Mum didn't recognise me today.

[Andrea_22]

I had an unexpected free morning so I went to my mum's care home today . She was asleep when I arrived but soon woke up and although she immediately started talking to her "voices" she seemed bright enough.
I'd been there about half an hour when I started to get the feeling she didn't actually know who I was. 😒 She was asking me if I remembered things "they" did at the orphanage she lived in as a child and I said no mum I didn't go to the orphanage so I don't know about that. Oh she said, did you go to the church school in the daytime and just sleep in the same dormitory as me? This is when the penny dropped...
She knew my name when I asked her but she didn't know the relationship between us. When I told her I was her daughter she just looked very confused and said "Really? But I don't have any children!" Eventually after gently asking her questions it turned out she thought I was someone she lived with at the orphanage where she grew up in the 1940s/50s 😳
She was diagnosed in October 2021 after several years of trying to get primary care to take my concerns seriously. I believe she's now in the later stages of the disease as she started having visual and auditory hallucinations 18 months ago. This is when I finally got her into care. I knew the day when she didn't know who I am would eventually arrive and there's probably worse to come 😥 but it's going to take some processing knowing I no longer exist in my mother's world. I took some comfort that she thinks I'm someone she clearly cared about when she was growing up but I still feel very sad. I miss my mum.

 

[Collywobbles]

I’m so sorry - that must be terribly upsetting.

I suppose a positive is that in her confusion, she’s equating you with a friend from her childhood - someone she had warm feelings for. That reflects how she feels about you, but she just can’t find the specifics any more. Maybe you could take comfort from that? Also, you may well find that she “comes back” from time to time. And although she didn’t recognise you today, she might next time you see her.

Sending all best wishes.

 

[Jale]

It is difficult when this happens. Mum rarely speaks now but a couple of months ago out of the blue she asked how my boys were, how old were they now and what did they want to do when the left school. It took a few minutes to realise that mum thought I was her sister in law. After that mum again stopped talking, I occasionally get a hello but that's about it.

I tend now to go with the flow - I've got quite good at lying when necessary, but it is still very sad.

 

[Andrea_22]

Thank you for your replies. It is very upsetting. This afternoon I've actually had a couple of people say there's no point going to visit again if it's so upsetting and she doesn't recognise me anymore. I could never do that. I'll be there again next week. She bought me a book in 1979 called Pollyanna. This introduced me to the " glad game" and I've played the glad game ever since! I do get comfort from the fact she thinks I'm someone she cared about at the orphanage.

Visiting mum in the care home brings to mind the quote from Forrest Gump.
Life is like a box of chocolates.
You never know what you're going to get..

 

[McSuffolk]

@Andrea_22 I am feeling your pain today and sending hugs yr way. My mum declared me to be her sister today (I wouldn’t mind but it makes me older than her !!!) and I didn’t even bother to correct her as I know she is slowly slowly showing less obvious recognition when I visit and, like you, I’m determined to just be glad that she knows me at all as I guess one day that may not be the case. It’s the hardest thing ever losing your mum this way.
This forum of shared experience and suffering is a god send!

 

[clare77]

How true! It’s heartbreaking when they don’t know you isn’t it.
Mum lives with me and my family at home. She has middle stage dementia. She knows who her daughter Clare is but often doesn’t recognise me as her, but this fluctuates daily and I often don’t know whether she’ll know who I am today or not. I’m guessing it’s because the Clare she knows is probably much younger than I am now! It’s hard isn’t it and I know the day will come when she doesn’t know me at all, so I try to appreciate when she does.

 

[yoy]

It's very strange isn't it. When I visit my mum she will usually say hello, ask how my husband is, what's he doing, is he doing x (his hobby) etc. It all sounds so normal, but within a few minutes I can tell from the conversation that she now thinks I'm her sister. I've got used to it now and just go along with it.

 

[LadyLouise]

This is a milestone none of us want to reach. It may be that your mum does recognise you on some deep level but can’t match you up with the right random snatches of memory available to her at that moment. If you see that your visits are doing some good even if it’s just at the level of providing some stimulation and interaction for her, I hope you will be able to take some comfort from that. My mom started not recognising me nearly 2 years ago. We were on a walk and she looked straight at me and asked if I had ever been to the neighbourhood before. I was shocked but covered it up and said, yes I actually grew up in this neighbourhood. She peered at me and I thought I saw a glimmer of recognition. Oh yeah, you were one of those snot-nosed kids running around (she had used that phrase in a joking endearing way not as an insult). Hard at the time but funny in retrospect that she saw me as a street urchin. Since then, she has recognised me in moments, even calling me a childhood nickname recently, despite being at a very advanced stage of dementia. So it’s an unpredictable thing.

 

[Chris m]

I'm going through exactly the same with my mum. A few weeks ago she asked me which school my daughter Margaret goes to. I don't have a daughter, only a son (not Margaret!) and he left school a few years ago. On my next visit she asked me whether my sister still lived in the same house -I don't have a sister. This week she asked me when William was next visiting (who?). Afterwards and with some detective work, looking at our family tree, it seems she thinks I'm actually one of her aunts - I think it alternates between 2 specific aunts, judging by the names she's using. I think aspects of this disease are like all the contents of the office filing cabinet (aka the brain) have fallen out and all been put back in the wrong places. Best not to challenge and go with the flow - I gave non-specific answers and they seemed to satisfy mum!

 

[ChaceSoto]

It's hard to accept that your loved one has forgotten you. Now it is important to find ways to support and understand in this situation. It will also be good to discuss your feelings with loved ones or contact a specialist for advice and support. Remember that you are not alone in your feelings, and there are people ready to help you in this difficult time.

 

[Sphynx]

My Mum hasn’t known who I am for a few years now. She thinks my sister is her sister. It took a long time to reconcile my feelings about it, but it helps that my mum is lovely to everyone. She said in the early days to my sister that I was ‘a very nice person’. It was actually good to know she liked me just as a person. She has shown me love every single day of my life, and all those days are still in my memory, I will just have to hold onto them for both of us now. I just wanted to let you know that however long she has left, your mum will appreciate you being there, being kind, being company for her. I find it much easier now my mum has stopped asking to come home. She is settled and blows me a kiss when I leave. She needs you and it sounds like she has a loving daughter who will keep trying to make her dementia journey bearable.

 

[Rachael03]

The same is starting with my mum and its really unsettling me. I had convinced myself that lack of recognition wouldnt happen tp us, as it doesnt in all cases, but it looks like its coming.

She occasionally refers to us (me amd my brothers, her shared primary carers) in 3rd party eg asking when Rachael will be coming, when she is talking to me ...but for now is able to correct herself. She also is forgetting who my husband is and they have had a close relationship for many years. Most importantly though she has a giggle about being mixed up which I am so so grateful for....and I can laugh it off as well and we dont dwell on it. Long may that last.

I didnt realise how hard these little moments would be, and its not even full blown lack of recogniton yet. I hate living in fear of the dementia. It takes so much from us already, i do my best not to give it anymore on top..but its flipping tough!

Sending support to all those going through the same

 

[LadyLouise]

Sending you positive thoughts Rachael. You’re right, this is flipping tough!

 

[sdmhred]

Sorry to hear this @Rachael03 😢 It’s so distressing when this happens for the first time. I remember we were sat in the car when mum talked about me to me for the first time . My heart sank 😢😢

It sounds awful, but you will get used to it in time. I’ve accepted mum sees me as a good friend now but am just thankful she always smiles when she sees me.

I don’t think about how she doesn’t recognise her own daughter as it’s just too bizarre to contemplate.

I think such things tho leave a continual stress and weight with us tho.

 

[millalm]

Andrea_22 I, too, know exactly how you are feeling. My first experience was when my Mum was living with me and was eating her afternoon snack, and looked right at me and said when did I first know you ? Sound of heart breaking, mine, but in further conversation when she said it was 'too bad my Dad hadn't made it '- (the first and only time she has referred to my Dads death) because 'he would have known you'. Then she proceeded to describe when she and I came to Canada, by plane, 60 years ago to join my Dad who had emigrated a year earlier, right down to the colour of winter coat he had bought for me coming! I had my video running and each time I watch this exchange it breaks my heart again. The description of the dementia brain as a jumbled file cabinet is a brilliant one. I have often thought if it was not my Mum, doing a study on the ways dementia has affected her brain would be fascinating.

As it is, 12 years into our journey, she has not known me for some time, has no intelligible language, seldom opens her eyes and is mostly bed bound, has been in late stages for over a year(maybe 2) . She sometimes hums a few notes of her favourite song which has been a 'thing' we have shared during this journey. It makes me hope that it means she is still in there somewhere, and knows I am there with her. My other thought is 'does that mean she is locked in there screaming to be let out?'

I have visited her virtually everyday in the 7 years she has been in the nursing home. People ask me why I bother since she doesn't know I'm there. My answer is that she may not know, but I know that I am there and that's enough for me.

All we can do is wish that as caregivers we can muster the strength to hold on for this horrible rollercoaster and remember the days that came before, and look ahead to the days that will come after our ride is done.

Remember you are not alone. I miss my lovely Mum too.

xo

 

[Rachael03]

Sorry to hear this @Rachael03 😢 It’s so distressing when this happens for the first time. I remember we were sat in the car when mum talked about me to me for the first time . My heart sank 😢😢

It sounds awful, but you will get used to it in time. I’ve accepted mum sees me as a good friend now but am just thankful she always smiles when she sees me.

I don’t think about how she doesn’t recognise her own daughter as it’s just too bizarre to contemplate.

I think such things tho leave a continual stress and weight with us tho.

Thanks. I dont actually find it distressing in the moment as luckily she is so upbeat still❤️ but I take comfort feeling assured that she knows we all love her so much and we make her feel safe and I really really hope those feelings remain for her, even her mempry of our relatipnships are displaced further and further.

It definitely takes its toll slowly doesnt it. I found I had been ignoring my feelings on it as life has been generally busy, but when I had some time to sit an process, I needed a good old cry to let off some steam. Luckily for me that does help me let off a bit of pressure and I have no trouble crying ...
Which can be a help and a hindrance 🤣

 

[Rachael03]

My other thought is 'does that mean she is locked in there screaming to be let out?'

This thought has crossed my mind too...my mother isnt as advanced yet but I fear about it coming.

I think I will need to block it out and override as it doesnt bear thinking about.

 

[sdmhred]

Thanks. I dont actually find it distressing in the moment as luckily she is so upbeat still❤️ but I take comfort feeling assured that she knows we all love her so much and we make her feel safe and I really really hope those feelings remain for her, even her mempry of our relatipnships are displaced further and further.

It definitely takes its toll slowly doesnt it. I found I had been ignoring my feelings on it as life has been generally busy, but when I had some time to sit an process, I needed a good old cry to let off some steam. Luckily for me that does help me let off a bit of pressure and I have no trouble crying ...
Which can be a help and a hindrance 🤣

We sound very similar @Rachael03

Mum is now well into late stage but I take pleasure in the fact she greets me with a huge smile when I arrive to see her. The carers tell me they jolly her into her shower with the knowledge that I am on my way to take her out - that for me keeps me going!

I also find every now and then a little thing sets off a big ‘grief cry’. Definitely helps with the emotional processing I think. Unfortunately it can lead to a migraine and often leads people to think Im a bit unstable but actually is a sign of good emotional health for me!

 

[Rachael03]

We sound very similar @Rachael03

Mum is now well into late stage but I take pleasure in the fact she greets me with a huge smile when I arrive to see her. The carers tell me they jolly her into her shower with the knowledge that I am on my way to take her out - that for me keeps me going!

I also find every now and then a little thing sets off a big ‘grief cry’. Definitely helps with the emotional processing I think. Unfortunately it can lead to a migraine and often leads people to think Im a bit unstable but actually is a sign of good emotional health for me!

Aw @sdmhred thats lovely to hear about how happy your mum is to see you. She must really look forward to your trips together, thats so very special

Crying is a completely natural humam reaction to intense feelings and emotion. Glad to hear you are ignoring those who imply otherwise, as would I.

 

[really78]

I'm not as this stage , as dad does call me by name as l turn , the key in the door .So l can't relate to this part. However my gran , did not remember me with Alzheimer's but mixed me up with my mother . I didn't mind. My heart goes out to all of us , on here navigated a heartbreaking illness. Although l've been navigating it with dad for 13 years, it's still something,that l never fully get my head around .