Two weeks since Dad passed- lots of thoughts

Sass Mac

Registered User
Jan 27, 2014
8
0
Hello all
It's nearly 5 years since I've posted on TP, since the awfulness of Lewy Body Dementia invaded our lives and I didn't know where to turn.
Things did get better, for me, if not my Dad. We found a good care home. Eventually Dad settled and stopped sitting by the door with coat on and his case packed ever day. The disease or the medication took away his personality and feistiness, but it made him easier, more smiley and amenable. I was grateful for that.
I distanced myself emotionally, it was my way of coping. I stepped down my visiting to one a week. " Does he know you?' Was the question people always asked. I had no idea. Sometimes I got a smile but so did the care assistants and wasn't that more about me wanting to be comforted by his recognising me than about him?
I thought I'd done my grieving.

He passed away 2 weeks ago. Immediately it felt that the dementia years had been lifted. He was back to being him and of course the memories people bring when someone has died are of the person as they were, tales of the lively and unique character. The funeral was nice, a celebration and he hadn't been forgotten by his friends, although few came to see him in the CH.

So I feel I lost him gradually through dementia perhaps a kinder way than suddenly or traumatically or someone staying lucid to the end. Is it easier to deal with that way?

One thing that did make me sad was that the care home staff were so much closer to him than I at the end . They understood his behaviours and attempts to communicate which I did not.
I wasn't there at the end. I thought I wanted to be but after a 16 hour vigil through the night listening to breathing patterns and my heart stopping thinking he'd gone at least 20 times I wasn't so sure! I'm sure he was completely out of it, but I still had this crazy thought that he would come back for a brief moment of lucidity and speak some last words of wisdom. Hardly likely when he hadn't spoken for 3 years was it? I suppose what I wanted was to know he understood what had happened to him and why I'd needed to " put him in a home" .

Thanks for reading. It's made me feel better for writing that all down. I'd love to hear from others in a similar place at the moment
Sass x
 

Elle3

Registered User
Jun 30, 2016
705
0
Hi Sass Mac, So sorry for your loss.

My dad died too, just over 2 weeks ago on the 13th March, the funeral is tomorrow. My dad's death was sudden and unexpected he suffered a heart attack. My dad had only been in a care home since April last year and I felt very guilty at the time for placing him in there, but he needed to be there for his own safety. My dad had almost lost the ability to communicate so visits were difficult, but I hold on to the thought that I think he still recognised me, maybe not as his daughter, but someone that was familiar and he trusted, which I always take comfort in. The staff were great at boosting him up and telling him who I was and talking about me to him. But like you I did start to feel that the staff knew dad's needs better than I did, but I think I was accepting that, I wasn't his carer anymore, I was just his daughter and that I suppose is how it should be.

I'm glad the funeral went well, my dad had few friends and fewer relatives that are still alive, so tomorrow will be a small affair but I've written an Eulogy which I hope those that come will remember him by.

Take care.
Elle x
 

Pouli

Registered User
Feb 9, 2019
49
0
Hello Sass Mac. So sorry for your loss. Many of us know how you feel. My lovely husband died on 16th March. It was peaceful and at home and I am very grateful for that. I think he always knew me, not always me specifically, but he always knew I was one of the family, and so I answered to any family name. When the anger surfaced then he really knew I was me. As someone says elsewhere, the main carer often has a hard time of it. But I had long ago accepted that that was the dementia, and not my husband. We all do our best for our loved one, in different ways, and that is what we must remember. Be kind to yourself and remember him as he was.
 

Sass Mac

Registered User
Jan 27, 2014
8
0
Hi Sass Mac, So sorry for your loss.

My dad died too, just over 2 weeks ago on the 13th March, the funeral is tomorrow. My dad's death was sudden and unexpected he suffered a heart attack. My dad had only been in a care home since April last year and I felt very guilty at the time for placing him in there, but he needed to be there for his own safety. My dad had almost lost the ability to communicate so visits were difficult, but I hold on to the thought that I think he still recognised me, maybe not as his daughter, but someone that was familiar and he trusted, which I always take comfort in. The staff were great at boosting him up and telling him who I was and talking about me to him. But like you I did start to feel that the staff knew dad's needs better than I did, but I think I was accepting that, I wasn't his carer anymore, I was just his daughter and that I suppose is how it should be.

I'm glad the funeral went well, my dad had few friends and fewer relatives that are still alive, so tomorrow will be a small affair but I've written an Eulogy which I hope those that come will remember him by.

Take care.
Elle x
Hello Elle
Thanks for your kind words. I'm so sorry for your loss. I hope the funeral goes well tomorrow. Are you going to deliver the eulogy?
My Dad's funeral seems like a dream now when I think of it. The mind has a way of protecting us I think. Wherever he was, I didn't believe he was in that wooden box.
Take care
Sx
 

Sass Mac

Registered User
Jan 27, 2014
8
0
Hello Sass Mac. So sorry for your loss. Many of us know how you feel. My lovely husband died on 16th March. It was peaceful and at home and I am very grateful for that. I think he always knew me, not always me specifically, but he always knew I was one of the family, and so I answered to any family name. When the anger surfaced then he really knew I was me. As someone says elsewhere, the main carer often has a hard time of it. But I had long ago accepted that that was the dementia, and not my husband. We all do our best for our loved one, in different ways, and that is what we must remember. Be kind to yourself and remember him as he was.
Thanks Pauli. I am so sorry to read about the loss of your husband. It sounds as though his passing would be how most of us want to go, at home with family close by. You sound very wise! I wish you comfort in the days and weeks ahead
Sass x
 

Pouli

Registered User
Feb 9, 2019
49
0
Hi Sass Mac, So sorry for your loss.

My dad died too, just over 2 weeks ago on the 13th March, the funeral is tomorrow. My dad's death was sudden and unexpected he suffered a heart attack. My dad had only been in a care home since April last year and I felt very guilty at the time for placing him in there, but he needed to be there for his own safety. My dad had almost lost the ability to communicate so visits were difficult, but I hold on to the thought that I think he still recognised me, maybe not as his daughter, but someone that was familiar and he trusted, which I always take comfort in. The staff were great at boosting him up and telling him who I was and talking about me to him. But like you I did start to feel that the staff knew dad's needs better than I did, but I think I was accepting that, I wasn't his carer anymore, I was just his daughter and that I suppose is how it should be.

I'm glad the funeral went well, my dad had few friends and fewer relatives that are still alive, so tomorrow will be a small affair but I've written an Eulogy which I hope those that come will remember him by.

Take care.
Elle x
(((( hugs)))))) Elle3. I hope all goes well for you tomorrow. I'll be thinking about you.
 

Pouli

Registered User
Feb 9, 2019
49
0
Thanks Pauli. I am so sorry to read about the loss of your husband. It sounds as though his passing would be how most of us want to go, at home with family close by. You sound very wise! I wish you comfort in the days and weeks ahead
Sass x
I don't feel very wise. I'm still in limbo and don't know where I am some of the time. Still, one foot in front of the other.
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
Hi @Sass Mac I know well some of the feelings you talk about in your post. So sorry for the loss of your Dad.
I had a week of vigils for my mum. I was in the hospital twice a day. Coming in at around midday, going home for dinner & a break around 5/6pm & then back at the hospital for a few more hours. I never stayed overnight as my mum remained on the ward. Maybe she should have been put into a side room but I didn’t want her to be on her own.
The final day my mum’s breathing was very inconsistent & the trauma of looking at her to see if she was still breathing or not was just horrendous.

I don’t know if the carers knew my mum better - she was in the care home for a year. The carers got on well with her, she was one of the favourites but she was pretty difficult when she wanted to be. I never had official reports from the care home about how my mum was. They did a review on my mum a few weeks after she came in but I never saw the report ( we were on holiday at the time) we could see the progression in her condition with much reduced incontinence ( double) frailty but she was pretty settled. This is another task to add to the list, sort out my mum’s stuff in the care home xx
 

Karen22

Registered User
Nov 3, 2012
88
0
My dad died in hospital on Wednesday morning and I haven't got beyond the stage of thinking of him suffering in there at the moment. I know there's so much more to come. He was in and out of hospital no end of times over the past 2/3 years. One good thing is that he forgot all he went through but I didn't. I was with him at the end - just got there in time - but my last visit before that was awful as he was struggling to breathe. I couldn't stay as long as I would have liked with him or go as often as I would have liked due to my own health problems and my husband's but we did so much to help him, more than was good for us really. Irrationally, it doesn't seem enough and I so wish I had been there more with him towards the end, although we didn't know it was at the time.
After dealing with the end stage I have to go back over past memories which will be very difficult as he lied to me (and my lovely mum who died in 2014) and I don't think he was the person I thought he was. However, he was my dad and I loved him even if he wasn't and even if he didn't think that much of me.
I hope I can get through this one step at a time as, at the moment, it seems such a mountain to climb.
Karen