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No connection now

Bikerbeth

Registered User
Feb 11, 2019
1,140
Bedford
I think it is even lonelier when you have a person around but as you say no connection. Thinking of you but lacking anything useful to add
 
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Olliebeak

Registered User
Sep 13, 2014
132
Buckinghamshire
As a fellow midow said to me about having a partner with dementia - it’s basically bloody lonely. Weekends are often the worst too. Add a hug from me to the pile.x
 

jenniferjean

Registered User
Apr 2, 2016
739
Basingstoke, Hampshire
I'll add my hugs to the pile too.
At least my husband talks to me - or should I say at me. It's the sort of talk you'd get from a two year old. He'll look out of the window and tell me what he sees. Sometimes it's true, sometimes he's making it up.
Yes, what I miss is real conversation.
 

Hazara8

Registered User
Apr 6, 2015
416
OH is losing all his skills and most of the things we used to do have gone out of the window because he is no longer able to do them. He is at the stage where he just wants to sit on the sofa all the time with his android tablet. He doesnt want to go out, he doesnt want to do anything and all empathy is gone. In the evenings we used to watch TV together and even though most of the stuff was a repeat, we could still watch it together. Just recently he has stopped watching TV. If I turn it on he doesnt watch it, even if it is something he would have once wanted to watch - he just carries on scrolling through his tablet.

It seems that with that gone there is now no longer any connection between us at all - that was the last surviving thing. Today he has only said two things to me. One was to ask what time he should have his eye drops (I put them in for him) and the other was to ask what time dinner would be..I am so lonely here. Today I have only spoken to answer him as he cant process conversation and I havent even seen anyone else.
This is precisely what is so often missed in the perception of dementia as a whole. The very real and tangible aspect of communication which keeps an equilibrium on track. We can tolerate sickness and someone being unwell, just as long as we maintain interaction I.e. empathy, comfort, the equilibrium of simple to and fro of chat. When this becomes an absentee the whole nature of the relationship changes. Not the love of course, because that overrides even the scourge of dementia. But that "loneliness" is much like the moment you stand amidst the bustling life of a major city with all the ongoing activities and the normality of daily life happening all about you, and yet you cannot engage, because the loved one you cared for is no longer there, no longer a part of your physical and mental norm of daily life. That part of you which is them, is removed to memory, contained as such, because the norm of engagement has been compromised or simply ceased to be. This is what others cannot see, even in our own family and yet it is a fundamental challenge of significant proportions because it is in fact your life as it stands because you don't abandon anyone, you don't delegate the reality to anyone else , you adapt and that is a challenge in itself. Despite everything, and despite the always very poignant fact that when things spoken of and visualized and debated actually HAPPEN to oneself, you will come equipped with the armory of that debate, the understanding of others who relate through actual direct experience rather than clinical explanations and above everything, the power of love in essence. That thing which cannot be explained nor set down nor harmed nor in any way influenced despite the immense pain which can evolve out of this journey through dementia, because we are emotional beings and we are not perfect. Only you will ever know how you truly feel or what each day brings by way of the ongoing challenges. But by the same token, you have given and continue to give solace to so many others who come to TP in your expressions of understanding and empathy. That tells me that you will be well equipped to weather the "dementia storm" albeit a true challenge, because you are a witness to its devious nature and the way it claims the one you know and love, but which can NEVER claim the love which remains above all else and which remains deep within the loved one you care for, if hidden behind the mask of indifference and silence. For dementia is an imposter......love manifest in humanity, is not.
 

northumbrian_k

Registered User
Mar 2, 2017
1,005
Newcastle
Dementia forces a lonely path on so many carers. You have given me good advice @canary and I'm sorry to hear that you are struggling. It is hard when that sense of connection is lost and one starts to look for the merest crumbs of engagement. You have the best wishes of all who know what that is like.
 

Tea and. toast

Registered User
May 8, 2019
57
Canary , I am sorry to hear about the latest development with your OH. I hope today is a better day for you. Sending you a hug. Take care.
 

Vic10

Registered User
Feb 18, 2017
112
Canary, you have been so supportive whenever I have posted, I thank you for that.
Your OH and mine sound to be in a similar place (although no tablet for my OH).
It’s a lonely place. Since going out isn’t an option any more I have started to make cakes, gives me something to occupy me (when I’m not cleaning etc!).
and delicious to eat!
Music, strawberries and cake!
Sending huge hugs. Take care.
 

annielou

Registered User
Sep 27, 2019
1,023
Yorkshire
Really sorry to read this, Its hard enough when loved ones still talk but cant always follow conversations but not to even have them do that must be so much worse. Like being on the edge of their world but not being allowed in even though you're the one keeping their world turning. Its not their fault but I doubt that makes it easier. So sorry you are lonely x virtual hugs (x)
 

Buntykins

New member
Feb 5, 2020
6
It really is very sad - and I fully understand as I have experienced it myself several years ago but now I let him do what he wants as he sits in his chair and I put TV on that I am interested in. He seems more contented and knows that I am there beside him. Of course I really miss sharing opinions but at least I can relax knowing that he is safe and contented in his own way. It is a lonely life as we are housebound, but at least the Computer is my lifeline for things I need, contact with others, shopping on-line - and sometime a shoulder to lean on.
 

canary

Registered User
Feb 25, 2014
12,183
South coast
Wow. Just - wow!
I had not expected so many replies, I was just having a moan. I have obviously tapped into a common experience.
There are too many of you to reply to individually, but I thank you all from the bottom of my heart.

Mum never stopped communicating, even if most of what she said was confabulation and/or confusing, but she retained her personality right to the end. This is so different and at times I feel so lost, so I am glad you are all there.
 

Pete1

Registered User
Jul 16, 2019
708
Feel free to have a moan anytime @canary! What a difficult thing to accept and try to come to terms with (can you ever really?). Stay strong.
 

JBK

Registered User
Feb 25, 2018
45
Well after weeks of talking "nonsense" & apparently not knowing who I am, my Husband told me I was the best person ever & loved me very much. He then gave me a great big hug & kiss.

I am in bits
 

White Rose

Registered User
Nov 4, 2018
533
Well after weeks of talking "nonsense" & apparently not knowing who I am, my Husband told me I was the best person ever & loved me very much. He then gave me a great big hug & kiss.

I am in bits
Ahhhh that's so lovely. Very rarely nowadays my partner will tell me he loves me or give me a hug, nice when it happens.
 

White Rose

Registered User
Nov 4, 2018
533
Music is my cure for most things but like you say white rose, is MUST be very loud, every time oh goes to his day centre it's the first thing I do, I've warned my neighbours when its loud music day, it's amazing therapy. If I have music on when oh is there he always switches off.
Yes has to be loud and preferably something you can dance 'like nobody's watching' to. I'm lucky that my partner generally enjoys music and if he's in the mood he'll sit quite happily listening to his CDs.
 

LizzieM

Registered User
May 6, 2019
47
Well after weeks of talking "nonsense" & apparently not knowing who I am, my Husband told me I was the best person ever & loved me very much. He then gave me a great big hug & kiss.

I am in bits
 

Vitesse

Registered User
Oct 26, 2016
187
My husband is very affectionate these days, but then he doesn’t know I’m his wife, so I must be a new woman in his life!!
 

Jale

Registered User
Jul 9, 2018
442
Sorry Canary, no wise words but I didn't want to read and run - sending you hugs