maybe some of you have noticed I’ve been absent from this site of late well after a long illness my husband passed away on the 19th March.
It was an illness that could have been avoided. An ear infection led to osteomyelitis of the skull, led to damaged cranial nerves, paralysis of the voice box, inability to swallow, peg feeding only along with minute sips of drink, led to aspirational pneumonia , then progressive weakness into a downhill decline.
I miss him and constantly think about at the age of 65 he has missed out on a lot and selfishly we have missed out on a lot.
His quality of life was extremely poor but I kept nagging him to do his given exercises. Something I will regret. There was always hope! We were told that he could live a ‘normal ‘ life. Google said so too. So I kept on nagging. How wrong everyone was.
Luckily all our money and property was in joint names. Thus avoiding hardship. His pension has been frozen until they assess my status.
My advice to you all is to make sure that what ever your financial status take on board the fact that if you have separate funds they could be frozen and probate needed. Your spouse’s pension will be temporarily frozen.
so after reading this please give your spouse a huge hug tell them that you love them and make sure you share quality life together.
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Wyebird
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I'm so sorry to hear of your loss, but don't beat yourself up for doing what you believed to be right, for the man you love. No one could ask more of you, and despite all that you have been through, and continue to go through, you still took the time to offer valuable advice to your friends on this forum.Be kind to yourself, treasure your memories, and remember that you have many friends here if you need support.
Thank you his first 11 week stint in hospital before Christmas I took in my stride. I just assumed it was a long road to recovery. It was on discharge and no improvement I saw what was coming but despite that I was reassured that my husband could carve out a decent life.
How absolutely dreadful ,I had missed your ‘wye bird’,not on site much myself as I have been rather poorly changed to M F,but I have my husband thank goodness to help me.I send my sincere condolences to you,hope you can keep as well as possible .Pensees Chaleureuse ,I know that is French but it means so much that is needed to say.💕Sally
Yes I do try to make the most of each day,I am 84 now & my very caring husband 85 !!So we know time is limited ,at the moment we are together& you are now alone,I really hope you can manage . You seem very brave & giving advice re being left financially.Well done for that,I think I would fall to pieces.Very Best to you& hopefully you will cope with such awful sadness. MPNs take a lot of managing life without losing a loved partner. 💕
Dear Wyebird, you are in thoughts and prayers. I am very sorry for your loss and wish the pain of this loss will ease as you are able to recall better times before this tragedy. Bless you.
My thoughts are with you.❤️ It must be a very difficult time. I lost my father recently who I loved dearly and was caring for. I think we all have things which we regret even if they were done out of love. I believe they can see and understand now where and why we did them but it doesn’t help the guilt we feel. I think that is also a part of grieving which hopefully eases in time. The financial advice is very helpful that you give. It’s one of those practical things couples feel awkward about discussing. A friend of mine lost her husband and because he controlled all the financial affairs, she not only grieved the loss of her husband but had to deal with not even being able to get into the computer as she didn’t have the passwords and obviously there were bills to be paid. She knew the house was insured for example, but didn’t know with who or when the insurance ran out. At such a time it is much easier if everything is in joint names. Financial worries on top of loss just makes it all so much harder. You need to remember to take care of yourself too. You have probably taken quite a knocking with all that has happened. Big hugs
Oh, Wyebird. I’m so very sorry for the loss of your dear husband. May the sadness you feel now be replaced by the happy memories you shared over the years.
I am so sorry to hear of the death of your husband after what sounds like a horrible and prolonged decline. I send you loving thoughts. You were still comparatively young. I lost my husband who was 73 very suddenly after a massive stroke which he suffered during sleep. We went to bed just fine and I discovered him unconscious at 5 am. He died two hours later. It was such a terrible shock but a much easier end for him.
That is 7 years ago and I miss him every single day and always will. We were best friends as well as married almost 50 years.
You must not blame yourself for "nagging" to get your husband to do his exercises. Remember you wanted the best for him and always tell yourself that. Even now you are reaching out to others with sound advice.
You will, I know, miss him so much. I know what you mean about missing out so much together. I still look at other couples I know and even strangers and think how lucky they are to have each other, but I also have many wonderful memories of our lives together and treasure those (a lot of them make me smile again).
You must concentrate on your own needs now whilst grieving and I wish you peace over the coming weeks and months
I have tears in my eyes reading your post, and am so very very sorry that you’ve lost your lovely husband in this way. Absolutely tragic.
I think we all have to realise how lucky, we are as often as possible.
My old boy drives me to distraction sometimes ( married 50 years next year) Now that he’s retired he likes to tell me how to stew apples and stack the dishwasher. However I love him dearly of course and can’t imagine life without him.
My heartfelt sympathy, much love and best wishes, and the biggest hug.
I feel like that Louise about my actually marvellous caring husband….but if I were to be left alone like Wyebird after a dreadful debilitating illness he suffered,I would just be in bits.Yes we must appreciate each other every day we have together even tho the great young days have passed.Hope you are keeping well,M F now I don’t have very many days with any energy,but I have great care from my Medicin Traitant to consultant at hospital & my nurse who has come to me now for 14 yrs,just more injections & blood tests than ever,but he is almost family ,so that helps us both ,hubby & me .!!Best to you & family Louise those grand children must be nearly teenagers !!Love 🥰Sally(still have my dogs to guard me as well,sleep near me on floor of bedroom…….pity they snore as much as hubby)
Plodding ever onwards! Had to come off Hydroxi ( good run - 15 years!) so now on 45mgs interferon. I THINK it’s ok ……after wondering if I’d have to drop my keks so Steve could take a run at my derriere with the needle - it’s a doddle to do myself Just waiting to see if I need a higher dose.
However the sudden withdrawal from HU has mucked up my mast cells I think so they’re churning out histamine with rather grim effects. Still, looking on the bright side, I’m determined to get to the bottom of it. 😁
I feel for you with MF - must be ghastly. Fatigue is really horrid and not many folk understand unless they’ve been there.
The children are a delight. 2x5 yrs 1x2 1x1.
Looking forward to some warm dry weather here, we’re turning into an ark!
Good to read you are bravely stabbing yourself with needles! Ihave had Jakavi for 5 yrs really was good for me after H U stopped working.Sudden dreadful fatigue & collapse was a shock .Had blood transfusions & platelet trans.long spell in hospital ,but every scan possible & 3 lots of one marrow biopsies leaving me sitting on ice pads😱 Now I have injections to boost my flagging bone marrow & special protein drinks.We have both done very well to keep going I think,hope you sort out the mast cells.If anyone can you will!Yes M F is much harder to deal with,but I work in my studio on good days,we have a G S D pup,well he is 10 months now so his training keeps Graham & I having a reason to get up & out as he is already huge & strong,good temperament & very intelligent .Course I know I may not see him into his older age but we are organised for beloved dogs should we shrug our mortal coil any time soon!!Thought the the little ones would be much older,it’s ages since I got on to MP Nsite again Good to be in touch ,keep well🥰💕
I am very sorry to hear about your loss. It is all the harder to accept when it seems that it is something that could have been avoided. It appears quite clear that you did all you could. The nagging sounds more like support that I am sure he heard the love in. I would not focus on regrets for things you cannot change. He was blessed to have you in his life.
You are so very right about financial planning. Having all of our affairs in order is critical when we pass. It is one of the best things we can do for our loved ones.
So sorry for your loss and it sounds like you did everything you could to help him and you both - I am a firm believer that one partner always has to have hope - even when , especially when, it is hard - you don't know how much that probably comforted him....
I am so sorry, you will be in my prayers. And thank you for reminding us how fragile life is and we need to take in everyday and tell our loved ones how much they mean to us. ❤️
Dear Wyebird, , please accept my sincere condolences on the sad passing of your husband I hope you find some solace in the memories you made together in the coming weeks and beyond. . . . Chris.
I am so sorry to hear your news. You did your best and you were fighting to get him well. You didn’t want him to give up. 😘 and this was so hard to call! No can look into the future. Please forgive yourself if you believe you didn’t do the right thing. That’s so important.
The advice you gave us is so important, wether financial or personal. Thank you so much. It is selfless and heartfelt, which means even in your pain, you care about us and want to help us. I will be praying for your husbands soul and for you.
Sending you everything that is good during this dreadful time and for your future happiness. It must be so hard to actually process what happened and to let that go. Please remember all the good times and that you did your best. X
Thinking of you as you navigate the road ahead. Remember we're still here for you and you did what you could for your hubby. Big hugs to you and thanks for the advice about finances. Lx
So very sorry to read this 😢 Please take good care of yourself and remember everything you did was out of love and support. We’re all here for you Wyebird. Thinking of you x
Thank you deeply for sharing with us. Such a valuable treasure of experience that’s touched us all. He was truly blessed to have you in his life. My absolute love and the warmest of my very, very best wishes to you Wyebird. Your heart is a beacon that has illuminated our lives. You have my deepest respect and prayers for you and for him.
Thinking of you at this sad time and sending condolences.You will have some wonderful memories of him in the good times together which later you will cherish. Everything you did for him recently was for the best.... don't beat yourself up please.Take care.x
I am so sorry for your loss. Thank you for sharing in the interests of others whilst you are going through such grief. Holding you very much in my thoughts, even though I don’t know you 🕯️
I am so very sorry to read of the loss of your husband, when you both fought for so long to try and get him restored to the best health possible. It seems so hard when it appears certain issues seemingly could have been avoided, but pray that knowing you did absolutely everything within your power for him will give you some comfort. So thankful to read that so many things were in order for you. I think something we all need to reflect on. Big hugs to you. x
Welcome back, Wyebird. So sorry to read your news; what a terrible time you have been throughl, and as you say, it was avoidable. I am so sad for you; it kind of puts my own problems into perspective a bit. I do hope you have help with the aftermath of this.🤗🤗
Such sad news. You would not believe an ear infection could have such a dramatic outcome but this is the second case I have heard about in the last month. Like you say, there was always hope and this hope gives you the strength to carry on. My partners sister died five years ago as a result of cancer and her daughter used to make a 'special soup' (anti oxidant etc), she virtually forced this stuff down her throat believing it would cure her but of course it did not but it gave her hope and she looks back now and feels guilty for putting her through this but we are all human and we want our loved ones to have the best chance possible, we do what we think is best at the time. Be good to yourself now, you need time to recharge and reflect. God bless.
Wyebird, have missed you and now understand your absence. I am so sorry for your loss of your hubbie. Take care of yourself and always hold those precious memories close.
So sorry for the grief you are suffering. Remember that those who love you would always ask that you think of yourself and your own health and peace even as you grieve. By taking good care of yourself and finding small comforts and beauties in the world, you are doing your loved ones a forever service.
So sad for you Wyebird. You have helped many of us over a period of time. Now it is our turn to comfort you. Our thoughts and love are with you at this very sad time.
So sorry to hear about your dear husband and the difficult last few months of his life. It's very kind of you to offer your advice to us all when you are experiencing so much pain. I do hope the financial side of things get sorted for you soon so you get some peace of mind there. We are all thinking of you at this difficult time. Sending love. Heidi x
So very sorry to hear of your terrible loss. Try to hold onto the good and better memories. For now. You are giving advice to your wider team and friends I commend you for this. Take care my friend. You have done your best, what more could you have done. X
Oh Wyebird I’m so sorry that you’ve had your heart broken in such an unfair and unexpected way. You’re a fighter with a gorgeous caring heart, so of course you wouldn’t have given up on trying to help him recover! And no doubt he knew it and loved you for it.
Wishing you best comforts for the present and forever. So sorry for your loss.
I understand "an illness that could have been avoided" too well. "so after reading this please give your spouse a huge hug tell them that you love them and make sure you share quality life together." I cry and hug for the contented life we had that I increasingly can no longer offer to a husband that returns only kindness.
Very good advice on organizing the financials for the critical time of need.
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From ET diagnosis to uncertainty !
Venesections via alternative entry sites? Veins in my arms are hardening apparently so going in thru my feet has been bandied about. Aargh!
Changed my hospitals , 
My wife has been discharged from hospital
