Coping, or not..

[CWR]

I have had two close family bereavements, but in both cases, altho' I was closely related to the person, I wasn't emotionally close. But this time, with my mother, it is very very different. I was an only child, the other boy had only lived 3 days, and I was
the answer to prayer, literally. As a result, I grew up very close to mum. Dad was there, but there was a special bond between mum and me. It was good all through
our lives.
I know sometimes people can have periods of difficulty but it was never like that with mum. She would say stuff like: "Are you not well? I dont like to see you not well " or " I loved you as soon as I saw you". And, mercifully, as the dementia took hold, she still knew me, only occasionally mistaking me for my dad-like when she said " Let's have a cuddle, not make love, just a cuddle"!!! I did worry at times if she had prepared me for the big bad world out there. A close friend recently told me that when he visited, and I was upstairs, she had asked him to look after me, something I had never known before.
Anyway, the long and the short of it is that I have never really felt grief before like this. For a month or so, I just felt relief at not having to worry over mum- was she ok? Then, slowly it changed. I started to miss what we had had before the dementia. Even with the dementia, as I say, she remained loving ( mostly! a number of times she would say You only worry about yourself or You're a ****!-hero to zero in one fell swoop!), and she showed a childlikeness that drew people to her.
She was able to go to church and daycare and a lunch club, up to a month before she passed. I know I am fortunate, blessed, even, compared to others, but, in a way, this makes the grieving worse because I dont have as many negative memories to negotiate before I get to the " good stuff". Consequently, I am thinking more about how loving she was, how she would not respond to others asking her to sip this, but when I asked, she opened her mouth readily.
I was off work for 6 weeks. I am ok at work, so far, but it only takes someone to ask how I am to unexpectedly set me off. One time I am fine, the next time it's tears. I find it a case of one step forward, two steps back.If you had asked me first thing this morning how I was, I would have said :Fine. But then , in church, (mum had asked me to start going more regularly), they sang Make me a channel of your peace, and somehow the tears started.It didn't help when the minister included me in the list of people to pray for.
People asking how I am can set me off. It was like this even when I was caring. One lovely, male carer said his heart went out to me, and that started me off. I feel as if there are all these invisible tripwires which can catch me out at any moment. I am investigating having counselling ( I had counselling over a year ago after an incident at work, triggered by having to juggle my caring and my working roles). It's just the way my emotions are up down up down and with no apparent trigger ( why should I be ok 3 times when asked how I am then the 4th time I start crying?). I know it takes time, it's just the bewilderment when you think you're not too bad and then realise you still are.. Also, I am so unfocused, I have ofetn left my key in the door, and once went down the town without my wallet. i always was absent-minded, but it's reached a new level.There, I had to get that off my chest...

 

[Izzy]

@CWR I’m so glad you got that off your chest and I hope it helped a little to do so.

I think your reactions are completely normal. I know that coming up for 4 years from losing my husband I still don’t cope too well when people are nice to me. It won’t help for me to say it will take time - I know you’re aware of that. I might be a good idea to seek out counselling, I know that many other members have done so and found it useful

Perhaps you could contact CRUSE. I’ve no experience of them myself but I believe they are very helpful -

https://www.cruse.org.uk/

I posted a link about grief on another thread. I found it one of the best explanations I’ve seen. Give me a minute and I’ll find it again.,

Keep posting here. You’re among people who understand and can listen. Wishing you strength.

 

[Izzy]

Here’s that clip -

Does Grief Change Over Time?

 

[DesperateofDevon]

I have had two close family bereavements, but in both cases, altho' I was closely related to the person, I wasn't emotionally close. But this time, with my mother, it is very very different. I was an only child, the other boy had only lived 3 days, and I was
the answer to prayer, literally. As a result, I grew up very close to mum. Dad was there, but there was a special bond between mum and me. It was good all through
our lives.
I know sometimes people can have periods of difficulty but it was never like that with mum. She would say stuff like: "Are you not well? I dont like to see you not well " or " I loved you as soon as I saw you". And, mercifully, as the dementia took hold, she still knew me, only occasionally mistaking me for my dad-like when she said " Let's have a cuddle, not make love, just a cuddle"!!! I did worry at times if she had prepared me for the big bad world out there. A close friend recently told me that when he visited, and I was upstairs, she had asked him to look after me, something I had never known before.
Anyway, the long and the short of it is that I have never really felt grief before like this. For a month or so, I just felt relief at not having to worry over mum- was she ok? Then, slowly it changed. I started to miss what we had had before the dementia. Even with the dementia, as I say, she remained loving ( mostly! a number of times she would say You only worry about yourself or You're a ****!-hero to zero in one fell swoop!), and she showed a childlikeness that drew people to her.
She was able to go to church and daycare and a lunch club, up to a month before she passed. I know I am fortunate, blessed, even, compared to others, but, in a way, this makes the grieving worse because I dont have as many negative memories to negotiate before I get to the " good stuff". Consequently, I am thinking more about how loving she was, how she would not respond to others asking her to sip this, but when I asked, she opened her mouth readily.
I was off work for 6 weeks. I am ok at work, so far, but it only takes someone to ask how I am to unexpectedly set me off. One time I am fine, the next time it's tears. I find it a case of one step forward, two steps back.If you had asked me first thing this morning how I was, I would have said :Fine. But then , in church, (mum had asked me to start going more regularly), they sang Make me a channel of your peace, and somehow the tears started.It didn't help when the minister included me in the list of people to pray for.
People asking how I am can set me off. It was like this even when I was caring. One lovely, male carer said his heart went out to me, and that started me off. I feel as if there are all these invisible tripwires which can catch me out at any moment. I am investigating having counselling ( I had counselling over a year ago after an incident at work, triggered by having to juggle my caring and my working roles). It's just the way my emotions are up down up down and with no apparent trigger ( why should I be ok 3 times when asked how I am then the 4th time I start crying?). I know it takes time, it's just the bewilderment when you think you're not too bad and then realise you still are.. Also, I am so unfocused, I have ofetn left my key in the door, and once went down the town without my wallet. i always was absent-minded, but it's reached a new level.There, I had to get that off my chest...

I hope you don’t mind me replying... I just wanted you to know you are not alone in these emotions.
I can’t bear my OH to cuddle me- I feel as if my heart will break if someone is kind or affectionate
I can’t focus to work, so I have made the decision to step back for a month or more. The joy of being self employed. Purging of home environment & painting walls are very therapeutic. I actually sleep a little now.
Crowds of people are still terrifying- as is the thought of eating out.
Dog walks are undercover of darkness, & social media is off limits - bar this forum.

My life has changed so much through this dementia journey , will I ever be the same ....I don’t think so. Everyday my heart aches at what has happened & I dread how this disease will progress with Mum.

But I know I need breathing spaces &time to grieve Dad. So I’m giving myself that precious time & slowly letting my guard down that I can properly grieve.....

I truly hope my sharing my experiences might help you a little..
(((((Hugs))))

 

[Kikki21]

I would say that everyone’s journey is different. There is no set time. I for 1 do not feel like I have been allowed to grieve for my mum.
At times we were very close, others times we were not but she was still my mum.
The horrible aftermath of her death with the executor & probate has really affected me & my stress levels. I’m suffering insomnia again & really I just want this horrible period of time to end so I can move on!

 

[myss]

Keep posting here. You’re among people who understand and can listen. Wishing you strength.

So agree with this. @CWR your mum sounds like a lovely person, it's no wonder you were upset into her dementia journey and after she has passed. I hope putting your feelings into words has helped you in some way.

 

[CWR]

I hope you don’t mind me replying... I just wanted you to know you are not alone in these emotions.
I can’t bear my OH to cuddle me- I feel as if my heart will break if someone is kind or affectionate
I can’t focus to work, so I have made the decision to step back for a month or more. The joy of being self employed. Purging of home environment & painting walls are very therapeutic. I actually sleep a little now.
Crowds of people are still terrifying- as is the thought of eating out.
Dog walks are undercover of darkness, & social media is off limits - bar this forum.

My life has changed so much through this dementia journey , will I ever be the same ....I don’t think so. Everyday my heart aches at what has happened & I dread how this disease will progress with Mum.

But I know I need breathing spaces &time to grieve Dad. So I’m giving myself that precious time & slowly letting my guard down that I can properly grieve.....

I truly hope my sharing my experiences might help you a little..
(((((Hugs))))

I am finding that I am alright when I am out and about; it's when I come home that it hits me, an empty , no an emptied house, the sense of absence, not just the silence, the total absence No matter if I am ok when I'm out, it's coming home that really does it.

 

[DesperateofDevon]

I am finding that I am alright when I am out and about; it's when I come home that it hits me, an empty , no an emptied house, the sense of absence, not just the silence, the total absence No matter if I am ok when I'm out, it's coming home that really does it.

I always leave the radio on - daft as we have old dogs but it feels more lively walking in & always a couple of table lamps as it’s a friendly warm glow!
Thank goodness for led light bulbs !!!

OH works away a lot & over the past 15 years I’ve never got used to it!
So I do sympathise though my situation is vastly different
(((Hugs)))

 

[Banjomansmate]

When my husband died 18 years ago I found some of the hardest time was about a couple of months afterward once all the hassle and fuss was over. It seemed as though everybody else was able to get on with their lives while mine was completely wrecked. Of course I knew our children were grieving their Dad but it was my life that had changed so significantly. You just have to allow all your grief to come out in whatever way and whenever it hits you.
The Banjoman died early in October and there was so much going on at first and then the busy run up to Christmas that it wasn’t until early January that the reaction set in and I had a week of tears at any moment. Now, things are improving but certain songs that we performed together can set me off but equally I can listen to his recordings and watch videos and remember the good times before dementia got claws into him and be thankful for the fun and laughter.
Grief has a way of catching us unawares, sometimes years after we think we have dealt with it. It’s normal, don’t worry.
I was, and still am grateful that after my husband died I never came home to an empty house, I have two dogs (changing over the years) who greet me with pleasure and keep me company, even if we do have to go out for a walk on chilly winter days.

 

[DesperateofDevon]

When my husband died 18 years ago I found some of the hardest time was about a couple of months afterward once all the hassle and fuss was over. It seemed as though everybody else was able to get on with their lives while mine was completely wrecked. Of course I knew our children were grieving their Dad but it was my life that had changed so significantly. You just have to allow all your grief to come out in whatever way and whenever it hits you.
The Banjoman died early in October and there was so much going on at first and then the busy run up to Christmas that it wasn’t until early January that the reaction set in and I had a week of tears at any moment. Now, things are improving but certain songs that we performed together can set me off but equally I can listen to his recordings and watch videos and remember the good times before dementia got claws into him and be thankful for the fun and laughter.
Grief has a way of catching us unawares, sometimes years after we think we have dealt with it. It’s normal, don’t worry.
I was, and still am grateful that after my husband died I never came home to an empty house, I have two dogs (changing over the years) who greet me with pleasure and keep me company, even if we do have to go out for a walk on chilly winter days.

Can’t beat the furry family! xx

 

[CWR]

Can’t beat the furry family! xx

I couldnt believe at first how I was coping, and in fact felt guilty that I wasnt more emotional about it all, but over time, that has changed . Today has been particularly hard. I felt teary before going down the town, and a laughing couple in Costa didn' t help. Then, when I got home the invoice for the funeral notice finnaly came along with a further invoice from the housing association in the same week I have to pay my boiler home care. I am losing money with not getting mum's attendance allowance, etc, and worry how I will manage longer term.
Work has recently seen a " re-structure" and I dont want to work extra hours there until forced to.
I know a lot of my feelings are irrational, such as when I feel aggrieved in my work serving one of the women who were next to mum. I know she was 95 and it was her time, but I feel: Why are you still alive and well and she isnt? I used to do the same while she was alive, seeing that someone was older than mum but still compos mentis.
I did ask at work about grief counslling, but I was just sent an email with contact details for Cruse, up in Glasgow. I prefer to go somewhere local, but there is always a long waiting list for NHS services.

 

[DesperateofDevon]

I couldnt believe at first how I was coping, and in fact felt guilty that I wasnt more emotional about it all, but over time, that has changed . Today has been particularly hard. I felt teary before going down the town, and a laughing couple in Costa didn' t help. Then, when I got home the invoice for the funeral notice finnaly came along with a further invoice from the housing association in the same week I have to pay my boiler home care. I am losing money with not getting mum's attendance allowance, etc, and worry how I will manage longer term.
Work has recently seen a " re-structure" and I dont want to work extra hours there until forced to.
I know a lot of my feelings are irrational, such as when I feel aggrieved in my work serving one of the women who were next to mum. I know she was 95 and it was her time, but I feel: Why are you still alive and well and she isnt? I used to do the same while she was alive, seeing that someone was older than mum but still compos mentis.
I did ask at work about grief counslling, but I was just sent an email with contact details for Cruse, up in Glasgow. I prefer to go somewhere local, but there is always a long waiting list for NHS services.

I rang cruse helpline & blubber to the poor soul on the end of the phone - 45 minutes
The trigger - safeguarding results!

we all need something positive to come out of this painful experience - for me I’ve spoken to our MP about what aspects of social care work & the pitfalls.
I like to think of us all as a drop in the ocean that might help things change.
(((Hugs)))) & love
X

 

[CWR]

It's the irrationality of it that hits me. I know that if mum had survived,she would have got worse, that I would have lost more of her, but I feel like a child, which is really perplexing and confusing for a 62 year old adult. As I say, a lot of this is due to my having stayed at home all my life. I am going to see about counselling at the health centre. There are clearly things I need to talk over. Work was difficult this week, not helped by someone who goes to the lunch club she went to telling me how everyones missed mum, how everybody loved her. I had to tell him to change the subject. I think this is the worst thing about grief, the sense of not being in control of your feelings.

 

[CWR]

@CWR I’m so glad you got that off your chest and I hope it helped a little to do so.

I think your reactions are completely normal. I know that coming up for 4 years from losing my husband I still don’t cope too well when people are nice to me. It won’t help for me to say it will take time - I know you’re aware of that. I might be a good idea to seek out counselling, I know that many other members have done so and found it useful

Perhaps you could contact CRUSE. I’ve no experience of them myself but I believe they are very helpful -

https://www.cruse.org.uk/

I posted a link about grief on another thread. I found it one of the best explanations I’ve seen. Give me a minute and I’ll find it again.,

Keep posting here. You’re among people who understand and can listen. Wishing you strength.

I have found a website that does counselling, I will give it a go- my work no longer does grief counselling in-house, and there is a waiting list for it on the NHS.