Reality of Situation

[Scotsfloat]

My Mum, 90 has been in a Care Home for exactly 4 years. My Dad had been her carer but died shortly after her admission there. When she first went into the Home, I feared the worst but soon realised she was actually in more of a middle stage of Alzheimer's as was still able to walk and talk and recognise me. She seemed to stabilise as she was cared for well and her anxiety lessened. During the 4 years in the Care Home she has declined, but quite slowly so that it has not been very noticeable. However, I have had a call to say to the SALT team has been to visit my mum as she was having trouble swallowing and was coughing a lot when eating and now has all food/drink thickened. It was at this point that the reality of her situation really hit me; she is now doubly incontinent, very frail, unable to utter more than a couple of words, hasn't recognised me for at least 2 years, she cannot stand up or walk and sleeps for most of the day and has recurring pressure sores. She is unable to feed herself and requires help for all her personal needs. She just has a far away look in her eyes and looks as if everything puzzles her. Most of these changes seem to have happened in the last 6 or 9 months. I dread to think what might happen next; how else might she deteriorate? On my last visit she was being fed by a carer and was resisting; she was wearing a bib and had a sippy cup and it looked like she had gone round the life cycle and ended up as a baby again, which was so hard to see and to be honest rather selfishly, I wish it was all over. I'm sorry for what seems like an aimless post and I know plenty of people on here are going through far worse, but it helps to write things down. If anyone has had a similar experience it would be really helpful to hear from you.
Many thanks.

 

[Splashing About]

I don’t think it’s selfish to wish her suffering to be over <<<hugs>>>. This is so difficult

I am in a similar situation however mum can swallow fine. She just won’t.

 

[Scotsfloat]

I don’t think it’s selfish to wish her suffering to be over <<<hugs>>>. This is so difficult

I am in a similar situation however mum can swallow fine. She just won’t.

Thank you for your reply; I think I have suddenly realised just how far down the track she is, whilst still knowing it could still go on for a long time. That sounds odd that your Mum can swallow but chooses not too, that must be so frustrating for you. It really is so difficult isn't it.

 

[Delphie]

I'm in the same place as you. When my mum went into care she was walking, talking (confabulating almost constantly but a stranger might've been fooled into thinking she was fine, for a bit at least) and she knew who I was most of the time.

She's now doubly incontinent, has to be fed (yup, sippy cup included) and seems to have no quality of life left. She doesn't appear to be looking at anything even when her eyes are open and her response to food and drink is automatic. She opens her mouth a bit when something touches her lips. She can do literally nothing for herself.

She would without question be horrified if she could see what has become of her life and I'm sure wouldn't want to continue like this. I know I wouldn't if it was me. But her heart keeps beating and we carry on, her breathing and me visiting, hoping and now saying out loud to friends and family that I wish she just closed her eyes and went to sleep forever. Most of the time I don't even feel guilty but sometimes I really do. As you say, reality hits. My mum is dying in front of me and I want her to hurry up. What kind of a hard hearted cow am I? But the routine of it takes over those moments and the guilt goes away again because wishing my mum would pass away is now my new normal.

I don't think what I've said will help you much. Just know you're not alone. Xxx

 

[Buskitten]

You’re definitely not alone ❤️

 

[Sirena]

I can understand how you feel about the 'sudden realisation' of her decline, the whole dementia journey is so difficult and then you get sudden jolts like this.

My mother has been in a CH for two years and is like a 2 or 3 year old now, she's frail but mobile and can still eat and drink with prompting, but is incontinent. When she first arrived at the CH I noticed a few late-stage residents in the lounge, and I realised that if my mother lives long enough she will be back to effectively being a baby, immobile, verbalising only sounds rather than words, being fed. The residents are very well cared for and one late stager seems to be exactly the same as she was two years ago. I agree with you that I can see little point in a life like this, it's seems a cruel existence.

 

[Duggies-girl]

It's my worst nightmare. Dad is still continent but sleeps 20 hours a day, can just about get himself to the bathroom with directions from me but his abilities are disappearing fast. He is unable to do anything much now other than watch a quiz on TV He still eats but very little and I have to remind him to drink. His home is a bit of a mystery to him and he is mostly unaware that I am there.

He has had a pacemaker for years and when it was recently checked the nurse said that he does not really need it because his heart is strong.

He also has a nasty cancer that seems stable but is likely to rear its ugly head at some time in the future.

I don't want him to get any worse but it is inevitable.

 

[kindred]

I'm in the same place as you. When my mum went into care she was walking, talking (confabulating almost constantly but a stranger might've been fooled into thinking she was fine, for a bit at least) and she knew who I was most of the time.

She's now doubly incontinent, has to be fed (yup, sippy cup included) and seems to have no quality of life left. She doesn't appear to be looking at anything even when her eyes are open and her response to food and drink is automatic. She opens her mouth a bit when something touches her lips. She can do literally nothing for herself.

She would without question be horrified if she could see what has become of her life and I'm sure wouldn't want to continue like this. I know I wouldn't if it was me. But her heart keeps beating and we carry on, her breathing and me visiting, hoping and now saying out loud to friends and family that I wish she just closed her eyes and went to sleep forever. Most of the time I don't even feel guilty but sometimes I really do. As you say, reality hits. My mum is dying in front of me and I want her to hurry up. What kind of a hard hearted cow am I? But the routine of it takes over those moments and the guilt goes away again because wishing my mum would pass away is now my new normal.

I don't think what I've said will help you much. Just know you're not alone. Xxx

I think our reactions are normal: there is no virtue in prolonging dying, how could there be? My beloved husband died six months ago after three weeks of being in a coma, unable to move, eat or drink. I was grateful the doctor and nurses were kind, took away suffering with medication and did not attempt to prolong. They involved me in all the decisions even though I did not have power of attorney for health.
And the effect on us watching this is severe. I am nowhere near my usual self yet. You are most certainly not a hard hearted cow!
When I did my nursing cadetship in the late 1950s, it was in a geriatric/psychiatric unit where many of the patients had dementia (they thought it was delayed shell shock back then). When the suffering got too great, kindly doctors would administer medication.
Imagine how this would be received today!!

 

[Duggies-girl]

When the suffering got too great, kindly doctors would administer medication.
Imagine how this would be received today!!

Dads not that bad yet and I hope he doesn't get there but I can understand the kindly doctors.

Big hugs @kindred

 

[kindred]

Dads not that bad yet and I hope he doesn't get there but I can understand the kindly doctors.

Big hugs @kindred

Oh your lovely reply made me cry. Thank you so much. with love, Kindred.

 

[Scotsfloat]

I'm in the same place as you. When my mum went into care she was walking, talking (confabulating almost constantly but a stranger might've been fooled into thinking she was fine, for a bit at least) and she knew who I was most of the time.

She's now doubly incontinent, has to be fed (yup, sippy cup included) and seems to have no quality of life left. She doesn't appear to be looking at anything even when her eyes are open and her response to food and drink is automatic. She opens her mouth a bit when something touches her lips. She can do literally nothing for herself.

She would without question be horrified if she could see what has become of her life and I'm sure wouldn't want to continue like this. I know I wouldn't if it was me. But her heart keeps beating and we carry on, her breathing and me visiting, hoping and now saying out loud to friends and family that I wish she just closed her eyes and went to sleep forever. Most of the time I don't even feel guilty but sometimes I really do. As you say, reality hits. My mum is dying in front of me and I want her to hurry up. What kind of a hard hearted cow am I? But the routine of it takes over those moments and the guilt goes away again because wishing my mum would pass away is now my new normal.

I don't think what I've said will help you much. Just know you're not alone. Xxx

Goodness me you are so not a hard hearted cow and your reply really has helped me. I can identify with everything you are saying; we both know our mothers are dying and every day they carry on, they deteriorate a little bit more. They seem to have no quality of life and like your mother, mine would be horrified at her predicament. It's like being in a nightmarish limbo land and until my mother finally lets go, I won't be able to fully process all that has happened and I hate that she just 'exists'. Thank you for your honest reply, I really appreciate it xxx

 

[Scotsfloat]

You’re definitely not alone ❤️

Thank you xx

 

[Scotsfloat]

I can understand how you feel about the 'sudden realisation' of her decline, the whole dementia journey is so difficult and then you get sudden jolts like this.

My mother has been in a CH for two years and is like a 2 or 3 year old now, she's frail but mobile and can still eat and drink with prompting, but is incontinent. When she first arrived at the CH I noticed a few late-stage residents in the lounge, and I realised that if my mother lives long enough she will be back to effectively being a baby, immobile, verbalising only sounds rather than words, being fed. The residents are very well cared for and one late stager seems to be exactly the same as she was two years ago. I agree with you that I can see little point in a life like this, it's seems a cruel existence.

Thank you for your reply. Like you I noticed the late stage residents when my mum moved into the Home and if I'm honest I was horrified at how Alzheimer's had ravaged them. I'm not sure if I was protecting myself but somehow it didn't occur to me that my mum would ever be in the same position and yet it has crept up on me and now she is exactly like that. A few weeks ago it looked as if she might be coming to the end of her journey, but then she rallied and looks better than she has for a while. The difficulty for me and probably everyone else is that there isn't a natural progression with this terrible illness; I seem to be in a constant state of preparation for the worst, which then doesn't happen. It's exhausting and does make me feel like there will be a sense of relief when it is finally over for her and for me. xxx

 

[Scotsfloat]

It's my worst nightmare. Dad is still continent but sleeps 20 hours a day, can just about get himself to the bathroom with directions from me but his abilities are disappearing fast. He is unable to do anything much now other than watch a quiz on TV He still eats but very little and I have to remind him to drink. His home is a bit of a mystery to him and he is mostly unaware that I am there.

He has had a pacemaker for years and when it was recently checked the nurse said that he does not really need it because his heart is strong.

He also has a nasty cancer that seems stable but is likely to rear its ugly head at some time in the future.

I don't want him to get any worse but it is inevitable.

Thank you for your reply. It does make you wonder how the brain is affected so that a house you may have lived in for a very long time becomes a mystery. It is so very scary. LIke your dad, my mum also has a strong heart which I think has kept her going through the last few difficult years. It ends up feeling like such a waiting game; wanting them to go, but at the same time not wanting them to go. xxx

 

[Jale]

It is not selfish to wish there could be a quick peaceful ending for a loved one. Every day I wish my Mum could go to bed and not wake up, do I want her to die, no I don't, but I don't want to have to watch and see how her personality has changed for the worst. She would be horrified if she was aware of her behaviour, how she talks so nastily about people - that is not the Mum I know and love.
There have been occasions over the past couple of years that we thought the end was coming, but she has rallied and come through.
Mum's auntie had dementia, although I don't think it was called that years ago and Mum always said to us if ever she got like Auntie then put a pillow over her face.

This illness strips so much away from our loved ones and ourselves, and only people who are going through it or have been through it can understand why we have these thoughts

Take care x

 

[Splashing About]

Watching my mums decline has made me determined to complete an Advanced Directive. They fitted a pacemaker earlier this year. I’d like anyone who thinks that is the right thing, to sit with my mum 12 hours a day. Live her life and then believe it was the right thing to do.
This thread has been very supportive and empathetic for me

 

[Scotsfloat]

It is not selfish to wish there could be a quick peaceful ending for a loved one. Every day I wish my Mum could go to bed and not wake up, do I want her to die, no I don't, but I don't want to have to watch and see how her personality has changed for the worst. She would be horrified if she was aware of her behaviour, how she talks so nastily about people - that is not the Mum I know and love.
There have been occasions over the past couple of years that we thought the end was coming, but she has rallied and come through.
Mum's auntie had dementia, although I don't think it was called that years ago and Mum always said to us if ever she got like Auntie then put a pillow over her face.

This illness strips so much away from our loved ones and ourselves, and only people who are going through it or have been through it can understand why we have these thoughts

Take care x

Thank you for your reply. I don't wish my mum dead, but like you it's hard to be a spectator and watch someone deteriorate so horribly. For me, it's like there is just an old lady that looks a bit like my mum used to, but that is all; there is nothing else; no glimmer of the person she was, just the outer shell with a familiar (but more gaunt) face. My feelings are very mixed and I have reached the conclusion that ALL feelings need to accepted by ourselves in such complex circumstances. If we can't do that then it is easy to become consumed with guilt which is not helpful at all and I think we (and our pwd) are suffering enough already. xxx

 

[Scotsfloat]

Watching my mums decline has made me determined to complete an Advanced Directive. They fitted a pacemaker earlier this year. I’d like anyone who thinks that is the right thing, to sit with my mum 12 hours a day. Live her life and then believe it was the right thing to do.
This thread has been very supportive and empathetic for me

It think it is really helpful to just be honest about where we are at in our nightmare scenarios, although obviously I speak for myself as we all have to find our own way through it all. My mum has a DNR in place and I will make sure that is respected. I really feel for you regarding the pacemaker - the quality of life is so much more important than the quantity. Personally, I think it would be more humane to let people slip away when they are ready rather than artificially extend their life when there is no chance of recovery. What/who is it for? To me it's not extending life but just delaying death. I'm sorry if that sounds harsh and I know we all manage differently, but I'm having a difficult time at the moment with it all and I hope I haven't offended anyone. Sending love xxx

 

[Helly68]

I agree with much said here.
I was talking to another residents family yesterday and they said "they just go on, don't they?". No one meant any harm, but I think we all have moments where we just wish this was all over, rather than watching someone you love lose all the functions they ever had. I think it is human to want an end to suffering and I know I dread finding out that a resident in Mummy's unit has died, but on the other hand at least this awful disease has ended for them and their family.
I think it is important we can talk about these things, though they are very difficult. No one who hasn't been through this can understand.

 

[Lellyhelly]

I absolutely agree with all of you. Mum is in a nursing home, she has deteriorated a great deal these last few weeks. Doubly incontinent, unable to feed herself and sleeps most of the time. 2 weeks ago it seemed she was coming to the end, so my children and I went daily to help her to feed and drink. Amazingly after a few days she rallied. So now I am wondering if we did the right thing. It just seemed natural to look after her. Like all of you I ardently wish she could peacefully pass away in her sleep. We have a DNAR in place and she has continually expressed a wish to die. It is so cruel and it feels like grieving for someone who is just about still alive