Grief Before Loss

[MargosGrandaughter]

My Nannan has had dementia for a while. It was really slowly and steadily declining. She would repeat stories to me moments after she had said them, she would potter around the house confused, and she'd firmly believe that she had showered that day when she hadn't. Really manageable stuff for us - she could still chat to us and she still felt like my Nannan.

Then December happened. My Nannan had fallen when she was sitting down on her arm chair; she had sat too early and missed the seat. She was in hospital for a while and spent some time in a care home so she could have round the clock care during her recovery, and the deterioration in this period of time was shocking. When she came home fully in January, she could no longer walk - she is bedbound in a hospital bed in the living room. She can no longer talk. She cries when I try to feed her, despite her having refused food all day.

I felt as though I was coping okay until now. I work in Psychology and have spent so many hours on dementia wards that I have become fairly accustomed to the illness. I think my brain was trying to see it as work to protect myself from this feeling that has grown now. My Nannan looked at me the other day and I can't describe her expression; I just knew in that moment that she'd gone. I went home that evening and sobbed and sobbed and sobbed.

My Nannan taught me how to make Yorkshire puddings and pancakes when I was a little girl; she'd scold me and my sister for pinching all of her pickled onions out of her cabinets, and she'd sit for hours showing me how to knit. When I look at the person in her house, who looks like my Nannan, I see a stranger. That feeling in itself is something I could never wish on another person. I'd love to hear anyone elses experiences if they've felt similar; it just feels like such an isolating feeling.

 

[DeeCee7]

Hello @MargosGrandaughter the title of your post says it all, “Grief before loss”. You are going through the trauma of losing your beloved Nannan, whilst still caring for the person she has been reduced to. It’s heartbreaking and although you have had many years experience of working in mental health, this was as a professional but now it’s personal. This deterioration has been quite recent, so you are still in shock. There have been many posts on here about this subject, written from the heart, some in prose and some in poetry but all expressing the same feelings of loss. Read them if it will bring you some comfort. Meanwhile, give yourself a little of the love you have shown your Nannan. Take care.

 

[upsanddownsdays]

Hello , I read your post and can understand exactly how you are feeling .
One thing I say to myself before I go to see my mum who has Alzheimer's and mixed dementia, is that the body may be changing but the soul remains the same .
Some how that helps get me through . Hope it might help you too .
She is still there underneath it all , the person you love .

 

[TryingToRetainGrace]

My Nannan has had dementia for a while. It was really slowly and steadily declining. She would repeat stories to me moments after she had said them, she would potter around the house confused, and she'd firmly believe that she had showered that day when she hadn't. Really manageable stuff for us - she could still chat to us and she still felt like my Nannan.

Then December happened. My Nannan had fallen when she was sitting down on her arm chair; she had sat too early and missed the seat. She was in hospital for a while and spent some time in a care home so she could have round the clock care during her recovery, and the deterioration in this period of time was shocking. When she came home fully in January, she could no longer walk - she is bedbound in a hospital bed in the living room. She can no longer talk. She cries when I try to feed her, despite her having refused food all day.

I felt as though I was coping okay until now. I work in Psychology and have spent so many hours on dementia wards that I have become fairly accustomed to the illness. I think my brain was trying to see it as work to protect myself from this feeling that has grown now. My Nannan looked at me the other day and I can't describe her expression; I just knew in that moment that she'd gone. I went home that evening and sobbed and sobbed and sobbed.

My Nannan taught me how to make Yorkshire puddings and pancakes when I was a little girl; she'd scold me and my sister for pinching all of her pickled onions out of her cabinets, and she'd sit for hours showing me how to knit. When I look at the person in her house, who looks like my Nannan, I see a stranger. That feeling in itself is something I could never wish on another person. I'd love to hear anyone elses experiences if they've felt similar; it just feels like such an isolating feeling.

I am so sorry you are going through this. It is really really hard. My dad is not my dad now and that kills me. But every now and then there are glimmers of him.

There is an expression - death by a thousand cuts - and to me that is what dementia feels like. Every day the knife sticks in a little bit further, you lose a little bit more of your loved one. Sometimes I can just roll with the punches, sometimes I have floods of tears. Sometimes we have a fun moment or a nice outing and it is great. It is a rollercoaster.

I try to tell myself it is just the illness, it is not my dad.

Your Nannan sounds like a wonderful person, I am so glad you have some lovely memories and I hope you are able to make some more in the future. Sending you all the best.

 

[KayCpm19]

I had to reply to your post to say I know how you are feeling. My mum also had a fall just before Christmas and since then I feel like I have lost her. Sometimes the pain of it just feels so deep and she’s still here. It is the hardest, cruelest illness. If I could remove your pain I really would as it is the worst worst feeling. Sending my very best. I hope you have support to get you through and sending all my best for your Nannan.

 

[MargosGrandaughter]

Hello @MargosGrandaughter the title of your post says it all, “Grief before loss”. You are going through the trauma of losing your beloved Nannan, whilst still caring for the person she has been reduced to. It’s heartbreaking and although you have had many years experience of working in mental health, this was as a professional but now it’s personal. This deterioration has been quite recent, so you are still in shock. There have been many posts on here about this subject, written from the heart, some in prose and some in poetry but all expressing the same feelings of loss. Read them if it will bring you some comfort. Meanwhile, give yourself a little of the love you have shown your Nannan. Take care.

Thank you very much for your lovely reply. It means the world to me.

 

[MargosGrandaughter]

Hello , I read your post and can understand exactly how you are feeling .
One thing I say to myself before I go to see my mum who has Alzheimer's and mixed dementia, is that the body may be changing but the soul remains the same .
Some how that helps get me through . Hope it might help you too .
She is still there underneath it all , the person you love .

This is really helpful, thank you so much for sharing. I’ll give this a try when I go over tonight to get her ready for bed. I’m sorry you know the feeling

 

[MargosGrandaughter]

I am so sorry you are going through this. It is really really hard. My dad is not my dad now and that kills me. But every now and then there are glimmers of him.

There is an expression - death by a thousand cuts - and to me that is what dementia feels like. Every day the knife sticks in a little bit further, you lose a little bit more of your loved one. Sometimes I can just roll with the punches, sometimes I have floods of tears. Sometimes we have a fun moment or a nice outing and it is great. It is a rollercoaster.

I try to tell myself it is just the illness, it is not my dad.

Your Nannan sounds like a wonderful person, I am so glad you have some lovely memories and I hope you are able to make some more in the future. Sending you all the best.

I’m so sorry you know the feeling first hand. Thank you very much for your lovely comment. Just hearing other people’s experiences makes me feel so much less alone

 

[MargosGrandaughter]

I had to reply to your post to say I know how you are feeling. My mum also had a fall just before Christmas and since then I feel like I have lost her. Sometimes the pain of it just feels so deep and she’s still here. It is the hardest, cruelest illness. If I could remove your pain I really would as it is the worst worst feeling. Sending my very best. I hope you have support to get you through and sending all my best for your Nannan.

Thank you very much, your comment means more than I could ever tell you. I’m so sorry that you’re also going through this. I’ve never quite experienced this emotion before, it’s so overwhelming. I hope you’re doing okay despite the circumstances

 

[Hartwick]

Hello , I read your post and can understand exactly how you are feeling .
One thing I say to myself before I go to see my mum who has Alzheimer's and mixed dementia, is that the body may be changing but the soul remains the same .
Some how that helps get me through . Hope it might help you too .
She is still there underneath it all , the person you love .

Hello
Just been reading all your posts I know how you are all feeling. My mum has Vascular Dementia and I feel as though I am grieving everyday but she is still here in body. As you say the soul remains the same which is a lovely thought. Take Care everyone .