Are we nearing the end?

[walkerjen]

I'm new to this community but our family has been battling MSA for a long time.

My mother in law began showing symptoms 9 years ago and is very far along. So far we have been managing with very little support and doctors that are not well informed on the matter.

At this point, it seems like there is nothing left for her to lose - she is completely incapacitated, confined to a bed or chair with no motor function, no speech, no ability to control her bodily functions or movements, can no longer eat or drink, cannot control her emotions or her vision... It's been the worst thing I will ever experience and I'm doing my best to offer my support to my husband and father in law as they are a bit in denial still which is understandable.

We did finally get palliative in home care and she just recently underwent the procedure to get a feeding tube and tracheostomy as she has full paralysis of her throat as she was extremely malnourished from inability to eat.

This stage is about as far as we have gotten as far as research goes and I believe we are nearing the end, but nobody can tell us a general timeline or information on the end stage or even if there is anything left we will have to navigate.

Unfortunately, MSA took it's toll on her early on and it has seemed like the end to us for 5 years. Somehow, she keeps hanging on and fighting, but we keep coming to obstacles we didn't anticipate.

Does anybody have any advice or experiences they could share relating to end of life, differing timelines from similar points as she is at, any additional issues we may face or decisions we should be discussing?

I know that this disease affects everyone differently and is very difficult to give timelines but I am hoping for any slice of information as I am one to prepare and prepare and prepare as it helps me cope.

[Hellebelle]

Hi Walkerjen, I am just wondering whether you are living in the UK or writing from another country? It's just that we couldn't have coped without the help of the hospice here in the UK. My dad was under the care of the palliative team there who had experience of MSA and helped us manage dads symptoms. He also was an inpatient for several weeks at a time for assessment to enable them to trial several drugs to assist with his condition.

The hospice doctor did regular visits and we were able to contact him at any time for advice.

Dad had care at home and the hospice helped us apply for CHC funding which meant that it was paid for so there was no worry over finances.

Dad had the condition for about 15 years but the last two years were the worst. For the last few weeks of his life, he slept for most of the day was unable to speak, swallow or move his limbs. He did not want to eat or drink. It's so difficult to predict when it's the end for someone. We just tried to make his life more comfortable so we gave him hand massages, read to him, told him we loved him and played him his favourite music. The last sense to go is hearing and we thought that dad could understand more than he could show, so we always talked to him thinking that he could understand what was being said to him.

I agree with you that it is a terrible condition and I hope that you are able to get more help to enable you to cope.

Sending lots of love

Helen xx

[walkerjen in reply to Hellebelle]

Thank you so much for your reply! We are in the US and I have to say that my in-laws perhaps didn't do everything they could to help themselves throughout the process.

I'm very glad you had support - we have not been so lucky and it was a struggle in the beginning to get any sort of assistance. She was receiving in home hospice care for the last 8 months or so and unfortunately, they just dropped her as a patient due to the tracheostomy being considered a life saving measure so we lost quite a bit of the benefits she was receiving.

It's a tough decision to make as her lungs are still fully functioning but her throat is paralyzed. Insurance here in the US has much to be desired.

[Keycode in reply to walkerjen]

Hi, my mum sadly passed away in January this year. She was diagnosed with Parkinsons to begin with about 10 years ago. She then got diagnosed with MSA about 3 years ago at this point we were told that she would probably only have about a year left to live.

My mum had a peg feeding tube to help with her feeding and had this fitted about 2 years before she passed.

The whole illness in itself is so hard to cope with both for my mum and the family around her. I found it hard to watch her struggle so much and there were times when I thought surely she can't carry on much longer but her strength and determination amazed me and somehow she kept fighting.

She would get chest infections which made all her MSA symptoms worse and often would be gasping for breathe and i used to think this is it but it wasn't in fact the day before she passed away she seemed better than she had on other occasions.

She passed suddenly in her sleep, you just don't know when it will happen but all I can say is just make the most of the time you have together now.

My mum couldn't speak but was fully aware of everything going on around her. We never stopped talking to her and she would ask questions using an alphabet board to spell words out. She loved being pampered so I spent time doing her nails , putting cream on her skin and giving her a massage.

I miss doing all that for her now.

[walkerjen in reply to Keycode]

Thank you for sharing your experience - It is the hardest thing I've ever witnessed and I truly don't know what could be worse. It's so wonderful what you did for her in her later days.

[chester2107]

hello

my dad was diagnosed at 79 after different symptoms for a couple of years, loss of balance etc , he was told there was no cure , so when his legs started failing he gave up really, his speech then got really bad , his eyesight and also he couldn’t use his hands to write , he lasted another couple of years and we did our best to spend time with him and take him out , he then kept getting chest infections , which effected his swallowing, which can be a sign of last stages , he was in hospital for 3 weeks , waiting for an op for a peg feed , unfortunately then covid came along , so he was stuck in there , he then had enough and ripped all the feeding tubes out and said he had had enough , he went peacefully a few days later , just before the lockdown , so pleased he wasn’t left in hospital with no visitors

my mum was obviously devastated , they had just had their 61st wedding anniversary

i think it was for the best as he wouldn’t have had much quality of life when he had eventually come out

I think it is so different for everyone , she is probably hanging on for a reason

is there any way you can discuss things with her?

it’s so hard and we are all still missing him and grieving , he was 83

I hope you get more answers

love elaine xx

[walkerjen in reply to chester2107]

Hi Elaine,

I had hoped we could discuss things with her but unfortunately, she has been in denial since day one. I don't mean to sound harsh, it's just she still to this day has not accepted her diagnosis and still "talks" (Through letter board) about what she is going to do "when she gets better". It's quite heartbreaking, especially for my husband. Our family stopped making memories the second she realized something was off. She has been too embarrassed to go anywhere or do anything and it's so difficult for me to watch. My husband says he lost his mom five years ago when she lost her ability to really communicate.

Thank you so much for sharing your experience. Every connection with another who has dealt with this means so much to us, especially since we haven't had much support here in the states.

Best,

Jennifer

[chester2107 in reply to walkerjen]

it is so hard xx

[Hidden]

Thank you to you and the others for describing their experiences here. My dad is at an advanced stage but remarkably stable. He can still swallow food and his hearing and vision seem relatively normal. The doctors have given him a year to live three times so far. The palliative team were honest and said the predictive markers they use to tell how long someone has left don't seem to work with MSA. (Most of the patients they treat have cancer, and in that case they can work it out by how frequently they are seeing changes in the person's condition). So I'm just waiting for one of them to pop up again and say, oh well he's got a year left!

I think if you search for MSA Coalition on the internet it's based in America. Take care,Kx

[walkerjen in reply to Hidden]

I'm so happy to hear your father is still stable - It's amazing how different each person's experience is with this disease. I wish him the best! Thank you for sharing your experience.

[Startreckersdaughter]

I lost my dad in April to msa it was so hard but he was very much like your mother in law msa had took away he’s ability to eat drink speak it’s hard cos mentally they are ok I knew he was very unwell in the end but it was still a shock when he did go I thought we would have him a good few months more no one can say when the end will be and I know how hard that can be, me like u would rather know what’s coming. me and my dad still laughed the afternoon b4 he passed that evening just try to get through each day with a smile and look after yourself aswell