The saddest of times: It is with a... - Multiple System A...

Multiple System Atrophy Trust

1,640 members1,295 posts

The saddest of times

IvyRose64 profile image
28 Replies

It is with a heavy heart I write these words this morning. Yesterday my beloved husband of 35 years passed away peacefully in hospital with myself and our daughters by his side. As you may have seen a few weeks ago I posted about our Christmas dilemma, we'd been planning to meet as a family on Christmas Eve to celebrate the holiday when we were placed in tier 4. Like many families with loved one who have MSA we decided that spending this precious time together was more important so went ahead with our plans. I am so glad we did this because on Christmas Day Alan seemed very sleepy and more tired than usual, although he still managed to eat Christmas dinner and his much anticipated Christmas pudding. In the evening when the carers came into put him to bed one commented on how hot he felt so I took his temperature to find it was way too high and an ambulance was called. He was admitted that night and was treated for an infection. This was shortly changed to pneumonia and despite intense treatment, he fluctuated over the next few days between showing improvement and then suddenly dropping down again. On Tuesday I received a call to prepare me for the worst and the next few days he remained 'stable' until yesterday at 10:30 I got a call to go to the hospital. This could mean only one thing, so I dropped everything and got there as soon as I could. Alan passed away at 11:15. No matter how much we prepare for it and how we know that this will be the end result of this dreadful illness, it still came unexpected. He has left a huge hole in our family.

This forum has been a godsend for me this year, so thank you to those people who have offered support and advice when I've needed it but also thank you to the wonderful administrators of this forum that keep it going.

I wish you all the very best for what looks to be a better year for most. Stay safe, stay positive and enjoy every minute of everyday.

Written by
IvyRose64 profile image
IvyRose64
To view profiles and participate in discussions please or .
28 Replies
Kiwimagic profile image
Kiwimagic

I’m so very sorry to read this. Sending you and your family my heartfelt condolences. May Alan rest in peace, he is free from the beast of MSA.

Remember the happy memories.

Be kind to yourself x x

Tusker1953 profile image
Tusker1953

I am so sorry to hear of your loss and having only just lost my Alan feel I know how you are feeling. Love and hugs to you and your family.

Jan x

IvyRose64 profile image
IvyRose64 in reply to Tusker1953

Thank you, strangely enough you’ve been in my thoughts constantly since you posted your sad news and most especially this last week. My thought and prayers are for you and your family along with those for mine.

Tusker1953 profile image
Tusker1953 in reply to IvyRose64

Thank you that is a lovely thing to say xxx

Yanno profile image
Yanno

What can I say, no words will really help at this most difficult time. You will inevitably feel so sad but think of all the happy times with Alan and those wonderful memories you’ve made together and let a smile creep onto your face.

You have been so supportive over the months, you have given everything and now is the time for you to think about yourself. Take it easy, relax and be thankful for those 35 years together.

We’re thinking of you, Take care, Ian

FredaE profile image
FredaE

So sorry to see your sad news. It seems as if he felt able to let go of life when he had seen his family. Your instincts were so right. and you will always we so glad you gave him what he wanted. Rules are meant to be kept but sometimes well though out disobedience is a better thing to do

Our thoughts are with you at this hard time.

Freda

Hellebelle profile image
Hellebelle

So sorry to hear this. It was a blessing that Alan got to see his family. Like you say, you can never prepare for the death of a loved one, it just doesn't seem real.

I send you my heartfelt condolences. Please look after yourself and be kind to yourself. I hope in the future you will be able to look back and enjoy the happy memories you have of him.

With much love

Helen xx

Derkie54 profile image
Derkie54

So sorry to hear this, we have no control over this terrible MSA. You did your best for Alan and he's suffering no more.

Our thoughts are with you, your family and all the others who have lost loved ones recently.

Stay strong for each other.

Diane831 profile image
Diane831

Well done making the best decision for your situation and you will always have that as a positive thing to hold on to. You will miss him so much but I always remember that I wouldn’t be who I am without having had a Geoff in my life. He made me a better version of myself and as such, I carry him with me all the time.

Grieve as you need.

Diane x

Janeyl profile image
Janeyl

So sorry to hear this news, but glad that you had been able to spend family time together.

My husband, I think, sensed that 2015 was going to be his last Christmas, got both sons and family around. So grateful we did, as much for the boys as for myself. Obviously, a harder decision for you, but the right one. Take care of yourself, now ❤️

chester2107 profile image
chester2107

I’m so sorry and sad to read this , but also so glad you made the decision for him to see his family over xmas thinking of you all , and hoping you can treasure all the memories you have of him

sending virtual hugs xx

elaine

So sorry to hear your sad news and our hearts go out to you and your family. No matter how much you prepare yourself for the inevitable it still comes as shock and hurts as sharing and caring for each other for 35 years leaves a large hole.

All you can do now is use the love for and from your family to cope each day as it arrives and think on that Alan will be grateful of the love and care you gave during your time together but especially when the condition was at its worst.

Peace and Love be with you.

Paul & Sue

phamwales profile image
phamwales

Dear IvyRose and all of Allan’s family My heart goes out to you

As you said, despite knowing the path, nothing prepares you for loosing Alan. It’s a deeply sad time that, even worse given the time and circumstances.

I hope you draw strength and comfort from your family and you can celebrate a wonderful life

You’re very much in my thoughts today

Peter

Madauntie profile image
Madauntie

Very sorry to hear this. My condolences to you and the family. God Bless x

I'm very sorry for your loss.Hope you get time to rest, and watch the snowy winter sunsets, or whatever helps you feel peaceful.

Thank you for having been so open and kind as to share on the forum some of what you've been through. It helps to know what may lie ahead for us too.

Kxx

ChocolatePot profile image
ChocolatePot

so sorry for your loss. I spoke with my mum yesterday, she lost her husband due to MSA 1.5 years ago and it is a super sad time for her still. Plus she really wants to come and visit me and see my hubby who has MSA. She knows what we are all going trough and it makes her sad still. My thoughts are with you and your family and I am glad you had a good get together despite the blooming virus. <<<hugs>>> to you and your family. I am glad Alan is at peace finally.

brianski profile image
brianski

I am so sorry to hear of your husband's death and I will be thinking of you and your daughters. Brian

vis1 profile image
vis1

I'm so, so sorry to read this news. I too have been thinking of you over this period and wondering what I would have done for my sister if I'd been in your situation. How glad and comforted you will eventually feel, that your husband had a last lovely Christmas with your family.With deep condolences.

Jane

Andrashko profile image
Andrashko

My heart is with you during this difficult time. It will be an empty spot that we can never fill. All we can do is try to focus on the memories you cherished together.

Annietutt profile image
Annietutt

This is sad news indeed. Try to take comfort from the fact that you made his last Christmas Day special. I think most of us would have made the same decision in similar circumstances. Thinking of you in your time of sorrow.

heysunshine profile image
heysunshine

I send prayers to you and your family at this time. The news was so sad to hear. Our family also struggled with the decision to get together regardless of the lockdown and your sharing your decision helped to solidify our decision to go ahead because each memory formed is precious.Alan can rest in peace and you will grieve in your own journey now. You did all you could for him and can take comfort from the past 35 years together.

Hugs and prayers!

Celeste

Niknak74 profile image
Niknak74

My thoughts are with you and your family at such a sad time. The blessings will be hard to acknowledge for a while, but you'll have your memories of 35 good years lived together and knowing that Alan will still be with you and your family through those memories and your shared love.Look after yourself as best you can.

Sending you love, light and peace

Nik xx

walkerjen profile image
walkerjen

I am currently experiencing the end times with my mother in law and she has gotten to the point of sleeping most often and has been feverish for about a week now. We expect we have maybe a few weeks at most. We have been coping with her diagnosis for 7 years and it felt like we were slowly traveling toward a brick wall and have finally collided with it.

No matter how much you prepare yourself and know the outcome, it still comes as a shock and emotions that have been bottled up come pouring out. My deepest condolences to you and your family <3 I pray that you find peace and can look back on the best of times.

Boyyo profile image
Boyyo

Hello Ivy Rose,

Our very heart felt sympathies for your loss & our thoughts are with you and all your family.

In time it will be the vast majority of the 35 years that will be remembered, probably with love, laughter and pride. These are the things that will smooth the future and your decision to make Christmas special, including puddings!....was absolutely fantastic and the right thing to have done.

Best wishes.

IvyRose64 profile image
IvyRose64

I just wanted to say thank you to everyone for your lovely messages and how much it has meant to me. We've finally got the necessary paperwork to move on to the next phase of Al's journey, with things being the way they are the process is taking a lot longer than it normally would and two weeks today the day we were finally able to register. His funeral isn't until February 8th as that is the earliest they could do it.

Once again thank you to my MSAT family for your comforting words and support.

Stay safe everyone.

Annietutt profile image
Annietutt in reply to IvyRose64

Hi IvyRose,I have been thinking about you today and hope that Alan’s funeral was all you wanted it to be so that you and your family could say goodbye to him in the way that meant the most to you all.

I also wish you the strength you will now need to start the next phase of your life without him.

Best wishes,

Anne.

IvyRose64 profile image
IvyRose64 in reply to Annietutt

Thank you, everyone told me it was a lovely service to be honest it's all bit of a blur. I'm lucky that as my daughter is a single parent we are already a support bubble, she stayed with me the night before as we were worried she might get snowed in. It made a huge difference as the children were great distraction. We're making plans to have a memorial/celebration of life in the summer when things open up again. Alan was an amateur photographer and one of the things he enjoyed taking pictures of was animals and wildlife, so over the years we have visited many Zoos and wild life parks. He had a favourite place that you can hire for parties and weddings so our plan is book this venue and have our family and friends join us in remembering him as we were unable to do it yesterday.

Annietutt profile image
Annietutt in reply to IvyRose64

That sounds like a wonderful idea. Just right for Alan. Good luck with it.

You may also like...

Saddest of News

years ago to MSA. Thank you all for support, it helps when so few people really understand MSA....

First time posting on this site.

us that everything was not normal. His provisional diagnosis of MSA was confirmed following a...

Time!

have anyone else to turn to. If you can help please be truthful. Thank you 🙏

Writing everything down saved time and ultimately the day!

take sue to the hospital to ensure her heart is OK. I cant go..... aaaahhhhhhhh. So my plan now...

Update on Alan's progress

time of day it you are reading this. I just thought I'd give you a quick update on Alan's currant...