• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

coping socially

mackerel boats

Registered User
Mar 29, 2008
18
west country
I realise that my situation is not as bad as some people's, but I would appreciate any help as regard to telling/not telling people about my husband's vascular dementia. I tend to tell half lies by saying that he has had trouble with his medication for blood thinning. The truth is that he has had the medication to help his mood swings and his agression towards me. The tablets gave him terrible side effects. They were Lamictal. Except for our daughters and 3 friends I am having to live with the situation where I am my usual self when out playing golf and socialising...at least I am myself on the outside but inside I am feeling very upset and cannot show it. I don't want to show it either when I am out, but some of the women at the golf club are so SMUG with their lives. I feel very jealous and feel cheated. I don't want their sympathy. This all sounds very selfish but I compare myself to a swan...looking serene on the surface but paddling desperately underneath!
Any hints and suggestion will be welcome. Thanks to you all for this excellent website.
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
Hi Mackerel Boats

Stop paddling.:)
look serene:)
and hold that swan neck up high.:p
Barb & Ron X
PS
I do not care that people stare, at Ron and I.:pThat is the problem, why do we care about what other's think ?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,406
Kent
In social situations, many people appear to have perfect lives, but no-one knows what goes on behind closed doors.

I really don`t believe anyone goes through life unscathed, but people only tell you what they want you to know.

I have always found many social occasions artificial, with or without dementia. People like to be seen to be having a good time and living the `Martini` life, but the laughter is often false and the `happiness` a big act.

I wouldn`t worry about it so much.
 

helen.tomlinson

Registered User
Mar 27, 2008
541
Hello Mackerel Boats

Only you can decide what to tell your friends and there must be some reason why you choose not to confide in them. You see them as having perfect lives and they must see you like that too because that is what you are choosing to show them.

I think there's lots to consider. You can choose to keep things as they are and get support and offload in other ways (like TP) or you can take the risk of confiding in your friends (or one of them).

I personally cling on to any normality that is around for as long as possible. What I gain by this is a separate life (away from dementia). What I lose by this is possible support.

I am sure you will find your way - we all seem to - one way or another.

Very best wishes

Helen
 

mackerel boats

Registered User
Mar 29, 2008
18
west country
Thanks to all of you for your replies.
Helen, like you I try to act normally, especially away from my situation. Luckily my husband encourages me to continue with my sports. It does keep me reasonably "on an even keel" even though inside I ache.
I am not very good expressing myself but I don't want you to think I am being too selfish.
Take care of yourselves.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
My take on it is that people who are 'smug' are actually terribly afraid to admit that anything in life might 'rock their boat'....

If they knew the truth they would be too afraid to show their awe or their own failings ...... they are probably terribly insecure of themselves, jealous and afraid of any one like you who can cope with what you do .... but of course you are too serene to let them know that ;)

Keep paddling!!!!! And keep that graceful neck beautifully high! :)

Love, Karen, x
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
looking serene on the surface but paddling desperately underneath!
Hello Mackerel Boats!

Am sure many of us in "real" life....even before dementia hit us, might identify with the above statement.

If you feel you are paddling desperately..what would you do to change that feeling?
Your husband is a sick man..if he had a tumour or heart disease would you feel any differently..?
I'm not unsympathetic..but you do have daughters..and friends.. and are able to play golf...why are you feeling jealous and cheated?
You do sound as though you keep it all to yourself..none of us here are judgemental..it does help to talk..this is a good place to do it..:)

Sorry to answer your questions with more questions...

Love gigi xx
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello There:
I remember behaving in the same way. Eventually I did tell friends (not long after that my husband chose to tell friends himself).
After that I had tremendous support and understanding. I remember walking into a group at our golf club and my companion said 'look around - most people here have experienced serious problem' Sure enough she was right. Surprisingly many people have first hand experience of dementia.

Once you tell folk you find new special friends appear and some of the old ones just fall away. The smug ones have always been there, you just notice them now.

Keep paddling, head held high - like the rest of us.:)

Good luck Jan
 

mackerel boats

Registered User
Mar 29, 2008
18
west country
I do have a good friend, a retired nurse who's husband suffers from vascular dementia. She is a great help and I know I can phone her or email her at any time. She says I am coping well. I don't want you all to think that I am not coping at all. Most of the time things are reasonable, but I know that I should be prepared for the downhill ride, although in the past years I have had a bad time, but not realising that it was vas.dem.
I was taking it so personally that I nearly walked out on our marriage many times. Have others felt like that?
The CPN is supposed to be putting me in touch with someone local who has gone through the same situation. It is difficult to talk to him (the CPN) with my husband present.
Thanks once again for your moral support.
 

helen.tomlinson

Registered User
Mar 27, 2008
541
Hi Mackerel Boats

I do lots of sporty things too and I really find it does me good. I don't do golf but I canoe, cycle, swim and walk. Fortunately Alan is able to do this too because he is physically fit and that helps. When he's not up to it, I still do it because I believe it is in his best interest that I am o.k.

I don't know whether I am selfish - maybe I am at times - but I still believe that if I look after myself then I am best able to look after him. Fortunately the lady who visits us from the Alzheimer's Society agreed which was very encouraging.

I just think we are all different and we all cope in different ways. Fortunately I know myself really very well and I know how best to look after myself. Sometimes this is by denial, sometimes this is by outside activities, sometimes this is by showing my vulnerability. This site helps me no end. I think I was getting to quite a low ebb until I found the encouragement by other users and discovered that this was a really good way of feeling connected. I miss Alan and what our relationship was and I ache - but not quite as much now.

Love Helen
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
I was taking it so personally that I nearly walked out on our marriage many times. Have others felt like that?
We certainly went through a bad patch when I thought our marriage was in a poor state (having always been the perfect couple!). My husband showed more bad moods and aggression in the early stage than now in a later stage. As he has become more dependent on me he has become far more mellow - a small compensation for the general deterioration :eek:

I think many others here on TP have experienced this too.

Good luck Jan
 

mackerel boats

Registered User
Mar 29, 2008
18
west country
Helen, like your husband mine is physically very good for his age (72) and I try to get him out walking (which we both enjoy). We are lucky in that we are on the coast in the west country so have some marvellous scenery locally. I also got him out playing golf again last Friday. We played 18 holes and he enjoyed it and said that he wanted to get back playing again. Mind you, he might change his mind!! The weather here in this country doesn't help at times.When the weather is good there are so many things that we can do...which I intend for us to do as long as we are able.
So, as I said previously, my situation is not as bad as many,, many others,, but because it is only recently that he has been diagnosed it is still "raw".
Thank you, all of you.
 

helen.tomlinson

Registered User
Mar 27, 2008
541
I have certainly felt our marriage was on the rocks because I took it all personally. I remember saying to Alan and myself "I can't live like this" and that was not because of aggression because I haven't had that with Alan, it was because he wouldn't listen to what I was saying!!!!! How was I to know that he couldn't understand things in the way that he used to?? It's a miracle that we are together but I am glad that we are and it is different for me now that I know it's not personal. I've read quite a few posts on this site where others have felt the same.

Love Helen
 

helen.tomlinson

Registered User
Mar 27, 2008
541
Hi again Mackerel Boats

Sounds like our stories are very similar. Alan is 77 and I am 57 and I am very grateful for the ordinary things in life (doing outdoor, sporty things is ordinary to me)!! I live in denial a lot of the time but it suits me. I say to myself "why should I face things that haven't happened yet, I'll face them when the time comes" and it works for me.

I know what you mean about this country and Alan and I are off the Rhodes, Greece at the end of May. This will be his first time abroad because he has never done holidays. I am just glad that he will be able to walk, swim and hopefully canoe in the warmth.

Love to you both

Helen
 

mackerel boats

Registered User
Mar 29, 2008
18
west country
Can't sleep!!!!! We sleep in seperate bedrooms because of my snoring (don't tell anyone!!!), so luckily I can get on the computer.
I do hope that you have a lovely holiday in Rhodes, and that your husband will cope well with it. How do you manage for travel insurance? I must admit that when we flew to the Canaries in January we had just had the diagnosis 11 days previously and obviously our travel insurance had been taken out months previously. I didn't let the insurance company know of my husband's health problem. Maybe we would not have been eligible for any claims should any have arisen. Does anyone know how we stand on this point?
I think that maybe I am looking too much into what the future holds and not living for the day. My good friend says that if a day goes well and there have been no upsets of any kind then be grateful.Quite true.
Love to you:)
 

helen.tomlinson

Registered User
Mar 27, 2008
541
Morning Mackerel Boats

I had no problem getting Alan's travel insurance. I told them about his dementia and they asked me a load of questions and I was told it would be about £82. I think it's because he is physically fit. I also said that I want it on record that should anything happen - like a broken leg - it won't all be put down to dementia!!!

Have a great day and try not to look into the future at all. Your friend is right - live for the day and it can still be very nice.

Love Helen :):)
 

mackerel boats

Registered User
Mar 29, 2008
18
west country
Helen, thank you for your reply.
We have had a busy day today. This morning went shopping and got lots of bargain plants from Homebase. This afternoon the weather wasn't too bad so got some jobs done in the garden. Started to rain at about 4p.m., so time to stop.
As you say take a day at a time. Today was quite good. I was aware of hubby out of his "comfort zone" at a big store. But knowing how things are really does make a difference.
Take care and hopefully you will have a good weekend.
Love from the West Country!
 

helen.tomlinson

Registered User
Mar 27, 2008
541
Hello Mackerel Boats

Glad to get your message and glad that you had a busy day doing normal things. Today was supposed to be my day off (I am self-employed so I govern my days) but I had a very busy day workwise.
However, I knew in advance that it was going to be busy so I started the day off with a good swim.

This was the only day in the week where Alan would have to motivate himself and he didn't do badly really but then he didn't do much at all. I work from home so I'm aware of what he does (or doesn't) do. Alan is great if I prompt him or if I say "I'm doing so and so, do you want to come?". He is usually very happy being busy in this way.

I would have loved to have spent the morning shopping for plants because I love plants and my garden. The weather here has been atrocious though and the ground is sodden through. Tomorrow I'm hoping that we can do something nice together.

I hope you have a good weekend.

Love Helen
 

mackerel boats

Registered User
Mar 29, 2008
18
west country
Thank you for your message.
I forgot to thank you for your travel insurance reply in my last letter.
I hope you get to enjoy the weekend with your husband and that the weather is better.
Love from mackerelboats!