how do you handle not being recognised ?

[brightonboy]

Hi all. For the 1st time my dad asked me if I was one of his sons today. When I replied I was his middle son he smiled and said "of course" but didn't look convinced. I've gotten used to him calling me every other name (boys and girls) you could think of, but this really knocked me for 6 today.
My dad was diagnosed with mild dementia 5 years ago, but the last 6 months has seen him decline rapidly. He can't string a sentence together, but pulling out key words from his mumbles makes sense for me. It's like having a conversation in "crossword" language. He tries -slowly- to give me the clue - i fill in the missing words.
He sees children in his bungalow...... lots of them. He has to tell them to go "otherwise they'll bring their friends and it'd be too crowded". He also sees "the nice people from the BBC" walking around every morning drinking his tea, but he doeasn't have to ask them to leave as they go politely ! I see him talking to the TV - Sharn and Bill from BBC breakfast and replying to their "good morning" and "welcome" lines. I'm guessing he's thinking they're actually there in the room. It was strange to watch first..... and still is. It doesn't seem to be harming him so I don't intervene.
I did have to remove the mirrors today though. He kept getting alarmed that "people" were looking through his windows (ie his reflection in the mirrors)he got aggitated and would sometimes tell them/himself to clear off. Every time we walked past one today, he would stop and ask if I could see the people staring at us and what they want. The thought of people looking in would worry me (currently sane) at the best of times, so I decided he could do without that extra worry.
I've spent the whole day crying on and off, not about his times of confusion, but about his short moments of clarity, his short moments of realisation and how scared and fragile he's become.
I watched my mum die of ovarian cancer aged 49, 10 years ago over the course of a few weeks. I'm not sure i've the strength to watch my dad go over such a long period.
Reading these pages always brings me to tears, but I have to know how others manage. Thanks in advance. x

 

[Taffy]

Hi and welcome to TP,

I can identify with your post. Dementia is such a miserable disease. I found the best way for me to manage was just to accept and look after mum the best I could. Mum was never bothered by her reflection, of course, it wasn't her. She would ask the lady in for a cuppa and try coaxing her , but, it never upset her. Another carer I know couldn't have a mirror in the house because his wife became very distressed.

It's all trial and error what works for one doesn't always work well for another. Mum didn't really have any idea who I was either, but she was comfortable having me around most times, she did have her moments.

For me the cruelness of this disease really hit after mum passed away, it was then that I had the time to really reflect the cruelness of this disease.

Caring Thoughts,

 

[Brucie]

how do you handle not being recognised ?

I think about something that is sometimes quoted - "you no longer know me, but I know you so well"

It is very difficult but you get to a stage where it is enough if our loved one simply can relax a bit when we are there.... even when - as will happen tomorrow for us - it is our 41st wedding anniversary.

 

[Helen33]

Morning Brightonboy

I find I have to block off the emotional pain when I get that feeling sometimes that my husband doesn't know the relationship that we have. He can never use the right words like my name or 'wife' but sometimes it really hurts being faced with the fact that I am really now a 'carer' to him without any special relationship. I think my husband goes in and out of knowing.

The thing that is just about constant is that my husband does not recognise himself!! I monitor and manage symptoms of paranoia in order to try to prevent him needing medication. I discovered that the triggers for my husband were being in a room on his own with the radio on. My husband lost the ability to work out that there were not people in the room talking Another trigger is the tv but only particular types of programme. Any type of programme where the people on the tv talk to the general public like Paul O'Grady show, interviews as in news, Match of the Day when the commentators are discussing issues and X Factor where the cameramen/women use close ups of the judges and it seems the judges are talking to the general public. All these types of programme cause paranoid like symptoms and the solution was either to medicate with anti psychotic drugs or to manage the problem as much as possible. So far monitoring and managing the problems is working very well.

I have also heard people talk about the ones they care for with lewy body dementia which can cause something similar and whenever I am not sure, I ask for advice from the professionals.

I wish I knew of a way to bypass the pain of our loved ones recognising us but I suppose Bruce has a very good point in the fact that I recognise him as a whole person (with a past, present and future) and no matter how bad it gets in the present and future, I am testament to the fact that this person who is so ill, is still a whole person with a past and not just an ill person in the present and is going to get iller in the future.

Wishing you well Brightonboy

 

[Brucie]

I am testament to the fact that this person who is so ill, is still a whole person with a past and not just an ill person in the present and is going to get iller in the future

beautifully put!

 

[sad nell]

i so agree, i find it very important that people see trev as the man he was but also as the man he is, my hallway walls are covered with pictures of trev past and present and strangers are always shocked by them , but iwant people to see the man he was and is pam

 

[CraigC]

Hi Brighton boy and welcome.

If I'm honest, I just try not to think about it too much.
Often when I tell people that dad has Alzheimer's the first thing that they ask is

"Does he still recognise you"

When I say "no" they say

"that must be awful" or such like. Now that upsets me so I can't avoid thinking about it.

Not a very good answer sorry, but just to say I do find it difficult. But not that important as time goes on.

Dad still takes a lot in and gives the odd smile and knowing look. I was speaking to one of his carers and he said most of the residents in dad's home still listen a lot and react if you are patient. So we cannot be sure that dad is not recognising our voices, scents, touches and aura's. He just doesn't react in the traditional way.

I sometimes dream of dad suddenly talking to us; nice dreams that make me try to stay in my deep sleep when the sun comes up.

Hopefully more help than a chocolate tea pot.
Kind Regards
Craig

 

[Grannie G]

Hello brightonboy

There are two kinds of lack of recognition for me. One is a simple lack of recognition which I can accept as part of the condition. The other is seeing me as a threat which I find very difficult.
Fortunately, both forms are temporary and , at this stage, my husband always comes back to me.
How I will feel when his lack of recognition is permanent I don`t know. I do know I would not be able to live with him seeing me permanently as a threat.

 

[scarletpauline]

My neighbour's sister had Alzheimers Disease, she was "out of it" most of the time but she knew we were there, we could tell cos she sort of smiles and squeezed our hands. I do think that many sufferers of AD can still recognise their loved ones. Love Pauline xx

 

[Mameeskye]

I think that it is possible that someone may forget your name, and your relationship, but they may still feel calmed by your presence because your voice, your scent etc. is familiar and that they just like company.

It is hard for us who can remember, but if the one we visit is loved by us, we can be there for them and share our memories of times gone by. They may not recognise themselves in the stories, but sometimes the sound of our talking is all that is required.

It isn't easy.

((((hugs)))))

Mameeskye

 

[connie]

I sometimes dream of dad suddenly talking to us; nice dreams that make me try to stay in my deep sleep when the sun comes up.

Craig, I can so identify with that.

Some visits Lionel does not show any signs at all or recognition.
Good days, never a smile, but sometimes a gentle 'lighting' in his eyes.

He knows my voice still. He forgot who I was a couple of years ago. However on one occasion, when he still had speech, he asked me out on a date. Not sure what any of this means.........such a cruel disease.

 

[Daftbat]

However on one occasion, when he still had speech, he asked me out on a date. Not sure what any of this means.........such a cruel disease.

Connie, think that means he at least has the joy (and good taste!) of falling for you twice in one lifetime.

Jane x

 

[Canadian Joanne]

My mother hasn't known who I am for a couple of years now, I think. She only has a few words of vocabulary so it's hard to tell. But I think she recognizes my face and voice and I am familiar to her. She smiles and laughs with me.

 

[Trying my best]

This has to be one of the most difficult things to come to terms with as a carer, possibly even moreso if you'd always been incredibly close before the illness. It broke my heart when I once told my mum I was her little girl and she snapped, angrily "no you're NOT!"

But in our case recognition, at least of some sort, comes and goes. Although she doesn't know my name or recognise me as her daughter, I do believe that my mum knows me in some way. She doesn't know any of the details of our relationship but she does know that I am special to her. Her face changes when she sees me and she responds very differently to my sister and I than she does to her other carers.

When my stepsister came to visit earlier this year, she couldn't express anything about who my stepsister was, but somehow reacted to her in a way that she could not possibly have reacted to anyone else. She started using words that she hadn't uttered for years and defintiely enjoyed seeing her.

In my opinion, you just have to concentrate on these little flickers of recognition, and know that if it weren't for the maze that your loved one's mind has become, they would be able to find and express their love for you easily.

 

[Nan2seven]

Hello, brightonboy

At the beginning, I found this very difficult to cope with, deeply upsetting. But for my husband it was a temporary thing, maybe lasting for a couple of hours, sometimes less. It still happens but I am less fazed by it than I was. This morning there was a slightly new development, in that he spoke of his wife being upstairs, and I casually asked him who he thought I was. He gave me my Christian name and our surname, but still spoke of his wife as being upstairs and quite possibly wanting to go out with us when we left the house a bit later. He looked at me and said, just to confirm, in case I had any doubts, "You are not my wife." I am not clear who he thinks I am at such times, but we seem to get along okay. And that, in the end, is what matters, I suppose. Love, Nan XXX

 

[Grannie G]

He gave me my Christian name and our surname, but still spoke of his wife as being upstairs

This is just what happens here only Dhiren says his wife is at his real home.

 

[Carolynlott]

Hi. For me it is harder coping with my Mum, who still knows who I am, than my Dad, who doesn't. For a long time before he went into care, Dad thought I was one of my children. He would ask me how my cricket was going, and give me some money and say "don't tell your Dad". I put this down to the fact that he had forgotten me as a grown up. He was OK with my husband, who he had only ever known as a grown up. When he went into care, there was at first still some recognition - at least he knew I was someone familiar. Then he would ask where Carolyn was. For a long time now there has been no recognition at all, in fact it is quite hard to even get his attention. I can handle this - I am used to it. It helps me to focus on the fact that this isn't my Dad any more, it's someone who used to be but is now severely ill.

My Mum, on the other hand still knows exactly who I am and when I see her cries and sobs, tells me how much she loves me, asks when she is going home, and basically wants me with her all the time. This is what is so hard to cope with and she is draining the life out of me. She (almost) dupes me into believing that she could cope really, if only I would take her home, because she looks like she always did and it is hard for me to keep refusing her what she wants. In some perverse way I feel better when the staff tell me of the not too pleasant things that have happened and I go away thinking and telling myself ... well, you see, she couldn't cope. I am kind of looking forward to her not knowing me. I think it will be easier to cope with. Who knows.

 

[Grannie G]

I think it will be easier to cope with.

I think it might, Carolyn. xx