You miss your "support network" when it's not there.

[Philbo]

One of the first things I did when my wife started showing the signs that she may have dementia was to go about establishing a better social life.

Realising that I needed to get her out more, plus something to help me cope, I managed to get her to start going to one of our local pubs and to cut to the chase, we now have a great bunch of friends who are very supportive and a great comfort to both of us.

As the title says though, you do miss this support when it is not there - in this case, just for an instant.

We normally go out on a Friday and Saturday night and Sunday afternoon. Usually, either I will text our friends or vice versa, to check whose out. Last night, I had not heard from anyone and I was a bit busy so we just headed of out anyway.

Turns out that for various reasons, none of our friends were out and we ended up like "Billy-no-mates".

The worse bit was that as my wife only had me for company, she became very restless and fidgety. She kept saying she needed the loo (she's mainly incontinent) but even when I took her into the ladies (they've no disabled toilet), she didn't actually "go". So we ended up going back home and when I checked, we'd only been out an hour!!

Hopefully, normal service will be resumed tonight?

Phil

 

[JaquelineM]

One of the first things I did when my wife started showing the signs that she may have dementia was to go about establishing a better social life.

Realising that I needed to get her out more, plus something to help me cope, I managed to get her to start going to one of our local pubs and to cut to the chase, we now have a great bunch of friends who are very supportive and a great comfort to both of us.

As the title says though, you do miss this support when it is not there - in this case, just for an instant.

We normally go out on a Friday and Saturday night and Sunday afternoon. Usually, either I will text our friends or vice versa, to check whose out. Last night, I had not heard from anyone and I was a bit busy so we just headed of out anyway.

Turns out that for various reasons, none of our friends were out and we ended up like "Billy-no-mates".

The worse bit was that as my wife only had me for company, she became very restless and fidgety. She kept saying she needed the loo (she's mainly incontinent) but even when I took her into the ladies (they've no disabled toilet), she didn't actually "go". So we ended up going back home and when I checked, we'd only been out an hour!!

Hopefully, normal service will be resumed tonight?

Phil

Hello Philbo , I hope your social life is now back on track ! My OH is not very happy in any social situation now , I imagine because he can't follow what's going on , he gets increasingly restless and just wants to go home so I have more or less given up , when friends or family come to visit he doesn't seem to like that either , often doesn't know who they are anyway , thought his own daughter was some kind of " official" yesterday . He usually wanders off to his room and muddles about , so at least I can talk to whoever it is .On the other hand we are not yet having to cope with the incontinence problem , though no doubt it will come at some stage ! All the best

 

[Early Girlie]

Gosh, this was good timing for me! I am starting to get really worried about how bored my Hubby is getting. He's only 49, and before he started to lose his memory, we both worked long, hard hours, and our social life consisted of heading off to hotels for the weekend, or visiting friends around the country. 2 years after diagnosis, I now find us tied to home and with very few friends locally. It's building up, and there are a lot of supportive people around us, but Hubby spends a lot of his time sitting home alone watching tv or scrolling through his iPad absently.

I am on the waiting list for Crossroads, and hope I can at least find a gym buddy for him, but it's a real challenge trying to keep him mentally stimulated and with some fun and company in his life.

EG

 

[Philbo]

Gosh, this was good timing for me! I am starting to get really worried about how bored my Hubby is getting. He's only 49, and before he started to lose his memory, we both worked long, hard hours, and our social life consisted of heading off to hotels for the weekend, or visiting friends around the country. 2 years after diagnosis, I now find us tied to home and with very few friends locally. It's building up, and there are a lot of supportive people around us, but Hubby spends a lot of his time sitting home alone watching tv or scrolling through his iPad absently.

I am on the waiting list for Crossroads, and hope I can at least find a gym buddy for him, but it's a real challenge trying to keep him mentally stimulated and with some fun and company in his life.

EG

We recently started getting a respite visitor from Crossroads, who sits with my wife for 3 hours each Tuesday morning. I am also in the process of exploring other daycare or drop-in type opportunities in our area.

Thankfully, "normal service" was resumed the rest of the weekend and for the time being at least, the pub remains our main source of socialisation (not to mention keeping me partly sane).

Phil

 

[Early Girlie]

I thought I'd give a little update because something lovely has happened. I realised it was time for me to take a bit more control of the decision-making, and decided I was going to tell more of Hubby's friends. I asked one of those closest to us, who knows about the diagnosis, to help me. A few days on, word has gone round the group and I've had so many supportive emails from friends we've not seen for a few years. They've set up a WhatsApp group and are organising an informal rota of visits and plans to take him out and stay in touch. And the wives have all joined in and offered support to me too. How wonderful is that?

EG

 

[Philbo]

I thought I'd give a little update because something lovely has happened. I realised it was time for me to take a bit more control of the decision-making, and decided I was going to tell more of Hubby's friends. I asked one of those closest to us, who knows about the diagnosis, to help me. A few days on, word has gone round the group and I've had so many supportive emails from friends we've not seen for a few years. They've set up a WhatsApp group and are organising an informal rota of visits and plans to take him out and stay in touch. And the wives have all joined in and offered support to me too. How wonderful is that?

EG

That's a great result EG - it's heartening to see you getting so much support.

Sadly, a lot of my wife's friends and ex work colleagues have turned into "invisibles" and although she is blissfully unaware, I feel aggrieved on her behalf.

Even one of her sisters, who lives about a 80 min car journey away, has only visited twice this year! They've got a lot going on but I am sad that she doesn't want to see more of her sister, whilst she knows who she is?

I bite my tongue, as I don't want to cause any family grief but I wonder if it's some people's way of dealing (or not) with the situation?

 

[Early Girlie]

The invisibles are tough to deal with, from the Carer's perspective, I think. Hubby's father also had EOAD, so it wasn't a total shock when we got the diagnosis. Since then, MIL has barely registered on our radar. She lives overseas so I don't expect regular visits but I was mortified to discover she was in the UK at a dog show last year when her son was in hospital 20 miles away, with pneumonia. We get the odd 'all about me' letter or phone call, and I get told to take care of myself, but that's it. I think she probably feels she's been through it all once and doesn't want to face it again. But I can't help feeling a bit resentful when I get asked, when are you coming over?

EG