Our magic bitter sweet moments 🥰🥰🥰

[Eddcorner]

Turning quite farcical - my brother invites me back to make the peace but then the home say she can’t have so many visitors as protected meal time…..so off I am sent for the second time in a day 🙈🙈

Im all for protected meal times but does that mean we can never share a meal together again? 😢😢😢 eating together as a family is very importsnt to us 😢😢😢 I guess I will have to ask permission if we are allowed a picnic in her room …or make sure we have one before the 5pm supper time 😬😬

Gosh having dementia is the pits some time😢😢

Ooh I'd go bonkers me, I do not appreciate anyone telling me what to do where mum is concerned 😡 However I'm fortunate that mum is still at home and those involved in her care basically leave us alone unless we decide advice/extra input is needed. Difficult situation for you and your mum though @sdmhred having to abide by somebody else's rules... I just wouldn't be able to do it!

Have had to navigate that particular family dynamic too many times, I just grin (grimace) and bear it now. My expectations are low so it doesn't duly affect me as much anymore; as I saved all my patience and tolerance for mum (for which I have no problem) I did not suffer fools gladly

 

[Rachael03]

Sorry to hear your Saturday hasn't turned out as planned, with the good intentions of a group visit to your mum.

I don't have any experience with practices in residential care but can't imagine you are the only family to want to share food and meals with your loved one. Might be worth speaking to staff to find out what's possible for future, sounds like you already have a few good ideas up your sleeve. A cosy, at home picnic sounds perfect for the colder months.

It sounds like you've learned about a few rules/policies today theoufh circumstance rather than design...which is a tough one.

Will you get the chance to habit your brother, SIL and neice alone separate to your mum? Might be easier catching up without the messes dementia throws in the mix as well xx

 

[sdmhred]

I‘m just writing today off as ‘one of those days’…….. I had a lovely long walk this morning and randomly bumped into an old friend and had a good catch up…..so I shall focus on that from today……

Unfortunately my brother and family live a good few hours away so not easy to see them…..they will be in Malaysia seeing her side of the family Jan- April next year so I guess realistically that side of things will be on hold til then when I guess mum issues will be in a different place…

 

[Rachael03]

Sorry to hear that. It's hard to stay in touch with family even when they live close at times. Next time I hope you will be able to make up with an extra long catch up.

I have 4 beautiful nephews and naively thought I'd see them more now that I've moved home...but I don't! Better get them extra nice Xmas pj's this year to remain in their affections 🙈 (they defs don't get excited by my pj's but I refuse to buy them more toys)

I bet you're glad it's night time and you made it through yet another 'one of those days' - sent to try us!

 

[Knitandpurl]

Sorry to hear that. It's hard to stay in touch with family even when they live close at times. Next time I hope you will be able to make up with an extra long catch up.

I have 4 beautiful nephews and naively thought I'd see them more now that I've moved home...but I don't! Better get them extra nice Xmas pj's this year to remain in their affections 🙈 (they defs don't get excited by my pj's but I refuse to buy them more toys)

I bet you're glad it's night time and you made it through yet another 'one of those days' - sent to try us!

I’m really surprised you can’t stay fir meals. My Mum died last Summer but the Home she was in encouraged visitors to stay for meals, though they did like you to say in advance and we were also charged(fair enough). They also had no problems with in room picnics (though I never asked, just assumed ok). And we were always given drinks and biscuits if there at break times. And many yours ago when my step father was in a Home, again they were very happy for visitors to stay for meals. I assumed they all would be , something for me to look out for when/if OH needs to be in a Home. I would ask about Xmas, can you join her or take her to yours (wheelchair taxi perhaps), for dinner?

 

[jennifer1967]

if you are eating in the dining room with other residents? maybe they are thinking of the other residents dignity, privacy and respect especially if they have trouble feeding themselves or need to be fed.

 

[sdmhred]

So anyway the dreaded conversation today …I am told they cannot keep mum 😭😭

They are worried that as she will need hoisting she will become bariatric and their building does not allow for the equipment needed 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️

Have come home, had a big cry and back on the phone to see if some of the other places which were full are now not……..

Gosh - it’s awful isn’t it…..feels like our elderly vulnerable are shipped around like bags of potatoes where ever there’s a gap……

I am on a work course Wednesday and Thursday that I am not prepared to miss as its for me!

 

[Izzy]

Oh dear @sdmhred. I can only wish you strength.

 

[Neveradullday!]

Oh no, @sdmhred
You must be fed up and frustrated, too. More upheaval for you and your mum.
Surely all homes should be able to cope with bariatric folk.

Best of luck with the phone calls.

 

[Rachael03]

Sorry to hear that and really wishing you luck to get some positive answers from your calls xx

 

[nitram]

Just what you don't need @sdmhred

Surely all homes should be able to cope with bariatric folk.

May or may not be true.
If, for whatever reason, a home decides it doesn't want somebody as a resident argument is usually futile.

 

[sdmhred]

Thanks all - the support here is wonderful, much appreciated.

The Building is not purpose built so I can see the upstairs corridor would not suit if mum did need a wider wheelchair…..but I am not sure why they didn’t see that on assessing her originally….

And she’s definitely not bariatric now …in 2 years of my care she only put on 3/4 kgs

Its sad as she’s actually settled very well and no doubt another move will deteriorate her.

The admiral nurse and I talked about having her home but she said finding a care package to what I would need is nigh on possible round here…

I just dread her ending up somewhere with poor basic care or being forced into a long hospital admission 😢😢😢

 

[Eddcorner]

So anyway the dreaded conversation today …I am told they cannot keep mum 😭😭

They are worried that as she will need hoisting she will become bariatric and their building does not allow for the equipment needed 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️

Have come home, had a big cry and back on the phone to see if some of the other places which were full are now not……..

Gosh - it’s awful isn’t it…..feels like our elderly vulnerable are shipped around like bags of potatoes where ever there’s a gap……

I am on a work course Wednesday and Thursday that I am not prepared to miss as its for me!

I'm so sorry to hear your news @sdmhred and yes it's a sad reflection on the level of quality service provision available (lack of) for our loved ones... I wish I could offer you some words of advice regarding these difficulties and the emotional upset caused my friend but am no expert. Here as always anyways if you need us ❤

 

[Chizz]

Hi @sdmhred
Amongst other things you said
"They are worried that as she will need hoisting she will become bariatric and their building does not allow for the equipment needed 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️"

In the 1 1/2 years my wife has been bedbound, and using a hoist to move her from bed to chair, etc she has not put on weight - in fact, because she is using far less energy than she was when walking about, up and down stairs, etc,, she eats far less than she did, and has lost weight noticeably (I don't know in kg as in this period she hasn't been weighed, but her wedding ring is now loose).

 

[sdmhred]

People tend to lose weight in the late stage of dementia anyway don’t they @Chizz?

I guess maybe an excuse that they don’t want her ……my suspicion in all these homes is they don’t want anyone slightly complicated - but i wouldn’t say she’s particularly challenging! That has been my worry all along in knowing more care would be needed.

I’m being very mature on my evening visit and smiling all round 🙈🙈 Mum tells me she has enjoyed her day so at least that’s good,

Im hanging on to the knowledge that in the two years I did all the hands on care I gave mum a safe, fulfilling, loving and fulfilled time. That was my goal and I did it - whatever happens next that can’t be lost

 

[Chizz]

People tend to lose weight in the late stage of dementia anyway don’t they @Chizz?

I guess maybe an excuse that they don’t want her ……my suspicion in all these homes is they don’t want anyone slightly complicated - but i wouldn’t say she’s particularly challenging! That has been my worry all along in knowing more care would be needed.

I’m being very mature on my evening visit and smiling all round 🙈🙈 Mum tells me she has enjoyed her day so at least that’s good,

Im hanging on to the knowledge that in the two years I did all the hands on care I gave mum a safe, fulfilling, loving and fulfilled time. That was my goal and I did it - whatever happens next that can’t be lost

I'm sure @sdmhred that you've done your best. In my humble view, that in itself, in all the circumstances, trials and tribulations that you've both been through, is brilliant. WELL DONE. Don't let anybody say otherwise. As you say, that can't be lost.
Nobody else knows your mum like you do. Yes, it's possible that the staff at the home don't yet know your mum and vice versa, so bound to be some frictions.
Best wishes to you both.

 

[sdmhred]

So I went today to look at somewhere else. Very different so it’s hard to compare. A purpose built building and double the size. That’s why I hadn’t been before as I was concentrating on smaller, more homely places. I’m feeling conflicted as mum is clearly happy in the smaller place but if it can’t meet her needs then that’s irrelevant.
This home has a good reputation and the manager had good time for me and I could see that she wouldn’t stand for poor care on her watch. I am confident that they would be able to cope with what the existing home aren’t managing - but shame not in a smaller setting.

On the plus side it’s in a residential flat area so outings would be possible…..family are given pass codes so can access all areas whenever, her day would be managed better so less stimulation and we would be positively encouraged to resume our evenings watching TV together. It’s also slightly closer and round the corner from my best buddy.

more expensive but manager advised FNC would be probable as apparently now they are relying on the home much more and she could see the definate need there.

What would mum think I find myself asking?
She would like the ability to get out easier
She would like that I can visit easily and can relax with her
She will be less distressed if transfers are done with more skill
She won’t like moving ……but will have forgotten quite quickly…..


It feels such a responsibility- you want to get it right - but the ideal isn’t out there…

Anyway they will assess and we will go from there.

The sister home to where she is now also has vacancies but 30min drive away.
There is another smaller homely one around 20mins away but full.

 

[Chizz]

I'm sure you'll get there @sdmhred - there'll always be compromises.
Best wishes

 

[jennifer1967]

it depends on their ethos in that a bigger home may feel like a smaller home. there may be more residents for your mum to get to know which could distract from the moving. if the manager is good, it can be quite a community.

 

[sdmhred]

Well any doubt I have has been banished now. Mum has stayed in bed all day ….which is fine…but she is sat in a soaking pad and her speech is all over the place ….she has hardly had fluids all day and has just had loads with me so was clearly thirsty and dehydrated from her perspective…

Anyway they are going to check for uti at my request ….if we can get a sample.

I always knew this stage was going to be difficult

I say it again I banked 2 good years of care in mid stage dementia which is an achievement for us both!!