Update on MIL.....

...forgive me peeps for the long post...i'm in need of letting off steam...feel free to ignore.....

My friends here will know from my posts these past 2 years of my MIL's declining health and the family's struggles to get her the care she needs. To summarise....she has demetia and vascular issues that resulted in her having her left leg amputated last September. Shes been as good as housebound since. No physio, no promised electric wheelchair. Her ramp and reclining chair were paid for by family as social care felt they wern't a necessity.(???) She has carers call on her 4 times a day to change her, dress her, make her a meal, but most days she no longer gets out of bed. Hubs calls every day on his way home from work and we call up twice on Saturdays and 3 times on Sunday.
The care package doesn't work as well as it should....hence we go as often as we do to do essential jobs like putting the bins out, cleaning the kitchen and seeing what shopping she needs and picking up meds from the chemist.

2 months ago, one of the carers managed to tip mum on to the floor from the stand they use to move her from room to room. If used correctly, this should be impossible. Mum wasn't injured as such, but spent 5 hrs on the floor waiting for the ambulance ( hubs went to sit with her but was advised not to move her). This led to the social services removing the equipment and replacing it with a more modern electronic one...but....the care agency staff had not been trained to use it resulting in mum more or less being bedbound until the new hoist could be ibstalled. So for 6 weeks she was sat in bed never exercising her good leg, never baring weight on it.
She was taken into hospital 4 weeks ago with the expectation they would remove her other leg. It is now fused at the knew so she will never be able to bare weight on it again. Also her stump from the previous op is dreadfully painful. The bone is almost sticking through the skin. They told us they would operate on the stump to make it more comfortable for her.
Mum was in hospital for 10 days then they changed their minds and decided to send her home having had no treatment at all. The decision had been made by mum and the family, but the consultant told us mum had expressed a desire to keep her leg so they wetent going to put her through an op unless completely necessary. We were govsmacked. We told mum what had been said, yet she denied she said she wanted to keep her leg. Because of her dementia, she often forgets conversations, yet, when 'capacity' tests are carried out, they always tell us she has capacity...which means her wishes are followed, regaurdless of the consultations with the family.
So.....she came home... in more discomfort and pain than ever. Our GP and district nurses are appaulled she was sent home as she is. GP tells us today she was perscribed a stronger painkiller...but she hasn't received any. The district nurse took pics of her stump....which she is certain is infected.
Anyway, today completely out of the blue, the hospital rang telling ys to get her to the hospital on Friday...the are going to operate on her stump!
Unbeliveable!! Shes only been home a week!! Getting her to the hospital isn't straightforward. Can you believe, they wont provide transport, so we have to book an accessable taxi which us very expensive( not an issue) but we usually have to book at least a week in advance.. so fingers crossed its available. Also, neither hubs or I can get the day off to go with her with a days notice......and her daughter ( a three hr drive away), can't come coz she has a netball match Friday night......

I could scream!!!!!

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Mamapolo2016 · F

What you are going through is so very difficult, Ruby.

During my husband’s illness (also with no help from his family) I found myself traveling to the hospital in the ambulance again, but this time I was the patient. It was minor, although at the time it seemed quite major - “vestibular vertigo caused by stress”. Simple English … I was so dizzy I couldn’t begin to stand up or function, and with violent vomiting.

The ambulance driver told me that if they pick up a patient four or five times, the next trip, it’s not the patient but the caregiver.

I would suggest a family meeting - by Zoom if necessary. Lay it all out for them. They don’t hear because they don’t WANT to hear, especially if the patient made their early lives miserable.

My husband was retired military and we had access to more resources and good insurance. Otherwise I’d have gone under much sooner. POA was also an issue, because less than a year after we married he was diagnosed with brain cancer, and neither of us had thought about changing it from his sister to me, or about my access to his accounts. I had to engage a lawyer to pry the POA from his sister so I could pay for care for him at home while I tried to keep my job.

And, during a devastating illness, he was except on rare occasions, sweet and cooperative.

In your shoes I would have gone mad.

If you two don’t take good care of yourselves, nobody will take care of her. Be mindful in the insanity.

RubySoo · 56-60, F

@Mamapolo2016
It was just husband she treated badly... her own son was a spoilt prince, she treated the girls ok. Hugs was farmed out to relatives in the school summer hols so he was safe.
Her own son and his family cut ties with us all about 16 years ago and nobody gas heard from him since. He fell out with Dad.....but chose to end all communications with us all even though there was no fall out with anyone else.
Hubs and sisters talk on the phone between the 3 of them all the time....mistly every day.
I rowed with the sisters just after Christmas because we were about to go out with friends and mum demanded we go and get her out of bed at 7.30pm.....we cant use the equipment, and the carer would be back at 9 to put her to bed so i said no. Mum was fine...not ill or hurt...but then sis from America called telling up to 'pop up to nake sure shes ok' i said no.....this was our.only time over xmas to see friends...us and our kids did shifts xmas eve till boxing day to sit with her so she wasnt alone.....so i got painted selfish. 🤨..but on the back of that i told the sisters i would no longer join in any talks about mums well being. I still support hubs all i can and still do my bit.....but i am looking out for my own sanity. Im not having a repeat of last summer when the memory clinic wouldnt give mum any more follow up care....but assigned me a support worker!!!
Says it all doesnt it....?

Mamapolo2016 · F

@RubySoo ♥ It does. Even when it works well, it’s overwhelming. I feel so bad for you and hubs. It’s a very particular battle…responsibility without authority.

When I visited the attorney about the POA, he said, “I will represent you.”

I answered, “I don’t want you to represent me. I want you to represent Tim and his best interests.”

He smiled. “I am persuaded that’s the same assignment.”

It was deeply affirming.

God be with you all.

RubySoo · 56-60, F

@Mamapolo2016 thank you. X

LunadelobosIAMTHEDRAGON · F

I am so sorry Ruby! I really would think her daughter would make her Mum a priority and to hell with the match, I mean come on.

Does she take your and your hubby for granted, that you will always be there for Mum?
If so, it is utter bollocks, is what it sounds like. It sounds like she needs to rearrange her priorities, and that is very hard to do for people, it's not fun, but sometimes, life demands it and it does not ask us, if it is convenient or if we are ready. Nope. LIFE happens and we are left to pick up all the pieces.
*You and your husband are doing just that, with aplomb!*
{I apologize, if I am overstepping. I prefer to leave diplomacy disguised as pussyfooting, at the door and speak my mind, am not a fan of prevarication. (And I apologize if my 'UK English', is incorrect.)}

I felt like screaming once I was done your post (and a few times while reading it).

It is not fair.

I thought Wales' medical system was better that what we deal with up here, in the Great White north.
And for what it's worth, it does still appear to be, according to what my friend tells me.

I am so sorry (hugs)

As a dear friend always tells, me, it is good to vent, so never you mind, vent as much as you like.

I am also confused as to how your MIL can pass a test when she is not up to necessary capacity? It doesn't make sense. Makes me question the people in charge of said test(s). But, I have long been suspicious of medical 'professionals', lost faith in them bit by bit. Sure, there are some good decent ones out there, but, they seem to be going the way of the dinosaurs.

So, it sounds like MIL is having her surgery but you are in a state (and who wouldn't?), because the designated ride may or may not pan out? Again, hospital really ought to be a partner in this and DO something to help here.

I am so sorry because it sounds like if different agencies and people just communicated clearly and in a timely manner some of this could have been avoided altogether. And your MIL would be doing (considerably) better. It makes me furious (again, apologies) that no one is held to account.

(It really REALLY sucks there are no do overs, in life, in such situations.
Lord knows, what I would not do, for some do over blessings.)

RubySoo · 56-60, F

@LunadelobosIAMTHEDRAGON my sister in law is a lovely woman and in fairness, have had a lot going on in the ladt few months.....her husbands mum and dad both passed in December.....but....yes.....we do feel she should be coming more often. We go away in 2 weeks. We booked in Jan and told sis the dates. When hubs reminded her last week.....she tells us her and her husband are in Scotland that week to scatter her MIL's ashes......so...she'll 'have to see what can do!" !!!!???
Hey ho.
We are hoping when mum goes in they will also remove her other leg. Surely things would actually be easier for her without a painful as-good-as-dead leg to hinder her??
We shall see where we are this time next week.....who knows...

As for the capacity test...its b*ll*cks. As longvas its deemed the person understoid what was said in that moment.....its deemed they have capacity. The fact they may forget in two minutes....or give a different response if asked again is irrelevant.......unreal....

LunadelobosIAMTHEDRAGON · F

@RubySoo I apologize for my language.
It is good that she is a nice person.
Death of parent is so very hard, death of two, so close, I can't imagine.
It will be 12 years I lost my Mama.

I hope they will do the right thing re. your MIL surgery. It makes sense.

Seems everyone's plate is overflowing.

I am glad you will be on holiday soon. I wish you a lovely, relaxing and fun time, you so deserve it.

BabyLonia · F

First of all, big hugs. This is a lot to deal with.

The problem is we have an aging population that the NHS cannot cope with, there is no consistency with staff and it is quite literally one in, one out.

Have you looked into a care facility at all?

RubySoo · 56-60, F

@BabyLonia thank you.
Yeah...communication inbtge NHS is shocking.
she won't hear of it. Wants to stay in her own home....and as she's deemed to have capacity.....thats whats happening!!!

BabyLonia · F

@RubySoo but if she has a dementia diagnosis is she fit to make those decisions herself? Does your husband or his sister have power of attorney?
I'm so sorry but the social care in this country is awful. It is a tick box exercise for them and i had such issues with how they treated my dad last year.

There comes a point where you jave to weigh up the difference between what they need and what they want,and it may be for you to have this convo with your hubs and SIL as they may be too emotionally trapped to think straight.

Certainly speak to them about looking at options.

RubySoo · 56-60, F

@BabyLonia the capacity test is a joke. It really is. Medics deem she has capacity....so her decision is final. Mum tells us she didnt say she wanted to keep her leg...but its on record to say otherwise. She will not accept she has dementia at all and gets very angry if we have to remind her of things that have happened or were said. I make things up and exaggerate it seems....but hubbys sisters are still more inclined to believe her over me. It was me fighting her corner, go to all appointnents for overa year, yet she wouldnt let me be a named contact to discuss anything with docs, so everything was going from meto sisters, then them called docs and calling me back saying 'doc said this' and me saying yes, i know i was there and them questioning me saying 'oh...mum didnt tell us that'.. .
No...i know shes forgotten.. she has dementia. Then theyd call docs back to clarify....like they didnt believe me.
Her (biological) daughter is POA ... she refused to allow my hubs and his sister ( her stepkids) to have any part of it.....yet its huvs here on the front line....still having to convey whats happening to the sisters and getting constantly quizzed and questions.
Social care is shit. Total shit
Believe me....all the questions have been asked my me and hubby....but we dont make any decisions. Her daughter HAS to convince herself the care is great so she can carry on her life 'knowing' mum is well cared for.
Both sisters asked my husband last night if one of us could take tomoz off to be with her. We can't with24 hrs notice....plus....if shes home after an op in a week or so......it will me me who is the only one able to be able to be around...which means i'll have to tell my agency im not available to work ( again) and loose my wage.
(That grates too......as neither of his sisters have ever worked since getting married.....i have too!!)
All this......and as horrid as it sounds....she was vile to my husband while he was going up and behaved appaulingly toward him since his passed away 4 years ago. Yet hes dutifully doing all he can for her......many would have walked away for sure. His own health and welbeing are suffering a great deal.
I often worry he will pop his clogs before mother the stress hes under.