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Struggling with the decline

Scotsfloat

Registered User
Dec 28, 2015
70
Recently I posted about my Mum, 90; even though she has been in a CH for more than four years and had Alzheimer's for a good few years before this, her recent sudden decline somehow came as a bit of an unexpected shock.
In the last 10 days she has also started struggling to chew her food, has been diagnosed with a mild respiratory virus and developed a pressure sore on both hips. She is immobile, doubly incontinent, struggling with her swallowing, lost most of her coherent speech and relies on others to feed, bathe her etc. On the Gold Standard Framework she has gone from green to amber, which when I looked it up is in the 'weeks only'. A couple of weeks ago her doctor told me it was likely 'a matter of months', so this suggests a decline also.
My problem is she has plateaued for so long always bouncing back after any problems, that I can't quite believe she might actually be at the end of life stage. Even though it all sounds like she is declining, I seem to have gone into autopilot and not really taking it in.
I'm feeling a bit in limbo about it and would welcome any thoughts from anyone who recognises where I am or where my mum is, if that makes sense.
Thank you xx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,811
Yorkshire
oh @Scotsfloat
such a challenging time for you and your mum

I think the autopilot is a defence mechanism, maybe to prevent you hoping for what can't be... take each day one at a time
and have a chat with the staff, I found that they had a pretty accurate idea of how things truly were for my dad but waited to be asked as not all family want to ask
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,168
68
Dundee
I’m so sorry to read your news @Scotsfloat. I recognise the scenario from both my mum’s and my husband’s last days/weeks. It all seems so surreal and somehow we get through it. Thinking of you and wishing you strength.
 

Scotsfloat

Registered User
Dec 28, 2015
70
oh @Scotsfloat
such a challenging time for you and your mum

I think the autopilot is a defence mechanism, maybe to prevent you hoping for what can't be... take each day one at a time
and have a chat with the staff, I found that they had a pretty accurate idea of how things truly were for my dad but waited to be asked as not all family want to ask
Thank you for your reply and I think I do have a defence mechanism in place. It's like I don't want to think about it until it has happened and then I can process what's happened when something has actually happened, rather than living through all sorts of scenarios that may/may not happen. Does that make sense. The staff are really great at the Home and I do find it comforting to talk to them.
xx
 

Scotsfloat

Registered User
Dec 28, 2015
70
I’m so sorry to read your news @Scotsfloat. I recognise the scenario from both my mum’s and my husband’s last days/weeks. It all seems so surreal and somehow we get through it. Thinking of you and wishing you strength.
Thank you for your reply and sorry to hear you have had to manage this for both your mum and husband. I appreciate your kind thoughts xxx
 

canary

Registered User
Feb 25, 2014
11,690
South coast
I was told three times that mum was unlikely to survive, but she bounced back, so when she really did reach end of life I somehow couldnt believe it. This limboland is exactly what it is like for everyone. The waiting is horrible and everything seems so unreal.
Please continue posting and we can support you during this difficult time.
((((((((((((((((((((((((((hugs))))))))))))))))))
 

Scotsfloat

Registered User
Dec 28, 2015
70
I was told three times that mum was unlikely to survive, but she bounced back, so when she really did reach end of life I somehow couldnt believe it. This limboland is exactly what it is like for everyone. The waiting is horrible and everything seems so unreal.
Please continue posting and we can support you during this difficult time.
((((((((((((((((((((((((((hugs))))))))))))))))))
Thank you for your reply and that is exactly how it feels; I have a sense of disbelief that after bouncing back every time from whatever is thrown at her, there might actually be a time when she doesn't. I am finding it very hard to concentrate on anything and my stomach lurches every time the phone rings. Thank you for your support.
xx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Thank you for your reply and that is exactly how it feels; I have a sense of disbelief that after bouncing back every time from whatever is thrown at her, there might actually be a time when she doesn't. I am finding it very hard to concentrate on anything and my stomach lurches every time the phone rings. Thank you for your support.
xx
((((Hugs)))))
 

Splashing About

Registered User
Oct 20, 2019
405
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
 

Scotsfloat

Registered User
Dec 28, 2015
70
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
I really empathise with what you are saying; it's a never-ending cycle of thinking this is 'it' and then a bounce back and then just a plateau until we think it's the end again etc. It's hard to carry on with 'normal' life with it constantly in the background. My mother doesn't communicate at all and occasionally looks like she is welling up. I don't know if it's a good thing or not that she can't talk to me and quite frankly I don't know what I'd do if she was saying she felt trapped as your mother is - that must be so difficult for you to manage. It's nearly 4 years since my dad died and I don't think until my mother has let go, I will be able to process and grief properly for both of them. xx
 

millalm

Registered User
Oct 9, 2019
70
@Scotsfloat there is no "normal' life for us, and no one who understands other than those of us on this journey. I know exactly how you feel and what you are asking. The saying 'If you've met one person with dementia, then you've met one person with dementia' rings true. Every PWD is unique, and even their situations can change drastically from minute to minute. The exact symptoms you are describing presented in my Mum last March and she was deemed EOL, meds were withdrawn, she stopped eating and drinking and I thought we were in her final hours . Until she began to indicate she was thirsty. I didn't know what to do, nobody had told me that could happen, so I gave her a little thickened juice and that was the end of EOL . She slowly started regaining her strength, then appetite, then lucidity. This lasted for about 8 weeks then she began the slow but steady decline to where she is now, which is just about the same as you are describing currently with your Mum. I tell you this not to upset you, but to prepare you for the absolutely unpredictable nature of this bloody disease. Unfortunately all we can do is continue to 'soldier on' and try not to be consumed by this. I wish I could say I am not consumed by it but that would not be the truth :(

@SplashingAbout When it comes to having a loved one with dementia there is no such thing as inappropriate sobbing, so don't be so hard on yourself. Going through this slow torturous death march is good reason to do any sobbing, screaming, ranting, swearing that gets you through another day. I do my sobbing in my car outside my Mum's care home, almost every night now for the last 11 months since she was first deemed End of Life. She too looks so sad, and yet in the last week has been more lucid than in many months. We have had weeks where she doesn't speak at all, and as hard as it is to hear gibberish and fractured words , the silence is much worse. The few comments she makes almost always involve going home. She doesn't know us but still sometimes calls out for my brother and myself. This week she has made eye contact with me several times as if there is something she needs to tell me. My heart stops any time the phone rings in the night, and anytime the name of the home comes up on my cell phone Caller display. It is all I can do to drag myself there somedays, but then I remember that if I don't go and she has one of those lucid moments I won't be there to cherish it and so I 'soldier on'.

I wish us all the strength to carry on, and send thanks to all of you who help us share our feelings with the only people who truly know how we feel.
 

Splashing About

Registered User
Oct 20, 2019
405
This is the disease that just keeps giving :(

Throughout we have faced awful changes and struggled to adapt but imagining this is the worse it gets.... practically it’s a lot easier because she is no longer physically able to run amok but emotionally I feel so much for her trapped in her bed
 

millalm

Registered User
Oct 9, 2019
70
Further to my previous post
To be completely honest it is also the thought that the homes here ( Ontario, Canada)are so short staffed if I don't go she just sits in a wheelchair staring off into the distance all by her lonesome and that thought just breaks my heart
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
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
Oh my lovely my thoughts are with you, it’s heartbreaking
 

Scotsfloat

Registered User
Dec 28, 2015
70
@Scotsfloat there is no "normal' life for us, and no one who understands other than those of us on this journey. I know exactly how you feel and what you are asking. The saying 'If you've met one person with dementia, then you've met one person with dementia' rings true. Every PWD is unique, and even their situations can change drastically from minute to minute. The exact symptoms you are describing presented in my Mum last March and she was deemed EOL, meds were withdrawn, she stopped eating and drinking and I thought we were in her final hours . Until she began to indicate she was thirsty. I didn't know what to do, nobody had told me that could happen, so I gave her a little thickened juice and that was the end of EOL . She slowly started regaining her strength, then appetite, then lucidity. This lasted for about 8 weeks then she began the slow but steady decline to where she is now, which is just about the same as you are describing currently with your Mum. I tell you this not to upset you, but to prepare you for the absolutely unpredictable nature of this bloody disease. Unfortunately all we can do is continue to 'soldier on' and try not to be consumed by this. I wish I could say I am not consumed by it but that would not be the truth :(

@SplashingAbout When it comes to having a loved one with dementia there is no such thing as inappropriate sobbing, so don't be so hard on yourself. Going through this slow torturous death march is good reason to do any sobbing, screaming, ranting, swearing that gets you through another day. I do my sobbing in my car outside my Mum's care home, almost every night now for the last 11 months since she was first deemed End of Life. She too looks so sad, and yet in the last week has been more lucid than in many months. We have had weeks where she doesn't speak at all, and as hard as it is to hear gibberish and fractured words , the silence is much worse. The few comments she makes almost always involve going home. She doesn't know us but still sometimes calls out for my brother and myself. This week she has made eye contact with me several times as if there is something she needs to tell me. My heart stops any time the phone rings in the night, and anytime the name of the home comes up on my cell phone Caller display. It is all I can do to drag myself there somedays, but then I remember that if I don't go and she has one of those lucid moments I won't be there to cherish it and so I 'soldier on'.

I wish us all the strength to carry on, and send thanks to all of you who help us share our feelings with the only people who truly know how we feel.
Thank you for your reply and please do not worry that you might upset me - this bloody disease no longer surprises me with it's cruel twists and turns. It's all very surreal. I try my hardest to push the situation to the back of my mind, but inevitably it breaks through. My mum will be 91 in March and honestly, as awful as it sounds, I hope for all our sakes it is her last birthday. Sending hugs xxx
 

Scotsfloat

Registered User
Dec 28, 2015
70
This is the disease that just keeps giving :(

Throughout we have faced awful changes and struggled to adapt but imagining this is the worse it gets.... practically it’s a lot easier because she is no longer physically able to run amok but emotionally I feel so much for her trapped in her bed
I understand what you're saying about it being easier now she is no longer 'running amok'. Before my mum became immobile she would be in and out of everyone else's rooms and into everything! She would never sit down, but now I can sit next to her and have a bit of time together, even though she has no idea who I am and just has a faraway, sad quizzical look on her face. :confused: x
 

Scotsfloat

Registered User
Dec 28, 2015
70
Further to my previous post
To be completely honest it is also the thought that the homes here ( Ontario, Canada)are so short staffed if I don't go she just sits in a wheelchair staring off into the distance all by her lonesome and that thought just breaks my heart
Oh that sounds really difficult; can they not even play music for her? I am in the UK and was lucky with my mum's Home; there are only 12 people in it and the staff are all lovely and have lots of activities. I sold her house so should have enough money to be able to afford it for as long as needed. Do you have much choice with Care Homes in Canada? Have the visits mostly fallen to you or are there others that could visit too? Sending hugs and support xx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
I understand what you're saying about it being easier now she is no longer 'running amok'. Before my mum became immobile she would be in and out of everyone else's rooms and into everything! She would never sit down, but now I can sit next to her and have a bit of time together, even though she has no idea who I am and just has a faraway, sad quizzical look on her face. :confused: x
I always & still believe that the heart has memory cells & cling to the thought that in his heart Dad felt safe & loved when I visited.
(((hugs)))
 

millalm

Registered User
Oct 9, 2019
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.
 

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