Always expecting that call....

Suzy H

New member
Mar 12, 2021
5
0
How to cope when each day I'm expecting to get the call that Dad is at the end? Yet that call never comes. Dad has Alzheimer's and is in a care home. He has been in bed for months mostly sleeping and can do nothing for himself. He has good and bad days. On a bad day he will either be asleep or just stare at the ceiling. On a good day he will focus on the person present and speak a couple of words. He still knows his brother sometimes but that is all. On occasions the staff at the home have called to say that he isn't taking fluids/breathing has changed and I think the end is coming. Yet he then improves again apparently just taking enough fluids and a couple of teaspoons of porridge to keep going. It's so sad and unbearable to witness. I feel that he is trapped in a way that he would have hated and that also I am trapped. The situation with Dad has taken over my life for years. and I can't switch off. I love him and have always done my best for him (although he wasn't always easy) as he did for me but now I feel almost broken by it. It is all that I think about even when I am going through the motions of daily life. Each day I think, will it be today? My husband is so supportive but I don't really have anyone else to talk to. For the first time in my life I have started to have panic attacks. I have tried to find support but everywhere is overwhelmed. Please does anyone have any advice on how to manage in this situation? I was with my Mum to the end and want to be there for my Dad even though he may not know it. I know that it sounds selfish but the situation is destroying me.
 

canary

Registered User
Feb 25, 2014
24,701
0
South coast
On occasions the staff at the home have called to say that he isn't taking fluids/breathing has changed and I think the end is coming. Yet he then improves again apparently just taking enough fluids and a couple of teaspoons of porridge to keep going
Hello @Suzy H

Im sorry to say that with dementia this decline followed by a rally, followed by further decline...... is very, very common. Its something my mum did and also (to a lesser extent) my MIL.
It is a terrible emotional roller coaster, but there isnt much you can do about it, apart from just going with the flow. Try not to get too anxious about the thought of missing your dads final moments - its the time you were there during his life that is important, not the final few seconds
(((((((((((((((((((((hugs))))))))))))))))))
 

Jessbow

Registered User
Mar 1, 2013
5,623
0
Midlands
Its like an existance in Limbo.
we wish for the end, but dont relish the idea of the actual coming.
take each day as it comes,and try not to worry yourself too much, You were (and are) there in hs life in better days, Many prefer to toddle off into the sunset alone, sparing you that anguish.

I spent days at my fathers bedside, then missed 'the last moment' by 20 mins. Yes it upset me, but maybe he made that choice?
 

jay6

Registered User
Jun 25, 2023
952
0
Hi @Suzy H Must be really hard for you but I'm afraid there isn't really anything you can do. Try to hold on to those happy memories when he was your 'real' dad
 

Suzy H

New member
Mar 12, 2021
5
0
Thank you for the replies. It does help to know that there are others who have had similar experiences. I think that I am grieving for the Dad that I've lost as I am constantly on the edge of tears yet unlike after a bereavement, no-one knows or acknowledges the loss. I do really feel the lack of someone to talk it through with so may post on here when it becomes overwhelming. Will also try to take it one day at a time.
 

canary

Registered User
Feb 25, 2014
24,701
0
South coast
I think that I am grieving for the Dad that I've lost as I am constantly on the edge of tears yet unlike after a bereavement, no-one knows or acknowledges the loss.
We all understand it here - its called Anticipatory Grief
xxxx
 

AmIgullible?

Registered User
May 7, 2023
26
0
How to cope when each day I'm expecting to get the call that Dad is at the end? Yet that call never comes. Dad has Alzheimer's and is in a care home. He has been in bed for months mostly sleeping and can do nothing for himself. He has good and bad days. On a bad day he will either be asleep or just stare at the ceiling. On a good day he will focus on the person present and speak a couple of words. He still knows his brother sometimes but that is all. On occasions the staff at the home have called to say that he isn't taking fluids/breathing has changed and I think the end is coming. Yet he then improves again apparently just taking enough fluids and a couple of teaspoons of porridge to keep going. It's so sad and unbearable to witness. I feel that he is trapped in a way that he would have hated and that also I am trapped. The situation with Dad has taken over my life for years. and I can't switch off. I love him and have always done my best for him (although he wasn't always easy) as he did for me but now I feel almost broken by it. It is all that I think about even when I am going through the motions of daily life. Each day I think, will it be today? My husband is so supportive but I don't really have anyone else to talk to. For the first time in my life I have started to have panic attacks. I have tried to find support but everywhere is overwhelmed. Please does anyone have any advice on how to manage in this situation? I was with my Mum to the end and want to be there for my Dad even though he may not know it. I know that it sounds selfish but the situation is destroying me.
Oh Suzy. We could be twins. You are describing my mum to a T. Two spoonfuls of porridge, literally. She’s stopped eating the ice cream she craved. She’s lost a good 60lbs.

She won’t take meds. She has good and bad days but sleeps mostly. Yesterday she woke up and said “he’s not a bully”. No idea what that was about.

My husband and I like to have a glass of wine in front of the TV in the evening - a small pleasure after the stressful days we are having with mum. But now even that small pleasure will have to stop, as I’m waiting for “that” call and I never drive if I have had alcohol.

I, too, am broken. Mum, her finances, the endless forms, have taken over my life. I’m 70. I didn’t expect to spend my retirement this way. I’ve just sold her flat as we need the money. I asked my sister to do it - she’s an estate agent! - but she refused.

I comfort myself with one thing: on judgement day I will be able to stand tall and say “I did all I could”. I will never have any regrets - and mum’s dementia has taught me such a lot. Keep talking to the people on here - they are good souls and will help you feel less alone. God bless you xx
 

sdmhred

Registered User
Jan 26, 2022
1,933
0
Surrey
Thank you for the replies. It does help to know that there are others who have had similar experiences. I think that I am grieving for the Dad that I've lost as I am constantly on the edge of tears yet unlike after a bereavement, no-one knows or acknowledges the loss. I do really feel the lack of someone to talk it through with so may post on here when it becomes overwhelming. Will also try to take it one day at a time.
Is there no availability of counselling for you @Suzy H? It sounds like you need a safe space to offload???
 

gheckogirl7

Registered User
Dec 7, 2022
25
0
How to cope when each day I'm expecting to get the call that Dad is at the end? Yet that call never comes. Dad has Alzheimer's and is in a care home. He has been in bed for months mostly sleeping and can do nothing for himself. He has good and bad days. On a bad day he will either be asleep or just stare at the ceiling. On a good day he will focus on the person present and speak a couple of words. He still knows his brother sometimes but that is all. On occasions the staff at the home have called to say that he isn't taking fluids/breathing has changed and I think the end is coming. Yet he then improves again apparently just taking enough fluids and a couple of teaspoons of porridge to keep going. It's so sad and unbearable to witness. I feel that he is trapped in a way that he would have hated and that also I am trapped. The situation with Dad has taken over my life for years. and I can't switch off. I love him and have always done my best for him (although he wasn't always easy) as he did for me but now I feel almost broken by it. It is all that I think about even when I am going through the motions of daily life. Each day I think, will it be today? My husband is so supportive but I don't really have anyone else to talk to. For the first time in my life I have started to have panic attacks. I have tried to find support but everywhere is overwhelmed. Please does anyone have any advice on how to manage in this situation? I was with my Mum to the end and want to be there for my Dad even though he may not know it. I know that it sounds selfish but the situation is destroying me.
Hi Susie
I know exactly how you feel… your situation is almost a carbon copy of mine. You feel guilty, you can’t make any plans and if you do, you don’t enjoy your time out as you constantly revert back to your “situation” which is heartbreaking and frustrating in equal measures. You feel you could do more, despite having already gone above and beyond for your parent in more ways than you realise. Hang in there, try and find things to distract you and if you can even reach out to other people going through the same, you may find some solace in that. The forum is so comforting and definitely helps with all the emotions. Anticipatory grief is such a good way to describe this situation. Maybe there are books and articles you could read which might help understand better. I certainly look for these things, although I’m quite exhausted atm, so it’s minimal. Warm hugs and wishes to you Susie. X
 
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HartleyHugs

Registered User
Feb 27, 2022
112
0
I really shouldn't read these posts on the bus! I probably look a bit silly with tears running down my face 😭
My mum is very much the same, I have to be thankful that we have only had to deal with the really tricky times for 3 years since mum fell and broke her hip in 2020 it went very quickly downhill from then.
Mum is really unwell at the moment, we're on our third end of life conversation with the care home, I naively thought you only had that conversation once but Alzheimer's seems to just keep throwing you a curve ball!
I have a 12 year old son and trying to explain to him is so difficult, he loves his nana and I'm so grateful she moved closer to me 7 years ago that he got to make wonderful memories with her. At the moment I struggle to remember those memories as my mind is consumed with the waiting for the call. I had no idea dementia was so cruel and I think it needs to be a wider conversation in society along with a discussion of death. That way others hopefully don't have to suffer as we have. I've said it before but I am so grateful for this forum, to be able to write things that in a normal conversation get you funny looks and to know that others are there to support us, thank you
 

luggy

Registered User
Jan 25, 2023
178
0
I really shouldn't read these posts on the bus! I probably look a bit silly with tears running down my face 😭
My mum is very much the same, I have to be thankful that we have only had to deal with the really tricky times for 3 years since mum fell and broke her hip in 2020 it went very quickly downhill from then.
Mum is really unwell at the moment, we're on our third end of life conversation with the care home, I naively thought you only had that conversation once but Alzheimer's seems to just keep throwing you a curve ball!
I have a 12 year old son and trying to explain to him is so difficult, he loves his nana and I'm so grateful she moved closer to me 7 years ago that he got to make wonderful memories with her. At the moment I struggle to remember those memories as my mind is consumed with the waiting for the call. I had no idea dementia was so cruel and I think it needs to be a wider conversation in society along with a discussion of death. That way others hopefully don't have to suffer as we have. I've said it before but I am so grateful for this forum, to be able to write things that in a normal conversation get you funny looks and to know that others are there to support us, thank you
@HartleyHugs gosh, my mum broke her hip in 2020 and everything went downhill thereafter. I'm also on the 3rd EOL conversation with the care home and the curved balls keep coming. Mum was Fast Tracked for CHC a while ago, but she's coming up for her 3 month review and is still hanging in there. Meanwhile, the care home is closing down and we've been given notice to move her - talk about stress!!

I'm sorry that you are going through this. Take care xx
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
@HartleyHugs gosh, my mum broke her hip in 2020 and everything went downhill thereafter. I'm also on the 3rd EOL conversation with the care home and the curved balls keep coming. Mum was Fast Tracked for CHC a while ago, but she's coming up for her 3 month review and is still hanging in there. Meanwhile, the care home is closing down and we've been given notice to move her - talk about stress!!

I'm sorry that you are going through this. Take care xx
Oh my word I can't even begin to imagine the stress of my mum's care home closing! Mum is also due her 3 month CHC review but my friend has been due hers for the last 6 months so I don't hold out much that we'll see that any time soon.
Do you think that your mum's fall hastened things along? I truly think that if that hadn't happened we wouldn't be anywhere near where we are now, she may even still be at home obviously with support but the broken hip and lack of support in hospital I feel really made this all worse. I was so angry at first but now I just feel sad that this is where we are.
I will keep everything crossed 🤞🏻 that the care home move goes well
 

luggy

Registered User
Jan 25, 2023
178
0
Oh my word I can't even begin to imagine the stress of my mum's care home closing! Mum is also due her 3 month CHC review but my friend has been due hers for the last 6 months so I don't hold out much that we'll see that any time soon.
Do you think that your mum's fall hastened things along? I truly think that if that hadn't happened we wouldn't be anywhere near where we are now, she may even still be at home obviously with support but the broken hip and lack of support in hospital I feel really made this all worse. I was so angry at first but now I just feel sad that this is where we are.
I will keep everything crossed 🤞🏻 that the care home move goes well
Thank you @HartleyHugs Mum fell and broke her hip on the very first day she became a resident in a care home. Prior to that, she was still mobile and not previously had a fall. She was placed into a care home because my dad could no longer cope with her challenging behaviour.

When she broke her hip, she spent 5 weeks in hospital and during that time she declined significantly. She was unable to comply with physio and OT so she has been bedridden ever since. She was discharged from hospital to a nursing home. A few months ago, the home de-registered from its nursing home status and now it is completely closing. Sadly, my experience of both care homes has been very poor.
 

luggy

Registered User
Jan 25, 2023
178
0
@luggy, what a horrible situation. How much notice have you been given, and I hope the home are helping you find somewhere else for your mum.
{{{hugs}}}
@HartleyHugs thinking of you.
Thank you @Sarasa We've got until 31.1.24 to move mum, which is plenty of notice. Mum is currently funded by the NHS, so it's their responsibility to re-locate mum, which they are trying to do. Unfortunately, nursing homes are thin on the ground in my area. Those that have been approached so far have refused to take mum because of her agitation and challenging behaviour, so it looks like we will need plenty of time to find somewhere.
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
Thank you @HartleyHugs Mum fell and broke her hip on the very first day she became a resident in a care home. Prior to that, she was still mobile and not previously had a fall. She was placed into a care home because my dad could no longer cope with her challenging behaviour.

When she broke her hip, she spent 5 weeks in hospital and during that time she declined significantly. She was unable to comply with physio and OT so she has been bedridden ever since. She was discharged from hospital to a nursing home. A few months ago, the home de-registered from its nursing home status and now it is completely closing. Sadly, my experience of both care homes has been very poor.
Mum was living independently at home when she fell, I went round every morning with her paper and to help her with her breakfast and knew something was wrong when the lights weren't on. She had tripped possibly on the Christmas tree going to bed and had been on the floor all night! She spent nearly 3 months in hospital but not on a suitable ward she was on the general surgery ward all that time and COVID didn't help with physio. On discharge she came home we thought we could try but it quickly became apparent we needed more support but less than a week later she fell again and spent another 6 weeks in hospital on the geriatric ward which was so badly staffed you could go hours without seeing someone! Thankfully on her discharge to assess she was put into one of our favourite care homes and has been here ever since.
I do hope you can find a suitable and caring care home for your mum.
 

luggy

Registered User
Jan 25, 2023
178
0
Mum was living independently at home when she fell, I went round every morning with her paper and to help her with her breakfast and knew something was wrong when the lights weren't on. She had tripped possibly on the Christmas tree going to bed and had been on the floor all night! She spent nearly 3 months in hospital but not on a suitable ward she was on the general surgery ward all that time and COVID didn't help with physio. On discharge she came home we thought we could try but it quickly became apparent we needed more support but less than a week later she fell again and spent another 6 weeks in hospital on the geriatric ward which was so badly staffed you could go hours without seeing someone! Thankfully on her discharge to assess she was put into one of our favourite care homes and has been here ever since.
I do hope you can find a suitable and caring care home for your mum.
Thank you @HartleyHugs

Sadly, falls are often triggers which lead to a rapid decline in the elderly - especially so in those with dementia who are unable to co-operate with any kind of rehabilitation. I'm sorry to hear that your mum had a bad time of it in hospital. It sounds as if she is now somewhere safe and caring xx
 

gheckogirl7

Registered User
Dec 7, 2022
25
0
I really shouldn't read these posts on the bus! I probably look a bit silly with tears running down my face 😭
My mum is very much the same, I have to be thankful that we have only had to deal with the really tricky times for 3 years since mum fell and broke her hip in 2020 it went very quickly downhill from then.
Mum is really unwell at the moment, we're on our third end of life conversation with the care home, I naively thought you only had that conversation once but Alzheimer's seems to just keep throwing you a curve ball!
I have a 12 year old son and trying to explain to him is so difficult, he loves his nana and I'm so grateful she moved closer to me 7 years ago that he got to make wonderful memories with her. At the moment I struggle to remember those memories as my mind is consumed with the waiting for the call. I had no idea dementia was so cruel and I think it needs to be a wider conversation in society along with a discussion of death. That way others hopefully don't have to suffer as we have. I've said it before but I am so grateful for this forum, to be able to write things that in a normal conversation get you funny looks and to know that others are there to support us, thank you
@HartleyHugs when you say you struggle to remember the wonderful memories, I can relate to that too… and especially when you refer to “your mind consumed with waiting for the call” I know exactly how this feels. Even this morning, I had a feeling that things were not great, having visited Mum every day over the past month, but she is much the same as yesterday, hanging on and living on nothing. She is agitated, asleep or staring into space when “awake”, doubly incontinent, being spoon fed and would just be horrified at the state she is now in. I feel it is an unnecessary nightmare and I agree that dementia and the dreadful end of life scenarios that so many patients and families face, must be considered carefully with a wider discussion to support those who suffer. Does anyone have any words of wisdom about how long this may continue? I feel at my wits end. 😔
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
The GP is coming to see mum today, and I said the same thing last night, as what can they say it's not like they can say oh she will go in X number of days! The nurse on her unit said that if she is seen by a GP and dies within 2 weeks then she won't need a coroner enquiry.
I agree that if my mum could see herself now she would end it all straight away.
One beautiful moment though I was speaking the other day about my son learning to skim stones last week and how her dad who was a brilliant stone skimmer would have been proud and she smiled which I will hold onto forever ❤️