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Don't know where to start - Carers UK Forum

Don't know where to start

For anyone who is bereaved or no longer providing care.

First time poster but have visited the site a few times over the last couple of years for information. I suffer from the usual male syndrome of not being able to ask for help but I've hit an impasse and I just don't know what to do, or where to go.

My partner suffered from M.S. (Diagnosed in 2011) she was the worse person ever to fall ill with M.S. Fiercely independent, extremely active, 6 weeks away from qualifying to be a nurse and with 2 kids we had every reason to be happy. Then M.S came calling and she ended up taking a double relapse and spending 2 months in hospital. To her credit she went on to qualify as a nurse.

She responded well to Tysabri and was able to start work as a nurse. She worked hard, mainly nightshift which took it's toll and she struggled terribly with fatigue. She never moaned, just got on with it. One treatment day she suffered an infusion rash and they decided to take her off Tysabri and put her on Gilenya. (This is the pivotal point right here, this decision is I believe the blame of all the woe that followed.)

She had to do 12 weeks washout from the Tysabri before they could give her the Gilenya which she had 3 relapses on. They then realise the infusion rash was an allergy to plasters and decided to put her back on Tysabri. Another 12 weeks washout from Gilenya by the time they got her on Tysabri she had suffered cognitive decline, suffered confusion, memory loss, loss of memory recall. She had to quit her job, she withdrew from family and friends because she felt she had become "stupid." It was truly heartbreaking. Over the course of the next two years her cognition declined steadily. Strangely enough her mobility wasn't that bad but she suffered from what I can only describe as a dementia like illness. Over the last 3 years i had decreased my working hours to care for her and our two kids. First down 24, then down to 8.

Monday 26th Feb, my beautiful partner passed away at the age of only 37. We were sitting chatting one minute on the way to the loo, next she said she felt sick and collapsed in my arms and she never regained consciousness, dying in hospital 6 hours later from clots on the lung. Out of a multidisciplinary care team not one even mentioned that blood clots might be an issue, no blood thinners, no surgical/compression socks, it wasn't mentioned once. This angers me as her death was completely avoidable.

I am lost, most days i don't even feel like getting up. I do as I still have two kids who need me (16 & 10) but i'm on autopilot, every thing I do is automatic. I go to bed at 9pm when my 10 year old goes and I lie awake usually till 2-3am before I finally fall asleep. I'm back up 7.30 to get them up for school. When they are at school I just sit at home and essentially wait for them to be finished school. I do my housework then wait.....just sit and wait.

I've increased my hours back up to 24 over 3 days as money is tight, after my partner died they stopped all our money and made me apply for Universal Credit, i've never recovered from the debt that process put me in as of yet. It's been horrendous. I'm living wage to wage and if anything big was to go wrong i'd be snookered as I have no savings. I'm down around £700 a month with my partner gone and I still have the same amount of bills if not more as I now have half of a 7 grand funeral to pay for. My 2 children have birthdays coming up and I literally have no spare money. I'm dreading christmas for a whole host of reasons.

My partner and I weren't married but had been together 18 years, she was best friend, partner, my soulmate. My life is in limbo since she's gone and I don't know how to move on. I've forgotten how to live life. I know it takes time and I know i'm being very hard on myself, probably because part of me blames myself for her demise. She died on my watch and I feel responsible. Plus I should've shouted harder when they took her off Tysabri but we trusted the Drs knew best and knew what they were doing. I am angry, I mostly blame them for what happened to my partner, and i blame them for my anger which makes me sad as I was never that type of person. I don't want to be angry.

I've come to realise i'm suffering from depression and anxiety. I've did the classic thing of trying to run from my grief but i've now realised i can't run fast enough or far enough. I've consciously tried to trick myself into believing she hasn't died but simply somewhere else in a way of not dealing with it or as a way of dealing with it, i'm not sure anymore. I can't even bring myself to visit the cemetery.

I need help but like most men i'm terrible at asking for it or terrible at looking for it. I've made an appointment with my G.P but she's on holiday until 23rd Aug. I feel like i'm failing, failing my partner, failing my kids, failing myself. I really don't know what to do anymore.

To top things off I decided to quit smoking, single parent now, gotta take better care of myself plus I can't afford to smoke but my nicotine withdrawal has only added to my anxiety.
Like you, I was widowed unexpectedly. Like you, my husband died of something I wasn't warned about (he had cancer, but there was a complication that was VERY dangerous, that NO ONE had warned me to take immediate action about - he should have been rushed to A&E the moment he said he was getting headaches.....) My anger and rage 'afterwards' made me replay and replay in my head what I 'should' have done that I did not.

In the end, that feeling passes. I suppose, for me, it's a question that 'what happened, happened' and though I would hardly say I've come to terms with it (I'm nearly ten years on now...), and I still deplore that he was diagnosed so late, and so incurable, let alone that he did not even live out the miserable 'one year left' that he was given at his diagnosis (because of this rare but very dangerous side effect from a medicine he was on). But I've 'come to terms' perhaps that the phrase.

You may already have come across the 'stages of grief' analysis - that we go through various stages - anger, denial, bargaining and finally 'acceptance'.

I found 'acceptance' hard if not impossible, because I kept hearing it as 'agreement' - as though I'd 'agreed' it was time for my husband to die. But it doesn't mean that - I don't quite know what it does mean - sometimes a browbeaten despair and desolation, but at its best if means 'a kind of peace'.

In the end, we DO stop beating ourselves up about what happened - that your wife got MS in the first place, that she died of it before she should, that your children are growing up without her (my son was 15 when his dad died).

One of the 'toughest but truest' things my MIL said to me when I howled and howled and howled and cried out 'How shall I live now without him?!' was simply to say (she was a widow of some 20 years by then), 'You'll get used to it'. That can sound hideously callous, but it is, God help me, TRUE. That is what seems so utterly 'impossible' for you now. That you will 'get used' to being widowed.

You WILL adapt. Just as you had to adapt when your wife was first diagnosed. It became 'the new normal (that's the term for living with cancer in Cancerland). We didn't want it, but we adapted to it. The same is for widowhood (horrendously harder, but it happens, all the same it happens)

You will NEVER 'not love' your wife. You will dream of her and they will bring you comfort and torment - but the dreams never fade in the immediate 'presence' of your wife (when I dream of my husband he is just 'there' all over again inside my head - real and just 'him') We can't lose the people we love.

It will take years. I can't say easier than that. Maybe this time next year - after you've gone through the nightmare of saying 'this time last year when she was alive we were doing xxxx' over and over again - Christmas will be agony - but slowly, slowly, slowly, slowly the pain ebbs away. It never leaves, and you would not wish it to - our tears are our tribute. Our pain proves our love, it is our final gift to them.

Life can never again become 'better', but it DOES become 'easier'. And only time does that. The longest, longest wait in all your life is ahead of you, and this is a time of heartbreak for you that you CANNOT avoid. It is a road that has to be walked, a last pilgrimage of devotion to the woman you loved, and always will love, and nothing can take that love away. Not even death.
Is there any way you can get an emergency GP's appointment? Maybe print out your post and take it if you don't think you can say it all. But perhaps you would prefer to see your own GP.

It helped me to know that everyone I meet whose partner has died, feels guilty. We all remind each other of the things we got right and did well, but the things we think we should have done differently take over.

The Samaritans are always there in the middle of the night.

The rest of what I am going to say might be too much for now, but ignore it or save it for later. There is an association called WAY (Widowed and Young but it is for anyone whose partner has died) which has an online forum and real life meetings for people widowed under the age of 50. I am guessing you are young. If not, there is a second group for the over 50s. On advice from someone here (thank you) I joined the over 50s forum and although people are all at different stages I personally find that helpful. Warning: I know sometimes new members find that very hard.

There was also a BBC clip (still available online - I'm not going to put in a link as it would be too easy for you click it on a bad day and find it upsetting, but you can search for BBC grief or ask me for the link) which says that grief does not go in stages but more like circles and eventually your life grows to take in the grief.

Otherwise - what Jenny said.
Hi Jimmy
I'm going to be Mrs Practical here. Others are far better at the emotional stuff :)
Have you thought to check every possible policy to see if there's any financial cover anywhere. Mortgages, work pensions, life and critical illness cover? Many policies would have paid out for your wife, it's worth double and triple checking. We tend to pay into them not really understanding them then forget they are there when dealing with major sh*t.

Her nursing pension may well pay out a lump sum.

Secondly, and very hesitantly, have you considered taking legal action over her treatment and death? I say hesitently because it can be a very harrowing and drawn out process and will take its toll on you. However an initial consultation with a specialist solicitor is often free and may at least put some of your mind to rest. Just beware of 'no win no fee'contracts and read, re-read and re-read any small print

My heart goes out to you
I'm going to hit you from yet another angle, your children, they have already lost their mum so do your utmost for their sakes to survive and show them life goes on in a positive way. You can't change the past but you and you alone can shape their future ( I lost my mum at 16) so now is not the time to sink, however much grief you are feeling. Sorry if that sounds harsh buut I'm no good at the emotional stuff either :lol:
Hi Jimmy,
Welcome to the forum. I too was widowed suddenly, "legal expenses insurance" was part of my contents policy with the Pru, and another policy with HSBC. Between them, they paid for £10,000 of solicitors work.
You NEED to do this, so that you know exactly who did what where and when, and whether negligence was involved.
How long ago did your wife die?
The first year is simply awful, and the six month stage is the worst of all. I urge you to join an online forum. For the over 50's there is one called "Way Up" (as in "the only way is up") I think the younger group is just called "Way".
Many of the feelings you describe are perfectly natural parts of the grieving process, but the whole thing is dreadful.
We are here for you. No magic wands I'm afraid, but kind caring people.
Hi Jimmy
So sad for your loss.
I'm not actually widowed, but my lovely husband is in a nursing home because of strokes and vascular dementia. I feel semi widowed. I visit hubby every other day, and try to keep upbeat with him. The Ist Christmas, anniversary etc with him in the home were very difficult, but, now I remind myself the day will come and go.Not easy.
You will find the strength, not only for your children's sakes, but your own too.
I'm sure I am not being much help to you, but my heart goes out to you.
Do hope you can get some bereavement counselling.
Oh, and we'll done for giving up nicotine, when you probably felt you needed the prop more than ever! That shows strength, to start with.
You may want to contact MIND. https://www.mind.org.uk/about-us/local-minds/
Pet66 wrote:
Tue Jul 31, 2018 4:47 pm

Oh, and we'll done for giving up nicotine, when you probably felt you needed the prop more than ever! That shows strength, to start with.
Completely agree, from my earlier perspective, Dad also stopped smoking after mum died and this was a very positive thing - it confirmed to me his 16 year old daughter that I wasn't about to lose dad too- so important for your children to keep this up.
Jimmy, don't worry about just being on "autopilot" for a while. Have you also met what is referred to on the Way Up site as "Widow Fog"? Unable to remember much for long, having to write things down? I'm usually very organised, and I found this so frustrating.
12 years on I realise that this initial phase is the way the brain is struggling to adjust to the loss of a loved one and a COMPLETE change in life, sudden, unexpected, unwanted. Everything is affected, nothing is the same. This vagueness seems to be part of nature's way of shielding you from some of the shock. It will pass in time.
What I was completely unprepared for was the lack of energy. Grief is incredibly tiring. I would go to bed really early because I was exhausted....and I just had myself to look after.
Don't be too hard on yourself. For the next month, just aim for the absolute basics. Are the kids fed and clean? Have you done the washing up? That's enough.
I found shopping and questions from well meaning people difficult, so I shopped in the next town. If you are struggling, shop online, so much less stressful.
I always keep a diary, and reading the very brief entries of my feelings, I could see how I gradually picked myself up again. It's a LONG journey, but grief goes at it's own pace, you can't rush through to avoid the pain.
My son with learning difficulties misses his dad terribly, but he started using a phrase which I use too. We have lots of "happy memories" to look back on. Please make sure you keep talking to your kids about mum. Let them see you cry, and cry with them. My eldest son (29 at the time) and I hugged and sobbed together, a few weeks after my husband died. We live together, and are very sensitive to each others moods. We agreed that we wouldn't keep asking "How are you", but would carry on quietly, but would always tell the other "I'm having a bad day today". Help your kids to do something similar.