Dad says he wants to die

[MollieB]

Hi everyone

I have been following the Forum for a couple of years but have never posted until now. Your comments and advice would be so helpful.

My Dad (74) was diagnosed with Alzheimer's about 3 years ago but was showing clear signs for a couple of years before that. My brother and I care for him in his own home (my brother lives with him - he has mental health issues and never moved out and I live 5 mins walk away). Carers come in each morning for Dad, to help bathe and dress. Once a week we get respite care in so my brother can go out for 4 hours. I spend around 8 hours a week with Dad and handle all household matters/legal/health/finance etc

Dad had pneumonia earlier this year and this sparked a sudden decline into incontinence, an increase in anxiety and him not being able to be left alone. He recovered well from the illness (he is physically strong) and we got into a routine with care coming into the home for the first time.

Recently, Dad has started getting very down, now usually about twice a week, saying he wants to "die" or "disappear" ...and then he takes to his bed. Sometimes this is accompanied by shouting but not violence. Often it is connected to an incident that may highlight his decline (problems with his pullup pants, or following the visit of a carer). Yesterday he said he was a "nuisance" and "wanted to go". This usually happens in the late afternoon.

Dad has always been a positive person, seeking the good in life and coping so well, despite everything he has had to deal with. We have always been very close and could always find something to laugh about. Now this is a struggle, he is very low and to be honest I completely understand why he feels the way he does. But I want him to feel contented and I don't know how.

As I say, my brother shares caring for Dad with me (around my job + kids) and the help we have in each day. They are both becoming increasingly anxious and down. I am very worried for both of them and am not sure what to do for the best.

We love Dad so much and want him to stay in his own home as long as possible (this is where he feels safest at the moment) and we want him to be happy.

Can anyone please share any experience they have of this behaviour/being very down/wanting to die - and any tips on how to handle it please? I have raised it with Dad's Dementia Nurse but no help forthcoming.

Thank you in advance for your help

 

[chick1962]

Hello MollieB , I would make an appointment with Mental Health or your GP to check there is not an underlying medical problem like a Uti . If it's in the afternoon it could be a bit of sundowning, where confusion sets in. My Oh sundowns from 4 o clock onwards and gets confused and frustrated. It could also be a bit of depression which is a symptom in Alzheimers and well worth checking it with GP. My husband is so aware of his difficulties and can get grumpy as he knows he is struggling and it could be the same for your dad. Sorry I can't be of more help but I am sure someone else will be along . Hugs to you xx


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[pony-mad]

Good morning Mollie B,
My OH is at a similar stage to your Dad and I can very much relate to the problems you describe. Like you I can cope with most of the difficulties but when they are so unhappy they talk of ending it all, it is hard to cope. As you say, it is often around situations where there is a realisation that they have lost yet another ability and that they are becoming a burden. Deep down he probably realises the effect he is having on the lives of you and your brother. Is there any daycare he could access? And don't see a care home as a failure. It may be that company and being free from the fear of being a burden would improve his quality of life.
I hope you find a solution.
Best wishes


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[patsy56]

hi and welcome to TP Mollie, mater also is going through the just want to die mode. It is so hard.

My OH is 76 and has Parkinson's and recently started to get dementia symptoms.

Just hang in here you will get so much help and advice, but you know that since you have been "lurking" . huggs

 

[lesley1958]

Hi and welcome

My dad is 91 having been diagnosed when he was 87 - rapid decline since Xmas this year. I can't offer any advice, only heartfelt sympathy and understamding of how you feel. This morning, after a very confused and distressed night dad told my mum he wanted to die - that's a first. He hasn;t said it before. I so much want to do something but what is there that we can do? I have asked his doctor and the dementia nurse assigned to his case about calming medication in the past to help his sundowning but they are very reluctant to presribe as they say there will be nowhere to go with medication when he gets much worse. My mum who is 84 is his main carer ans she is fantastic but I can see this disease wearing her out and killing her first.

Sorry, none of that was very useful was it? But just to say you are not alone ; thinking of you and of all the brave people on this list.

 

[BR_ANA]

Hi Mollie.

If your brother is feeling down, maybe it means he need more help or respite.

Your father is expressing negative feelings on sundown time,

(my mother had antidepressives prescripted to her - I notice no change on her)

 

[Crispycritter]

Hi everyone

I have been following the Forum for a couple of years but have never posted until now. Your comments and advice would be so helpful.

My Dad (74) was diagnosed with Alzheimer's about 3 years ago but was showing clear signs for a couple of years before that. My brother and I care for him in his own home (my brother lives with him - he has mental health issues and never moved out and I live 5 mins walk away). Carers come in each morning for Dad, to help bathe and dress. Once a week we get respite care in so my brother can go out for 4 hours. I spend around 8 hours a week with Dad and handle all household matters/legal/health/finance etc

Dad had pneumonia earlier this year and this sparked a sudden decline into incontinence, an increase in anxiety and him not being able to be left alone. He recovered well from the illness (he is physically strong) and we got into a routine with care coming into the home for the first time.

Recently, Dad has started getting very down, now usually about twice a week, saying he wants to "die" or "disappear" ...and then he takes to his bed. Sometimes this is accompanied by shouting but not violence. Often it is connected to an incident that may highlight his decline (problems with his pullup pants, or following the visit of a carer). Yesterday he said he was a "nuisance" and "wanted to go". This usually happens in the late afternoon.

Dad has always been a positive person, seeking the good in life and coping so well, despite everything he has had to deal with. We have always been very close and could always find something to laugh about. Now this is a struggle, he is very low and to be honest I completely understand why he feels the way he does. But I want him to feel contented and I don't know how.

As I say, my brother shares caring for Dad with me (around my job + kids) and the help we have in each day. They are both becoming increasingly anxious and down. I am very worried for both of them and am not sure what to do for the best.

We love Dad so much and want him to stay in his own home as long as possible (this is where he feels safest at the moment) and we want him to be happy.

Can anyone please share any experience they have of this behaviour/being very down/wanting to die - and any tips on how to handle it please? I have raised it with Dad's Dementia Nurse but no help forthcoming.

Thank you in advance for your help

Hi. I'm Crispycritter, My mom often says the same thing. "I just want to die. No one cares about me!" I've found that taking my mom back to a time when I was younger I change what she's thinking about and she usually doesn't remember what she was talking about. This usually helps, it was a happier time in her life and most of what she remembers is positive. how is your fathers memory?

 

[Lancashirelady]

Hi everyone

I have been following the Forum for a couple of years but have never posted until now. Your comments and advice would be so helpful.

My Dad (74) was diagnosed with Alzheimer's about 3 years ago but was showing clear signs for a couple of years before that. My brother and I care for him in his own home (my brother lives with him - he has mental health issues and never moved out and I live 5 mins walk away). Carers come in each morning for Dad, to help bathe and dress. Once a week we get respite care in so my brother can go out for 4 hours. I spend around 8 hours a week with Dad and handle all household matters/legal/health/finance etc

Dad had pneumonia earlier this year and this sparked a sudden decline into incontinence, an increase in anxiety and him not being able to be left alone. He recovered well from the illness (he is physically strong) and we got into a routine with care coming into the home for the first time.

Recently, Dad has started getting very down, now usually about twice a week, saying he wants to "die" or "disappear" ...and then he takes to his bed. Sometimes this is accompanied by shouting but not violence. Often it is connected to an incident that may highlight his decline (problems with his pullup pants, or following the visit of a carer). Yesterday he said he was a "nuisance" and "wanted to go". This usually happens in the late afternoon.

Dad has always been a positive person, seeking the good in life and coping so well, despite everything he has had to deal with. We have always been very close and could always find something to laugh about. Now this is a struggle, he is very low and to be honest I completely understand why he feels the way he does. But I want him to feel contented and I don't know how.

As I say, my brother shares caring for Dad with me (around my job + kids) and the help we have in each day. They are both becoming increasingly anxious and down. I am very worried for both of them and am not sure what to do for the best.

We love Dad so much and want him to stay in his own home as long as possible (this is where he feels safest at the moment) and we want him to be happy.

Can anyone please share any experience they have of this behaviour/being very down/wanting to die - and any tips on how to handle it please? I have raised it with Dad's Dementia Nurse but no help forthcoming.

Thank you in advance for your help

Horrible as it sounds, I think it's quite natural for your dad to say he wants to die. My Mum is the same and I can understand her distress. She was a very intelligent person with an excellent memory who did cryptic crosswords every day. Now she can't remember what she did 10 minutes ago and although we have the odd flash of intellect when doing a basic puzzle she is pretty lost. It must be absolutely terrifying to be in that position, especially if accompanied by lots of physical decline. Modern medicine doesn;t recognise that people might have just had enough and don't want to go on as shells of their former selves, though we all want to hang on to our loved ones as long as possible. On the other hand, medication from the GP for depression might help.
Hugs x

 

[fizzie]

I agree with other posters. We went through this and it was another 'phase' which didn't last too long but it does sound as though your Pa has perception as it is often related to incidents which reflect his decline.

Sometimes for us distraction worked and sometimes we just followed through with the conversation. Sometimes we all need to talk about something which is deeply upsetting and worrying and maybe he wants the chance to express his feelings about life and death. These are hard conversations but we followed where she led and sometimes it worked and sometimes not....that's dementia!! If not, going back to earlier memories is a useful backstop and enjoyable for everyone, tends to relieve the stress.

Have you had a carers assessment...and has your brother? You may be entitled to more respite and it might be worth following up. Do you have any dementia clubs in your area where possibly your Pa could have lunch one day a week to give him some different company and to give you guys a break?

One last point - if you are not getting attendance allowance you should apply - it isn't means tested and now your Pa needs someone there all the time you should have the higher rate and perhaps your brother (and or you) is/are entitled to carer's allowance. If you want to follow this up then send me a message I can probably signpost you.

Take care
Christine x

 

[MollieB]

MollieB

I am so sorry it has taken me months to login and reply to all your caring and helpful posts. Your words are hugely helpful and wow I didn't appreciate how good it would feel to see all these responses. You are all making such valid points. Dad does have perception and has every right to say he wants to die at times. We have learned to allow him to get those feelings out and we don't panic, sometimes I just hold him and say I understand, other times we distract. If I am at work when it happens my brother will call me and if dad can connect via the phone I listen and talk but this is becoming more challenging for dad (using phone). Dad has just had a spell in hospital with delirium connected they think to infection though no source found. Even then he clearly had perception at points - luckily nurses let me stay in by his bedside for 3 days and nights until he came home. So in conclusion he still says he wants to go but we respond with less panic. It was our response that needed to be re calibrated and once we did that we could all cope a little better. Just another stage to deal with a grow another layer of thick skin I guess! Meanwhile I have arranged more respite for my brother and am now working on trying to reduce my own stress levels which with full time job and 2 young kids have got way too high now due to everything. Onwards and upwards...but thankyou all for your kind, measured and very useful comments I really appreciate them. Xx

 

[Rageddy Anne]

My husband was saying those things quite often a few weeks ago, but less frequently now. I think his insight is deteriorating, which is perhaps a blessing.