my recent absence from this site: maybe some of... - MPN Voice

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my recent absence from this site

Wyebird profile image
84 Replies

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 profile image
Wyebird
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84 Replies
Cat1001954 profile image
Cat1001954

so sorry sending hugs x

Ebot profile image
Ebot

I’m so very sorry to hear your news. Sending you love and strength.

Dottiedot profile image
Dottiedot

So sorry to hear of your loss ❤️x

Spanelmad profile image
Spanelmad

Sending you understanding,strength and reach out of needed

SRH55 profile image
SRH55

So sorry to hear your sad news, sending hugs your way. X

Purplechoclover profile image
Purplechoclover

So sorry for you in this sad time sending huge hugs ❤️💙xx

Ovingite profile image
Ovingite

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.

John

Wyebird profile image
Wyebird in reply toOvingite

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.

Nickthedevil profile image
Nickthedevil

I’m so sorry to hear your news. You must be devastated. Thank you for taking the time to offer such sound advice xx

DougyW profile image
DougyW

Sorry to hear your sad story Wyebird. I hope the only situation sorts itself quickly.

Mazcd profile image
MazcdPartnerMPNVoice

so sorry to hear this very sad news, sending you lots of hugs. Maz x x

amhann profile image
amhann

Oh Wyebird so very sorry to hear your news, you will be in pieces - sending love, strength + support to you. Anne-Marie x

JP1952 profile image
JP1952

So sorry to hear your sad news. X

Inca profile image
Inca

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

Wyebird profile image
Wyebird in reply toInca

Thank you make the most of what you have please. I do hope that your MF symptoms are kept to the minimum.

Inca profile image
Inca in reply toWyebird

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. 💕

Mishie14 profile image
Mishie14

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.

Hopetohelp profile image
Hopetohelp

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

Cja1956 profile image
Cja1956

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.

Jelbea profile image
Jelbea

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

Mustang50 profile image
Mustang50

so sorry to hear this sending big hugs and take care 🥰

Loubprv profile image
LoubprvVolunteer

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.

Louise Cumbria

Inca profile image
Inca in reply toLoubprv

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)

Loubprv profile image
LoubprvVolunteer in reply toInca

Hi Sally

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!

Keep in touch Louise xx

Inca profile image
Inca in reply toLoubprv

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🥰💕

hunter5582 profile image
hunter5582

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.

You will be in thoughts and prayers.

Solyesh profile image
Solyesh

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....

JCmaatla profile image
JCmaatla

So sorry for your loss and thank you for sharing your journey with us.Sending you love and hugs.

Mostew profile image
Mostew

yes , i have noticed your absence.

Your nagging was motivated by love , so hard to get everything perfect isn’t it….

Thank you for the great advice.

Warmest wishes to you x

KLCTJC profile image
KLCTJC

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. ❤️

Penny-10 profile image
Penny-10

So sorry for your loss, thinking of you and sending hugs. xx

JediReject profile image
JediReject

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.

Anag profile image
Anag

dear Wyebird!

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.

🙏 Anag

Simon96 profile image
Simon96

Sending hugs ...Simon

Charliemills profile image
Charliemills

My heart goes out to you, sending love and hugs xx

Anouchka profile image
Anouchka

so very sorry for your loss. Hugs

S031251 profile image
S031251

I’m so very sad and sorry to hear your husband passed away sending you hugs 🤗

KC63 profile image
KC63

Sincere condolences on the loss of your dear husband xxx

rcan_sMF profile image
rcan_sMF

Finances aside (although excellent advice) please accept my condolences and may he rest in peace.

Maurabawn profile image
Maurabawn

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

Aldebaran25 profile image
Aldebaran25

I am very sorry for your loss. Please don’t be hard on yourself , it is a difficult time to deal with. Sending a hug

clematis26 profile image
clematis26

My sincere condolences - sending lots of hugs and love X

JAB6 profile image
JAB6

Heartfelt condolences on the loss of your husband. Wishing you the very best during this sorrow filled times.

Scarlett500 profile image
Scarlett500

Im so sorry for your loss x

Gaithersburg profile image
Gaithersburg

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

ABPD profile image
ABPD

So sorry for your sad loss. Sending condolences and hugs 💕🙏

ABPD profile image
ABPD

So sorry for your sad loss. Sending condolences and hugs 💕🙏

Cakeface profile image
Cakeface

How sad 😢 Thinking of you. Take care.

JustKeepSw1mming profile image
JustKeepSw1mming

So sorry to hear, Wyebird. :(

Thank you for your advice during this difficult time.

Sending you a big hug.

Mary

lizzziep profile image
lizzziep

So sorry for your loss. Don’t have regrets, everything you did was for the best. Sending love, hugs and prayers.

Foodies profile image
Foodies

My deepest sympathy. Sending warm thoughts and prayers to you.

LFCLove profile image
LFCLove

So sorry for your loss. Must be hard to post but hope you find solace.

Try to keep strong and carry on. Remember the good times.

XX

Carol0925 profile image
Carol0925

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

Buddhability profile image
Buddhability

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.

Yours

John

champ30 profile image
champ30

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

PegSue profile image
PegSue

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 🕯️

Oscarsboy profile image
Oscarsboy

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

MaggieSylvie profile image
MaggieSylvie

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.🤗🤗

Bridie123 profile image
Bridie123

My most sincere heartfelt condolences .

Maggie-ol profile image
Maggie-ol

Sending condolences and a gentle reminder for you to look after your own health, I can only imagine how difficult a time you have had

I hope your happy memories bring you comfort.

Maggie-ol

jodary profile image
jodary

So so sorry for your loss ❤️

DiveGoddess profile image
DiveGoddess

Dear Wyebird,

Sincere condolences to you 💐. Thank you for sharing this.

Janis12 profile image
Janis12

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.

brightlys profile image
brightlys

I'm so sorry for your loss. I'm holding you in my thoughts.

Meatloaf9 profile image
Meatloaf9

So very sorry for your loss. Keep the faith. Best to you going forward.

Pinktulips profile image
Pinktulips

So sorry for your loss. Sending virtual hugs 💕

Pogm profile image
Pogm

Very sorry to hear of your husband's passing. May the support around help you through these sad days.

Buggerbear profile image
Buggerbear

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.

william-Indo profile image
william-Indo

Sorry for your lost.May he rest in peace🙏

Bluetop profile image
Bluetop

So sorry to hear about this succession of illnesses and my condolences for your loss. Your happy memories, however, will always be with you.

Ovidess profile image
Ovidess

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.

Thankfulone profile image
Thankfulone

So sorry for your loss! May God bring peace and comfort to you and your family!🙏🏻💕

artydutch profile image
artydutch

Utterly tragic. I am so sorry for your sudden loss and wish you all the best in coming to terms with your grief and trauma.

Mufftreacs profile image
Mufftreacs

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.

Katie

Lallybroch1 profile image
Lallybroch1

So sorry for your loss, remember the better days, he will always be with you x

Heidi-W profile image
Heidi-W

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

Mica11 profile image
Mica11

So very sorry to see your sad news, sending big hugs. xxx

linphy profile image
linphy

So sorry to hear your news. Thinking of you x

T1960 profile image
T1960

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

kiwitraveller profile image
kiwitraveller

So sorry my thoughts are with you - big hug - see you when I am next over or maybe time for a trip to NZ xx

Wyebird profile image
Wyebird

hi, when you next come over I can offer you B andB xx

IrishSarah profile image
IrishSarah

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.

Wyebird profile image
Wyebird

thank you for such kind words

EPguy profile image
EPguy

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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