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Struggling with the decline

Grannie G

Volunteer Moderator
Apr 3, 2006
71,115
Kent
I find it hard to accept hugs in person because I am afraid I will break and not be able to keep it together,
Oh I do know what you mean @millalm

As carers we all hope for support and understanding but our emotions are so fragile, it has to be measured so we can keep it together.

I remember our consultant`s secretary asking "and how are you" when I was talking on the phone, asking for an emergency appointment following a most upsetting episode with my husband. I was so choked up I couldn`t reply.
 

Moose1966

Registered User
Feb 10, 2017
145
Staffordshire
I’m also in that limbo land. I’ve become quite detached and feel like I am circling myself with a hard cloak. Not sure if it’s containing my emotions or stopping the hurt reaching me. Every so often something cracks it and I have to fight the urge to sob inappropriately. My mum was EOL in November...December....January.... February and I now have this conviction she will live forever. She’s very sad now. Immobile, not eating or drinking huge amounts, doubly incontinent but seeming occasionally slightly more lucid than she has been for a couple of years. The odd very sad comment when she says she is trapped in her bed or similar. That breaks my heart
Hi to all on here , my heart goes out to you. Mum is the same legs contracted so unable to sit up etc , bedridden and 100% dependant on amazing staff . Doesn’t communicate much and has been EOL for a year now . On a recent visit she seemed more lucid and asked me to chose her some clothes so she could get out of bed as she had a lot to do and not long to do it !! I went along and picked out clothes ( she hasn’t been dressed in months ) and went through the motions of come on then let’s get you up to which she said don’t be silly I can’t get out of this bed , closed her eyes went to sleep . The emotions that this disease puts you through are indescribable. We’re at that heart lurching stage .....phone rings , watching the loved one laying there each breath taken .... always waiting , wondering . I long for a day when I can breathe and enjoy the feeling with out the nausea and guilt .
 

Splashing About

Registered User
Oct 20, 2019
426
That sounds incredibly low staffing @millalm Is paying for a private carer an option compared to that. It makes you wonder if families or friends combined and paid for staff to cover two or three patients - would that be financially viable?
 

Splashing About

Registered User
Oct 20, 2019
426
Hi to all on here , my heart goes out to you. Mum is the same legs contracted so unable to sit up etc , bedridden and 100% dependant on amazing staff . Doesn’t communicate much and has been EOL for a year now . On a recent visit she seemed more lucid and asked me to chose her some clothes so she could get out of bed as she had a lot to do and not long to do it !! I went along and picked out clothes ( she hasn’t been dressed in months ) and went through the motions of come on then let’s get you up to which she said don’t be silly I can’t get out of this bed , closed her eyes went to sleep . The emotions that this disease puts you through are indescribable. We’re at that heart lurching stage .....phone rings , watching the loved one laying there each breath taken .... always waiting , wondering . I long for a day when I can breathe and enjoy the feeling with out the nausea and guilt .
:( so sad. It’s so hard. I cant remember life without dementia, my mum before dementia and can’t imagine a life without this constant cloud
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
:( so sad. It’s so hard. I cant remember life without dementia, my mum before dementia and can’t imagine a life without this constant cloud
It’s one of the most distressing experiences of life I have experienced - the continual little loses of the person a ongoing bereavement
process.
it’s hard sometimes to find a positive, but any glimmer of the person before dementia gives us hope.
 

Scotsfloat

Registered User
Dec 28, 2015
70
@Scotsfloat 12 people in a care home sounds amazing. Our Long Term Care homes are typically large institution like settings, there are 160 beds in my Mum's home. You have to go on a central provincial waiting list, having met very strict need for care requirements as determined by a CaseManager, then you pick 5 options and wait for your turn to come up. Unfortunately there are now so many people in crisis situations that the empty beds are being filled with them and seldom with people who have qualified to be placed on the list. There are no 'preferred' public homes because they are all government subsidized. There are 27 residents on my Mum's floor, 2-8 hour shifts of 3 personal service workers, 1 nurse and 1 dietary aid who serves the food at meal times. Overnight 8 hours there is 1 personal service worker and a 'floater' who goes between 3 wings of 27 residents. Most of the residents need some or total assistance with feeding, toileting and general mobility. There are only 2 residents who are ambulatory with no walking aids , both have dementia, the rest are on walking frames or in wheelchairs, most also have some form of dementia as well. You can imagine , the staff only has time to feed, toilet,shower and medicate the residents. There is a 'recreation person' who spends a couple of hours on the floor, but there are really no activities for most of the residents, only 3-4 residents are able to participate in the activities :( The cost of a room with private toilet and sink is $2700 a month, which everyone pays regardless of personal finances. The province subsidizes everyone for costs above that , you can apply for a reduction in fees but only if you are in a shared room at $1950 a month ( most newer homes don't have the option of shared rooms) and have poverty level income. The cost of a total private pay home is somewhere between $7,000 and $10,000 a month which is beyond the means of most seniors who didn't have a company pension plan. To put it into perspective our government pensions for all seniors over 65 are around $600 a month in Old Age Pension, if you or your deceased spouse worked for 40 years at 65 you can also collect an average of $1000 per person, and about $500 if you are the survivor of a worker. So my Mum gets $1600 a month and pays that and an additional $1100 a month for her room. She lived in a Private Pay Retirement Assisted living home for a year at $3600 a month with only 1 1/2 hour carer visit a day until she couldn't manage on her own. My Dad was in Respite once a month for a couple of years, then in a Care home for a year as well so the costs have eaten up most of the proceeds from selling their house years ago. So in addition to everything else there is the worry that her funds will last for 3 more years ( until she is 90) then it will fall to my husband and I to make up the difference . I have one brother who is mostly an invisible, he visits once every 2 months or so, because his wife says 'It is really hard on him to see her' Yes for real !!! My daughter is wonderful, she drops in at least 1-2 times a week for half an hour on her way home from work, and helps me with Mum's nightie ( her one arm is contracting so it can be a bit like wrestling!) My son and husband visit about once a month. In some strange way it is actually easier when it is just me as I don't have to see the anguish on everyone's faces when they see her. I just love her so much and she is so vulnerable I just can't Not go so I only rarely miss my daily visit and if I just can't get there I try to have one of them drop by just so she is not completely alone . I know it doesn't make sense to people who have not lived it, especially when they say,'but would she know if you're not there?' I always respond by saying, 'but I would know I wasn't there. It doesn't leave much time or energy for anything else but it is a choice I am making and my family are supporting my choice, but somedays it's just overwhelming isn't it?

I appreciate the hugs and support, thank you so much just for listening . I find it hard to accept hugs in person because I am afraid I will break and not be able to keep it together, so thank you and virtual hugs back!

Dementia really is a ***** isn't it.
Oh my goodness, what a terrible state of affairs. It sounds like a total minefield to get the appropriate care that is needed where you live. My mother originally went into her Care Home for respite when my father died and we discovered the extent of her cognitive decline and she needed to have assessments etc. I really liked the Home as it was more like a big house and my mum automatically assumed it was her house as soon as she got there so there was a familiarity about it. It costs about £3,500 a month now and has gone up every year, but she is so well looked after and I feel like I know the staff really well. I have been told by her doctor that she has a matter of months left so know we will have enough left from her house sale for her to stay there. Yes, it can be very overwhelming so make sure you remember your needs too and take care of yourself xxx