Feeling Lonely

[stikwik]

Just wanted to 'speak' to someone before I go to bed.

I've been feeling a bit isolated I think, the last 2 weeks or more, partly due to not mixing with any friends in our situation. I missed the last carer group due to Steve and my daughter being ill that day, and already once a month is not enough for this group.

I try searching TP posts most days and can find nothing that resonates, no-one seems to be at all similar to me, which feels weird. (And of course I'm not 'getting at' anyone for that, it just 'is'.) How can this illness have so many similarities yet so many disparities? I can't think what to write myself either.

My day to day life is going OK, with the odd upset dotted here and there, but I bounce back OK (maybe not as quickly as before). Although things are far from good, I still feel fairly strong. But I never know how white my knuckles are until they graze, so am not sure that's a good indicator.

Thanks for listening. I know you're here, I just don't know what to say.

 

[Grannie G]

I`m sorry you find it hard to identify with anyone specifically Nikola, you do sound very lonely.
There are other younger members on the Forum, not necessarily with husbands with FTD but still isolated in their own way and with their own specific problems.
But what might help is if you could see a common denominator which is dementia in whatever form it takes.
Are there any other support groups in your area other than the monthly one you attend?
I wish I could think of something to give you some hope. xx

 

[lesmisralbles]

Stilwik

I try searching TP posts most days and can find nothing that resonates, no-one seems to be at all similar to me, which feels weird. (And of course I'm not 'getting at' anyone for that, it just 'is'.) How can this illness have so many similarities yet so many disparities? I can't think what to write myself either.


Stitwik
Do what I did.
Start your own thread
None of us are simalar
But we are all the same in the fight against this illness.
Barb XXX

 

[Margaret W]

Hi Nikola

Barb suggests starting your own thread - I am a bit thick on these things but I think you have already started it.

Why not just post a few words every few days (or every day, or 10 times a day if you need to) to let us know how the day has been. Even just chit-chat is good to get people talking.

As you known, the illness is different for everybody, but let us know how it affects Steve and someone will recognise your situation and be able to help. Even those of us whose situation is different can often offer suggestions - or just some support.

Good luck

Margaret

 

[Helen33]

Hello Nikola

Feeling lonely is a feeling that has been a passing acquaintance throughout this illness for me. Less so now because of the connectedness I feel with other TP members. I too missed that last support group and in any case it is not the kind of support that alleviates the lonliness! I am dreading winter when it is harder to get out and about with Alan, or by myself when I have a sitter I try not to think about it in advance but occasionally it crosses my mind.

I know you're here, I just don't know what to say.

But when you are able to 'say' Nikola and share something of yourself and your situation, it is wonderful. I remember one of your last threads about "things we are grateful for" and everyone seemed to love it. I think this is part of your personality coming through (lots of positiveness but having to face progressively challenging situations and experiences). The illness is unique to all people that have it and all people who care for them but the similarities are that we all have to face these progressively challenging situations whatever they are and however they come. The fact that we all do it in different ways and with different attitudes is bound to be but we all have to do it somehow. Perhaps lonliness is part of it all?

Sorry if I am going on a bit but I think I do have a tendency to go on when I care - I think it's my way of trying to reach out to you

Love

 

[imp]

You are not on your own Nikola this feeling of loneliness affects us all to a certain extent I think and because we all suffer from different symptoms in our loved ones we do find it difficult to communicate. Our friends very rarely visit now, the reason being, I believe is that they do not know how to cope with this man who is so different from the one they knew. We never go out now except for medical appointments and I find summer the worst to cope with when everyone seems to be going on holiday. I feel for you and wish you well, you will be in my thoughts. Iris

 

[Sam Iam]

Hi Nikola,
Dont really know what to say except that I felt so sad reading your post and I wanted to send you a HUG XXX.
Try posting.... I WOULD LIKE A CHAT. We are always up for this

 

[Bookworm]

Lonely?

Several people have come to say hi - so I hope you are not so lonely - my Hb seems to have late onset FTD - loneliness is a common theme for me too. I am here on TP to help, to listen - but especially to seek friendship and companionship. Please don't feel so lonely - several people are thinking warm thoughts of you tonight - please concentrate on that tonight and not the difficult path you (we) tread

 

[stikwik]

So much warmth and care, thank you all. I do appreciate that. If I was Halfwit, I would now say "hmmmmm..." (If you understand this reference, you're as guilty as me, and if not, think yourself lucky ).

Sometimes I can't be bothered to think and write, sometimes I don't have enough time, sometimes I worry about posting then not being able to respond to lovely messages very quickly (with typing, like emails and texts, things can be misunderstood and inferments gleaned - I do make up words I warn you ) so don't want to risk people thinking I don't care after their efforts to support etc.

Yes, I can be one of those 'over-thinkers'. But sensitive rather than neurotic. I'm good at being objective, and am a good listener.

So now I reckon you may see a barrage (sp?) of threads from me as I want to say lots - you have been warned . But if I then don't have as much time to reply immediately please don't think I'm ignoring you, I have gluts and lulls time-wise.

Thank you once again.

Nik xx

 

[Izzy]

Hi there. Can't add much more except to agree that I think feeling lonely comes with the territory. TP is great to browse through and to dip into when we can. I feel that my own husband's situation is much removed from the situations of others but I have found that this makes little difference on TP. I have found sound advice and also a lot of fun since using the forum reguarly. I see from your profile that you are 21 years younger than your husband - so am I. We have something in common although I am 58 and my husband 79 next birthday. Hope you visit again soon. Izzy

 

[Skye]

Hi Nikola

Others have said it -- just talk!

I'm similar, in way, because no-one on the forum has the same form of dementia that my John has, but the connection is there, because we are carers, and we all suffer from stress and loneliness.

We come here for advice when we need it, but also for support and companionship, because this is the only place where we meet people who understand our feelings.

Start your thread, tell us about you and Steve and your daughter. People will respond, I promise you, and you'll soon find you have lots of virtual friends.

Love and hugs,

 

[Bookworm]

Hi there. Can't add much more except to agree that I think feeling lonely comes with the territory. TP is great to browse through and to dip into when we can. I feel that my own husband's situation is much removed from the situations of others but I have found that this makes little difference on TP. I have found sound advice and also a lot of fun since using the forum reguarly. I see from your profile that you are 21 years younger than your husband - so am I. We have something in common although I am 58 and my husband 79 next birthday. Hope you visit again soon. Izzy

Yes Nik - similarly - although I am older than you and sl. younger than Izzy (not much) I am 15.5 years younger than my husband.

 

[sad nell]

just wanted to say thank god we have all found TP, because i do not think i would have survived AD without you all thanks Pam

 

[Izzy]

If I was Halfwit, I would now say "hmmmmm..." (If you understand this reference, you're as guilty as me, and if not, think yourself lucky ).

Sadly I understand this reference!!!!!!!!! 'Oh brother'!!!!

 

[Helen33]

Hi Nikola

I have gluts and lulls time-wise

ditto. With regard to messages and inferments, we are all in the same boat and only very occasionally have I seen people take offence. In the main I think TP is made up of genuine people all with a desire to manage and offer the best we can for as long as we can.

Personally I find this forum the ideal support for me because I can dip in and out as and when it is convenient. If I offer support it doesn't have to take more than a few moments - unlike conventional relationships. I actually have very little time or energy for conventional relationships as it is less acceptable to dip in and out.

Love

 

[panpam83]

lonely

Put my husband in the carehome....they said he was fighting to get out.I would happily run over there to take him out....he broke my phone,drained water out of the koi pond ,at night,and was sitting in the neighbors car,thinking ,it was his.Put him back in ,and now they are sending in the big guns,..the phychiatrist,to adjust the meds.Now they tell me not to take him out because it confuses him.i cryed all day and night.I'm thinking i might need the psychiatrist.oh my goodness it is so hard to let go of the best thing that ever happened to you,in your life.I going to join a support group,as i am hitting a rough spot.i also thinking of getting a little puppy.indeed,this is a lonely thing.never knew how hard it would be... .this website has been a blessing.