Children Of Dementia

[IzzyJ]

Just wanted to add my support and sympathy, to everyone on here, to Quilty for her generosity in starting this thread, and to Onlyme as what you have written has really touched my heart.
My mum died on 26th March. Leedslass, I too dreaded the days when I was looking after her for the last few months and hate that I did. The guilt over that is a constant, as is the hollow loss now. But I am also so angry, I don't know what about, whether it is at the illness, at other family members, at the person my mother became because she wasn't my mum for a long time before she died, or at myself.
I do find TP such a comfort. People here understand the maelstrom of emotions and feelings and never judge.

 

[Scarlett123]

Just wanted to add my support and sympathy, to everyone on here, to Quilty for her generosity in starting this thread, and to Onlyme as what you have written has really touched my heart.
My mum died on 26th March. Leedslass, I too dreaded the days when I was looking after her for the last few months and hate that I did. The guilt over that is a constant, as is the hollow loss now. But I am also so angry, I don't know what about, whether it is at the illness, at other family members, at the person my mother became because she wasn't my mum for a long time before she died, or at myself.
I do find TP such a comfort. People here understand the maelstrom of emotions and feelings and never judge.

I find I can empathise with so many comments that people make, and I know others can too. To begin with, I gave myself a Very Hard Time when I recalled the occasions I'd got fed up, and irritable with John, because I was so tired through lack of sleep, lack of help, and lack of any meaningful conversations with John, especially towards the end of the 12 years, living with AD.

But I've mellowed a lot with myself, as I know that I did my best, and though it may not have been as good as some, or better than others, it was all I had. I still feel angry when I think of the friends and family who deserted us, and still ignore me, but most of all, I'm angry with AD, and the fickle finger of fate that decided John should have it.

 

[Quilty]

Life threw me another wobbly

I thought I was doing OK. My husband and son are away skiing this week. I was watching the end of the news about 10:40pm, when the phone rang. Late calls are rarely good news. My instinctive first thought was "I hope my Mum is OK?"

The realization that nothing bad can happen to her anymore hit me like a thump. She is gone. Will this ever sink in?

Love to all trying to live with their loss. The real world is a harsh place at the moment.

X
Quilty

 

[Mercuria]

I tend to feel that mine is safe now and out of harm's way. No more worries about care homes or hospitals, or how we will afford care for her.

But at the same time, it dawned on me yesterday, I'm never going to hear her voice again, or her laugh. There isn't anyone else now to share the silly little things of the day with or the achievements. I know she wasn't able to for most of the last two years anyway but it seems to be sinking in now. I'll carry on of course and do things for myself, life has to go on, but it seems so silent sometimes.

I'm so tired of tears and stress and upset. I feel as if this will never pass. (I mean I know rationally of course it will but it doesn't feel like it just now.)

 

[Dimelza]

Hi Quilty
I lost my dad on 26/1/16. He'd had dementia for 8+ years but was only 72. He'd lived with us until he had a massive stroke late last year which meant he needed 24 hour care and he went into a care home. He declined rapidly after this.
I'm not even sure I've grieved since he died. I feel I did my grieving before he died, I shed so many tears. Barely any since he died. I miss him so much, it hurts deep inside but no weeping and wailing.
I'm rebuilding the relationships that suffered while I cared for dad, with my husband, my young children, extended family and friends. And I'm probably keeping myself too busy but I've so much time to catch up on.
I've not collected dads ashes yet, but know what I'm doing with them. It's just not something I feel I can pop out in my lunch break to do!
People keep telling me it'll hit me months down the line, I'm just not sure there's anything to hit me. Dad was so weak before his death it was kinder to let him go than watch him suffer.

 

[Quilty]

Hi Quilty
I lost my dad on 26/1/16. He'd had dementia for 8+ years but was only 72. He'd lived with us until he had a massive stroke late last year which meant he needed 24 hour care and he went into a care home. He declined rapidly after this.
I'm not even sure I've grieved since he died. I feel I did my grieving before he died, I shed so many tears. Barely any since he died. I miss him so much, it hurts deep inside but no weeping and wailing.
I'm rebuilding the relationships that suffered while I cared for dad, with my husband, my young children, extended family and friends. And I'm probably keeping myself too busy but I've so much time to catch up on.
I've not collected dads ashes yet, but know what I'm doing with them. It's just not something I feel I can pop out in my lunch break to do!
People keep telling me it'll hit me months down the line, I'm just not sure there's anything to hit me. Dad was so weak before his death it was kinder to let him go than watch him suffer.

I know what you mean about the broken relationships. Im doing that too. With dementia its a different grief as every day was a small loss for those of us watching. We all grieve in our own way but I hope you are not avoiding your feelings. I am going to be scattering my Mum and Dads ashes together soon. Another act of closure.

 

[Onlyme]

I grieved for Mum while she was here and numb when she went. What I never expected was to have to grieve for the family I lost due to the family split. That leaves a huge hole and I can't talk to .mum about it which hurts even more.

 

[count2ten]

I grieved for Mum while she was here and numb when she went. What I never expected was to have to grieve for the family I lost due to the family split. That leaves a huge hole and I can't talk to .mum about it which hurts even more.

Agree with everything written here absolutely, just feel so so lonely and alone, no siblings to share this with and the only one who really knew all about me and I could share my history with has gone. this time last year she was still alive, not really my mother anymore and lost in her own world, but still sounded and smelled like my familiar mum. I've got a few items of her clothes and they still smell of her perfume and that familiar smell she had. But just when I thought I was starting to get through to the other side of this grieving I feel like I've taken 6 steps back and it's feeling worse than just after she went, and I don't know who I am anymore or what I'm supposed to do with the rest of my life.. We never had the best or closest of relationships but I miss my mum so much, no-one else in my life seems to be able to fill that empty hole and I don't know how to live my life like this.

And the neglected relationships, surely they must have run out of patience long ago , all the support OH and DDs gave me... they are still being supportive but they are now allowed to pick up their lives and I just can't burden them anymore with this new grief and sadness. I go through the motions, do my bit as required for my small family unit, but most of the time I really just want to crawl into a hole and forget the world. Sorry for this weeping and wailing, I'm just so full of self pity at the moment. I wish I had the answer to how we carry on without them but the wonderful supportive advice I have taken from TP is to be gentle and kind to ourselves, accept that no one will ever really know what you're feeling but take what you can from people who love and care about you. Love and hugs to everyone today xxxx

 

[Quilty]

Sorry for taking so long to reply but I am very rarely on TP now. It is no longer the comfort it was for me. I just see the pain so many others are enduring and feel it all again.

I understand how you feel about wanting to shut the world out. You need to fight this as much as you can as it wont help you. Its normal still to be feeling bad and sad. When I lost my Dad it was 18 months before I felt myself again and even then I was still very sad. You are a new version of you after all you have been through. Its going to take time but the people you love will sustain you. Everyone experiences grief in a different way. Maybe talking to those no close to you would help. Keep posting and we will keep being there for you.
X
Quilty

Agree with everything written here absolutely, just feel so so lonely and alone, no siblings to share this with and the only one who really knew all about me and I could share my history with has gone. this time last year she was still alive, not really my mother anymore and lost in her own world, but still sounded and smelled like my familiar mum. I've got a few items of her clothes and they still smell of her perfume and that familiar smell she had. But just when I thought I was starting to get through to the other side of this grieving I feel like I've taken 6 steps back and it's feeling worse than just after she went, and I don't know who I am anymore or what I'm supposed to do with the rest of my life.. We never had the best or closest of relationships but I miss my mum so much, no-one else in my life seems to be able to fill that empty hole and I don't know how to live my life like this.

And the neglected relationships, surely they must have run out of patience long ago , all the support OH and DDs gave me... they are still being supportive but they are now allowed to pick up their lives and I just can't burden them anymore with this new grief and sadness. I go through the motions, do my bit as required for my small family unit, but most of the time I really just want to crawl into a hole and forget the world. Sorry for this weeping and wailing, I'm just so full of self pity at the moment. I wish I had the answer to how we carry on without them but the wonderful supportive advice I have taken from TP is to be gentle and kind to ourselves, accept that no one will ever really know what you're feeling but take what you can from people who love and care about you. Love and hugs to everyone today xxxx

 

[Mercuria]

Agree with everything written here absolutely, just feel so so lonely and alone, no siblings to share this with and the only one who really knew all about me and I could share my history with has gone. this time last year she was still alive, not really my mother anymore and lost in her own world, but still sounded and smelled like my familiar mum. I've got a few items of her clothes and they still smell of her perfume and that familiar smell she had. But just when I thought I was starting to get through to the other side of this grieving I feel like I've taken 6 steps back and it's feeling worse than just after she went, and I don't know who I am anymore or what I'm supposed to do with the rest of my life.. We never had the best or closest of relationships but I miss my mum so much, no-one else in my life seems to be able to fill that empty hole and I don't know how to live my life like this.

Yes - oh dear. It's a month since my mother was buried and I'm now doing the house clearance. It was all right at first but now it's starting to sink in that this isn't just an extended stay in hospital, she's not away, she's gone and she isn't coming back.

And a lot of things aren't relevant any more. We tend to define ourselves in terms of other people: you're like this, I'm like that. We make an effort for those last days with someone to try to bring their past, and them, back to life a bit. All of that is laid to rest now. The mementos that were so precious, that won't be needed any more. And in clearance, dismantling someone's home and the reminders of the family life we used to have. I've now lost the last of my close relations, and there's nothing I can do about it; nothing can buy extra time or bring them back.

I try to shut off from this and step back from it but there are times when that doesn't work.

I suppose this is all natural, there are good days and bad days and time will heal it and all that. But getting through to that stage, really, is the difficult bit.

 

[Quilty]

Yes - oh dear. It's a month since my mother was buried and I'm now doing the house clearance. It was all right at first but now it's starting to sink in that this isn't just an extended stay in hospital, she's not away, she's gone and she isn't coming back.

And a lot of things aren't relevant any more. We tend to define ourselves in terms of other people: you're like this, I'm like that. We make an effort for those last days with someone to try to bring their past, and them, back to life a bit. All of that is laid to rest now. The mementos that were so precious, that won't be needed any more. And in clearance, dismantling someone's home and the reminders of the family life we used to have. I've now lost the last of my close relations, and there's nothing I can do about it; nothing can buy extra time or bring them back.

I try to shut off from this and step back from it but there are times when that doesn't work.

I suppose this is all natural, there are good days and bad days and time will heal it and all that. But getting through to that stage, really, is the difficult bit.

I had to clear my mums house before she passed as we needed to rent it out. That felt like a betrayal to me. I remember reading somewhere that when you lose someone close your old self dies with them. From the grief a new you takes charge and you start again. Thats how i feel. My new me is just born after 2 months and i cant do much yet. I will learn and grow stronger with time.

 

[Jasmine123]

I'm not sure if this thread is still running but I thought I'd add my message anyway as seems like the most suitable thread for me

My mother died on the 16th May so just over three weeks ago. She was 62 and had been diagnosed for 5.5 years. I am not sure if it has entirely hit me really. I was brushing my teeth and thought, oh I should buy my mum a new tooth brush as her current one is far from new. Then realised she wouldn't need a tooth brush ever again. I am back at work and is as if nothing has happened. I also have my friends hen party this weekend and just don't know if I am up to the enforced fun of a hen party.

Really I just want to stay at home and do nothing. At the moment it still feels like life is totally unchanged and I feel totally fine, until I see an elderly woman, her adult daughter and her grandchildren and realise that I'll never experience that and I'll never get to know my mother as an old woman.

Thanks

 

[Quilty]

Hello jasmine, losing your mum is a life changing event. The reality of it will take a very long timr to sink in. I still wonder how my mum is then remember so is gone. Only time makes it easier to live with so br kind to yourself. A hen night sounds like s big effort after your loss. Can you go for just a part of it?
My mum died March 26th so i am a few weeks ahead of you. I am starting to forget the dementia years and remembering better times. It makes me miss her even more. I am glad that het suffering is over though. You are not alone. Xx quilty

 

[Onlyme]

I'm further along than both of you but I still feel there is somewhere more important that I should be or doing. Silly things remind me of pre dementia Mum. I walk around the garden centre and see plants she grew at home. I want to tell her about them but I can't.

When Mum was ill I separated her into two - Mum and this person who looked like Mum that I visited. It was the way I coped with all the spite dementia Mum threw at me.

Now dementia Mum has gone I remember real Mum and all the silly things we talked about. She was always very strict but we understood each other and that is so hard to replace.

 

[Scarlett123]

And how proud all your Mums would be of you. Jasmine, it's very early days for you, and so painful, as your Mum was young. Is it the enforced gaiety that you're concerned about, or people asking about your Mum - or both? Why not plan to go, even if only for an hour or so, and then, if it's too much for you, invent a headache, or other minor ailment and slip away?

But if you do go, don't feel guilty if you find you're enjoying yourself, cos that's not the way your Mum would want you to feel. I wish you all well. xxx

 

[Jasmine123]

The idea of turning up for part of a hen party sounds great but unfortunately this is a weekend abroad and part of me does quite want to go (and i have already paid for the flights/hotel!). I told my friend to tell everyone who I don't know (when I'm not there) about my mum so that way I can say I'm going for a walk and go for a wander on my own without judgement. I have no plans the following weekend so will can re cooperate then.

I also am going to tell my friend at work to mention in passing to some of my colleagues who don't know about my mum so that the stress about no one knowing will be gone.

One thing I have only just realised is that this city I have only been to once and that was for a trip with just my mum and myself in my uni holidays.

Thank you for your responses Scarlett, quilty and lemony. I understand what you mean about remembering the mother prior to dementia. During the funeral, the eulogy discussed my mum liking gardening and now all these memories of my mum gardening are coming back. Despite this, which shocks me, I also miss the dementia mum who was unbelievably hard work but also really funny at times. And don't worry Lemony, whether I should or shouldn't, I don't think I really feel too much guilt when if I am enjoying myself.

 

[Onlyme]

I thought would look in and see how everyone is.

Jasmine did you go to the hen night?

 

[Quilty]

Hello only me. Nice of you to post. I started this thread. Its nearly 5 months since I lost my Mum. I still struggle with the reality of her being gone. Im deaoing with her estate and my sister is being very difficult. Its helping me be angry about something else but I will be glad when its all done.

How is everyone else?

 

[Jasmine123]

Hi,

Thanks for asking Onlyme. I am ok thanks. Went on the hen party which was ok and have been pretty busy since. My mum died two and a half months ago now and I have by and large been ok. I have only felt sad a couple of times, largely when I see old women, oddly enough. And I when I have a quiet afternoon and think it would have been nice to have gone for a coffee with my mum.

Iv also taken up the flute again, having not played since I was about 13. I thought it would be a good calming influence, in my otherwise, pretty stressful day, and so far it has been pretty calming. All things are slightly twinged with sadness tho. I can't remember how old I was when I started playing the flute, why my mum picked the flute, if I was any good or what happened to my old flute. My mum would have been the only person who might have had the smallest chance of knowing these facts.

Also my sister has organised a dinner for what would have been my mums 63rd Birthday this month, which should be a fun get together.

Quilty, I hope your sorting of the estate goes smoothly. As my dad is alive I'm assuming (and hoping) the sorting of my mums estate will be really easy

Thanks

 

[Quilty]

Im glad youre having some happy times Jasmine. I also play flute. Mine needs repaired and is on the to do lidt for this summer. I stopped playing at 21 when I left university. Im sure I would be absorbed by it again.

The estate is difficult. I have 2 sister. One is executor and I am very close to. The other one has fallen out with almost everyone, did nothing to help our mother and is being a total pain trying to lay down the law. Families!

Enjoy your party. Its sad that we can never have this again in my family.