What would you say to someone who’s worried about seeing a person with dementia for the first time in months?

[SophieD]

Hi everyone!

Our wonderful Alzheimer's Society magazine, Dementia together, includes real-life experiences with every issue, and they'd like to hear from you.

Hopefully, we’ll be seeing family and friends over the festive period, even though we don’t yet know exactly how or when. For some people, this could mean that they'll be seeing a loved one with dementia for the first time in a long while.

What would you say to someone who’s worried about seeing a person with dementia for the first time in months?

Please add your comments below, and they may be featured in the next issue of the magazine.

Thanks all

 

[Whisperer]

Really hard question. Will we be able to visit loved ones outside our area or in a care home environment? How close can you get eg same room, garden, shouting through a window, etc. I guess try and grasp the following points may apply to your loved one.

1) After a long absence Seeing them will no doubt be an emotional moment for you. If might be for them as well, or perhaps the illness has advanced to far for that to be the case. Perhaps they no longer show emotion, or in their memory they saw you last week not many months ago, so why would it be emotional for them. Expect the unexpected.
2) perhaps another member of the family who cares for them daily has tried to keep you up todate with how their illness is progressing. When you meet them and all the gradual changes are seen in one go then accept what presents to you. A carer does not need judgement because their reports were not “accurate” enough, perhaps sparing you pain or just living day to day with the loved one they adjust without realising. That carer has been through a lot, supporting the shared love one.
3) Remember the carer in those circumstances. They should not be ignored, merely asked questions about the loved one. They exist in their own right, not just as a carer. It could be easy to take the caring relative for granted.

Above all else go with the flow. Accept what you find not what you would prefer to find, want to find, would like to find, just what ever presents.

Stuck my head above the wall as a initial contributor. The ice has been broken for others now to comment.

 

[karaokePete]

"Don't worry if the person doesn't seem to know who you are - just be aware that the emotional tie is still likely to be there and the feeling of 'closeness' is likely to be intact."

Just a few weeks ago my wife looked at me and asked "Who are you?" The important thing was that she wasn't afraid and readily accepted my answer. This afternoon we were driving home from the Day Centre and my wife later told me that at that time she didn't know who I was but thought that I was a nice man(thank goodness for the last part of that!!).

 

[Hazara8]

Hi everyone!

Our wonderful Alzheimer's Society magazine, Dementia together, includes real-life experiences with every issue, and they'd like to hear from you.

Hopefully, we’ll be seeing family and friends over the festive period, even though we don’t yet know exactly how or when. For some people, this could mean that they'll be seeing a loved one with dementia for the first time in a long while.

What would you say to someone who’s worried about seeing a person with dementia for the first time in months?

Please add your comments below, and they may be featured in the next issue of the magazine.

Thanks all

The nature of the dementia in respect of " memory" is very significant here. Capacity which is aware of absence or time in relation to that ( regular visits from family etc)suggests awareness and possible anxiety due to an unanswered change in that regime. But when time is so compromised and an hour can just as well be a week, then that first meeting after months of absence might best be addressed as if nothing was awry at all. The " here and now" which is such a familiar feature of advanced dementia does not recognise time as we naturally do. I would endeavour to prepare myself in body and soul so as to carry on where l left off and treat that visit as simply that, thus not communicating any emotion which signalled distress. Not easy. But the outside world remains our domain and not that of those living with dementia. They have their own, just as authentic for them and they invite us into that domain by default. Where "absence makes the heart grow fonder" does not always apply. In the moment does with dementia because that can so often be all there is.

 

[Jacques]

I think that it is better to treat the person as if you have just met them and take your lead from them. Don't try to remind them of things from their past as it will only confuse them. If you are lucky they will remember you but if not just enjoy the day.

 

[Weasell]

If the visit or ‘contact’ is short that is not a sign of failure. My mother dispatches people with unseemly haste. The point is though that she is happy ! It’s like ‘tick box’ communication:
Seen you
I’m important
We are ok
Bye!

I think we can at times, hope love can cut through dementia. It can’t sadly, however large the love was at one time.

If you think they may not recognise you , then try calling out an upbeat greeting before they see your face. Speech takes a different pathway through the brain.

If things go badly remember that dementia can be tidal through the day. So if you had seen them at 8.35am, the visit may have been very different!

If they cling onto you and ask to ‘go home’ it doesn’t mean the bungalow you are imagining. It could be their childhood house. The person could well be craving the feeling of safety and comfort that they had as a small child.
If you think it could be a problem you could ask the staff how they reply , or if caught on the hop ! Some people will answer this with ‘ we need to see what the doctor thinks’ or perhaps ‘ the central heating is broken and it’s colder than a fridge.’

 

[Wishing20]

Hi everyone!

Our wonderful Alzheimer's Society magazine, Dementia together, includes real-life experiences with every issue, and they'd like to hear from you.

Hopefully, we’ll be seeing family and friends over the festive period, even though we don’t yet know exactly how or when. For some people, this could mean that they'll be seeing a loved one with dementia for the first time in a long while.

What would you say to someone who’s worried about seeing a person with dementia for the first time in months?

Please add your comments below, and they may be featured in the next issue of the magazine.

Thanks all

I would absolutely love to believe we will be able to be with our Loved Ones at Christmas, and I don’t mean viewing them from a closed window or Perspex screen, sadly I don’t think theres any chance of bringing them home to share the family Xmas dinner

I saw my Mum, physically, after the first 3 month Lockdown. It was absolutely emotionally wonderful. I hugged her and she kept looking at me and saying ‘I can’t believe it, its you, you look so different’!
Since then with FaceTime calls and the odd window visit, she really has forgotten who my Dad is and she asks him all the time and seems bemused that she has a husband, its terribly sad. She has forgotten all other family members.
So my advise when seeing your LO for the first time in months, is to be prepared for the lack of recognition and introduce yourself in a really friendly way, say your name and what relation you are to your LO, and repeat this often. Don‘t mention other family members if their not sure who you are, keep it simple. Try to chat about a really happy memory from the past or a Pet, my Mum forgets humans, but never ever forgets our pets!
If your one of the lucky ones and get chance to hug, enjoy every single wonderful second.
Stay strong everyone, we will get through this

 

[Just me]

It’s a difficult question not knowing the person or the circumstances but if it were me, I’d prepare myself for the inevitable change in the PWD and try practising my poker face.
I’d be happy and smiley and not worry if they didn’t recognise me, the important thing is that you’re seeing each other.
Depending on their level of communication I’d keep things simple and avoid mentioning the ‘outside world’ if it seems to upset them.
I’d give them lots of cuddles (if you are allowed!!) and they’re happy to have them and take some treats, chocolate, or whatever they like and photos and cards that they can look at after the visit.
My mum’s in hospital and I haven’t seen her for 4 weeks save one short visit soon after admittance as she’s contracted coronavirus while being there and it’s been an emotional rollercoaster.
I know this separation has created extreme anxiety and depression in mum but they can’t give her any treatment to help while she still has the virus.
My my heart goes out to all those who have been prevented from seeing their loved ones and friends for months on end.
This year we’ve heard how important emotional well-being is but they emotional damage inflicted on people in care homes and their families will live on.
Sorry I’ve gone a bit off topic....

 

[Juliematch]

I’ve just posted my experience of my visits to see dad. The first being a window visit and so uplifting for me. The second being so different as he had forgotten me. I suppose the only thing I can say is ,take it as it comes . Dad and I spoke about neutral things weather , food etc when I realised he had forgotten me.I took goodies but wasn’t allowed to give him them myself so I missed seeing his face light up but I know they were in his room for when he went back . Try to be positive ( easier said than done I know) and take positives away with you. As long as they are happy and being cared for, that’s all any of us want for our loved ones .

 

[Greyone]

Much to my surprise , i had a letter from my council about the service available to those who do not need to shield for this lockdown. It took me by surprise because it still cautioned me to take care when mixing with people etc.
It made me rethink my plans for a return to the swimming pool in my local arena.

My shielding was only temporary because of treatment i had two years ago. I wont have an opportunity to discuss with my consultant until early December when he may treat me again. nevertheless , the letter had a profound effect on me and certainly put me off risking the swimming pool for quiet a while.

 

[Mobbin17]

Really hard question. Will we be able to visit loved ones outside our area or in a care home environment? How close can you get eg same room, garden, shouting through a window, etc. I guess try and grasp the following points may apply to your loved one.

1) After a long absence Seeing them will no doubt be an emotional moment for you. If might be for them as well, or perhaps the illness has advanced to far for that to be the case. Perhaps they no longer show emotion, or in their memory they saw you last week not many months ago, so why would it be emotional for them. Expect the unexpected.
2) perhaps another member of the family who cares for them daily has tried to keep you up todate with how their illness is progressing. When you meet them and all the gradual changes are seen in one go then accept what presents to you. A carer does not need judgement because their reports were not “accurate” enough, perhaps sparing you pain or just living day to day with the loved one they adjust without realising. That carer has been through a lot, supporting the shared love one.
3) Remember the carer in those circumstances. They should not be ignored, merely asked questions about the loved one. They exist in their own right, not just as a carer. It could be easy to take the caring relative for granted.

Above all else go with the flow. Accept what you find not what you would prefer to find, want to find, would like to find, just what ever presents.

Stuck my head above the wall as a initial contributor. The ice has been broken for others now to comment.

What a wonderful post this is , some members of my family have not seen my Mum for quite a long time what with lockdowns , hospital and isolation. When I need to , I will refer to your words . Thank you ??

 

[Dimpsy]

Just say 'Hello' the rest will come naturally.

 

[Maddiebd]

This happened to me several months ago, before the lockdown restrictions. The lady in question is my best friends mum and we were meeting for afternoon tea at a local cafe. She arrived with my friend and her other daughter. The first thing I noticed was her amazing coat and I made that my initial comment. I said it ‘was a while since I’ve seen you ‘ and left a pause before I mentioned her amazing coat. That started a conversation that travelled from her youth to present day.
It was a wonderous afternoon. And to top it, my friend tells me that her mum mentions the lady who liked her coat each time she puts it on. She may not always remember me but I must have made a memory , no matter how small. ?

 

[Whisperer]

What a wonderful post this is , some members of my family have not seen my Mum for quite a long time what with lockdowns , hospital and isolation. When I need to , I will refer to your words . Thank you ??

Dear @Mobbin17 you are more than welcome. Hope the reunion goes well whenever it is.