A Cautionary Tale

Caring for someone with MS
1

I’ve posted a couple of times but this one is probably the hardest. I didn’t want to post but I’m hoping someone else caring for their partner might learn something and I wanted a little rant (hope you don’t mind)

On the 26th Feb my beautiful partner of 18 years passed away aged only 37. Leaving me and 3 kids (20, 15, 10 totally adrift) She was diagnosed in 2011 with Highly Active RRMS. It hasn’t been a great journey and I feel very let down by medical caregivers but shit happens. She died due to blood clot to the lung or “Pulmonary Embolism” as they call it, totally no warning, no signs, nothing. Here one minute, gone the next. So here is my cautionary tale.

No one ever mentioned blood clots, my partner had tons of caregivers, GPs, M.S. clinic, O.T, Social work. They all done reviews, risk assessments but none ever mentioned DVT or blood clots as a potential issue, she wasn’t being treated for this. Attending A&E Dr thought this was crazy. If you are immobile you are 3 times more at risk. Speak to a caregiver about this if you or your partner spend longer than normal periods immobile. The risk increases if you take Tysabri and Baclofen (if female the risk increases further if you take certain contraceptive pills) at the same time none of them ever mentioned the severe cognition issues (the forgotten symptom) either so why I’m surprised is beyond me. I have spoke to 2 other M.S. patients since in similar circumstance and neither have had blood clots/anti-coagulants mentioned by their caregivers either. Speak up if your partner can not, be strong, you are their voice.

Get married: If you are just partners then for the love of god get married. When push comes to shove you will mean nothing if you aren’t married, don’t put it off, just get down the registrar office or get one in if your partner isn’t able to make it. I put if off, my partner wanted to but I didn’t want to rob her of her big day. Now 18 years mean nothing, i wasn’t able to register her death, not able to access financial support - bereavement support for married couples allows for a one of payment of £3500 and 12 monthly payments of £150 (certain circumstances) - unmarried you get nothing, cause my grief is cheaper apparently. I can apply for the £750 funeral payment but they involve lots of invasive questions as to why you aren’t begging off family members to pay for your loved one’s funeral. I can’t even close bank accounts or settle her estate because no one will speak to me and want the legal next of kin. Write a will, get them to write a will. (bereavement support is changing on 2nd April to allow you to receive help from family/loans/etc without decreasing the £750. Also increasing the time to apply from 3 months to 6 months)

Family: don’t count on them. Oh they will say lovely platitudes and offer lots of support. Her mother who had been in my house a grand total of 3 times in 2017 and 1 in 2018 took over, oh they did consult me, I went with her (the mother) to the funeral directors and she picked a lovely funeral, her 2 brothers, one of which hadn’t spoke to his sister in 3 years and the other who was sporadic at best but at least tried to try done a good job but when the funeral director asked who’s name the bill was going in they all looked at me. £6600. It will be a nice funeral tho, I don’t care the cost, tbf I always expected it would be me who did and I’d pay anything to give her the special day I never had to the chance to but for the love of god get life insurance or a funeral plan. Yes it will cost lots monthly and money will no doubt be tight but when you have nothing £6600 is scary, no you can’t pay that all up. You have to pay council £2100 for plot and to open the grave (if you go with burial, still 1200 if you go with cremation). Not one of them have offered so much as a penny to help… but i’m sure they will do a nice reading…Her dad (oh yes there is a dad, he lives in America, the land of plenty.) He asked if we could delay the funeral 2 weeks cause he could get a good price on tickets.

This isn’t the norm

In retrospect:

Get married (life really is too fucking short)
Get a life insurance/funeral plan (you are never too young)
Have a conversation about the aftercare
Write a will or at least a letter detailing what you would like to happen
Take care of yourself, no one else will
Smile and remember your partner, they were worth every single minute or it. What doesn’t kill us makes us stronger.
Good luck x

2 Likes
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I can only say I’m sorry for your loss and the less than thoughtful family members, but also: THANK YOU, my wife is currently less mobile than we would like and has gone back on to Baclofen, so I’ll bring that up with the staff tomorrow when I see her in hospital.

There is an awful lot that’s not right about our medical profession as a complete entity, individually the staff seem to be good and caring but once you put the whole thing together something goes awry.

Not much left in the way of close family here, mostly hers, (and not worth a cup of cold wee).

Already married (46 years).

Don’t do life insurance, but there’s enough stashed for funerals.

Wills written.(and son has list of bank accounts, ISAs, investments etc).

I do take care of myself, as you say, there’s no-one else to do it.

I’m always smiling inside, (but am constantly chided for not doing so openly, I just have an unhappy face, but it’s the only one I can use.

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So,So sorry mate. This has got to be the saddest, most honest outburst I’ve ever read. Tell your partners Father (whatever) to f off, with 3 kids you need to think of you & them. The Father obviously hasn’t give a chuff otherwise he wouldn’t have left 3 grandchildren. I’m gutted you’ve been let down badly by those relied on. I’m devastated for you & your kids. Some random stranger as I am, can’t give no advice, but I can offer support, albeit virtually, I truly wish you every luck, will be thinking of you all, keep in touch Tracey xx

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How sad coleisgone. You are spot on about NHS; folk do their best but it took almost a year for them to diagnose my RRMS. I have said in here in other threads MS patients are lumped in and dealt with by Neuro consultants none of which are specialists in MS. When I went to see my Neuro she admitted as I am a qualified pharmaceutical chemist I would know more about DMT drugs than they would. Not much assurance there. On last visit to see them outpatients clinic was flat out and speaking to another patient with RRMS they commented “coming here this last 10 years+ but don’t know why as get the same advice always to keep taking my medication”. Of course their RRMS had stabilised. Was diagnosed about 2 years back and at 55 married my partner. Have managed to get life insurance policy which will hopefully cover my end of life costs. Also in process of finalising my will which is being slightly complicated as I also own an overseas property. But will finalise by start of summer. So am already working through the checklist you have recommended. GOOD LUCK AT YOUR END.

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You and the kids have my deepest sympathy, doesn’t sound like much has changed in 28 years. My husband died very suddenly in totally different circumstances but cause of death the same. Having insurance and them meet their obligations…two different stories. I can relate to every thing you say, swap America for Canada-something that still riles me if I think about it as he died Sept funeral Dec, so NO, I was not waiting any longer, you are correct not the norm, definitely not for a Baptist minister…Very good advice, All look after each other and stay strong together. Good luck to you and yours for the future.

Alison

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I’m really sorry for your loss. I’m only just diagnosed with ms, but can relate to your posting because I lost my younger and only sister 6 years ago. She was 38. My dad has been in and out of hospital since I was 18 and my mum has had breast cancer twice. I’m not writing this to compare the crap, just so you appreciate I genuinely know where you are coming from. My mum, despite a very rocky marriage has saved my dads live at least three times. Luckily my mum was a trained srn ( qualified nurse) she spotted my dad was bleeding internally to death, literally just in time to save his live when in was in hospital. My dad had a heart value transplant in 1989 ( a mechanical valve via open heart surgery) whilst this means he has reached, currently the age of 74 which he otherwise would not have done, due to taking warfarin he has had major complications everytime he’s had an operation. Basically last time they had overdosed him with anti coagulants, and he was dying from internal blood loss. My mum questioned the on duty junior doctor, raised concerns with the ward sister and literally fighted (verbally) with the hospital staff (been told that unless she calmed down and moderated her behaviour she would be throw out of the hospital) good blxxxx job she did and eventually they did tests and nearly crapped themselves. He had to have I don’t know had many pints of blood transfused and was in intensive car and HDI for weeks. The whole episode was extremely stressful. Thank god my mum knew her stuff - but as you have experienced not everyone is able to challenge or even knows to ask questions. You have been extremely considerate in posting on here, you could literally save others lives.

With my sister she had nothing, luckily my parents although certainly not rich could afford the funeral costs, as you say they are not cheap. Just a thought, are you in a union as you can claim I think it was £500 towards the costs (it all helps). Did she work at some point with a pension scheme? I’m just trying to think of things to help you at this point in time. Most of all, if you need to come on here to vent do so - anger is part of the grieving, but I’m pretty sure you already know that, and by helping others as you have already done, you can take some small crumb of comfort. I don’t normally go on this bit of the forum, but your thread title caught my eye. I truly wish you the best over the coming weeks and I’m sure your partner will be watching over you and your children from heaven.

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Sorry for you loss coleisgone, I would reinterate the excellent advice. My mom died last year and she did have a funeral plan. First thing I did when it was all over was (a) buy a funeral plan (not gonna put that on my kids), and b) appoint a power of Attorney. You can do this years in advance and it avoids the whole estate being held up in probate.

Appoint a next of kin

Make a will

Buy a funeral plan.

Appoint a Power of Attorney - there are 2 types, one for Health and Welfare, so you nominate who decides if you go in a home, if you wish for a DNR, if you wish to be organ donor. the 2nd is for finance, so if you are incapacitated

Make your wishes known. You want flowers? Music? Crem or burial? And yes the cost can be expensive. But think, would i rather they spent the money on their future. We found that my maternal grandma had purchased a plot in 1922 - never knew that at all! We scattered the ashes there.

I reccomend the Natural Death Handbook Natural Death Centre .org - The Handbook & other publications

Its worth the money and a wealth of info.