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Lonely

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
[QUOTE="Janlee, post: 1728870,
I fully understand what you are saying it seems to people who do not understand that to say you miss your partner when they are right there with you but that is the heartbreaking part of it they are not there fully. No meaningful
discussion of anything no planing what to do just the ordinary things that we take for granted when we are all well. I am not aware of any support groups online so must research this for myself as well.
i understand what you mean. my husband was diagnosed with vascular dementia. i feel i lost parts of him like the support , being best friends knowing me so well he could see what was worrying me making me sad etc but although he still tries its diluted but he retains is sense of humour and is still a wind-up merchant. he thinks of me as his comfort blanket.he seems to sleep a lot and as a lot younger wife its hard but love conquors all so they say and we still have happy times
 

Basial

Registered User
Mar 22, 2020
12
I too get lonely as my husband has vascular dementia and struggles to understand words or make conversation now. The simple things like commenting about a TV programme we're watching together are no longer possible as I realise he is not following it at all. I find it all heart breaking. My saving grace has been zoom for carers in which you can see others who are in similar situations; you can open up as much as you want about whatever's troubling you. See if you can find one with carers who are in the same locality as you so that when activities recommence you will have already connected.
Hi Woody. Your situation is so so familiar. I had no idea about Zoom meetings and would really like to know how to join. I have used zoom.
 

Gladys1946

Registered User
Feb 17, 2019
34
I too am lonely. The days of conversing about a news item or TV have long gone. We watch TV but it now has to be something he wants to watch even though i know he's not following it. He sleeps a lot and all the day to day decisions have to be made by me and that feels lonely too. I have a daughter very close by but nobody can truly understand what it feels like. I feel very down and this awful lockdown has had a profound effect on my other half. I wake each day and i often wonder what for! Another day in paradise!!!!
 

Basial

Registered User
Mar 22, 2020
12
Gladys, I totally understand how you feel and my days are spent in silence, exhausted and always worrying that I have forgotten to do or organise, eg insurance, appointments. My husband has suffered from depression for many years so now the doom and gloom are constant. We have to be kind to ourselves even if it's not always possible. I spend time sewing when I can to have some "ME" time. No one can understand unless in same situation. The thought of where things will be in a year's time fills me with dread. No more Happy New Year's.
 

Kapow

Registered User
Nov 17, 2019
30
I have a husband who has vascular dementia and I'm struggling to keep positive during this period. Need someone to talk to who understands.
There are plenty of people to talk to here...including me...and lots of wise advice.
 

Laura40

Registered User
Dec 10, 2017
125
England
Hi, I think strangely alone as in Philbos post above is exactly spot on. It doesn’t really matter if you are surrounded by friends or family or there is just you and the person you are caring for, being a partner to someone with dementia is extrmely isolating emotionally.
it’s the level of daily grief and realisation I suppose that starts from diagnosis. Being on here with others that understand really helps.
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
i agree where i have been in such pain with sciatica, he used to make me smile make me feel loved and he was there with me but the vascular dementia, its been diluted and ive still had to got up and do things [not suppose to stop ordinary activities] but the more people that were in a room the lonlier
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
i agree where i have been in such pain with sciatica, he used to make me smile make me feel loved and he was there with me but the vascular dementia, its been diluted and ive still had to got up and do things [not suppose to stop ordinary activities] but the more people that were in a room the lonlier i feel because for the main time you do the care you are alone and nobody wants to know about constipation, accidents which happen comparing pullups etc unless you are dealing with. its only on here that people understand because theyve been there done it and come out the other side.i appreciate you being there and trying to help each other which is the power of this forum
it
 

vannesser

Registered User
Apr 4, 2016
358
My ho had vascular for just over 4 year know .and most days I am not his wife .i am just some one that comes to (sit and sleep )with him .he as 2 girlfriends one I know as died years a go and last week he told one of the cares that come to dress him .that he loves her and had a nice day out with her (he as not been out with her as unable to walk at moment after coming out of hospital) he spends a lot of time sleeping and if we watch tv all repeats I have to watch him as some of the programs become real to him (people coming to kill us if we don’t get out house or police of the bill coming to arrest us for squiring )it’s some times then I am his wife.then he just talks a-bought his girlfriends there coming and I got to go out .this as been getting word over last 6 month .and it’s upsetting as we been married 40 year .he says he loves me but then talks a-bought girls .good job I don’t have a jells streak like he as
 

Dutchman

Registered User
May 26, 2017
821
Devon
i agree where i have been in such pain with sciatica, he used to make me smile make me feel loved and he was there with me but the vascular dementia, its been diluted and ive still had to got up and do things [not suppose to stop ordinary activities] but the more people that were in a room the lonlier
Hi Jennifer

i went to a dinner party persuaded by my friend a little while after OH (my Darling Bridget) went into the care home this time last year.

I was physically shocked how upset i was and nearly fainted ( no kidding). The loneliness and heartbreak hit me like a hammer . Fortunately they were all kind and took me home.

Loneliness is a curse and we are somehow expected eventually to get used to it. Well, others need to be in our shoes for a while to appreciate it.

God bless and post me ..... you are not alone here

peter
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
thanks pete ive still got him home but you lose them bit by bit. you can see it in their eyes. weve been married 31 years with four grown up children. hes so mellow now and no arguments he doesnt want the stress. the other part being we are in an age gap relationship, im in my 50s and he is in his 70s so even if i had friends my own age, they couldnt relate to my situation.i think because im in pain it makes all of it significiently worse and i feel im not being taken seriously from the medics. im on maximum dose of everything so they cant give me anymore so where do that leave me. every day i cry at least twice.it needs to be sorted out and just 30 mins pain free would be good. sorry ive had more than a rant
 

Dutchman

Registered User
May 26, 2017
821
Devon
i , like you, was desperate for relief and went to the doctor near enough every day. They were very good and put me on anti depressants . Not that they did much good. Also other meds which became useless. I visited a counsellor (Counselling for Carers) but that stopped because of Covid. It did help though.

Bridget became really lost to me last easter when she refused to acknowledge me as her husband and then wanted to escape the house. She now struggles to work out who i am but, bless her, she at least attempts to be nice to me but i’m told very soon forgets me when i leave the care home.

Rant all you like. Cry all you like. I do, even though it frightens me how painful it can be. I shout at the walls, why me, why us, I want you back, I miss you so much and the pain remains.

Iv found that people really don’t know what to say. There’s no experience mostly for them to relate to. And there’s an undercurrent of expectation that I should be getting over it by now. How do I manage that?

Can i give you 30 mins pain free? Build up to it perhaps and for a short while. Understand completely and absolutely that what’s happened to your husband is not your fault, you’re doing your best in a monstrous situation, we make mistakes because we’re human, and you have us here to lean on. We’ve all been through this so we know.

Peter
 

Dutchman

Registered User
May 26, 2017
821
Devon
I have a husband who has vascular dementia and I'm struggling to keep positive during this period. Need someone to talk to who understands.
Hi Basil. Hows it going?

Just unload if you want as i’ve been there and probably experienced all you’re going through.
 

jennifer1967

Registered User
Mar 15, 2020
952
Southampton
hi basil my husband also has vascular dementia and its hard getting through a morning, afternoon etc. it doesnt help there are few visual signs like a broken leg, arm etcmy husband has had it about 18 months now and i can see parts of him lost when i look in his eyes, it is hard to tell others even family how he is as my son says he looks like dad. true he hasnt grown a twinkly horn like a unicorn the grandchildren love. he comes alive when they visit as they dont judge him but are happy for him to just be part of their gang
 

Basial

Registered User
Mar 22, 2020
12
hi basil my husband also has vascular dementia and its hard getting through a morning, afternoon etc. it doesnt help there are few visual signs like a broken leg, arm etcmy husband has had it about 18 months now and i can see parts of him lost when i look in his eyes, it is hard to tell others even family how he is as my son says he looks like dad. true he hasnt grown a twinkly horn like a unicorn the grandchildren love. he comes alive when they visit as they dont judge him but are happy for him to just be part of their gang
 

Basial

Registered User
Mar 22, 2020
12
hi basil my husband also has vascular dementia and its hard getting through a morning, afternoon etc. it doesnt help there are few visual signs like a broken leg, arm etcmy husband has had it about 18 months now and i can see parts of him lost when i look in his eyes, it is hard to tell others even family how he is as my son says he looks like dad. true he hasnt grown a twinkly horn like a unicorn the grandchildren love. he comes alive when they visit as they dont judge him but are happy for him to just be part of their gang
Hi Jennifer everything you have said is so true. My husband was diagnosed 3 years ago and each day is now a struggle for me. The thought process has completely disappeared and there is no communication. Going out anywhere seems pointless and he now asks when we are going home. As you said he comes alive with the grandchildren. The worst thing is when friends say he was alright when they last saw him. Try living in silence 24/7! What makes things it harder for me is that I was told by the doctor that his alcohol abuse probably caused the dementia. I feel guilty for being angry about this but it's in the back of my mind that life could be so different if not for the drink.
 

maryjoan

Registered User
Mar 25, 2017
1,466
South of the Border
Hi Jennifer everything you have said is so true. My husband was diagnosed 3 years ago and each day is now a struggle for me. The thought process has completely disappeared and there is no communication. Going out anywhere seems pointless and he now asks when we are going home. As you said he comes alive with the grandchildren. The worst thing is when friends say he was alright when they last saw him. Try living in silence 24/7! What makes things it harder for me is that I was told by the doctor that his alcohol abuse probably caused the dementia. I feel guilty for being angry about this but it's in the back of my mind that life could be so different if not for the drink.

OMG! I thought I had written this - it is exactly my situation, only my OH loves the grandchildren but does not exactly come alive......
It's the hard slog of one day being exactly like another - I can tell what is going to happen at what time every day - what he will say, what he will do, and then the fact that he totally ignores me other than to attend to his needs.....
Am I invisible??
I spend loads of time looking at properties to rent - anywhere from Shetland southwards - in the dream that I can run away - it's not going to happen but one can dream.
I realised yesterday after receiving a text from my brother who is now in his apartment in Porto Banus for a few months.... that the sheer JOY and LAUGHTER have gone from my life.
I want to have some fun, and anything other than this..........
 

Philbo

Registered User
Feb 28, 2017
838
Kent
I posted earlier in this thread about coming to the end of our "journey" in January.

I thought I would update you with what I consider to be positive news about my life going onward (trying hard not to look backward).

After my wife's funeral, we quickly went into lock-down, which I found really hard, now being on my own. One of her oldest friends (who lives 300 miles away) invited me to join their school reunion group video calls they had started. As it consisted entirely of ladies who had all gone to senior school together, I was reluctant but decided it would at least be some form of human contact.

So being the only bloke, it was a bit awkward but they were very kind and we all enjoyed some great banter. Some of them I knew and after a couple of months, whilst out on my regular walk, I bumped into one of the ladies out walking with her sister (I hadn't known her before the calls).

The three of us sat chatting for a while (found a bar that was doing takeaway coffees etc) and long story short, I have continued to meet up with this lovely lady and are becoming good friends.

After 6+ years of caring and the physical/emotion toll it has taken on me, the sheer joy of discovering a new friendship (albeit still at a very early stage) is heartening. Sure it does raise the guilt-monster thoughts and the first thing I did (with trepidation) was to tell my 2 sons but they were over the moon that in a small way, their dad was clawing his way out of the "black hole" of grief.

How we deal with loss is a very individual thing and I only share my story in the hope that some of you will find some comfort in hearing that good things can come back into your life, often when least expected.

Kind regards
Phil
 

canary

Registered User
Feb 25, 2014
13,663
South coast
Thank you for posting that @Philbo , it gives hope to us who are still in the throws of caring.
I wish you continued luck on your steps out of caring
xx
 

Angtrog

Registered User
Mar 25, 2020
75
Hi my OH was diagnosed with vascular dementia in march, we had planned to do all sorts memory cafes but lock down came and I didnt realize how lonely it would be . More times then any thing else I feel isolated family and friends dont really understand what it is like . My OH spends a lot of the time watching telly and sleeping, cant really have a conversation with him as he cant explain himself and struggles with words He has become the child I never had . On top of everything else we have had a bad week,he kicked off on thursday and become really agressive started going around the house with the hover and calling me lazy ,in the end I managered to get out of the house and go and sit in a neighbours for an hour until he calmed down, I know its the dementia but it still doesnt make it any easier. I feel like he is just disappearing in front of my own eyes. Nobody really understands what it is like until you are actually there doing it !
 

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