Hi chaps, I’m really not sure how to put this.!! My wife now 57, we hav been together since she was 16. Back in 2016 went to the doc’s for something and whilst there explained, funny thing is she can no longer sign her name. From there you know the rest…. We have done as much as possible in the time we have had to make her life as best as we can. It’s sad but I think we have both accepted the Inevitable conclusion now. My question is, I read all the horrific stories and yes we’ve been there and done it! She is at the stage of no mobility, feeding issues cafiter etc etc. One reads on most sites life expectancy is generally between 6-9 years. I appreciate that people do make it longer but her changes appear to be exactly as written. I just need to know how much longer we might have together? I’m sort of hoping that the clock is counting down from when her diagnosis changed from Parkinson’s to MSA which was a couple of years ago but reality shows it all started back in 2016. I’m so sorry to ask this but “I’m scared” I don’t have anyone else to turn to. If you can help please be truthful.
Thank you 🙏
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Oliverwindsor
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sorry it really is different for everyone. All you can really do is recognise what you got..and deal with it as it comes.
I feel for your fear but a lot of people find this horrible disease is much kinder at the end than in the eary stages..Patients lose interest and appetite and seem to be quite content to sleep for long periods
Take care of YOU. make sure you are not left with an empty life with no interest..the garden, allotment , football. politics., whatever, all these get put on the back burner but keep them for you will need a reason to get up in the morning
if you have a family and theyhelp a lot yhst is good but dont be over dependant on them for the rest of your life
It is not uncaring to accept this or to feel relief that she is not suffering
It is not uncaring to make a new life for yourself, when youare ready,
Thank you for your comments, I just feel so useless. Our son helps now and then but I try now to rely on him as he has his own life to lead. Our “Parkinson’s nurse” who deals with and seems to understand MSA quite well has suggested we might need care help, I’m now sure I want a stranger to be involved, however, I have just sat down since writing my first comment after shower, cleaning, her, bed changing, washing her clothes and food preparation and it’s starting to take its toll! Am I being totally selfish or is this the norm?
you cannot do this on your own - it is just not possible . therefore help mustcome from family or friends or strangers. if you dont have help and you collapse under the strain that will be worse - we know we.ve been there
Hi OliverYou have come to the right place to talk. May of us have trodden this difficult path and the words you've used could have been my own from only 3 years ago. I also looked after Gill's needs until I recognised it could be better with help. I started slowly and shared he load with one visit a day from one carer. It was wonderful relationship that allowed me to share the physical load but also no longer feel alone . From there it changed, the 'rules" kicked in regards lifting etc and we moved to 2 carers and I would help when I could. In fact I started to care for the carers as it seems very few people do. A cup of tea on arrival and finding out what a favourite biscuit is makes a world of difference. Perhaps the biggest thing was to talk about Gill to them and make her a real person with a wonderful history through endless stories. Most were young and inexperienced but without exception showed care and empathy for Gill. So much so 6 attended her funeral and several continue to send messages and stay connected. I personally found the care support something to embrace rather than be fearful of.
Gill survived 14 years from onset and we were lucky that most of that time was manageable but as Freda says, all these journeys are different.
One last experience. You can manage your support hours as you need and I 'banked' some hours each week that gave me a 2 hour block every Wednesday. I live by the sea so I started to row with a few 'old men' every week and it became a great place of support and solace. Since loosing Gill the rowing has gained even more significance and has helped me fill the hole that providing 24 hr support left. Its ok to think about your own life and wellbeing and im 100% sure your wife wants you to be ok.
Hi Oliverwindsor,to be the best you, for her, you need to accept outside help!
The outside carers can perform the routines of daily living, while you can focus on maybe thoughtful meal prep and then be able to sit and enjoy the meal with her.
The time the carers take 'doing' for her, will allow you to recharge or just have a short respite from the daily routines. This will allow you to be able to BE her HUSBAND to her and not just her carer.
It's easy to get caught up in and lost in the many daily demands and chores that need to be attended to. But having help will allow a slice of being able to just be the companion too.
It could be as simple as being able to eat at the same time... instead of feeding her and eating later. That simple sharing of a meal at the table... like you used to do can be a daily reminder of the persons you both were before the disease. Talk and share the day together, even if it means a carer is feeding her and you are eating together.
Food for thought. The carer is as much there for you (and your sanity/peace of mind) as they are for your spouse.
It is an emotionally difficult road, you grieve a little with each loss of independence the spouse experiences, but focus on the little joys of each day and it might just be holding their hand as you watch the television together.
My prayers go out to you... you are doing your best.
For the last couple of years or so we paid for a carer to give my lovely hubby his breakfast, get him up, with hoist, wash and dress and then transport to his day chair. This was a huge relief for me. Later we had a carer reverse the procedure and put him to bed. Without these two ladies I would have collapsed and been of no use to anyone. Get help and look after yourself. You can then concentrate on making the remaining time as pleasant as is possible, together. Enjoy what limited time you have left. Every moment is precious. You don't want to look back with regret. Courage, love and best wishes. Alex
Hi Oliver. As the other comments say, every situation is unique and yet we do know from experience that most people need some help, it will come to a time that if you don’t have some help if you were to be ill then you both would be at risk. For me and my husband, I did continue to be his main carer for the whole journey, but for the last year and a half we had a carer who came in to help me get him up in the mornings and a lady who came in once a week for 5 hours so that I could just get a break and get some exercise or meet family or friends for lunch. We also had a lovely friend who when he took early retirement, came and read and talked to him for 2 hours once a week, he did no care input just was an outside voice for Geoff. Sometimes they watched a box set together of something that I wouldn’t enjoy!
I wanted to be completely involved in his care, that felt honouring to him and I had the skills and health to do it. We also had the space, finances and therapy team to get the alterations and equipment to make it manageable as symptoms changed, and Geoff was a patient man with no cognitive problems. Not everyone is in the same position and you really have to make the choices that suit you both.
You are doing a great job! And thinking this through before it is an emergency is really sensible!
Thank you for sharing that Diane. You describe my situation so exactly and it makes me cry with relief to read what you say. We have just started on a morning carer and have three hours a week respite and thank you for making me realise that we do need it and not to feel guilty about taking up resources .
Oliver.This condition is so variable that the one question we all ask can't be answered. Sue and I are at 12 years and counting from start of issues.
I feel the way we have extended our period and continue to do so is putting help in place for both Sue and also me. It was a challenge for sue to accept help but she agreed she wanted me to be the husband not just the carer. The benefit is because I am not exhausted and so heavily involved I am watching and assessing changes and risks.
I have also started to do things for myself to keep sane, which was then hospice telling me to do so because if I dedicate my entire waking moments to Sue then when the inevitable happens and it will, then the pain would be "normal" and not so overbearing.
All we as main carers can do is care and love. This means get the best for our loved ones and ourselves.
Thank you for your wise words Paul. It is hard to accept help when you are, you think, managing but we are in it for the long run and need all the help on offer.
hi oliver , you aren’t being selfish , you obviously love your wife dearly, and have been together for a long time , you are still young yourself, get some extra help with carers , and make time for yourself my mum and dad had been married for 62 years when he passed from msa , obviously much older when he got it at 79 , my mum struggled so much helping him , so we persuaded her to get carers so she could be more of a wife than just a carer, it also helped when i looked after him , we would sit and watch a film or the horse racing , put some bets on etc
my dad lost his speech which was very hard
he was much older than your wife , so couldn’t put a time on it ,
but make time for yourself and just be there for her , my dad just liked people to be around , don’t feel guilty about asking family , she obviously knows you are there for her
sending hugs ,
love elaine x
Hi, my dad is 11 years or so since first symptoms and still going, although advanced. I think good nutrition and a strong heart might be playing a big role in holding him together. Every year for several years the GP has said he may not see Christmas - and then he does! So even healthcare professionals aren't able to predict. We've therefore needed professional carers for much longer than we initially anticipated - so definitely worth putting in place.I just wanted to acknowledge that not knowing any timescale for the illness does create psychological pressure for caregivers. There's no clear sense of how long we should budget our energy for caring, if you see what I mean. It's not easy to accept that it's something we don't have any control over.
Hi there. I am like you, I want and need a timescale.Jon is 50 and diagnosed this year.
We have just got carers involved for the mornings. The mornings take soooo long,
We don’t live together but he is moving in with me next week. I have to work. I was very reluctant and upset with the carer situation but had had a fall and that was taken out of my hands.
We plan to have the carers the days I work so I don’t get stressed.
I want to do it all but know I can’t.
Look into a carer for the most stressful part of the day to all yourself some time just to be “you”. I am very mindful of keeping “me”
Oliver thank you for your brave question…one I have been too scared to ask. Take any help you get offered and do not be backwards in asking for help. Today I slipped and fell running to the door to let the carer in and shook myself up but did not break anything but it did not take long to figure out the consequences if I had broken something. Starting a care package has been the best for us.
I am going to take you at your word, that you really do want honesty because that is how we felt. And instead we only received generalities about how everyone's journey is different, average life span with MSA etc etc. I feel that if we had been given the unpalatable answers we could have handled it better. So....
After ignoring all sorts of symptoms for the last few years, my husband was diagnosed with Parkinson's at the end of 2018. Following his swift decline and lack of response to Levadopa, in January 2020 his neurologist told him it was probably MSA. He waited for a referral which never happened due to Covid. As he had lost the ability to walk or even sit upright, we moved house to a bungalow. This meant a new neurologist who confirmed MSA in June 2020. Continued rapid decline till he had lost all ability, from speech and swallowing to mobility and movement, incontinence - all the things I am sure you are used to.
He was desperate to know how long he had and the most useful conversation we had along those lines was with a palliative care doctor who had prior knowledge of MSA. This was said with great sensitivity and kindness, but I am putting down just the gist for you. She said:
'I look at you and think does this man have another year? And the answer is no. So then I halve it and does he have 6 months. And the answer is still no. So then I halve it again and we get to three months. And this is the point at which it becomes difficult.'
My husband took that to mean he had three months but I could see from her face that was not the case. He died 5 weeks later in June 2021, just under a year from his confirmed diagnosis of MSA.
I wished we had spent less time worrying about how much time he had left and made the most of each week, each day. Though he could respond so little, he was still himself with the same thoughts and experiences and I wish I had spent every moment possible doing the things he could still appreciate. But this disease exhausts and destroys you both and all you can do is all you can do.
My unreserved apologies if this is more honesty than you wanted. I am so sorry that you and your wife are going through all the hell that is MSA and never forget that you are doing the best you can with the most hideous disease. And she knows you are. Sending my very best wishes to you.
Thank you for your reply. You have pretty much confirmed my thoughts.And thank you for your honesty, I don’t seem to get much help from our medical people, when I last asked I was told by the consultant to google it! As so many people have answered me I’m going to write a general thank you.
My husband was diagnosed in early 2013. He went for a BUPA health check at my insistence and sailed through until he mentioned his inability to sign his name! We managed well until the symptoms really kicked in and I couldn’t help him physically. I think men manage for longer as they are stronger. We had no option earlier this year and had to have carers to help hoisting and now they get Ian up, showered, dressed and into the wheelchair and into the kitchen where I have made the porridge. They come at night to get him into bed. Additionally they keep an eye on his catheter, bowel movements, pressure sores and advise me when we need a District Nurse visit. As a consequence I am much calmer and easier to live with most of the time! Do get carers if at all possible.
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Advanced MSA / Towards the end
I've lost my deepest love and soulmate
