• 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.

the tears started and won't stop

tuffydawn

Registered User
Mar 30, 2015
123
years of conversations fading to nothing now and years of no affection. today a simple cuddle from a old friend who i havent seen for a long time started the tears and now they wont stop I didnt realise how deeply lonely i was for a cuddle and a hug I havent cried in a very long time and now they just keep flowing
 

Ernest

Registered User
Jan 23, 2018
84
For the first time in 35 years, for any length of time, I'm on my own too. Now the clocks have gone back I really miss my OH. It's not nice coming back from seeing him in the CH to a dark, empty house having to leave him there. Like you, tuffydawn, conversation, which never was very forthcoming, is virtually zilch !! When I get up from sitting with him, to come home, I try to give him a hug and a bit of a cuddle and it usually ends up with him pushing me away, telling me off for pushing him !!! We're all with you !!
 

Frenchie1

Registered User
Jan 7, 2018
11
How I feel for you TuffyDawn - that was how I felt too when an old male friend gave me a hug - I realised I had not touched anyone for such a long time. It is a very lonely place to be and nothing seems to compensate for that lack of affection and touch so my heart goes out to you and wish I could give you a hug to let you are not alone. This is the heartbreaking side of dementia that no-one talks about much - people concentrate on the practical things, the stress of managing delusions and whatnot, but no-one tells you how to cope with the lack of affection, warm loving conversations and a laugh with a partner that used to be part of your life that you took for granted.
what now seems so long ago.
Cry and cry some more TuffyDawn - if there is anything to cry about, this is surely one of those!
 

Sad Staffs

Registered User
Jun 26, 2018
678
years of conversations fading to nothing now and years of no affection. today a simple cuddle from a old friend who i havent seen for a long time started the tears and now they wont stop I didnt realise how deeply lonely i was for a cuddle and a hug I havent cried in a very long time and now they just keep flowing
So sad for you @tuffydawn
I know how you feel. It is so hard, so lonely. You are right, it is a very lonely existence. Very rarely, when I get my husband out of bed, he will ask me to sit by him. I do get a bit of a hug, but it’s odd, it’s not him, it’s not how he used to be. I think his existence, his mind, only really considers himself. I think I’m now just a convenience, someone who looks after him and cares for his every need.
I find crying is helpful. It’s not that I feel sorry for myself, it’s that I cry for him, for the man he used to be, for the man who so obviously loved me, for the wonderful life we had together, and I cry for the future which frightens me.

We are here for you. Take comfort from your friend, and from all the lovely friends on here who understand...
With love, B x
 

maryjoan

Registered User
Mar 25, 2017
1,397
South of the Border
I am another one in this leaky old boat.

I was sat alone, eating my cornflakes the other morning, when I finally realised what is the matter with me, now that my OH has dementia.


My heart is broken

simple as that
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
years of conversations fading to nothing now and years of no affection. today a simple cuddle from a old friend who i havent seen for a long time started the tears and now they wont stop I didnt realise how deeply lonely i was for a cuddle and a hug I havent cried in a very long time and now they just keep flowing
It's so sad. I know how you feel. I think we all know how you feel. It's a lonely existence. My husband gets human kindness & contact from his PSW's (Personal Social Workers), but who gives the caregivers the kindness & human contact that we so desperately need in order to go on. The respite is fine and we need it but where is the human contact. Who holds our hand, or gives us a hug or a shoulder to cry on. When people find out about this illness they very quickly disappear (through no fault of their own)

My heart goes out to each & everyone of us. MANY, MANY CYBER HUGS TO ALL THAT GO ON FOR INFINITY.
 

Philbo

Registered User
Feb 28, 2017
753
Kent
Big hugs to you ((tuffydawn)) - life can be so lonely.

Even though my wife is still at home with me and our two sons pop in regularly - even though I am still able (at present) to get her down to the pub at weekends to enjoy the company of our friends - even though I am able to get a day and 2 half days of respite each week - I STILL FEEL LONELY!

I recently had a week's holiday in Majorca, when my wife went into respite. I joined a friend and his wife who was celebrating his 50th birthday. Their company was good and it was a well-earned break but it really hit home - my lovely wife should have been there with me!

Married for 47 years, it was the first time we've been apart (apart from work trips before I retired) and it really hit home just how much I miss the old Linda.:(

Best wishes
Phil
 

Unhappy15

Registered User
Feb 7, 2015
130
Hello Tuffydawn,
and everyone who has replied. We all understand how you feel and at times the loneliness almost crushes you.I too have found that TP is a great comfort, among people who all understand the frustrations and sadness of losing the essence of the person you are caring for.
My husband is now entering his 4th year of being in a care home and my friends ask me why I still go every day to visit and to be honest it is not always for him, it is for me.
His dementia has robbed him of his speech and I am not sure he knows who I am but he is like a child, he wants to be kissed and cuddled,so that is why I go every day, someone kisses me and cuddles me and I can pretend he still knows me.That gets me through each day.
As Maryjoan writes the truth is simple most of us are just heartbroken.
Take care and love to you all.
Kathy
 

kindred

Registered User
Apr 8, 2018
2,344
Hello Tuffydawn,
and everyone who has replied. We all understand how you feel and at times the loneliness almost crushes you.I too have found that TP is a great comfort, among people who all understand the frustrations and sadness of losing the essence of the person you are caring for.
My husband is now entering his 4th year of being in a care home and my friends ask me why I still go every day to visit and to be honest it is not always for him, it is for me.
His dementia has robbed him of his speech and I am not sure he knows who I am but he is like a child, he wants to be kissed and cuddled,so that is why I go every day, someone kisses me and cuddles me and I can pretend he still knows me.That gets me through each day.
As Maryjoan writes the truth is simple most of us are just heartbroken.
Take care and love to you all.
Kathy
with you completely on this. I visit most days and why not? where else would I be? On a cruise? on a coffee morning? doing nordic walking? This is the most valuable and loving thing we can do. What else makes sense of our lives. I do understand, I so do.
with love, Geraldinexxx
 

marionq

Registered User
Apr 24, 2013
6,016
Scotland
I cried so much at an earlier stage of this illness that I don’t have many tears left. In fact it scared me so much that I cried at the first nice word anyone said, that I knew I had to stop. Heartbreak indeed. One very nice lady reminded me of my duty as a wife as she had nursed her husband through three years of cancer. We are about to enter Johns seventh year since diagnosis and I defy anyone to keep upbeat year after dreary lonely year.

Ah well Christmas is coming.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
I, too, am surprised when people ask how often I visit my husband. Where else would I be? I am doing some other things, piano, tai chi, WI, but don’t all married couples spend time together each day? Maybe when he doesn’t know who I am or whether I’m there or not, maybe then I won’t visit every day. But I’ve been widowed before...and you are a long time alone. While I have him here, I will visit. @tuffydawn, I have found that once the crying starts, it lasts a few days and then passes...until the next time. It does you good though. It was once thought that tears had a healing property, and there were even little vessels to collect them. I’m not sure about that, but I do know that I feel better after crying. Definitely more healthy than keeping it all in. It is very lonely crying alone, and although we cannot give you a physical hug, you can always share your feelings here with people who really do understand.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
I cried so much at an earlier stage of this illness that I don’t have many tears left. In fact it scared me so much that I cried at the first nice word anyone said, that I knew I had to stop. Heartbreak indeed. One very nice lady reminded me of my duty as a wife as she had nursed her husband through three years of cancer. We are about to enter Johns seventh year since diagnosis and I defy anyone to keep upbeat year after dreary lonely year.

Ah well Christmas is coming.
My late husband had cancer and I was his carer for years. I have found caring for a spouse with dementia MUCH harder.
 

elvismad

Registered User
Jan 8, 2012
289
In the last 18 months I have lost my Uncle, Aunt and Father (none to dementia). Mum battles on with mixed vascular dementia and alzheimers having been diagnosed in 2011. I had been feeling very unsettled and not sure why till I realised there is no one from that generation left for me and I miss the phone calls and the catch ups. Mum really doesn't know me most of the time. I guess that's a blessing of some kind as she is does not miss me now if I am not there. Conversations are virtually non existent and mum cannot follow books or TV. She tires easily and sleeps a lot. Some music still registers and very occasionally mum will sing along for a few lines. I sit and watch her breathe and wish I had paid more attention when she cooked. It was just so easy to phone and ask her how to cook something...........
 

Janie M

Registered User
Jun 12, 2018
68
My eyes haven’t stopped leaking for a couple of days @tuffydawn ! Reading all these posts helps to know we’re not on our own, but hell, it’s lonely ☹.
On Fridays I usually meet up with some of the girls I use to work with for about an hour for lunch, but today wished I hadn’t bothered. There’s 4 of us, late 50’s.....I’m the oldest at 61! But their husbands are all fairly healthy. One of the girls kept on about her Christmas plans, I just wanted to scream. Not jealous, but how can any of us now live the life like that. Anyway I kept smiling but boy, did the tears flow when I got home. Not taking much today...... xx
 

Caz60

Registered User
Jul 24, 2014
253
Lancashire
I too am the same ,having had a good few days happy well fairly a visit to his nursing home has put me on a downer .
Nothing different just a heartfelt reminder that I'm on my own .I have been very fortunate to have found new friends all in similar circumstances and have got a life now but the sadness and the fact that I have to go on without him is overwhelming. I too am heartbroken......but as they say life goes on and the sadness is not as often or as distressing since I only started visiting twice a week ,I was visiting each day and after kind words from the nurse and care home manager I was brave enough to let him settle in his new world .We will have been married 50 years at the end of this month and I cannot decide exactly what to do about it .I've considered nothing ,a small family get together at the home or simply going out with my friends and all of them will make me cry .Hubby will not realise what it's all about ...im the one to suffer so somehow it will work out .
I'm sorry for everyone in this position but we have to carry on and do what we feel is right for us .God bless all of you
 

pixie2

Registered User
Jul 21, 2018
39
I know. M
I, too, am surprised when people ask how often I visit my husband. Where else would I be? I am doing some other things, piano, tai chi, WI, but don’t all married couples spend time together each day? Maybe when he doesn’t know who I am or whether I’m there or not, maybe then I won’t visit every day. But I’ve been widowed before...and you are a long time alone. While I have him here, I will visit. @tuffydawn, I have found that once the crying starts, it lasts a few days and then passes...until the next time. It does you good though. It was once thought that tears had a healing property, and there were even little vessels to collect them. I’m not sure about that, but I do know that I feel better after crying. Definitely more healthy than keeping it all in. It is very lonely crying alone, and although we cannot give you a physical hug, you can always share your feelings here with people who really do understand.
I know I was shocked when my friend asked if I visited mam. We lived together, holidayed together, am I just supposed to leave her!. I cry even at my age because I'm not getting hugs from mam anymore and we were so close
 

Justmary

Registered User
Jul 12, 2018
82
West Midlands
My eyes haven’t stopped leaking for a couple of days @tuffydawn ! Reading all these posts helps to know we’re not on our own, but hell, it’s lonely ☹.
On Fridays I usually meet up with some of the girls I use to work with for about an hour for lunch, but today wished I hadn’t bothered. There’s 4 of us, late 50’s.....I’m the oldest at 61! But their husbands are all fairly healthy. One of the girls kept on about her Christmas plans, I just wanted to scream. Not jealous, but how can any of us now live the life like that. Anyway I kept smiling but boy, did the tears flow when I got home. Not taking much today...... xx
Yes, it is so lonely... I met up with friends today and I'd looked forward to it so much. It's so nice to have a conversation with someone, have a laugh, share ideas, all the things I used to do with my husband and now he can no longer do. But when they talked about their plans for future events with their husbands I just sat quietly...it's just so lonely.