I'm just so sad...

[herdaughter]

My mother has had dementia for 10 years and has been in a care home for the past 4 1/2. I used to fly 10 hours to her every three months faithfully, until the pandemic. Then both the borders of her country and the care home itself closed to visitors. I've only been there once all year, and then I was only able to see her for an hour, through the mercy of a head nurse who made an exception for me. This is of course one of the reasons she and her fellow patients are still alive -- until December, the home she was in had had no cases of coronavirus at all. But the fact is, she's had no visitors at all for more than a year now. She is at the stage where she doesn't speak, she doesn't look at anyone, just has that fixed hundred-yard stare strapped into her wheelchair. And no, she's not under the chemical cosh; I've looked carefully at her medication. It's just the stage she's at.

But. When I got to see her last month, she ignored me as usual for a few minutes, and then suddenly without looking at me she grabbed me by my shirt and hugged me for the first time in half a decade. She held onto me tight, rubbing her face against mine, for the whole time I was allowed to stay.

The nurses were so thrilled. But I can't seem to recover. I had so relied on the hope that she didn't know where she is or what has happened to her. But now it haunts me, the idea that she knows what's happening to her, and knows I haven't been around without understanding why, and is getting no hugs at all. Do you think she knows? Is it more like locked-in syndrome, and she's screaming inside without being able to communicate? What can she be feeling under that cover of dementia?

I'm so sorry to be depressing.

 

[Jaded'n'faded]

No, I don't think it's anything like locked-in syndrome. A person with advanced dementia can only think/react 'in the moment' and cannot retain memories so basically, they can't 'dwell' on anything or have the sort of complex thoughts you describe.

I think what you saw was a brief, 'lucid' moment which is rare but does happen. Who knows what may have triggered it? It could even have been something as subtle as her recognising your unique smell!

Please don't be haunted by the experience - it was a good thing! Your poor mum will not be wondering where you are or why you haven't been, neither will she be aware of the passage of time.

Be kind to yourself - you are doing everything you can.

 

[DreamsAreReal]

@herdaughter Don’t be sorry for posting, this is what this forum is for. I don’t have any wise words for you I’m afraid. I’d probably feel the exact same way if this happened to me. Just when you think Dementia is the most devastating disease ever, a global pandemic comes along that makes everything even worse.

Don’t torture yourself with the what ifs and the worst case scenarios, your Mum wouldn’t want that. We can’t know how she feels. It could just as easily be that she wasn’t suffering at all and just drifting along in her own dreamworld, but the sight of you made her very happy indeed for the time you were there. When you left she went back to her dreams quite content. That’s just as possible as your haunting thoughts. More so, I think.

My mum’s not so far advanced as yours but she’s no longer watching much tv as she doesn’t understand it. She told me she’s quite happy daydreaming instead.

Edit. Doh, it took me so long to write that jaded n faded posted the same but not so long winded!

 

[canary]

Hello @herdaughter

I think that what people with dementia are feeling and thinking is very different to what we think and feel and we shouldnt assume that how we would feel it what they are.

People with dementia lose sense of time and as the dementia progresses, live more and more in the "now".

I learned this when mum was in her care home. She was she was mobile and articulate and every time she saw me her face would light up. I accepted that when I wasnt there she was happy, talked and joked to the carers and other residents, made friends and joined in the activities.

There came a time, though, when I wasnt able to visit at all for three months because of problems with OH and I was concerned that she would wonder why I stopped visiting and felt abandoned, so I sent her picture postcards with a simple message saying I loved her and would see her soon. When I was able to visit again I said to her that I was sorry that I hadnt been to visit her and she told me not to be silly and had I enjoyed my holiday? It became obvious that she had no idea how long it had been since I visited and thought (because of the post-cards) that I had been on a weeks holiday!

Your mum will not have "missed you" in the sense you are thinking of and they dont have "locked in syndrome", but when she saw you the messages in her brain suddenly found a route and she knew who you were - a brief flashlight of lucidity. Treasure that moment

 

[Kapow]

I feel your pain.My husband is suffering with dementia and alzheimers.He has no awareness of time,dates,events and can barely recall anything these days.Covid meant isolation for me also,and during this time I have noticed there is no conversation,nothing.Don't beat yourself up...your Mum will be fine,she isn't aware and tomorrow is another day and with it a new challenge......You will be fine too.

 

[lemonbalm]

Hello @herdaughter

It is so easy to torture ourselves with what our loved ones may be thinking or feeling.

I used to visit my mum every day (although sometimes didn't actually see her because she didn't always want to see me!). Her care home locked their doors early last March and I didn't see mum until November. When the carer wheeled her out (it had to be an outdoor walk visit), she gave a cheery wave and said "Oh hello" as though she'd seen me just the other day. There was no sign at all that she knew she hadn't seen me for months on end.

I think the others are right. Your mum knew you were someone she loved at that moment and wanted to show it at that moment. A magical moment for you to treasure indeed. As for hugs, mum's favourite carer told me that mum was having lots of hugs and I expect yours is too, just not from us. A friend recently asked me if I was able to hug mum during my visit and I joked "oh no, I have staff to do that for me". The nurses were thrilled at your mum's gesture. They sound good people and I am sure are giving your mum lots of affection on your behalf.

 

[gm1632]

My mother has had dementia for 10 years and has been in a care home for the past 4 1/2. I used to fly 10 hours to her every three months faithfully, until the pandemic. Then both the borders of her country and the care home itself closed to visitors. I've only been there once all year, and then I was only able to see her for an hour, through the mercy of a head nurse who made an exception for me. This is of course one of the reasons she and her fellow patients are still alive -- until December, the home she was in had had no cases of coronavirus at all. But the fact is, she's had no visitors at all for more than a year now. She is at the stage where she doesn't speak, she doesn't look at anyone, just has that fixed hundred-yard stare strapped into her wheelchair. And no, she's not under the chemical cosh; I've looked carefully at her medication. It's just the stage she's at.

But. When I got to see her last month, she ignored me as usual for a few minutes, and then suddenly without looking at me she grabbed me by my shirt and hugged me for the first time in half a decade. She held onto me tight, rubbing her face against mine, for the whole time I was allowed to stay.

The nurses were so thrilled. But I can't seem to recover. I had so relied on the hope that she didn't know where she is or what has happened to her. But now it haunts me, the idea that she knows what's happening to her, and knows I haven't been around without understanding why, and is getting no hugs at all. Do you think she knows? Is it more like locked-in syndrome, and she's screaming inside without being able to communicate? What can she be feeling under that cover of dementia?

I'm so sorry to be depressing.

My gran who recently went into care did a similar thing. Just before she went, I gave her a hug and she really clung on to me. I don’t think she was doing it because she had any idea she was going into care and was scared. I think it was that something just clicked in her brain for a moment and she was like ‘oh! This person is G! I love G!’ I think the same happened with your mum, she wasn’t thinking how long you’d been ‘gone’, it was that it suddenly clicked that you are someone she loves. And that’s all she was thinking/knowing in that moment: loving you. I often wonder if sometimes when we make physical contact with a PWD, esp a parent or grandparent, some sort of bone deep parental love sort of kicks the dementia demon out of their head for a little while.

 

[herdaughter]

Thank you all. It's so hard, isn't it? I do believe the love long outlives the ability to speak.

 

[It's Life Jim just not]

Wow, what a wonderful interaction and memory you have to keep .. some normality will return and I hope you get to see your Mum again soon. It sounds like the nurses are there for you also. I remember my Aunt barely recognising her siblings yet always knew me ... her brother was so upset and struggled to accept it But whilst this disgusting thief steals the "now" it can never remove or erase our real memories of our loved ones and who they truly are ... stay strong, your doing a grand job