Heartbreaking visit

[Brumsteve]

So, I've come back from my weekly visit to see my mother. Since her diagnosis in February she has gone from a still active 86 year young lady still living at home with a little help and carers going in to a frail old lady in a residential home hardly able to walk and unable to have a conversation. Eating about as much as a sparrow would and sleeping.

Today's visit was the hardest one so far. When I woke her up from from her slumber I was greeted with 'Who is that?' 'I'm your son' I had to say. This cruel heartless disease seems to have nearly taken my mother away from me. The day I have regretted coming but on the other hand have been waiting for. This disease isn't progressing slowly moving from a gentle trot to a canter. I know there are good days and bad days and perhaps she will recognise me next time I visit but the first time is such a shock to the system.

 

[Palerider]

I have removed my original comment.

 

[marionq]

Occasionally my husband doesn’t know me then half an hour later does. You need to give them time for their brain to engage I think. She knew you and loved you when well that’s what matters.

 

[karaokePete]

My wife hasn't know who I am on a couple of occasions and gives others my name and me the name of others from time to time.

The first time it happened to me I was almost grief stricken but I'm now used to it and, thus far, it hasn't been a permanent thing.

I think the fact that this happened when your mother was waking is most pertinent. My wife is at her most confused when waking from sleep. As Marionq suggests, it takes a while for the brain to engage.

I hope things settle for you.

 

[Moggymad]

Happened to me recently for the first time & it left me feeling very strange. I have thought for some time that mum confuses me with the staff in the care home & at times her reaction to me is no different to them. However there are days when I know she knows me. Even though she can't remember my name I see the recognition in her eyes. Her eyes linger longer on my face when she's looking round.
Look for other signs of recognition. It may not be the same every visit or even throughout the time you are with her. It is a shock though the first time it happens.

 

[canary]

Sometimes mum didnt know who I was, but not very often. Mostly, she knew who I was, even if she couldnt always remember my name and family relationships were a bit tricky.........

@Brumsteve - I think its likely that the problems was that it took a bit of time to wake up and to get her brain in gear, as karaokePete said

 

[Brumsteve]

Thanks for all your replies. I know this is something that can happen and it's something I have tried to prepare myself for but, as most of you have no doubt found, it is hard when it happens for the first time.

I will keep hopeful that she will still recognise me even if it's only from time to time for a while yet.

 

[Jale]

Mum doesn't always know me, she very often tells people she only has one child - her son - who does everything for her. I was hurt the first few times I heard this (probably still am if I'm honest) but I try to ignore it - it's not my mum speaking but this awful illness.

 

[Sarasa]

Mum always tells everyone else in the home I'm her daughter, but when she's talking with me she's asked me twice how my mum is. I think she sometimes thinks I'm her.
Years ago long before she had dementia I met two people on two very different occasions who told me that they didn't know my mum had a daughter as she only talked about her son. She seems to have forgotten my brother for the most part now which is a mixed blessing. A good thing as he is seriously ill and can't get out of bed, let alone visit her, but so sad as well.
Mum gets very muddled about who people are when we talk about them, but she knows that they are important to her when she sees them. @Brumsteve, I'm sure your mum knows you are special to her, even if she can't quite place you when she wakes up.

 

[Jo108]

So, I've come back from my weekly visit to see my mother. Since her diagnosis in February she has gone from a still active 86 year young lady still living at home with a little help and carers going in to a frail old lady in a residential home hardly able to walk and unable to have a conversation. Eating about as much as a sparrow would and sleeping.

Today's visit was the hardest one so far. When I woke her up from from her slumber I was greeted with 'Who is that?' 'I'm your son' I had to say. This cruel heartless disease seems to have nearly taken my mother away from me. The day I have regretted coming but on the other hand have been waiting for. This disease isn't progressing slowly moving from a gentle trot to a canter. I know there are good days and bad days and perhaps she will recognise me next time I visit but the first time is such a shock to the system.

Hi
This is heartbreaking, as much as you prepare for this day to come when it does reality of this sad disease becomes so real. I have felt like I knew trying to be a step ahead so as the inevitable happens it’s not like I’ve been hit by a bus! It’s like I have grieved for my dad not knowing me but grieve all over again when he says those words. For me, I have two children 13 & 17 my dad has not known who Sophie is for sometime. But remembers Jamie as a little boy.
Try to hold hands let her feel your face, it’s so so sad but somewhere inside her heart she feels love
Best of luck and hugs x

 

[Whisperer]

I thought I would be ready for when this first happened to me but you never can be. For me it just came out of the blue. Sat watching television together and I became aware mum was looking at me. “I know you are watching this but can I ask you a question? Of course mum what is it? What is your name? I know you are my son but which one?”

Like a bucket of cold water over me. I answered and mum went back to watching television without any upset. Just like asking for the salt. That made it more disturbing.

Definitely agree confusion can be worse when coming awake. I have been my dad and grandad in those moments at times. Giving mum her medications I just sit quietly, answering any questions and letting mum get grounded in the world. Slowly, slowly on bad days.


Always remember two things
1) It is the illness talking.
2) It may feel bad for you but consider how it must be for the PWD. Who is that person in my bedroom or watching television with me. No wonder it might lead to comments about going home and the need to find a reassuring environment.
Never take it personally. It is another sign of just how much your care and support is needed. It hurts, it cuts inside, but it does not destroy a relationship. You just have to take on more of the effort to maintain it. Your reaction to it, how you process your emotions after the event, is crucial to your well being. I sometimes think this is harder for those not involved in the day to day caring. They might not see the PWD for months then face this whilst trying to process all the other smaller changes, you have gradually included in your day.

Please continue to visit. One responder here called Canary once said that part of the loved one is there even in the darkest moments. It hides but is still present. My mum is nowhere near that stage but now stumbles on long term memories, which were clear a short time ago. I say a few words, a hint and out it tumbles all present and correct. Similarly with faces at a later stage, on a perhaps regular basis. The sound of a voice may make a connection in the first instance apparently broken. When all else fails we still have our memories of the loved one to sustain us. They made our lives better, we should reach for those memories in darker moments.

Best wishes for the future

 

[JoannePat]

This happened to me last week. It was so upsetting, even though I knew it was coming. Mum doesn't even look at my husband, so god knows who she thinks he is! My dad sits and holds her hand and sometimes she smiles, but not very often.

She never uses our names and I have stopped calling her mum, the last time I did she looked so confused and upset. You never know what the right thing is to do, its whatever makes them and you feel comfortable.

Jx

 

[Canadian Joanne]

This happened once so early on in Mum's illness that I was not upset at the time, simply because we were having a raging argument. Needless to say, this was just before she was sectioned and diagnosed.

Later on, I was aware when Mum didn't know me as her daughter as she would refer to me as her friend. Much later on, when she was wheelchair-bound and incontinent, she was angry with me about something which I can't remember. She snarled at me "I should have chopped your head off when you were a baby". Most people are horrified when I tell them this story but I wasn't. To me, it meant she knew I was her daughter. A good thing. Oh and my response? "Too late, Mum".