I don't understand.

[AuroraSkye]

In 2016 I lost my Husband to Heart Failure. I couldn't get out of bed, my whole environment changed shape, I lost all sense of normality. However, two days ago I lost my Mum in traumatic circumstances. She had Alzheimer's. But I'm acting and feeling as if nothing has happened. I was with her 24/7 as a carer. Maybe my mind is playing tricks on me as it only feels like a "temporary" break, maybe I just think she is having a hospital stay. Maybe it's simply the calm before a raging storm, I don't know but to be feeling this way is very worrying and I wondered if it's been experienced by anyone else?
Thankyou.

 

[CAL Y]

Hello @AuroraSkye . I fully understand your feelings. I am going through exactly the same thing right now.
My husband had dementia but was diagnosed with cancer at the end of September And died at the beginning of last month.
After the trauma of losing him gradually for a number of years and the exhaustion of caring for him it seemed like such a relief and a happy release for him that I too was beginning to wonder why I was feeling so calm. Surely after 30 happy years together I should be devastated.
I think that you might be having the same reaction as I had and “enjoying “ your new found freedom.
It is now six weeks later and the grief and loneliness is setting in and I’m sure that is what will happen for you as well.
Its almost as if something in your brain protects you from the worst of it until all the arrangements, paperwork etc is finished.
Be kind to yourself and rest as much as you are able.
Wishing you well.
Carole.

 

[Bunpoots]

Hi @AuroraSkye welcome to Dementia Talking Point.

My condolences on your losses.

I found that when my mum died, after having severe Alzheimer’s I wasn’t hit by grief in the same way as losing a loved one who was still themselves. Perhaps the gradual slipping away helps prepare us for the eventual end.

It took a long while before the loss of my mum hit me and, even then, it didn’t hit as hard as a normal bereavement.

 

[AuroraSkye]

Hello @AuroraSkye . I fully understand your feelings. I am going through exactly the same thing right now.
My husband had dementia but was diagnosed with cancer at the end of September And died at the beginning of last month.
After the trauma of losing him gradually for a number of years and the exhaustion of caring for him it seemed like such a relief and a happy release for him that I too was beginning to wonder why I was feeling so calm. Surely after 30 happy years together I should be devastated.
I think that you might be having the same reaction as I had and “enjoying “ your new found freedom.
It is now six weeks later and the grief and loneliness is setting in and I’m sure that is what will happen for you as well.
Its almost as if something in your brain protects you from the worst of it until all the arrangements, paperwork etc is finished.
Be kind to yourself and rest as much as you are able.
Wishing you well.
Carole.

Hello Cal and I'm sorry about your loss. Very early days for you too. I appreciate your comments and understand what you mean. Thanks for replying and take good care.

 

[AuroraSkye]

Hi @AuroraSkye welcome to Dementia Talking Point.

My condolences on your losses.

I found that when my mum died, after having severe Alzheimer’s I wasn’t hit by grief in the same way as losing a loved one who was still themselves. Perhaps the gradual slipping away helps prepare us for the eventual end.

It took a long while before the loss of my mum hit me and, even then, it didn’t hit as hard as a normal bereavement.

Thankyou Bunpoots for replying. It seems Alzheimer's shows no mercy and keeps on taking from all involved. I appreciate your comments. Look after yourself and I'm sorry you are traveling this path too.

 

[Jaded'n'faded]

I think with dementia, you begin to say goodbye and start your grieving a long time before the person dies. When they do, there is also the feeling that they are released from suffering at the hands of this awful disease, so sometimes the feeling of loss is accompanied by one of relief.

Everyone feels grief in their own way - there is no right and wrong. My mum died 2 years ago and I definitely remember waking a few days later and feeling I should be off to see her at the care home. It was hard to believe that the situation that I'd been used to for 3 years had changed.

 

[karenbow]

hi aurora, lost my dad in may and my mum 7 weeks ago to alzheimers,dad passed away at home but when dad died mums alzheimers really took off and mum had to go in a nursing home which broke my heart- i just feel terrible sadness - i speak to them and i look at photographs but ive also started walking to the nursing home - its only a mile away just to look up at the window of mums room- its as if im trying to feel something ,trying to re live my journey walking there everyday to see mum- some days it just feels like nothing has happened and i cant understand why i can be so normal- i really dont know how i should be feeling and worry like yourself that theres a raging storm coming- i cant seem to think too deeply about mum and dad and we were so close and a loving family its like im on autopilot and everything i do is just because its what i would normally do and nothing really seems to matter anymore- we,ve just got to go with our feelings, no other choice, best wishes to allx

 

[AuroraSkye]

I think with dementia, you begin to say goodbye and start your grieving a long time before the person dies. When they do, there is also the feeling that they are released from suffering at the hands of this awful disease, so sometimes the feeling of loss is accompanied by one of relief. Everyone feels grief in their own way - there is no right and wrong. My mum died 2 years ago and I definitely remember waking a few days later and feeling I should be off to see her at the care home. It was hard to believe that the situation that I'd been used to for 3 years had changed.

Thanko

I think with dementia, you begin to say goodbye and start your grieving a long time before the person dies. When they do, there is also the feeling that they are released from suffering at the hands of this awful disease, so sometimes the feeling of loss is accompanied by one of relief.

Everyone feels grief in their own way - there is no right and wrong. My mum died 2 years ago and I definitely remember waking a few days later and feeling I should be off to see her at the care home. It was hard to believe that the situation that I'd been used to for 3 years had changed.

Thankyou so much for your reply. I appreciate what you have said. One of the biggest things I'm dealing with is guilt and regret. Guilt because I was too fearful to read up on her condition through sheer fear. And regret for not putting my own fears aside for the benefit of my Mum. I'm sorry that sounds really selfish I know. Just really struggling with feelings, as I'm sure many are. I am thankful for the reply and wish you well. Thanks again

 

[AuroraSkye]

hi aurora, lost my dad in may and my mum 7 weeks ago to alzheimers,dad passed away at home but when dad died mums alzheimers really took off and mum had to go in a nursing home which broke my heart- i just feel terrible sadness - i speak to them and i look at photographs but ive also started walking to the nursing home - its only a mile away just to look up at the window of mums room- its as if im trying to feel something ,trying to re live my journey walking there everyday to see mum- some days it just feels like nothing has happened and i cant understand why i can be so normal- i really dont know how i should be feeling and worry like yourself that theres a raging storm coming- i cant seem to think too deeply about mum and dad and we were so close and a loving family its like im on autopilot and everything i do is just because its what i would normally do and nothing really seems to matter anymore- we,ve just got to go with our feelings, no other choice, best wishes to allx

Hello Karen
Thanks for replying, I am really moved to have read what you have been through. I agree with you, our feelings will do whatever they like and all we can do is feel them. It's all we can do but I can't understand things at all. Just feel so blank and stunned. I can see why you'd walk to your Mum's nursing home, I feel like Mum will leave hospital and come home. It's only been since Thursday and it's like it didn't happen to me. I think I better shut up now, Im going on a bit. I hope you are supported. All the best Karen and thanks for replying

 

[CAL Y]

Thanko

Thankyou so much for your reply. I appreciate what you have said. One of the biggest things I'm dealing with is guilt and regret. Guilt because I was too fearful to read up on her condition through sheer fear. And regret for not putting my own fears aside for the benefit of my Mum. I'm sorry that sounds really selfish I know. Just really struggling with feelings, as I'm sure many are. I am thankful for the reply and wish you well. Thanks again

@AuroraSkye . Please try not to feel guilt about your feelings of fear.
I can honestly say that for me, Dementia was a terrifying thing to deal with and after my husbands cancer diagnosis, in some ways it was a relief to know what I was dealing with. You are certainly Not selfish. Never forget that you cared for your Mum 24/7. That is the most unselfish thing we can do for our loved ones.

 

[AuroraSkye]

@AuroraSkye . Please try not to feel guilt about your feelings of fear.
I can honestly say that for me, Dementia was a terrifying thing to deal with and after my husbands cancer diagnosis, in some ways it was a relief to know what I was dealing with. You are certainly Not selfish. Never forget that you cared for your Mum 24/7. That is the most unselfish thing we can do for our loved ones.

Thankyou Cal.

 

[karenbow]

Hello Karen
Thanks for replying, I am really moved to have read what you have been through. I agree with you, our feelings will do whatever they like and all we can do is feel them. It's all we can do but I can't understand things at all. Just feel so blank and stunned. I can see why you'd walk to your Mum's nursing home, I feel like Mum will leave hospital and come home. It's only been since Thursday and it's like it didn't happen to me. I think I better shut up now, Im going on a bit. I hope you are supported. All the best Karen and thanks for replying

hi aurora your mentioning of fear and guilt to caly is exactly how i am- i was fearful for the future and felt that i should have been able to care for mum whatever was required , and the guilt is something im living with, i have to keep reminding myself that i cared for mum and dad and enjoyed being with them it wasn,t a chore for me but feel guilt that i let mum down when she needed me the most and i cry often- i dont know if you found this but nobody really spoke to me or reassured me it was the right decision- i just wanted someone in the medical profession to speak to me and tell me how it is ,making all decisions myself when id always had mum and dad by my side was difficult- i hope you will be ok in time,it is good to be able to speak of these things on this website we know there are many of us the same xx

 

[Linbrusco]

My Mum passed away in March.
In care since July 2016, and the last 2 yrs bed/chair bound, no mobility, unable to talk apart from a No or Yeah, slept majority of the time.
She developed pneumonia.
It was a slow, heartbreaking 7 days of watching her die.
Although I was tearful, I was releived.
I had cared for Mum for 5 yrs before her going into care.
I was very close to my Mum, and her death didnt impact me the way I thought or felt it should.
After her funeral I had a week off work, and then it was a case of life without Mum.
Dad who had only been at the same care home for 8 mnths, then passed away suddenly in June . He had moderate dementia but a whole raft of physical health issues, and had a ruptured aortic aneurysm.
I never had a good relationship with Dad, but his death shocked me more. Just the suddeness of it. No goodbyes. Yet again tearful.
At his funeral I did let out a few big sobs, thinking “ Thats it! Both my parents are gone”
Another week off work and a new normal. No Mum & Dad. No caring duties. No care home visits.
Then I was thrown into the deep end of being an Executor, Legal work, paperwork, emails & phone calls.
Disagreements with my siblings over Dads will and division of assets.
If I thought being POA was bad enough, I hate being an Executor especially joint with my sister. My husband and I had joint assets with my parents, and we’ve paid out my siblings. We’re getting to the end of it though.
Once Mum & Dads headstone is done, which is looking likely in March, on Mums anniversary…. maybe everything will hit me then.
At present I just feel like my parents are away on a long holiday.
People at work think I must be devestated at losing both parents in the space of 11 weeks.
Yes it was tough , but Im not distraught, but then I feel weirdly unusual that Im not.

 

[Grannie G]

How many years have you been grieving while caring for your parents @Linbrusco ? I think your grief is spent.

 

[AuroraSkye]

hi aurora your mentioning of fear and guilt to caly is exactly how i am- i was fearful for the future and felt that i should have been able to care for mum whatever was required , and the guilt is something im living with, i have to keep reminding myself that i cared for mum and dad and enjoyed being with them it wasn,t a chore for me but feel guilt that i let mum down when she needed me the most and i cry often- i dont know if you found this but nobody really spoke to me or reassured me it was the right decision- i just wanted someone in the medical profession to speak to me and tell me how it is ,making all decisions myself when id always had mum and dad by my side was difficult- i hope you will be ok in time,it is good to be able to speak of these things on this website we know there are many of us the same xx

Hello again Karen. I truly feel for all of us affected by guilt feelings. One tiniest benefit of crying is that you aren't keeping things bottled up, little consolation I know. When we changed direction because our GP locum said "it was the right thing to do" to go into hospital I seized the opportunity and begged Mum to go, she agreed and that is my particular "guilt" to bear. I can believe to a degree that the GP used her best judgement, even if it wasn't to be. However, the hospital medics were a different kettle of fish entirely. They'd be evasive, dismissive and if you didn't pin them down and bluntly ask, they'd put all kinds of "spin" on the situation. I'm not an assertive person and I should have been but like you say, it's not easy making decisions on your own for a loved one. Maybe its a culture in the NHS but its dire and I've lost trust in the NHS because of it. It wasn't meant to be such a downbeat reply. I'm sorry to have rambled a bit. Kindest wishes Karen.

 

[lizo]

I am just so relieved to have found this thread. My husband died a year ago after nearly sixty years together and ten years of dementia. I just haven't been able to grieve - I thought I would be devastated when he died, but instead I have been numb and have just got on with things, almost enjoying the relief and the freedom after so many years of caring for him. This has made me feel puzzled and guilty - I loved him so much and for so long, how could I be so emotionless about his loss? I can only think that it's because I had anticipated his death for so long, had cried inside so much while trying to keep a cheerful front for him and the utter sadness when COVID meant I could not visit him when he had to be admitted to a home, then when I was finally allowed to visit could no longer hold his hand as we always did and he didn't understand why.
To find that others have had the same experience has been enormously consoling. Maybe the grief will come eventually...who knows.

 

[AuroraSkye]

My Mum passed away in March.
In care since July 2016, and the last 2 yrs bed/chair bound, no mobility, unable to talk apart from a No or Yeah, slept majority of the time.
She developed pneumonia.
It was a slow, heartbreaking 7 days of watching her die.
Although I was tearful, I was releived.
I had cared for Mum for 5 yrs before her going into care.
I was very close to my Mum, and her death didnt impact me the way I thought or felt it should.
After her funeral I had a week off work, and then it was a case of life without Mum.
Dad who had only been at the same care home for 8 mnths, then passed away suddenly in June . He had moderate dementia but a whole raft of physical health issues, and had a ruptured aortic aneurysm.
I never had a good relationship with Dad, but his death shocked me more. Just the suddeness of it. No goodbyes. Yet again tearful.
At his funeral I did let out a few big sobs, thinking “ Thats it! Both my parents are gone”
Another week off work and a new normal. No Mum & Dad. No caring duties. No care home visits.
Then I was thrown into the deep end of being an Executor, Legal work, paperwork, emails & phone calls.
Disagreements with my siblings over Dads will and division of assets.
If I thought being POA was bad enough, I hate being an Executor especially joint with my sister. My husband and I had joint assets with my parents, and we’ve paid out my siblings. We’re getting to the end of it though.
Once Mum & Dads headstone is done, which is looking likely in March, on Mums anniversary…. maybe everything will hit me then.
At present I just feel like my parents are away on a long holiday.
People at work think I must be devestated at losing both parents in the space of 11 weeks.
Yes it was tough , but Im not distraught, but then I feel weirdly unusual that Im not.

Hello Linbrusco. I'm sorry to read of what you have been through I also think Mum is Somewhere else. I'm currently frozen in time, whatever time is.

 

[AuroraSkye]

I am just so relieved to have found this thread. My husband died a year ago after nearly sixty years together and ten years of dementia. I just haven't been able to grieve - I thought I would be devastated when he died, but instead I have been numb and have just got on with things, almost enjoying the relief and the freedom after so many years of caring for him. This has made me feel puzzled and guilty - I loved him so much and for so long, how could I be so emotionless about his loss? I can only think that it's because I had anticipated his death for so long, had cried inside so much while trying to keep a cheerful front for him and the utter sadness when COVID meant I could not visit him when he had to be admitted to a home, then when I was finally allowed to visit could no longer hold his hand as we always did and he didn't understand why.
To find that others have had the same experience has been enormously consoling. Maybe the grief will come eventually...who knows.

Hello Lizo Im utterly sorry to have read what happened throughout COVID too. It's a bit like a bomb has gone off inside the mind and the fragments take time to fall. I'm still fairly blank. I've been wondering when was the last time I missed my Mum, as she was. I have to say I really don't know. After getting some good advice and insight from the good people here I found I'm not alone. I've read a bit as well and found dementia loss has its own set of difficulties with things like anticipated, compounded and disenfranchised stages. But it doesn't make it any easier, quite the opposite. More questions than answers but it does explain why we perhaps feel as we do to some extent. I'm sending loads of compassionate thoughts to you in the absence of wisdom, which I'm desperately short of. Take care Lizo

 

[Shedrech]

hi @lizo
grief is so personal, it takes us all differently
the numbness you describe sounds to me very much like grief ... there's a song that says
"some hurt can make you cry, some make you want to die, and some just goes too deep for tears"

 

[lushr]

grief is about change…. losing the life you lost…. sometimes you can only see good changes, which are easier to accept, and it takes time to remember the other things, that you really can never have back, their laughter etc… but you know if they have dementia, you probably lost. lot of that long ago and so in a way you’ve been grieving a long time.

but it always comes… eventually…