Can I ... Should I?

[Sam Luvit]

Hi @Prudence9

I didn’t realise that about costs. I just figured the “apply for funding” was the same financial assessment we did a few months ago. Lots of forms, with a gleeful, you’re self funding result. I’m happy to spend mums money, it’s hers to spend, but shares take about a month to turn into hard cash & each sale costs, so I need to plan how much if that’s needed. My head hurts

The care company said they wouId most likely take on the extra hours as they were already providing. Fingers crossed they don’t send any new ones. I’m just beyond training anyone else.

I’ve been pretty blunt about what I want. I’m not forcing Mum to eat or drink. She can eat if she wants it, drink whatever she wants & sleep anytime. She’s so tired now. She wakes for the bathroom or a sip of water, then her eyes droop & she’s asleep again. I’m pushing paracetamol & I won’t take no for an answer about the oramorph, but anything else is definately Mum led

Anyone refusing to give Mum pain relief will be relieved & I’ll be doing it myself.

 

[jugglingmum]

Sending hugs xxxx

The incident on the stairs sounds very scary.

I know you said a stairlift isn't an option in your house - but have you worked out where a bed could go in a downstairs room. Many on here use a dining room or front room with commode and washstand, I think you said you have a downstairs toilet but either too small or your mum doesn't use it.

Just thinking this is a stage you need to think ahead to fairly soon.

 

[Prudence9]

Sending hugs xxxx

The incident on the stairs sounds very scary.

I know you said a stairlift isn't an option in your house - but have you worked out where a bed could go in a downstairs room. Many on here use a dining room or front room with commode and washstand, I think you said you have a downstairs toilet but either too small or your mum doesn't use it.

Just thinking this is a stage you need to think ahead to fairly soon.

Very much second this jugglingmum.

Sam, when they visit to discuss your Mum's care, see if they can help with this, provision of a commode as well as a bed and mattress and if they could provide the extra Carer time for you instead of racking up further costs with the Care Agency.
We had no financial assessment, it was NHS provision.

Sorry to bombard you with all this info when you must be so exhausted but I really don't want you to miss out on anything that could ease the physical, mental or financial burden for you both.

(Smiled to see you would be "Proactive" too about refusal/hesitancy over pain meds... )
xxxxxxx

 

[Sam Luvit]

Hi @Toony Oony

I think Mum has forgotten the conversation, but says he was not nice. She described him as 4 foot tall & leaning over her. So she lopped a foot off his height & made him into a wizzed nothing. I’ve told her I won’t have him in the house again. That seems to have calmed her

DN & Hospise are coming tomorrow. It’s a very busy house these days. The Just in Case box has arrived.

Thank you. It’s a rubbish time, but at least I’m getting some answers & you guys are keeping my spirits up too

 

[Sam Luvit]

Hi @love.dad.but..

I seem to be meeting lots of “too busy to be bothered” doctors & a few very kind ones. The DN & Hospise Guy both sounded very caring in the phone, so hopefully they will be in person too.

I’m so sorry you had a rude one, but thankfully your dad was unaware, it must have been awful for you at an awful time.

I was a Bereavement Officer in one job, we had specific training. You’d think, hope, such training wouId be given to GP’s, after all, they must see lots of very sick & dying patients. It just beggars belief that some in the “care” profession are so very uncaring

 

[Sam Luvit]

Good, thats one less thing to worry about. He sounds lovely.

He was. An absolute charmer & Mum loved him

 

[Sam Luvit]

Hi @jugglingmum

The stairs episode was a few seconds of blind panic, followed by figuring how to handle it. Fortunately she was able to walk on after a relatively short time, but it had me thinking about what happens next. This can’t just go on. I’m thinking of what needs to be moved in the lounge. I don’t want her confined to upstairs.

Mum doesn’t like the downstairs loo, but I suspect she will learn to love it if it’s that or a commode

I’ll be having a garage sale to make room for all the extra furniture, now 2 single beds, leather recliner, coffee table ... I can’t wait

 

[Sam Luvit]

Hi @Prudence9

They talked of the profile bed, air mattress to relieve the occurrence of pressure sores, so I’m going to give brother a tape measure & get our heads together on that this evening. They are coming tomorrow afternoon, so I want to have my ducks in a row by then.

I’ll have to ask what they provide foc so I can plan. They have the experience, so I’ll listen to them & her GP can go take a hike ... chocolate teapot that he is

I just had a conversation with someone & I said I am not forcing Mum to eat. She was shocked at me. I then said, forcing her to eat will just prolong the time she’s in pain. That seemed to go in.

Why do people think you should force someone to keep going even though it means more pain?

Oh I can promise you, pain meds will be given. I’m not watching her in pain for anyone or anything

 

[Amy in the US]

Sam, just stopping in to say hello and drop off some (((hugs))).

I do hope the hospice people are helpful, supportive, caring, kind, and CONSIDERATE, to your mum and to you.

We have Doctors without Borders, why can't we have Doctors without Lousy Bedside Manners??

So sorry you had to deal with that. As if you didn't have quite enough going on at the moment.

It is smart of you to think about options that don't involve stairs. I hope the hospice people will have ideas/suggestions for you as well.

Here are a few more ((((hugs))))!

 

[love.dad.but..]

Hi @Prudence9

They talked of the profile bed, air mattress to relieve the occurrence of pressure sores, so I’m going to give brother a tape measure & get our heads together on that this evening. They are coming tomorrow afternoon, so I want to have my ducks in a row by then.

I’ll have to ask what they provide foc so I can plan. They have the experience, so I’ll listen to them & her GP can go take a hike ... chocolate teapot that he is

I just had a conversation with someone & I said I am not forcing Mum to eat. She was shocked at me. I then said, forcing her to eat will just prolong the time she’s in pain. That seemed to go in.

Why do people think you should force someone to keep going even though it means more pain?

Oh I can promise you, pain meds will be given. I’m not watching her in pain for anyone or anything

Because they lack a real understanding of dementia and perhaps also end of life. Dad gradually lost interest in eating most probably through lack of what and why but also someone a long time ago posted on TP something very wise like ....the person is not eating or drinking because they are moving through the end of life process of dying not trying to eat and drink to live. I can't remember the exact words...but when you witness it...oh so true.

 

[Margi29]

Because they lack a real understanding of dementia and perhaps also end of life. Dad gradually lost interest in eating most probably through lack of what and why but also someone a long time ago posted on TP something very wise like ....the person is not eating or drinking because they are moving through the end of life process of dying not trying to eat and drink to live. I can't remember the exact words...but when you witness it...oh so true.

Same with my dad at the end @love.dad.but.. I couldn't have put it better myself into those words.

 

[Margi29]

Sending hugs @Sam Luvit x

 

[Prudence9]

Glad things are moving quickly @Sam Luvit , they do tend to once that team get involved - if they're a good team!
Yes, @love.dad.but.. said it well and a lot of people have no idea...

Sending you hugs for tonight and loads of good luck wishes for tomorrow, hope you sleep well later xxx

 

[Sam Luvit]

Hi @Amy in the US

Ooooh. Hugs, hugs & more hugs. I’m so lucky Thank you

The hospice people sounded loverly on the phone, so I feel better about that. They work with the DN to provide a “joined up service”. I feel like everything is being thrown at me (in a good way, but very emotional).

I’ve taken brother in the lounge, we’ve measured up & worked out where the profile bed can go, if that comes. He’s on board for getting Mum to agree. No idea where I’m going to move the chair to, although the tip is looking like an option (The tip is the landfill site you can take rubbish to)

I feel like setting up a “name & shame” for the rubbish bedside mannered doctors. I only know 3 very good ones, they all only work part time

 

[Sam Luvit]

Hi @love.dad.but..

I feel like Mum is forcing herself to eat a little because she feels like she should. If she wasn’t in pain, I might be tempted to encourage her to try to eat, but her pain level is so high, (she’s actually asking for pain relief & that’s unheard of with her), that I don’t think it’s the right thing to do. It feels cruel, almost guilt tripping her into keeping going.

Mums not hungry at all. No interest in food. She might smell something I’ve cooked & then say maybe she should have something, but watching her, I can see she doesn’t want to eat.

I think I too read that post, yes, end of life is about dying, not eating to stay alive. It’s a very different thing.

 

[Sam Luvit]

Sending hugs @Sam Luvit x

Gratefully collected

 

[Cat27]

Thinking of you Sam.

 

[Slugsta]

Evening all,

Sam, I am so glad that you have - finally - had dealing with 'Care Professionals' who actually do care!

My Mum's situation was complicated somewhat by being in a care home, so I could not just give her the meds I knew she needed My MIL died at home, as a result of cancer primarily, and the NHS funded Marie Curie nurses to sleep over several times a week to give my SIL (who was living there) a break. I am really hoping this kind of thing will be provided for you too Sam.

It is utterly iniquitous that people with dementia should have to fund their own care, when those with other conditions don't However, that should not be an issue now that your mum is now being looked after by the Palliative Care team. Things like the bed and recliner chair, pressure mattress etc should all be provided (loaned) FOC.

You are absolutely right to let your mum eat and drink as and when she wants. I think the saying is 'They are not dying because they are not taking food and drink; they are not taking food and drink because they are dying' The body no longer needs the nutrition as organs are shutting down (which is how my Mum carried on for 19 days with no food or even a sip of water!).

I'm sorry, I know these words seem so harsh when they are written down like this (((hugs)))

 

[Sam Luvit]

Glad things are moving quickly @Sam Luvit , they do tend to once that team get involved - if they're a good team!
Yes, @love.dad.but.. said it well and a lot of people have no idea...

Sending you hugs for tonight and loads of good luck wishes for tomorrow, hope you sleep well later xxx

Hi @Prudence9

I feel like I’m running out of time. I want to wait until the experts have seen Mum before telling youngest (who adores his Grandma & plans to visit again next weekend) or eldest who is always so busy. Eldest promised last weekend he wouId phone during the week .... I’ll let you know when that happens

It’s that, do I tell them now, or do I leave it a few more days

I’m well hugged Thank you, I’m greedy enough to keep in taking them. I’m hopeful for tomorrow & I really hope it’s a quiet night

 

[Sam Luvit]

Thinking of you Sam.

Thank you