Needing a virtual hug of reassurance

[Loz18]

Hi to everyone and thankyou to the people who welcomed me. I think I've had a light bulb moment and sussed now how to thread ?.
I've been caring for my parents for the last 2.yrs but my dad was diagnosed with alzeimers 14 months ago and my mum is diabetic and amputee. They are both 90. Have carers part of the day and I do the rest. My dad's diagnosis was a complete bombshell to us but you do whatever you can to make life OK for him/them don't you.
I however do anything and everything I can for them..... But feel so isolated. Yes my husband helps when he can but emotionally I don't get any support from anywhere. People don't really want to know do they. Not in their world so doesn't affect them.
I've always been there for anyone who needs help but now I need emotional help.... Nobody there!!!!. So this is why I've searched this Forum out and am relieved that this is available.
I've been furloughed from work since Christmas which has given me more time to help my parents...... I just Hate watching my dad deteriate.... I want my dad back.... My rock.
How do any of you get over this while it's happening. Its like grieving but they're here!! I look at pictures of him when he was younger and just feel sooooo sad.
Is this how it is for everyone? ?

 

[Cat27]

You’ve certainly found the right place for emotional support @Loz18.

I think you’ll find this thread interesting reading https://forum.alzheimers.org.uk/threads/anticipatory-grief.85774/

 

[Izzy]

I’m so glad you’re sharing here. You are amongst people who really do understand.

My husband lived with dementia for 15 years. He died coming up for 5 years ago. I do think the feelings that you describe will be familiar to many members - they are to me.

There’s such a thing as anticipatory grief - grieving for the person you are losing. I wondered if you would find the information in this fact sheet of any help. It applies to anticipatory grief just as much as grief after death.

Grief, loss and bereavement when a person has dementia

When you are close to a person with dementia, you may both go through feelings of grief and loss. Here we take a look at these feelings in more detail.

www.alzheimers.org.uk

 

[Izzy]

Great minds think alike - well - me and @Cat27! We cross posted there!

 

[Loz18]

Thankyou Cat and Izzy.
The fact that you've welcomed me has made me feel less alone so Thankyou for that. I will definitely look into the links you've suggested ?
Just nice to be in contact with others in the same boat isn't it.

 

[Cat27]

@Loz18 TP was my lifeline when I was a carer.

 

[love.dad.but..]

Virtual hug and understanding on its' speedy way! Yes many of us on here feel/have felt just as you do. I didn't find this forum until quite a way into my dad's illness progression but you will find lots of information, sympathetic support and advice if you need it. Whilst the illness is unique to each person, many experiences are common amongst carers. I think with dementia often some folk who haven't witnessed the challenges and decline first hand do not readily understand how isolating it can be for a carer and the mental and physical toll it takes and we don't like to burden others with the reality or even explain on a bad day.

 

[canary]

I think we can all understand and relate to what you have written. The isolation that comes with being a 24/7 carer, and even if you are not a "hands on carer" it can be hard finding people who understand what you are going through and then there is the grief that comes with watching the person with dementia decline. These are are things that we all have had/are having to deal with.

I have found this forum a life saver. I probably spend far too long on here, but it is one of the few places where people understand.

 

[Loz18]

Virtual hug and understanding on its' speedy way! Yes many of us on here feel/have felt just as you do. I didn't find this forum until quite a way into my dad's illness progression but you will find lots of information, sympathetic support and advice if you need it. Whilst the illness is unique to each person, many experiences are common amongst carers. I think with dementia often some folk who haven't witnessed the challenges and decline first hand do not readily understand how isolating it can be for a carer and the mental and physical toll it takes and we don't like to burden others with the reality or even explain on a bad day.

So true..... Its that age old question.... "how are you" but not really interested in your reply. So I don't divulge how its affecting me as they dont really want to know.
Sounds like I'm Grrrrrrr..... I'm not.... I'm just angry that I'm there for others but no one is for me if you know what I mean. That's why I'm so grateful that I've found this on here. Certainly makes you realise you're NOT alone.
I love my parents so much.... Sometimes I wish I lived away like my brothers so that I didn't have to deal with it all. Does that make me sound like a bad person?
On the other hand Im so lucky to still have them and be able to care for them and I would do anything for them. It's just the helplessness of it all. The look in their eyes and the constant thankyou thankyou thankyou from them. I don't want gratitude..... I'm their daughter... That's what I'm here for. Just a sad situation and as you say.... If you've never been a carer... You wouldn't understand eh. I see them everyday... But you'd think they hadn't seen me for weeks..... Such a beautiful greeting every time I go there.

 

[Loz18]

I think we can all understand and relate to what you have written. The isolation that comes with being a 24/7 carer, and even if you are not a "hands on carer" it can be hard finding people who understand what you are going through and then there is the grief that comes with watching the person with dementia decline. These are are things that we all have had/are having to deal with.

I have found this forum a life saver. I probably spend far too long on here, but it is one of the few places where people understand.

Thankyou canary.
I've been on here today looking at people's struggles. My god.... I didn't realise just how many of us are out there.
Opens your eyes doesn't it. I don't feel I have the right yet to comment on any of them but my heart goes out to each and every one x

 

[Triffid]

Big hug. I’m newish to all this too and floundering with my nose just above water and a large hunk of guilt weighing my feet down. This is a great place for getting support and information. I’m humbled by people dealing with things much worse than my situation but Some days it’s just reassuring to come here and realise it’s not just me and it’s not personal ( the universe doesn’t hate me in particular) and there are others who are also floundering along but willing to share the odd rubber ring when needed.

 

[Ellebe]

Well, it's good to see I’m not alone. But sorry to hear everyone’s stories.
It’s taken me a year and 3 social workers to get some support. Finally have vouchers for when I can go out for a day to buy in a sitter! Plus her care needs have been assessed - I’ve asked for someone to come in to get her up as it is so distressing when she won’t get up (the GP has said I need to get her up every day).
I miss my mum, but wish a good death for her and soon to end the suffering. Am I a bad person to wish that?
I think one of the things I find so difficult is that she’s here but I am so lonely. She sleeps most of the time so there’s no engagement, no conversation.
Thanks for “listening” . ?

 

[Bunpoots]

You are not a bad person @Ellebe . I know my dad wished for a swift ending once he’d been diagnosed with dementia and I respected his wishes. I’d have loved to have him back, whole and as he used to be so I understand your loneliness. We’ll always be here to “listen”

 

[Loz18]

What a terrific bunch of people on here.
We all have to go with the flow don't we..... Even though its bumpy. Good days... Bad days... It good to know we have this here to vent ourselves x?

 

[Loz18]

Can I just ask a question..... Is there anyone here who has someone with dementia that they care for.... But the person who has it doesn't know they've got it?

 

[Woo2]

Hi @Loz18 welcome from me too, so glad you have found the forum , it has kept me sane through our journey , do you mean have they not been told that have it ? Mum had the diagnosis but even back then I’m not sure she actually took it on board and if she did she has most definitely forgotten now , we do not remind her ,in fact the D word is never ever mentioned ! I understand your feelings , I have been a sounding board, agony aunt and the proverbial shoulder and ear for friends /family but now not one of them asks me how I am ,haven’t seen them since Mum moved in with me , they do not want to know , my mums oldest friend is the onIy one who actually asks how I am first and is genuinely interested .I have great support from members on here and that means a lot . Take care of yourself.

 

[Thethirdmrsc]

Hi @Loz18 i care for my husband who was diagnosed 4 yrs ago. It’s a hard disease isn’t it? I have also been furloughed from my wee job since before Christmas and won’t be going back as my OH can’t cope now on his own. One of my husbands sons and 3 grandchildren live 3 mins away, but hardly see him, so I get no help there. I am currently selling our house to move 35 miles to where my daughters live. That’s hard, but I’m ploughing on. Yes it is like grieving, but a whole heap of other stuff that you never imagine. Have you ever watched 50 first dates with Adam Sandler and Drew Barrymore? I liken my husband to a character in the film called “10 second Ted” that’s his now span of attention! Got to laugh sometimes.

 

[Loz18]

I asked about people not knowing the have it because...... My dad is a born worrier.... He also has prostate cancer and won't acknowledge that. At the time of diagnosis of dementia..... We as a family felt it best that he didn't know as he definitely wouldn't have been able to cope with that knowledge. Being oblivious seems to have helped him as he knows he has a memory problem and has accepted that. So as with many that I've read on here today the D word is not mentioned in their household. Makes me feel EXTREMELY guilty but as I was told today by the assessors.... We are doing what's right by him with his best interests at heart.
Still makes me feel awful. But he seems happy enough without that worry. Knowing my dad I know that he would give up if he knew..... And i/we don't want that. He has always been a very organised man in work and life. Everything in neat piles. And still got neat piles.... Even if its only squares of toilet paper on his side table... Perfectly neat n tidy. X

 

[canary]

Can I just ask a question..... Is there anyone here who has someone with dementia that they care for.... But the person who has it doesn't know they've got it?

Most people with dementia are unaware that they have it, dont believe that they do, or think that it doesnt affect them despite agreeing that this is what they have. There is a little talked about, but very common symptom of dementia called anosognosia - which means that you are literally unable to comprehend that you have something wrong you (because the part of your brain that deals with self awareness is damaged). My mum was typical in that respect. She would admit that her memory "wasnt what it used to be" but couldnt comprehend that there was anything wrong. later on she used to tell me that she she was as fit as a fiddle and didnt have anything wrong with her at all, despite having Alzheimers, heart failure, atrial fibrillation, arthritis, glaucoma...........
My OH, on the other hand will admit that he has problems with his hearing, balance, etc, but doesnt believe that it affects him. When he was recently in hospital he was asked whether he had problems with mobility or with washing and dressing and he stoutly denied it all. In reality he has a zimmer frame and a rollator and has carers come to help him wash and dress.

 

[Loz18]

It's a mental mine field isn't it Canary.
Dad's fixations are toilet and things at the bottom of his bed. Takes forever to pacify him.... And even then it really doesn't sink in. It's the repetitive trying to reassure him which I find difficult. Like I'm not doing a good enough job of putting his mind at rest. I guess this is all part of it?
He has carers 4 times a day and I fill in in between..... So he's always worried about whose coming for the next visit. Constantly looking at the clock.... How long now til they come...
Sad isn't it. X