Always expecting that call....

[Izzy]

What a lovely memory for you to have @HartleyHugs.

 

[gheckogirl7]

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 ❤️

@HartleyHugs that is so lovely that you made a connection with your Mum and she responded to the story about the stone skiffing. I am hoping to take in some recorded tunes played on the piano by myself that I know Mum will hear, even if she doesn’t respond. She used to play herself and had a few favourites, so I am hopeful 🙏🏼

 

[HartleyHugs]

We all understand it here - its called Anticipatory Grief
xxxx

Hi @canary thank you for this, I looked it up as I had never heard this expression and it sums up how I feel at the moment so well. The way you go everywhere with your phone just expecting that call, feeling as though you can't plan anything (very hard with a 12 year old son), I sometimes feel as though people think I don't care because I might say oh here we are again 4th eol conversation but it's the only way I can cope now. It's good to know there's actually a reason for it all. What's even harder is I've been suffering it with my dad too for even longer and didn't realise, he had a massive stroke 5 years ago and is homebound and in and out of hospital, I understand now why I'm constantly tired!

 

[Happygo]

Hi I have a similar situation with my 92 year old mum. She has gone from sleeping approx 18 hours a day and hardly eating, drinking or speaking. Then only for 1 day she had delirium followed by wanting to chat and eat. This was very hard to witness and is now back to sleeping and not talking. Mum has lost 2 stone in approx 6 months and GP has reduced all meds and said she probably won’t see Christmas . My mum only recognises me now and we all dread that call. Not sure how long this can go on for I miss my mum and feel for you all

 

[SeaSwallow]

Hi I have a similar situation with my 92 year old mum. She has gone from sleeping approx 18 hours a day and hardly eating, drinking or speaking. Then only for 1 day she had delirium followed by wanting to chat and eat. This was very hard to witness and is now back to sleeping and not talking. Mum has lost 2 stone in approx 6 months and GP has reduced all meds and said she probably won’t see Christmas . My mum only recognises me now and we all dread that call. Not sure how long this can go on for I miss my mum and feel for you all

I am so sorry to read this @Happygo It is always such a difficult thing to witness our loved ones going through. Please keep posting, and letting us know how you are doing.

 

[TessB]

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.

I am so grateful to read other people's experiences. My mum had delirium last October and I had a Friday night and weekend with mum constantly trying to leave the house, go down the road and knock on people's doors, telling them something horrible was happening. I phoned the crisis line and put mum on the phone, hoping they could calm her down but it didn't help and mum asked them to call the police. Five different health professionals suggested mum had a UTI but she didn't. I was still working at the time and just couldn't cope. The GP arranged for mum to be admitted to hospital. Mum had always been a busy person but had nothing to do in hospital (couldn't seem to occupy herself with doing anything apart from walking around and sometimes talking to other patients). I visited every day but she couldn't seem to hold a normal conversation, probably expected too much but I didn't know that then. After a fortnight mum was discharged to a care home for assessment. I was relieved, thought mum would have lots to do and people to talk to. After talking with five different members of staff over two weeks, I found out that mum couldn't join in any activities because she would need a member of staff to accompany her and they couldn't spare the staff. So once again mum had nothing to do. My blood still boils when I think of it. Even animals in a zoo are treated better than that. After nearly 4 weeks, mum fell and broke her hip and ended up in hospital for three weeks until she was discharged home just before Christmas. The hospital wanted mum to go into a care home for assessment but I was worried she'd end up in a place where she had nothing to do, again. I do feel mum has declined significantly in the last six months. She seemed to be picking up after coming home but COVID in May and several falls later, mum is mostly just sitting in a chair all day, though she has been going to the day centre every week and seems to enjoy it. Sorry for the long and detailed post but I am one of those people who beat themselves up and feel guilty about everything and that's such an easy thing to do on this journey. My thoughts go like this - If mum hadn't been in the care home, or if she had had something to do so wasn't up at 11pm, she might not have broken her hip, so would be more mobile, more willing to go out and have a better quality of life. I obviously can't know that things would have been different or better, indeed it's possible they could have been worse, but, as I've previously said, I beat myself up. As my cousin said, I am trying to do my best without knowing what the best is.

 

[luggy]

I am so grateful to read other people's experiences. My mum had delirium last October and I had a Friday night and weekend with mum constantly trying to leave the house, go down the road and knock on people's doors, telling them something horrible was happening. I phoned the crisis line and put mum on the phone, hoping they could calm her down but it didn't help and mum asked them to call the police. Five different health professionals suggested mum had a UTI but she didn't. I was still working at the time and just couldn't cope. The GP arranged for mum to be admitted to hospital. Mum had always been a busy person but had nothing to do in hospital (couldn't seem to occupy herself with doing anything apart from walking around and sometimes talking to other patients). I visited every day but she couldn't seem to hold a normal conversation, probably expected too much but I didn't know that then. After a fortnight mum was discharged to a care home for assessment. I was relieved, thought mum would have lots to do and people to talk to. After talking with five different members of staff over two weeks, I found out that mum couldn't join in any activities because she would need a member of staff to accompany her and they couldn't spare the staff. So once again mum had nothing to do. My blood still boils when I think of it. Even animals in a zoo are treated better than that. After nearly 4 weeks, mum fell and broke her hip and ended up in hospital for three weeks until she was discharged home just before Christmas. The hospital wanted mum to go into a care home for assessment but I was worried she'd end up in a place where she had nothing to do, again. I do feel mum has declined significantly in the last six months. She seemed to be picking up after coming home but COVID in May and several falls later, mum is mostly just sitting in a chair all day, though she has been going to the day centre every week and seems to enjoy it. Sorry for the long and detailed post but I am one of those people who beat themselves up and feel guilty about everything and that's such an easy thing to do on this journey. My thoughts go like this - If mum hadn't been in the care home, or if she had had something to do so wasn't up at 11pm, she might not have broken her hip, so would be more mobile, more willing to go out and have a better quality of life. I obviously can't know that things would have been different or better, indeed it's possible they could have been worse, but, as I've previously said, I beat myself up. As my cousin said, I am trying to do my best without knowing what the best is.

@TessB I'm sorry that you are going through this, but you're not alone with this dementia journey. Unfortunately, dementia relentlessly takes it's own path no matter how hard we try to guide things in the direction we would prefer. However hard we try, the curved balls will keep coming. Try not to beat yourself up (I know it's not easy, and I do it all the time) and look after your own health and mental well-being.

((((((hugs)))))))

 

[TessB]

@TessB I'm sorry that you are going through this, but you're not alone with this dementia journey. Unfortunately, dementia relentlessly takes it's own path no matter how hard we try to guide things in the direction we would prefer. However hard we try, the curved balls will keep coming. Try not to beat yourself up (I know it's not easy, and I do it all the time) and look after your own health and mental well-being.

((((((hugs)))))))

Thanks, luggy.

 

[Anon33]

I am coping by journaling.
it helps me process whatever is happening at the time. whether its a practical need or a build up of my emotions.

I was finding alcohol caused more anxiety than relief so I cut that back and found it has helped me.

I wrote a poem yesterday.

Your ghosts are already here
before death arrives
They haunt the walls and
whisper through the trees
of the garden
of my mind
Without the joy of happiness
Without the sorrow of loss
The ability to be all and nothing
Whilst life continues on.

 

[AmIgullible?]

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

I told my family that mum was on EOL care. Then she got better. So now I’m the one who cries “wolf”.

 

[LesMis]

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.

Hello @Suzy H
I am so sorry that you are going though this agony. I have just gone through a very similar situation with my beloved Dad, who has just passed away a week ago with advanced Alzheimer's. My Mum is still in the same home with vascular dementia. Like you I feel like I have been grieving for years as little by little they deteriorated. Many times I felt I was saying goodbye to Dad, and then he would rally again. When I started to read about anticipatory grief it rang so true to how I was feeling. The feelings of sadness and anxiety are unbearable for years on end. When you mentioned feeling panic - I also had a random panic attack I had when I ended up in A and E. I had never had anything like that before and couldn't believe that it wasn't cardiac, but extreme stress/panic. At the time I took a lot of persuasion from the professionals that stress was the cause, (and also the menopause.) I'm so glad you can talk to your supportive partner, but I would also consider counselling. It can't change the situation but it does change your thoughts and feelings and help acknowledge that what you are dealing with is indeed grief - protracted over months and months.
My lovely Dad passed last Saturday having been on end of life care for a week. It is heartbreaking and my Mum needs so much support now but I do have a sense of relief for him too- for the first time in many years. I wish you so much strength and hope you can find a counsellor to help you find some peace of mind. Does the care home have access to an Admiral nurse or can they sign post you to any support? You may have already tried this and your GP. Try carers networks through your GP You have done a brave thing by reaching out and acknowledging you are needing support now. Some employers have counselling available through employee assistance. Would some private sessions be possible? ( I know you shouldn't have to resort to that)
It most definitely does not sound selfish! Quite the opposite. You have given all your love and care and are doing everything you possibly can xx Be kind to yourself too.

 

[rachel1973]

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

My mum had a fall in may this year and we are now on palliative care and she may only have weeks to go. She is refusing all fluids and stopped eating a few weeks ago.

Although we all have slightly different stories we are all facing the same emotional struggles with just wanting the best for our loved ones.

I'm glad I found this forum as no-one truly understands unless they have been in the same position.

Big hugs to everyone - you are not alone

 

[cazzerb]

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.