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Feeling invisible and need to chat!

JackieJuice

New member
May 21, 2020
2
59
Wibsey
Hi, I am finding the fact that revently I don't get a response from mum when I'm talking to her upsetting even though I know it's mum's illness and her that doesn't respond. Mum has always been the one I could talk to, sit and watch TV with, offload to, share the washing up with infact all the simple every day interacting you do that now I know I took for granted, but am missing immensely now. Mum had me when she was 17 years old, she is now 76 with Alzheimer's, so we have always been close, open, honest and supportive of each other similar to close sisters and/or best friends would. How on earth do I learn to live with mum being there physically, but unable to acknowledge me, my feelings or even say good morning or good night....it hurts, I have lost not only my mum but my confident, my best friend, my "Goggleboxer". I am no longer thought of in any way shape or form, I know I sound selfish but believe me I'm not, I just can't get my head around losing what I need as a human being by way of company or how to cope with it. I'm immensely lonely and sad for both mum and myself
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,079
69
Dundee
Hi there and welcome to the forum.

There’s no way you are sounding selfish - you are far from that!

Your post is so poignant and I can understand how much this all must hurt. I’m so glad you have found this forum. It’s the right place to come to chat - there is always someone around her to listen, understand and support.

Wishing you strength.
 

karaokePete

Registered User
Jul 23, 2017
5,510
N Ireland
Hello @JackieJuice and welcome from me too.

Caring can be a lonely place. I care for my wife who was in her early 60's when diagnosed. The loss of sharing experiences does hit home at times and I just keep myself busy to prevent overthinking that loss.

As has been said, you are now in the right place to offload - at any time of day or night.

I hope you don't object to a virtual (((HUG)))
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,525
Nottinghamshire
Welcome from me too @JackieJuice

I recognise your feelings as I’ve felt the same about my parents and my aunt who were always there for me until Dementia took them away. I’ve no words of wisdom. It does hurt beyond belief. I coped by seeing them as new people who I had to build a relationship with.
Trouble was I always wanted to ask their advice...
 

father ted

Registered User
Aug 16, 2010
713
London
Hello JackieJuice,

You are not selfish at all. You are so lucky to have had a good relationship with your Mum and now that you feel challenged, lonely, invisible and unloved who else would you want to talk it over with than your Mum? Such a sad situation but one that so many share. You will find plenty of people on here who will be good listeners and share your feelings.
 

jennifer1967

Registered User
Mar 15, 2020
287
hello and welcome jackiejuice i can understand what your feeling my husband is my best friend. i dont have anything to do with my sister or father and hes been there. hes going slowly and cant give me the support or understanding he used to be able to. its like a grieving process that im grieving for the person he was but grateful i still have him
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
Hi, I am finding the fact that revently I don't get a response from mum when I'm talking to her upsetting even though I know it's mum's illness and her that doesn't respond. Mum has always been the one I could talk to, sit and watch TV with, offload to, share the washing up with infact all the simple every day interacting you do that now I know I took for granted, but am missing immensely now. Mum had me when she was 17 years old, she is now 76 with Alzheimer's, so we have always been close, open, honest and supportive of each other similar to close sisters and/or best friends would. How on earth do I learn to live with mum being there physically, but unable to acknowledge me, my feelings or even say good morning or good night....it hurts, I have lost not only my mum but my confident, my best friend, my "Goggleboxer". I am no longer thought of in any way shape or form, I know I sound selfish but believe me I'm not, I just can't get my head around losing what I need as a human being by way of company or how to cope with it. I'm immensely lonely and sad for both mum and myself
Hello

Me too I'm missing mums friendship very much. Your not being selfish, how can a lifelong friendship come to end without feeling lost or lonely ? Its a defining moment in our lives and I can categorically say I hate it, but all we can do is go with it and try to hang on to what is left. My GP once said that in dementia we grieve twice, I think thats certainly true as the whole that was filled by someones loving prescence grows bigger, we too become lost in the emptyness left behind. Wishing you better days in what is a difficult adjustment to make.
 

JackieJuice

New member
May 21, 2020
2
59
Wibsey
Hi all, thank you so much for your empathic replies (and apologies for the typos and grammatical errors.......this time I'll proof read before posting ha!).

Apologies for not replying sooner, to be honest I've found navigating my way around here a little confusing and at times I've just given up trying to find out if I had had any replies....for goodness sake, I'm such a daft at times. Anyhow, this morning I persevered to find out what a lovely lot you are. THANK YOU for taking the time to tell me your feelings, I've received more understanding, empathy and kindness from you lovely peeps on here than I've had for such a long time. I'm lucky really, I receive a weekly phone call from a member of the Community Mental Health Team to check up on us, and mum's meds are delivered weekly too, I also have our shopping delivered so how can I complain? I don't, not about that part of our life, I'm more than grateful actually because these people are protecting mum from the possibility of catching Covid19! However, the isolation is crippling! As I'm sure you all know from experiencing lockdown yourselves. I'm sat in the garden now, wrapped in a fleece dressing gown, covered by a fleece blanket with one pooch on my knee and the other sat in his doggy bed at my side, heaven! The birds are tweeting and singing, there's a gentle breeze filling me with deep breaths of fresh air and sounds of life from surrounding neighbours adding to the joy of today BUT mum's sat in her sitting room watching her TV and all the while I'm listening out for her as I've always done and it's wearing me out. There isn't an hour that goes by that my mind rests as it's on alert all the time. She'd never eat and never move if I didn't keep popping my head around her door to motivate her. I've come to instinctively read her moods, pain threshold and so much more to the detriment of my own sanity at times, which, I'm told is typical behaviour of a carer! Of course, I will do this until the time comes when I'm no longer needed but..........I want to just hibernate under my quilt and not think, not move, not clean, not cook, not anything! Yes, I'm depressed and have medication to support my depression but where do I get my hug from? Where do I get that tlc and "there there" from? I know what I'm going through is par for the course, I know how to deal with my depression, I don't need a pep talk, I just need a decent conversation and a good cry about everything and nothing! I'm in the garden attempting to read a book entitled
"Reasons To Stay Alive", author Matt Haig as I sent a copy to my sister recently after she attempted suicide for the 4th time. I feel (even though I'm not, and never have been, suicidal) it will help knock me in to shape and remind me how lucky I am.......BUT I know I'll want to talk about it and how it affects me with someone because that's me, I love a good debate and chat, so I'm hesitating to start because I haven't anyone to share it with. I would love to discuss it with my sister but there are issues that she still needs to work on that stop her communicating with me. I won't even get a SMS from her about this book or about the welfare of our mum or anything! I'm saddened to think that I, her big sister, am the last person she'd contact about anything. Anyhow, I'd better finish my essay (oooops, sorry peeps, this is a long one lol), as I've got cramp in my fingers from holding my phone for so long. Once again, thank to you all for your replies to my first post and please take care, stay safe and I send you all a warm hug.
 

jennifer1967

Registered User
Mar 15, 2020
287
hello jackiejuice its hard in lockdown caring for your mum and having depression. and your sister as well no wonder you want to talk. i look after my husband with vasc. dementia and have clinical depression and tablets. its hard going and to know my limits. my support network was lost due to the lockdown . i was even coming off my tablets slowly which had to be stopped. you are never off duty. my husband has it mildly but im still alert to his needs.we will all get through it one way or another and look forward to having the support network back and hugs.keep going we are nearly there
 

Whisperer

Registered User
Mar 27, 2017
147
Hampshire
Hello

Please can you post how the book goes? Not depressed but I look at the future sometimes and wonder what is it all about. One day my caring role will end, I will most likely still be young Ish (no laughing at the back of the room), most likely want to try a different location having been in the same town all of my life. Caring limits your horizons, plans, aspirations, you are always attempting different variations of the game how long is a piece of string. Mum still talks but it is all about the distant past, the present and the future are now matters which are not retained in her mental capacity as it is. Lockdown can be crushingly isolating at times. You just get moments where it hits you, god how long since I had a meaningful conversation with anyone beyond the kettle, cooker, etc, who listen to my motivational self chats every day but are determined to keep their opinions to themselves. Well at least I still have my sense of humour. Best wishes for the future.
 

LHS

Registered User
Oct 5, 2018
67
Hi i just read your post and the replies. I find myself in a similar situation with my mum. she is obviously my mum and yet at the same time this disease has changed her personality and behaviour so much that it sometimes feels like she is just a person who i happen to care for.

There are still occasional glimmers of my real mum but most of the time I am constantly having to watch what I say or do, so that mum doesnt kick off at something. I find myself often distancing my emotions and then feel guilty for doing so. I did get very upset at mums condition at the start but it doesnt achieve anything so now I focus on the practical side of things 95% of the time.

I dont think there is a right or wrong way for family carers to behave or feel apart from trying to understand how the disease affects their loved one and just doing their best to support their relative and look after yourself. I picked up a lot of practical tips and moral support from this blog when my mums journey started which helped massively.
 

Sarasa

Registered User
Apr 13, 2018
1,395
Hi @JackieJuice and @LHS, I know how you feel. My mum was always a friend, not always someone I agreed with and she could/can drive me up the wall but we had fun going out shopping or to the theatre and she could always make me laugh. We loved discussing books films and politics. Gradually over the last ten years or so that has all gone, and she now doesn't make a great deal of sense.
I miss going to see her in her care home, something I'd never thought I'd say this time last year.
 

Jude48

New member
May 21, 2020
5
Hi @JackieJuice and @LHS, I know how you feel. My mum was always a friend, not always someone I agreed with and she could/can drive me up the wall but we had fun going out shopping or to the theatre and she could always make me laugh. We loved discussing books films and politics. Gradually over the last ten years or so that has all gone, and she now doesn't make a great deal of sense.
I miss going to see her in her care home, something I'd never thought I'd say this time last year.
hello and welcome jackiejuice i can understand what your feeling my husband is my best friend. i dont have anything to do with my sister or father and hes been there. hes going slowly and cant give me the support or understanding he used to be able to. its like a grieving process that im grieving for the person he was but grateful i still have him
Hi like jackiejuice I have found getting round this site difficult I seem to find myself in a different place every timE so have not posted before.. I have been desperate at times thinking I was selfish cruel unkind and nasty to my husband of 48 years . Every day is hell.he can do nothing useful I do everything and then pick up the pieces that he has made of any thing he tries to do making twice the work for me. we can’t converse share experiences or memories and all I am is a slave. There is no emotion Shown just some bad temperwhen he disagrees with something
People say stay calm just ignore things don’t get cross or emotional they know nothing and when they say aw bless that sends the blood pressure sky high. Every thing I have read on the site people see to be positive and this makes me feel even worse..How do you cope cos I feel like packing y bag and leaving
 

Kazzer29

Registered User
Jun 23, 2017
2
Hi, I am finding the fact that revently I don't get a response from mum when I'm talking to her upsetting even though I know it's mum's illness and her that doesn't respond. Mum has always been the one I could talk to, sit and watch TV with, offload to, share the washing up with infact all the simple every day interacting you do that now I know I took for granted, but am missing immensely now. Mum had me when she was 17 years old, she is now 76 with Alzheimer's, so we have always been close, open, honest and supportive of each other similar to close sisters and/or best friends would. How on earth do I learn to live with mum being there physically, but unable to acknowledge me, my feelings or even say good morning or good night....it hurts, I have lost not only my mum but my confident, my best friend, my "Goggleboxer". I am no longer thought of in any way shape or form, I know I sound selfish but believe me I'm not, I just can't get my head around losing what I need as a human being by way of company or how to cope with it. I'm immensely lonely and sad for both mum and myself
Totally understand I saw mum today and left her feeling guilt/sad I too miss my mum she is lovely and easy to be with but I feel I can’t have a normal chat with MY MUM
Sending you love xx
 

Just me

Registered User
Nov 17, 2013
237
Hi like jackiejuice I have found getting round this site difficult I seem to find myself in a different place every timE so have not posted before.. I have been desperate at times thinking I was selfish cruel unkind and nasty to my husband of 48 years . Every day is hell.he can do nothing useful I do everything and then pick up the pieces that he has made of any thing he tries to do making twice the work for me. we can’t converse share experiences or memories and all I am is a slave. There is no emotion Shown just some bad temperwhen he disagrees with something
People say stay calm just ignore things don’t get cross or emotional they know nothing and when they say aw bless that sends the blood pressure sky high. Every thing I have read on the site people see to be positive and this makes me feel even worse..How do you cope cos I feel like packing y bag and leaving
I can go from being positive to wanting to run away several times in the same day, same hour... and depending what’s happening will reflect what I say, so please don’t put pressure on yourself feeling everyone is positive all the time.

I feel I’m in the film Groundhog Day most days.

Some people with dementia become very self centred and just don’t see anything other than their point of view. Thats the nature of the disease and nothing you can do will change it.

How do I cope? Badly a lot of the time, especially since lockdown.

When I get time I’ll message a friend or come on here but I often feel like getting in the car, driving off and not stopping.

The next moment I get an overwhelming feeling of love and sadness for what this horrible disease has done to mum.
 

Jude48

New member
May 21, 2020
5
Thank you for that I really feel better as I was thinking that I was becoming the only one who couldn’t cope. Sometimes he only has to breath for me to lose it.i can’t really accept that he can’t help what he is doing. There is a great deal of literature about help but very little actual practical help unless you pay
The lock down is hell but I am worried about getting out again because if I get
 

Jude48

New member
May 21, 2020
5
The virus what happens to him
I do not think the general medical professionals have any idea of the suffering of the Carers it seem to me that offering pills is their remedy or getting some nice person to ring every so often to chat. It’s 7 .18 and I sit here in bed looking forward to a another day in hell
 

canary

Registered User
Feb 25, 2014
12,614
South coast
very little actual practical help unless you pay
Yes, Im afraid that is the nature of the system. If you have savings then you pay for most things.
I have bitten the bullet and now have carers in to help OH wash/shower and dress in the morning. I didnt think it made much difference, but I have noticed that when thy dont come (bank holidays for example) Im starting to lose it by the time they next come.
 

Jude48

New member
May 21, 2020
5
Just hearing you say that lifts me a bit because I know I’m not the only one who loses it. Thank you
 

bramas

Registered User
Aug 4, 2015
1
Hi, I am finding the fact that revently I don't get a response from mum when I'm talking to her upsetting even though I know it's mum's illness and her that doesn't respond. Mum has always been the one I could talk to, sit and watch TV with, offload to, share the washing up with infact all the simple every day interacting you do that now I know I took for granted, but am missing immensely now. Mum had me when she was 17 years old, she is now 76 with Alzheimer's, so we have always been close, open, honest and supportive of each other similar to close sisters and/or best friends would. How on earth do I learn to live with mum being there physically, but unable to acknowledge me, my feelings or even say good morning or good night....it hurts, I have lost not only my mum but my confident, my best friend, my "Goggleboxer". I am no longer thought of in any way shape or form, I know I sound selfish but believe me I'm not, I just can't get my head around losing what I need as a human being by way of company or how to cope with it. I'm immensely lonely and sad for both mum and myself
I know how you feel...and it is very frustrating. I had that problem with my husband, who gradually faded away as my companion before he died. Trouble is, I did not realize that he might have dementia. When I would speak to him, he would simply remain silent. Then I would ask him why he did not respond. He would then say: "What do you want me to say", I would then tell him; "If I have to tell you what to say, I might as well talk to myself". This dialogue repeated itself indefinitely, until I realized things were not going to change, and I had to find other people to talk to. Not very satisfying though. So I buried myself in books. Still do. Sorry I could not offer you a better outlook. Facing the reality of the situation helped me to feel less frustration. I do hope you find something that helps you.