Can I ... Should I?

[rainbowcat]

Lo & behold, the doctor comes. Heaven help me, he asks Mum, does she want meds. “No, I’m fine” says Mum
I get him out the room, explain she is not going to ask, he needs to rephrase. Tell her you want her to have them. He ummed & arr’d. I am begging him. I’m tired. I can’t keep doing this. It’s me. Just me. My brother helps the night, but it’s me from 06.00 to 02.00. Please, tell her she needs it & you want her to have it
Back in he goes, tells her he wouId like her to have the meds to help her settle
“Ok” says Mum
Sam 1 - Doctor 0

OMG Sam, well done you!! The amount of times I have to remind drs, nurses, hospital staff, social workers, etc that MY FATHER HAS DEMENTIA AND LACKS CAPACITY is ridiculous, yet they still insist on ASKING his opinion!! He SHOULD NOT be asked, he needs to be TOLD, because if he's given the choice, his default answer is "no". Likewise your mum. "No I'm fine", her hostess mode doesn't want to cause a problem, her dementia doesn't fully understand (if understand at all) what she's being asked. Yet medical people STILL go through the "I asked and we can't force her" GRRRRR

Glad you won that battle. Cheering in your corner here.

EDITED TO ADD: YAY for the funding and sitters!! (((SAM)))

 

[rosy18]

Alleluya !!! Oh Sam I am so relieved for you. I hope that you have had a decent night's sleep and your dear Mum has had a peaceful night.
Well done Sam you've really had to fight for your Mums care and you've succeeded.
Morning ((((((((((hugs)))))))))) on there way to you, your Mum, brother and pooch. xxxx

 

[Batsue]

I'm really relieved for you Sam, I hope you slept well x.

 

[canary]

I hope this now means an end to the constant arguments
(((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))

 

[Amethyst59]

I hope you are both (you and Mum), all (you, Mum and pooch) waking up to a better day. You’ve done so VERY well x x x x

 

[Grannie G]

Well done Sam. I hope you get some peace now.

 

[Sam Luvit]

Morning All

Oh the difference it makes, to eat, drink, kiss Mum goodnight & climb into bed. I think the sitter is a little surprised that I didn’t go till midnight, but that’s 2 hours earlier for me & even though tired, it took a while to drift off

Sleep hobble down the stairs at 06.00, mums sleeping, so coffee in the early morning sun. Mum had an ok night, still doing the stop start breathing, but that’s our normal now. It doesn’t seem to worry anyone else.

Pooch got his old walk, double block. It was getting warm at 07.00, but cool enough for him. I’m not sure he agreed with the sudden increase in exercise, but we both needed it. He’s lying near mums bed, keeping watch

Mum shouted in her sleep, was just coming to as I got to her. She’s very disoriented this morning. I was holding her hand, saying “it’s ok Mum, it’s Sam, it’s ok”. I’m not sure she understood who Sam is, but she settled. I’ve swabbed her mouth, applied coconut oil & she’s drifted off again. Didn’t even ask for water

Brother commented, he thinks it’s Friday, but doing this, he now knows what I mean. It’s just another day. So what if it’s Friday, it makes no difference, there is no weekend now I’m sure in the past he’s struggled with my disinterest in what day it is, but he gets it now

I’m fingers crossed for a peaceful day. Not sure how carers 3 times a day is going to work, or what they will do. It’s not like she’s going to be having a wash or eating. I’m hoping it won’t cause her distress, with so many people coming in

It’s already 23*, expecting it to go up to 28* today. At least Mum shouldn’t be too cold

 

[Margi29]

I've just caught up with TP and your thread.

Three words sprung to mind reading it all

Shocking, furious and then delighted !!!

Finally someone is listening to you x

I'm praying both your mum and you got some rest last night ( I'm off to bed myself now, night shifts )

 

[Cat27]

Wishing you more strength to get through today Sam.

 

[2jays]

Hope your sleep was undisturbed and you manage to “just be” with mum today

I hope for you No more stoopid callers doing their not joined up thinking, only good things, or as good as they can be, from now on

xxxx

 

[2jays]

Just read your post

3 carers a day, use them for peace of mind if nothing else. Can’t imagine they will disturb mum too much. It’s company of a kind for you.

Put it this way..... hope they don’t disturb mum too much. It’s still company of a sort for you xxxxxxx

 

[rosy18]

If your Mum is settled when the carers come Sam try and sit outside for a little while in the sunshine and grab a little more needed rest.
(((((((((((((((((((((((((((((((((((((HUGS A PLENTY)))))))))))))))))))))))))))))))))))XXXX

 

[Prudence9]

Dear Sam, what a dreadful time you and your Mum have had, thank goodness someone, somewhere in the chain has finally heard you.
I would think you've educated that GP on dementia end of life care and oh boy did he need it.

So relieved for you that things seem to be calmer, and thankful for and to that amazing, fantastic person who turned up on your doorstep XXX
It's your strength Sam that's getting you and Mum through this and I hope your efforts now result in your Mum being pain and anxiety-free and you're finally getting some sleep and some quality time with her.
When the carers turn up, if your Mum's now bed-bound they'll be able to check her and do any personal care needed and that will take a huge load off you. You'll be able to have a coffee, CM, whatever gets you through and then return to a clean, calm Mum.
I so wish that for you.

Am sending (((hugs))) to build up your stock in the hug bank and love to you too xxxxx

 

[love.dad.but..]

The carers will be able to do a bit of personal care and mouth care to help keep her comfortable and for her dignity let them take that from you...just take each visit as it comes...take it as your time also to sit in the garden with a cup of tea...use them to ask any nagging questions they hopefully will be experienced for end of life care and whilst everyone may have different end of life many factors are common to all.

 

[Slugsta]

Morning all,

Will post properly later as short of time now. Just want to say. Hurrah!! Well done Sam! You should not have been made to fight the way you did but I am soooo glad you have finally got the help you need xxxx

 

[Toony Oony]

Hi @Sam Luvit

I have the stinking summer cold and cough that is doing the rounds in these parts. I have just had to pay a ma-hoosive half year tax bill. It is stinking hot here and I am sweating buckets BUT ............
I am doing a little victory dance to celebrate what you have achieved. (Glad you cannot see me, it is not a pretty sight, but I am SOOOOO happy for you!)

You have fought so hard for this. Hope you and Mum can have some gentle, important and meaningful time together now, with others taking some of the strain.

Love to all your family, especially Mum, you and Pooch

XXX

 

[Sam Luvit]

Morning @Margi29

It was a long long fight yesterday. I don’t know how many times I apologised for being snappy at people, or crying in frustration, but it got sorted.

Thank you, now get some rest. I know what nights are like now Uggg

 

[Sam Luvit]

Hi @2jays

I had a few “jolt awake” moments, but woke relatively refreshed. I’ve sat holding mums hand this morning until the carers arrived at 10.15 .... not so good, more calls needed I’m going to chill & then phone the agency

I mean .. I thought double handed wouId mean I was surplus to requirements. The lovely Carer has done more in 45 minutes than these 2 did in an hour

One stood watching, hands clasped in front of him. I thought he must be learning the job or something. In the end, I was handing him things & saying “hold that”. He was pleasant enough, but chocolate teapot comes to mind

When they left I found .. one sock & knickers in the lobby by the loo (still not found its mate). PJ top by the fridge, PJ bottom near the washing machine (I’d seen her hand it to him, pointed at the machine & said put it in there ... guess the floor was easier). Bowl of soapy water with top & bottom flannels on the floor near the loo ... not even emptied, never mind rinsed out Towel folded as small as it wouId go, so no chance of drying out

Asked him how long he’d been doing the job .. 7 months ... told him I’ll have him back when he’s done 10 months

Much was made of Mum not having a “slide sheet” (like I’d know what it is). I’ve phoned GP, got a nice receptionist who is asking DN to visit & bring one

Does the rubbish ever stop falling?

 

[Sam Luvit]

Hark at you telling me to take a break @rosy18

I’m still taking the hugs though

 

[Sam Luvit]

Afternoon @Prudence9

I was gobsmacked to see this person striding up the path. They said it didn’t feel like they’d done anything, but I took strength from someone being there. Someone I didn’t have to hold it together in front of. It helped

I am getting more “Mum & daughter” time today, although she’s difficult to understand today. I’m guessing at wires, telling her I must be going deaf, to try not to upset her

Mum got up onto the wheelchair (commode) & used the loo. She’s so stubborn. I got her off the chair & back to bed, saying I needed to see if I could. We managed, but it was tough work.

I’m dipping in the hug bank (I love that name now), not as much as yesterday, but still dipping in, so top,up hugs appreciated