, remember you're doing your best Oliver and you can't do anymore than that.
Hello Derek, very similar situation. This might sound odd but is a new thing to me to. Shower caps to wash her hair and inflatable basins. What a good idea, to save me time looking, where from? I’m sorry to ask but does she still have use of a commode, if not how do you get over that? My wife has a catheter but No.2’s are becoming a real problem, especially as she can be sitting there for a couple of hours at a time. It’s often the case that I have to simply clean up the mess in her bed. ANY help on this subject would be gratefully received.
Ask anything you want, we're all here to help each other through this terrible MSA.
I bought the shampoo basin & shampoo caps from Completecareshop.co.uk If you place another order type " Me again " in the coupon box and you will get a discount. The cap is a single use cap that washes your hair without water or rinsing then it's thrown away
With regards to the commode, no she cannot use it any longer, I just have to clean up in the bed after. I purchase AMD super bed pads from Assured Mobilty in a pack of 30. These are placed under the patient and contain any accidents that may happen then just throw it away. Certainly beats washing bedsheets repeatedly. They do a 60 x 60 but get the 60 x 90 they're better.
Have you had a continence assessment ? we had one and the Attends continence pads are supplied free to us now together with the stretch pants. If you haven't speak to your GP or district nurse.
I prefer to buy disposable things now that I can just throw away.
Regarding bed sores, after changing and cleaning I always use Sudocrem antiseptic healing cream from the chemist and for more angry areas use Medi derma- s total barrier cream but this is more expensive .
Do you use Wendylett sheets ? these are are satin sliding sheets. When the bed is raised at the head end L tends to slide down the bed and she can be pulled back up the bed without a bed remake. Occ health should supply them if it may help (after they have done an assessment).
Nothing seems to be automatic, you have to keep asking for help, tips and advice and as carers we have enough to do helping our partners.
I feel for you and know what you're going through, if I can help with anything else just ask. We could send private messages but I think it's better on the general forum as the info may be of help to others.
Derek, perfect! Just the answer I’m looking for, to be honest I’ve been scratching my head on how to do her hair and “clean the mess” it’s perhaps a little easier for the simple cleaning procedure, however, I was sort of thinking that there must be some other way of “not using” a commode. What you are doing is precisely what I was thinking, but is that the way to go? Clearly it is the way forward, now the whole thing makes more sense. Sometimes just asking questions is the best way forward, obviously one tends to come up with their own version of the problem solving but it’s nice to hear from others that have already solved the situation and agree with your way of thinking. You talk about keep pushing, frankly I gave up, just continually not getting anywhere becomes upsetting and makes me angry, especially when you see other people with hardly any difficulties getting everything they want and more and all we get is fobbed off! I had a rant at the SALT girl who visits us, such a shame as she really is such a nice person but she caught me on a bad day! As I result on the 28th we got a visit from the hospice OT and a hospice social worker to help. He couldn’t help and the social worker said she would try. “Back to square one” thank goodness for this site.
Oliver, Derek, and all the others who are caring for their loved one at the complete dependent stage, you are inspiration to me and I can only hope that I will be able to handle my husband's care when he progresses to that stage. Your posts are frightening but also helpful and although I cope by focusing on one day at a time, I want to know what is ahead and how to prepare. So, thank you for finding the time to share your experiences and helpful suggestions. Wishing you the strength to get through this difficult time.
Focussing one day at a time is a good idea and enjoy each day as much as possible.
Although L was diagnosed in 2016 and she's in a bit of a chronic state now this has been coming on for over 25 years. The MSA has progressed very slowly and hopefully your husband's will as well. She's not on any medication for the MSA, some PD medication was tried but without success.
So enjoy the present and worry about the future when it comes, it may be some time away hopefully.
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