Struggling

[Elletheelephant]

I care for my darling husband with MSA. Now he is non weightbearing hoisted bed to recliner. He is having dreadful bowel blockages , very weak voice , sleeps a lot . I'm told he is now in advanced stage of the disease but no one seems to know the prognosis or what will happen . The unknown is hard to cope with. Any help of what advanced stage us please. . I'm new on here never asked before but need some guidance thank you

[Paul_and_Sue_Wood]

Elletheeleohant,

My wife is at a similar stage with very limited weight bearing, can't swallow, peg fed, chest and urinary infections amongst others.

All I can say that get as much help you can to cope. Talk to dieticians about food intake to alleviate blocked bowels. Use carers to help as much as you can with general care. If you haven't get in touch with MSA trust who have specialist nurses to advise on the condition and how to cope.

All sue and I do is face each challenge as it arrives and move on. I make her as comfortable as I can and we try to do as much as we can.

Be strong as just shout "HELP"

Sorry thats all I can offer at this stage.

Paul

[Elletheelephant in reply to Paul_and_Sue_Wood]

Thank you for reply , my husband is unable to do much his strength has gone he can't move himself at all , I will ask more thank you

[Diane831]

As Paul says, get as much help as you can with the bowel issue, for some people it is a real problem. My husband is also at the stage of hoist bed/wheelchair/recliner. He is PEG fed, voice is non existent some days and is unable to do anything for himself. He goes through the sleepy periods but after a few days is more awake, he has opened his eyes this morning when I sat him up- the first time in over a week that I have seen his eyes before 10.30am.

Do speak with the MSA nurse at the MSA Trust who will answer your questions and offer more advice. And keep asking your questions here, we all need to know we aren’t alone in our struggle with this awful disease.

Diane

[Elletheelephant in reply to Diane831]

Thanks Diane for reply, but you do feel alone so few people understand whT thus dreadful disease does to people. My husband can't move himself now and relies on hoist , I have health problems too so it's not easy but I'm not prepared to throw in the towel . We need each other x. His voice is so weak hearing him is difficult , I have hearing aids so it's a double whammy . I am glad I found this site and people who know whT thus does to you thanks and all the best to you x

[Diane831]

msatrust.org.uk/

[Hellebelle]

Hi, my dad is very much the same. Three months ago he was admitted to the local hospice. The GP thought he was end of life as he was sleeping and could not be roused for whole days. He had constant urine infections as he was not taking in enough liquid and was also chronically constipated. It gave my mum a much needed break as he needed the assistance of two to transfer him. He can use a stand aid when he is awake.

Whilst he was in the hospice, they assessed that he was on a very slow decline and that he wasn't imminently end of life. We managed to get CHC funding for a 4 times a day x2 carers package of care. He waited 2 months for a care agency to come forward.

Dad is now at home, which was my parents wish. As well as his package of care, the family assist all we can. We managed to get respite for twice a week for my mum as she is otherwise with him 24/7 and at 81 years old it was too stressful for her.

Without this help, my mum, who is not in the best of health herself, would not be able to cope. Dad is comfortable and on his awake days gets as much pleasure as possible sitting in his favourite chair by the patio doors watching the birds on the feeders and taking in the view of the garden. We have hired a wheel chair taxi to take him out. It is a bit like a military operation getting out the door! He can no longer speak apart from a few key words so we use body language and symbols to communicate.

We had a review of his medication and his laxatives have been increased so that he mostly empties his bowels each morning. The urine infections are still occurring and he is on almost constant antibiotics. It is a battle getting him to drink enough fluid as his swallow has been effected and he has thickened fluids which he hates.

Your love and care will be the most important thing in his life but I would advise that you have as much help as you can get. Your health and sanity is so important so that you have the energy to cope.

I wish you lots of love and strength. Helen xx

[Elletheelephant in reply to Hellebelle]

Thank you for your reply , I'm so glad I found this site. . I am caring for my husband abut t home as we wish , despite being told he needs 24 hr care home! It's not easy . At the moment he is in a hospice for symptom management . It's the unknown that's so frightening . Xx

[Diane831 in reply to Elletheelephant]

My advice to you is while your lovely man is in the Hospice do take plenty of time for yourself. Get things done, see others and get other people to visit if you can. When Geoff had a short spell in our hospice I still did lots of the care and meals and was there for 10 hours a day and I was tired when he came home. I know that they can’t understand him and know his needs as you do but he is safe and cared for.

Diane

[Dimond80 in reply to Hellebelle]

Would you be able to tell me the laxatives your Dad takes as my husband is struggling & I’m constantly looking for answers.So glad your Dad is home.

Thanks, Dee

[Hellebelle in reply to Dimond80]

Hi Dee,

I hope that you are well and managing to get some pleasure from the lovely weather.

Dad has laxido twice a day and bisocodyl at night. He has had sodium picosulfate if he is badly constipated. It clears the bowels very efficiently.

I hope this helps.

Helen x

[Dimond80 in reply to Hellebelle]

Thank you, I'll discuss it with our Doctor.

Yes, I am well thank you & I'm able to enjoy my garden every once in a while.

Wishing you the same.

Thanks again, Dee

[Hellebelle]

Yes, I think we all think the same when it comes towards the end. We asked the hospice consultant and he said that he expected dad would sleep more and more and that he didn't expect dad to be in pain towards the end. We were comforted by that. Helen xx

[Keycode]

Hi, you are definitely not alone with this it is hard because the condition is so rare no one seems to know or understand it but keep talking on here and like others have said the MSA trust are fantastic too. My mum is in a similar stage she is almost completely bed bound now and has always struggled with constipation. Being bed bound certainly doesn't help the bowels because although the laxatives keep things moving and soft she needs help actually emptying and has had to have suppositries quite regularly. My dad and myself are her main carers but unfortunately we are not allowed to hoist her so rely on the carers to hoist and just have to hope she is ready to go to the toilet while they are there.

We have always found our community nursing team very helpful and they have advised the carers and ourselves about bowel and catheter management. We were told about 2 years ago mum didn't have long left and for ages it was all I could think about but have learnt to try to take age day as it comes. Some days are really hard and I do worry but at the end of the day no one knows how long any of us has left and so all we can do is make the most of the time and be there for each other. Please keep talking and know you are not alone. I hope you get the help and support you both need.

[Diane831 in reply to Keycode]

Do you know why they have said that you aren’t allowed to hoist your mum? They should be able to provide training from the OT or an outside trainer so that you can do that. We have a ceiling track hoist that the OT sorted out and she trained me in its use and I have bought a mobile hoist which I use downstairs and was demonstrated by the supplier in our home. I can manage all Geoff’s care alone if necessary and so can take him to the bathroom if necessary. Having said all that I was a qualified physio in a previous life and so I do know what I am doing and can assess the risks if he isn’t quite as well. It may be that if someone has supplied the equipment they don’t insure you but ask about getting training.

[phamwales in reply to Diane831]

i agree with Diane

i just crack on with using the equipment. The OT has been here to create the care plan and show me how it should be done. I then do things they say should not be done but some of that is the extreme risk aversion that they adopt. Like moving a movable hoist from one room to another. they suggest moving to a wheelchair , moving rooms and then a second move into the chair. I do it in one move safely and carefully and avoid the double transfer. Much better! I tell them exactly what I'm doing and they always say.. if you and gill are happy there's nothing they can say. Ours is a hydraulic lift on wheels..as long as it moves well on your flooring there really is not an issue.

[Keycode]

Hi, from what I can gather the OT was not keen on the idea of my dad hoisting my mum but I'm hoping to try and get to speak to her to see if she would be happy for me to hoist with my dad. My mum currently has a mobile hoist which is only used by the carers which means mum can only be moved whilst the carers are there which isn't a problem at the moment as she spends all the time on the bed but the aim is to try to get her to spend time sitting in her recliner but this has to be done very gradually as she has spent so long now lying down. So would be useful if we could hoist as well. We had measurements done for a ceiling track hoist but they decided because the carers can use the mobile hoist not to go through with getting it put in but since then the carers have expressed how difficult it is to push the hoist on the thick carpet and said how easy a ceiling track hoist would be for us all to use. I think I need to speak to the OT myself I do think we would benefit from a ceiling track hoist not sure why they are so reluctant to put one in now. Sorry hope that all makes sense!

[Diane831]

The construction of your ceiling has to be strong enough for a ceiling track hoist plus the person in The hoist, but you wouldn’t know if it was possible unless someone comes to assess it. There may also be the cost which may be more than your Independent Living Team will cover. I managed to top up the cost of widening a door for the bigger wheelchair in order to get what I wanted and I provided the new radiator that was required. And of course your mobile hoist can be used in different places if you want to move the position of the chair etc!

I am sure that the OT will be happier to show you and your Dad to use the hoist together as it will be assessed as a two person manoeuvre, although as Peter had said, and I do, as long as you assess all the risks and understand the equipment you may feel able to do it alone as long as you are aware that it is your own risk!

Keep asking!!!!!

[Hidden]

Hi. I'm relating to all these posts and sending lots of love. Our OT has given us breathable 'sit on' slings, to avoid having to stuff it under dad if he's in his postural armchair. Ie: you can leave it under the person till you next need to hoist. Seems to work fine with regard to pressure care/overheating.

Dad keeps out-foxing predictions for his life expectancy too. I'm continually impressed by his capacity to live as well as he can, at a profound level of disability. Happy carers week to all. Kx

[Hidden]

Hi Elle, my wife is in very late stage MSA and inteed 2 weeks ago whilst suffering a chest infection i was told by the doctor that "this is it, it is the end". But, with antibiotics working, she is still with us and comunicating, watching tv everyday. We were originally put intouch with the local "Advanced Nurse practitioner in the comunity " who's job it is to look after pacients with cronic illness such as msa, motor nueron etc. I am lucky as i am a stong bloke and move my wife around with ease without the need of a hoist. But we do have the "green team" (NHS axillary nurses) whom provide personal care for my wife, twice a day, who do need to use a hoist. Before they started i cared for her practical on my own and all domiciliary care help failed to be of any use.

My wife made the decision early on that she did not want to die in bed with tubes keeping her alive. So she lives on porridge, Yougaut & fresh orange juice and other such soft food as she has no feeding tube, we also use a nebuliser daily as there is no breathing tube. She dose have a catheter fitted to empty the bladder as she had brain bleeds early on due to fluid build up in the blood stream resulting in high blood pressure spikes. She also has "peristeen" bowel flushing to help with bowel movements. She is a fighter and she is still with us and all the carers and medical teams say that they don't know how i cope and hope my wife is still here, but we fight on regardless.

[Elletheelephant in reply to Hidden]

Thank you for replying it is such a relentless disease and watching it us very hard. My husband fights too. Wishing you and your wife all the best .

[phamwales in reply to Hidden]

Hi kev

Gill and I a right there alongside you

Gill is in year 14 and we are in exactly this position

She’s just recovered from a bad chest infection ( so bad we got her younger son home at midnight ) but she’s pulled back

Food is the main challenge as she didn’t want a peg and it’s very hard to swallow now

Sounds like you’re doing an amazing job!

We have home care support twice a day. They really are a great team and they show genuine love and care for gill. Wonderful to see!

Good luck and keep strong

[Elletheelephant in reply to phamwales]

Thanks , I just want to care for him as best as I can Glad I found this site it's a lonely illness . Our Carers are good , now I couldn't manage without them . The bowel problems are very bad at present. Just keeping going. Wishing you both all the best and thanks