The long goodbye

Sasperilla

Registered User
Aug 17, 2020
47
0
Hi everyone,
It’s nice to be here and have some people to talk to. My Dad was diagnosed with mixed dementia in 2020. Prior to that he’s been a bit forgetful. He’s been declining steadily over the last 2 years. He now has no short-term memory at all but his long-term memory is pretty good. I can still have a pretty good conversation with him, although he asks the same questions over and over.

Physically, he sleeps a lot - maybe 6 hours per day and still goes to bed early and sleeps. I think he’s been a poor eater since my brother died very suddenly a few years ago. He’s now extremely thin. I think my brother dying when he was young actually sped up the dementia, as my Dad was heartbroken .

My Dad was a tall strong man, who always had a solution to everything, and a keen mind. It’s been so sad seeing him literally fade. I know we have been lucky (so far), as he still recognises us and has not been aggressive or anything.

Yet the weight of it is still heavy. My Dad was the only person who made me feel that someone ‘saw me’ as a child. A world without him feels like a much lonelier place. Losing him gradually is so painful but I’m trying to see that it’s my turn to make sure he is ok.

I’ve posted a couple of times on here but, honestly, I’ve had my head in the sand, which is really unlike me. Normally I have no time to think but this is the first time in ages that I’ve been home alone and all the feelings are coming to the surface. I hardly ever cry, but the tears are streaming down my face as I write this. It’s just such a heavy weight.

I just wanted to start this to document my experiences and say thank to all of you who’ve been so welcoming and willing to share your experiences. I’m grateful for the company on this journey that we didn’t want to be on.
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
Hi. Welcome to TP.I have several threads going documenting my journey with my dad. Dad was diagnosed end of 2015. He has VD. You are right. It is a long goodbye. He is now 89 and bed bound. We are all supportive here. So keep posting ?
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
Welcome back to posting @Sasperilla.

I’m so sorry that things are so bad with your dad. I know how hard it is.

I think it’s a really good idea to g have somewhere to document your experiences. I had a long running thread when I was caring for my mum and my husband, who both had dementia. It helped me enormously.

I know you’ll get lots of understanding and support here.
 

VBee

New member
Aug 13, 2022
7
0
Hi, I feel your pain. My mum is 87, has VD and no short term memory. Her long term memory has nearly all gone too. I’m 51 and when I was 17, my dad passed away. The thing I’m struggling with the most emotionally is that my Mum now can’t remember my Dad at all. We used to talk about him but now she doesn’t remember a thing about him. I’m an only child so there’s no one around me that even knew my Dad, let alone talk about him or share memories . Plus my Mum said recently that she was never that fond of him and felt forced into marrying him. I thought they had a happy marriage. I don’t know if her memories are confused or if the deep rooted true feelings are coming to the surface. It makes me feel very sad and question my seemingly extremely happy childhood. Sorry to respond with a paragraph all about my situation but your post struck a chord. Sending you very best wishes.
 

Sasperilla

Registered User
Aug 17, 2020
47
0
Hi. Welcome to TP.I have several threads going documenting my journey with my dad. Dad was diagnosed end of 2015. He has VD. You are right. It is a long goodbye. He is now 89 and bed bound. We are all supportive here. So keep Th
Hi, I feel your pain. My mum is 87, has VD and no short term memory. Her long term memory has nearly all gone too. I’m 51 and when I was 17, my dad passed away. The thing I’m struggling with the most emotionally is that my Mum now can’t remember my Dad at all. We used to talk about him but now she doesn’t remember a thing about him. I’m an only child so there’s no one around me that even knew my Dad, let alone talk about him or share memories . Plus my Mum said recently that she was never that fond of him and felt forced into marrying him. I thought they had a happy marriage. I don’t know if her memories are confused or if the deep rooted true feelings are coming to the surface. It makes me feel very sad and question my seemingly extremely happy childhood. Sorry to respond with a paragraph all about my situation but your post struck a chord. Sending you very best wishes.
Welcome back to posting @Sasperilla.

I’m so sorry that things are so bad with your dad. I know how hard it is.

I think it’s a really good idea to g have somewhere to document your experiences. I had a long running thread when I was caring for my mum and my husband, who both had dementia. It helped me enormously.

I know you’ll get lots of understanding and support here.
Thanks Izzy!
 

Sasperilla

Registered User
Aug 17, 2020
47
0
Hi, I feel your pain. My mum is 87, has VD and no short term memory. Her long term memory has nearly all gone too. I’m 51 and when I was 17, my dad passed away. The thing I’m struggling with the most emotionally is that my Mum now can’t remember my Dad at all. We used to talk about him but now she doesn’t remember a thing about him. I’m an only child so there’s no one around me that even knew my Dad, let alone talk about him or share memories . Plus my Mum said recently that she was never that fond of him and felt forced into marrying him. I thought they had a happy marriage. I don’t know if her memories are confused or if the deep rooted true feelings are coming to the surface. It makes me feel very sad and question my seemingly extremely happy childhood. Sorry to respond with a paragraph all about my situation but your post struck a chord. Sending you very best wishes.
Hi VBee, I am so sorry. That sounds very complicated. You must feel disoriented with learning all this new knowledge. It is possible that she felt like that at the time, but still had a happy marriage. X
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
Sitting in the sunny care home garden with my wife sharing a bag of Tangfastics and listening to music, I have my own version of the long goodbye. That is the cruelty of dementia. She looks smart in her summer dress and newly washed hair but that is just outward appearance. The wires that got crossed 10 years ago have only got more tangled.

Bob Seger's song. sharing the title of your post, is a lyrically poignant summary of one person's experience, and one my wife still likes.

I glad that you are able to offload here @Sasperilla and hope that sharing helps in some way.
 
Last edited:

Griffe

New member
Aug 14, 2022
2
0
Hello Everyone

I am new here but after reading everyone's situations I just wanted to reach out and share my story.

My mum, who is 87, was diagnosed with dementia this year but is waiting for a head scan to obtain the full picture. I am 67, an only child and share the responsibilities of her care with my husband, who is brilliant and very patient. I still work although now it is only three days a week, my husband works full time but it can be very stressful. She has other health issues too and has lost so much weight it is heart breaking. Her short term memory has gone, this morning for example she was asking time and time again when will the milkman be delivering her milk, this hasn’t happened for many years. As Sasperilla mentions about repeating everything, my mum does this and to be honest it can be at times exhausting. I understand it is the dementia talking, at least she still recognises us but sadly can’t remember one of our beloved cats who we lost several weeks ago, she loved stroking and talking to him but that memory has now vanished.

She had trouble taking her medication, we had to ask her GP for help and we now have a Pivotal machine which dispenses her tablets twice a day. Although having said that we are always reminding her did you take your tablets, just in case.

I lost my father 16 years ago to cancer, I still miss him, as far as I know so does my mum, she cries a lot and says ‘I wish your Dad was here’……so do I.

This illness takes away so much of the person’s personality, I try and tell myself she’s still my mum just a bit different, it hasn’t taken away her sense of humour though, she can still laugh at silly things and that’s the best medicine in the world, for both of us.

Best wishes to all
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
My Dad was the only person who made me feel that someone ‘saw me’ as a child. A world without him feels like a much lonelier place.

We're losing the most important witnesses to, and validations of, our entire lives. Although my relationship with my mother was a bit more complicated (her side of the family did matriarchal very well!) she's still the most important witness I have, and the person I always wanted to please most.

Boys and their Mums, eh? No... people and their parents. Even the very worst parents shape us in some way, and proving yourself is probably an even bigger deal then. Those blessed with good parents and great relationships with them must find it even harder though.

Anyway, we're a lot closer to the end of the journey than you are. All stages are bitterly sad, but relish every moment you have -- wherever possible -- of this version of your father. Your thread title drew me here and gave me an excuse to clumsily record the latest... probably last song Mum will inspire. "The Longest Goodbye". I was going to wait and record it properly with better sound, but I'm not sure I do anything "properly" any more.

Some good's come of it though. I need to trim a stray hair under my left ear!


Oh tell me that you love me, or that you don't care
But please tell me something, prove that you're still there
I don't believe in miracles, but I'm prepared to try
Anything is better than this lonely, longest goodbye

Oh tell me when you're happy, tell me if you're sad
Tell me I'm your son, or even I'm your Dad
Truth is not important, I'm happy to hear lies
All I ask of you is one, final surprise

Oh tell me I'm your hero, tell me I'm a fool
Tell me that you got up late, and need to go to school
Tell me I'm your friend, or the one you hate
But please tell me something, before it's too late
Before it's too late

Oh, tell me that you love me, or tell me you don't care
But please tell me something, prove that you're still there
I don't believe in miracles, but I'm prepared to try
Anything is better...
Anything is better...
Anything is better than this lonely, longest goodbye
This longest goodbye...
This longest goodbye...

Oh... when you squeeze my finger, I feel that you're still there
It isn't very much, but it's something we still share
It may not be an answer, but it's more than words can say
So please squeeze my finger, as you're slowly... slipping... away
 
Last edited:

Mrs Humphrey

Registered User
May 14, 2021
71
0
My husband died three weeks ago having been diagnosed with dementia 2 years ago but it was definitely there prior to diagnosis. Although he was never aggressive and never wandered and slept ok he was so very confused and had hardly any verbal skills at all. Quite frankly I did not cope well emotionally and worried all the time and with the pandemic felt lost and adrift. He deteriorated and I was snappy and irritable which I bitterly regret now but it was more than I could bear to watch as he was such a clever handsome and caring man. I found it totally heartbreaking. His life ended after a hospital stay for a mild heart problem and he caught Covid while in hospital which gave him severe delirium from which he never recovered and spent the last 16 weeks of his life in a care home unable to move at all and asleep for much of the time. Eventually he refused to eat or drink and he died. Please understand that the sadness of witnessing dementia is truly awful and like you I felt I didn't know how to cope as it isn't what we would call a "normal" illness. You can only do your best which I am sure you are doing. Everyone is made differently but this disease can bring out the best in you or the worst. At times it brought out the best in me but on other occasions it brought out the very worst .None of us are saints and none of us are cut out for this type of illness.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
Hi @Griffe and welcome to Dementia Talking Point. This is a friendly and supportive community that offers you a safe space to ask questions, post threads, help others by posting to their threads and letting off steam when you need to.
 

Sasperilla

Registered User
Aug 17, 2020
47
0
Sitting in the sunny care home garden with my wife sharing a bag of Tangfastics and listening to music, I have my own version of the long goodbye. That is the cruelty of dementia. She looks smart in her summer dress and newly washed hair but that is just outward appearance. The wires that got crossed 10 years ago have only got more tangled.

Bob Seger's song. sharing the title of your post, is a lyrically poignant summary of one person's experience, and one my wife still likes.

I glad that you are able to offload here @Sasperilla and hope that sharing helps in some way.
This made me laugh because I love all haribo! Haribo from overseas is the best though! Ten years is a very long journey. I’m sorry that you’re having to cope with this heartbreak. I will look that song up, although for some reason, I just watched James Blunt’s Monsters music video - not recommended if you are feeling weepy!
 

Sasperilla

Registered User
Aug 17, 2020
47
0
Hello Everyone

I am new here but after reading everyone's situations I just wanted to reach out and share my story.

My mum, who is 87, was diagnosed with dementia this year but is waiting for a head scan to obtain the full picture. I am 67, an only child and share the responsibilities of her care with my husband, who is brilliant and very patient. I still work although now it is only three days a week, my husband works full time but it can be very stressful. She has other health issues too and has lost so much weight it is heart breaking. Her short term memory has gone, this morning for example she was asking time and time again when will the milkman be delivering her milk, this hasn’t happened for many years. As Sasperilla mentions about repeating everything, my mum does this and to be honest it can be at times exhausting. I understand it is the dementia talking, at least she still recognises us but sadly can’t remember one of our beloved cats who we lost several weeks ago, she loved stroking and talking to him but that memory has now vanished.

She had trouble taking her medication, we had to ask her GP for help and we now have a Pivotal machine which dispenses her tablets twice a day. Although having said that we are always reminding her did you take your tablets, just in case.

I lost my father 16 years ago to cancer, I still miss him, as far as I know so does my mum, she cries a lot and says ‘I wish your Dad was here’……so do I.

This illness takes away so much of the person’s personality, I try and tell myself she’s still my mum just a bit different, it hasn’t taken away her sense of humour though, she can still laugh at silly things and that’s the best medicine in the world, for both of us.

Best wishes to all
I relate to this so much Griffe - my Dad loves mischief and when he laughs that comes through. The questions are hard work. I try to answer a different way every time but when I’m tired, I answer very briefly but then try to distract onto another topic. I feel like you almost have to get into their mindset and forget that you’ve answered it 18 times already!
 

Sasperilla

Registered User
Aug 17, 2020
47
0
My husband died three weeks ago having been diagnosed with dementia 2 years ago but it was definitely there prior to diagnosis. Although he was never aggressive and never wandered and slept ok he was so very confused and had hardly any verbal skills at all. Quite frankly I did not cope well emotionally and worried all the time and with the pandemic felt lost and adrift. He deteriorated and I was snappy and irritable which I bitterly regret now but it was more than I could bear to watch as he was such a clever handsome and caring man. I found it totally heartbreaking. His life ended after a hospital stay for a mild heart problem and he caught Covid while in hospital which gave him severe delirium from which he never recovered and spent the last 16 weeks of his life in a care home unable to move at all and asleep for much of the time. Eventually he refused to eat or drink and he died. Please understand that the sadness of witnessing dementia is truly awful and like you I felt I didn't know how to cope as it isn't what we would call a "normal" illness. You can only do your best which I am sure you are doing. Everyone is made differently but this disease can bring out the best in you or the worst. At times it brought out the best in me but on other occasions it brought out the very worst .None of us are saints and none of us are cut out for this type of illness.
Thank you for sharing this Mrs Humphrey. That sounds truly awful coping with that during the pandemic. It’s not surprising you were snappy - we all were, even without those stresses. I love that you can remember him as the clever, handsome, caring man he was. I’m sure that’s how he would want you to remember him.
 

Sasperilla

Registered User
Aug 17, 2020
47
0
We're losing the most important witnesses to, and validations of, our entire lives. Although my relationship with my mother was a bit more complicated (her side of the family did matriarchal very well!) she's still the most important witness I have, and the person I always wanted to please most.

Boys and their Mums, eh? No... people and their parents. Even the very worst parents shape us in some way, and proving yourself is probably an even bigger deal then. Those blessed with good parents and great relationships with them must find it even harder though.

Anyway, we're a lot closer to the end of the journey than you are. All stages are bitterly sad, but relish every moment you have -- wherever possible -- of this version of your father. Your thread title drew me here and gave me an excuse to clumsily record the latest... probably last song Mum will inspire. "The Longest Goodbye". I was going to wait and record it properly with better sound, but I'm not sure I do anything "properly" any more.

Some good's come of it though. I need to trim a stray hair under my left ear!


Oh tell me that you love me, or that you don't care
But please tell me something, prove that you're still there
I don't believe in miracles, but I'm prepared to try
Anything is better than this lonely, longest goodbye

Oh tell me when you're happy, tell me if you're sad
Tell me I'm your son, or even I'm your Dad
Truth is not important, I'm happy to hear lies
All I ask of you is one, final surprise

Oh tell me I'm your hero, tell me I'm a fool
Tell me that you got up late, and need to go to school
Tell me I'm your friend, or the one you hate
But please tell me something, before it's too late
Before it's too late

Oh, tell me that you love me, or tell me you don't care
But please tell me something, prove that you're still there
I don't believe in miracles, but I'm prepared to try
Anything is better...
Anything is better...
Anything is better than this lonely, longest goodbye
This longest goodbye...
This longest goodbye...

Oh... when you squeeze my finger, I feel that you're still there
It isn't very much, but it's something we still share
It may not be an answer, but it's more than words can say
So please squeeze my finger, as you're slowly... slipping... away
So lovely Andrew! Thanks for recording this. Your words about witnessing people really strike a chord. Losing a parent is losing a bit of yourself, no matter how complicated or unresolved the relationship was. It might even be harder for people who’ve had complicated relationships. The relationship between boys and their mum can be really special - glad you can still enjoy your Mum.
 

Sasperilla

Registered User
Aug 17, 2020
47
0
Welcome back to posting @Sasperilla.

I’m so sorry that things are so bad with your dad. I know how hard it is.

I think it’s a really good idea to g have somewhere to document your experiences. I had a long running thread when I was caring for my mum and my husband, who both had dementia. It helped me enormously.

I know you’ll get lots of understanding and support here.
Izzy thanks for the lovely welcome! I’ve got very confused about who I replied to, as the threads are hard to follow on a phone, so forgive me if I’m double posting!
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
Izzy thanks for the lovely welcome! I’ve got very confused about who I replied to, as the threads are hard to follow on a phone, so forgive me if I’m double posting!

Oh please don’t worry - you’ll get used to it all!
 

Sasperilla

Registered User
Aug 17, 2020
47
0
I just wanted to pop in here and say what a lovely day I had with my Dad today. Yes, he asked the same things over and over, but we also had a good old chat and brought him fish and chips and he really perked up. It’s good to have nice days when you can still enjoy the time you have left. Hope you are all doing well.
 

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