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
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