I lost my husband on New Years Eve, the last day of the year seems a bit ironic to me. He had a condition called multiple system atrophy, it’s very similar to Parkinson’s and is often misdiagnosed as that in the early stages. There is no cure, there is no medication that can help and progression is much more rapid than Parkinson’s. Life expectancy is estimated at between 7 - 10 years after first symptoms. We noticed these in 2013 with loss of balance, worried that it might be MS which his mother had he went to the GP. MS was ruled out and Cerebellum Ataxia was diagnosed, over the next few years more symptoms manifested and in 2015 it was changed to possible MSA. In 2016, he had to give up work and driving. Gradually he found walking difficult and needed support until 2018 when he became a wheelchair user. His speech became slurred, he struggled to do the most basic things and that year was the first admission to hospital with an infection.He almost missed our daughters wedding but was discharged from hospital the day before but returned for 10 days the day after. December 2019 he was admitted just before Christmas with pneumonia and we were told, that at some point treatment for this would not work, if he did not respond within 48 hours there would be little they could do to help him. This condition also effected his respiratory system and his breathing became very laboured. In 2020 he was admitted again in February with pneumonia and came home after 3 days, then again in April. Stuck in lockdown I did not get to see him for 13 weeks, he was admitted with pneumonia again but a few days after was tested positive for Covid. We feared the worst as we had been told that due to his condition if he caught the virus he would not survive it. They were wrong, after 10 days he was admitted to rehab clinic for intense physiotherapy where he stayed for the next 12 weeks. The virus however had left him very weak and he was now confined to bed, he came home where we needed support from carers 4 times a day. July was another short 5 day stay in hospital with aspiration pneumonia before coming back home. After that he seemed well, he started to gain some strength, he was the most good humoured and wonderful person you could imagine. He never let this condition get him down, he worried constantly about me and was always making sure I didn’t over do things. Before the changes in December to lockdown, my two daughters, their families and myself self isolated for 14 days before Christmas (my son still lives at home). When the changes were put in place we decided that as we’d all been isolating and we didn’t know if this would be his last Christmas we kept our Christmas Eve celebrations. We had a lovely day, he got to meet our three week old granddaughter for the first time, the carers got him out of bed so he could sit at the table to eat with us it was wonderful. On Christmas Day he seemed very tired but well, he joined in with the live Zoom meet with my family in the afternoon, joking and laughing with everyone. When the carers came in to put him to bed at 8, one commented on how hot he felt so I took his temperature, 38.7, I called 111 who sent out an ambulance. He was taken into hospital but was alert still seemed well, I was told he would be back home by Monday. On Monday he was having antibiotics intravenously and needed oxygen, on Wednesday they told me to prepare for the worst but said he was stable, it could go either way, even on Friday morning they told me this. Then they told me to come to the hospital, 20 minutes after I arrived he was gone. I got to hold his hand, I got to kiss him goodbye.
I guess this is very long and I’m not sure you needed to know all of this. He was the strongest man I know, he never let this illness get him down, in the last 10 years we did so much together, travelled to other countries and enjoyed every moment we could. Even though we knew this would happen, it still came a shock I’d sent him into hospital in much worse condition and much iller than this, I still struggle to comprehend that he’s not coming back. There’s a hole in my heart and and an empty space on my left hand side.
So sorry what you have been through your husband sounded remarkable what he went through and your family. Know the feeling of thinking there going to walk through the door you went through a lot together
Take care x
So very sorry for your loss, Ivy-Rose, it must be so hard to have cared for someone so much and then to lose him. I lost my husband in May after a short illness (5 months), I still can’t believe he’s gone and still expect him to come home.
Sending you a virtual hug, it is such a shock and you must try try to do what you can each day, and rest as much as possible. Xx
So sorry for your loss @Ivy-Rose. It’s so cruel when they get taken into hospital and you can’t visit every day because of the covid restrictions.
I lost my husband on the 16th of December from asbestosis. He was diagnosed four weeks before and was in hospital for sixteen of those days . I was fortunate to be with him for three days when he passed .
Ivy Rose
Hi
The feeling with thinking he is coming home is not wanting to accept your beloved is not.
Also it’s your brain trying to get through the bad days
I had this experience with my dad.
It went away after I finally realized he was still on a never ending trip to never return.
Then I lost my husband.
I know he is not coming back but I do miss him so much, more than words can say. I have some consolation knowing that he is safe and nothing can hurt him.
I am a believer and I do believe that I will see him again. It just seems so long.
I am told Gods timing is perfect
Dear Ivy Rose
Losing your loved one is so overwhelming. I know that my husband has gone but I still have days and am having one today, asking myself how this could have happened? I still struggle to believe that David is no longer with me.
One day at a time is all I can manage, but life does not feel real just now.
Thinking of you as you process your grief. It’s a long journey.
Thank you for your kind words. I am very lucky as my daughter is in my support bubble, she helped care for her dad and is a single parent as well as my son still living at home at least I’ve not been on my own. This does at times make me feel a little guilty as I’m reminded of all those people who don’t have this support.
Thank you for your kind words. Yes, it’s how quickly it happened as unlike previous visits he didn’t seem that ill and I really thought he’d be back home in a few days.
Thank you for your kind words, you could be right about he acceptance. People have been surprised that I returned to work already but sitting at home waiting doesn’t help. I’ve always been active and with school opening again I know I’m going to have more than enough distractions. I’m sad to hear of your loss of both your dad and your husband take care.
Thank you, your words are very comforting I’m more of not why did this happen because I knew it was going to some day, it’s more why now, why couldn’t I have had just one more year. Today was very sad as my granddaughter who is two came in to visit and saw a picture of my husband, Oh she said, it’s my Papa. It made us all cry it was said with such sadness in her little voice.
There’s that lovely poem that we had at the funeral called When God took you home that expresses how I feel perfectly.
Hi Ivy Rose
Thank you for your reply.
All the best for your school starting
I hope it all works out.
Take care of you.
G