If I get lonely, how must Mum feel?

[Kathleen]

I am having a very sorry for myself evening.

Husbands gone out for a couple of hours, youngest is in bed and I am feeling a bit sad and lonely.

I visited Mum today and she was tearful, very rare for her. She looks so lost and lonely today and seems to be looking for something or someone, but hasn't the words to say what or who.

Hugs and kisses were exchanged and she looked at me with such a sad face, not even one smile today, that's never happened before.

I wondered if Mum ever feels lonely and feels that awful emptiness that comes with it, feeling out of the loop and excluded, just looking in at others going about their lives.

Sorry this is such a self-indulgent post, but its how I feel today, I am sure tomorrow will be better, I'll pop in on Mum again tomorrow and make her smile somehow!


Thanks for listening

Kathleen

 

[bel]

if i get lonely --

Dear Kathleen
I can understand your feelingthis way you are only human i cant answer your question properley all i can say from my own experience with hubby is in his words as happy as a sand boy he i think is not that advanced yet but it seems to me not totally aware we have had a lot of problems not AD related and it is as if he dosent feel things the same i like you worried and probably still will about how They feel but i like to think cos it helps me that there is some sort of cotton wool type affect to hubbys illness that is not allowing him to hurt or realise too much knowing how much this is hurting me i worried big time how he must feel
Love Bel x

 

[Helena]

i have been told by more than one person who knows plenty about dementia that actually dementia patients are oblivious of the problems /stress etc the rest of us are suffering ........the illness cocoons them from reality and that if they are put in a care home etc or cared for by relatives they survive even longer because they have nothing to worry themselves with

 

[Áine]

I wondered if Mum ever feels lonely and feels that awful emptiness that comes with it, feeling out of the loop and excluded, just looking in at others going about their lives.

hi kathleen. it's something I wondered over and over about dad ..... and never really settled to any clear answer about. i tried to steer some bearable line between thinking that he didn't feel anything because the dementia had taken so much of him away ......... and the other end of the spectrum of assuming he felt the same pain that I imagined i would feel in the same situation.

i think Helena makes a helpful point about people being cocooned. to some extent i think that's true. on the other hand, i've seen dad very distressed about stuff, clearly understanding enough to be distraught ...... but not enough for me to be able to comfort him in any rational way. those times were pure hell.

perhaps mum is suffering and there just isn't anything you can do to make it right. my experience is that that is the last thing that i want to believe ........ but nevertheless it is possibly true. sometimes despite all the love you have, and the desperation to make it OK, you just CANT do it. The reality is that this is a b****dy awfuk illness and we can;'t make it OK.

try to look after yourself
wishing you peace
Áine

 

[Lila13]

My mother was aware and distressed.

Of course I don't know if she'd have survived longer if we'd managed to move her (I do know we'd have blamed the move and therefore ourselves for putting that pressure on her.)

 

[Kathleen]

Thanks Aine

I have always tried to view Mum's previous anxiety, delusions and bizarre behaviour and actions from her viewpoint and somehow everything made sense to me.

Until the last few weeks she could speak and understand speech well enough to allow us to understand what she was upset or happy about, the progression of AD has now taken that away from her.

From time to time, when a fellow resident says or does something out of the ordinary, she has looked at me, and without a word, I know what she is thinking.........Look at her...........what a weird hat........how rude.......!!!

This last episode has me completely at a loss, there was not even any eye contact, just a blank, sad red-eyed stare with hopelessness written all over her face.

I just need to learn to accept that Mum has been pulled one more step away from us and try to close the gap by finding a way to read her signals better.

I know well enough that this may well be a one-off event, but it has shaken my confidence that Mum will be calm and happy until the end of her days..........a belief that somehow made everything a bit more bearable.

Kathleen

 

[daughter]

Hi Kathleen,

I am sorry to hear about your Mum being upset and understand how it makes you feel. I have been feeling quite the same about Dad recently, he isn't crying but just seems so low - every time I visit he is unshaven, food round his face and looks really fed up. Today he was still unshaven but had a clean face (as if that really matters in the scheme of things!) and was brighter than he's been for quite a while. I will never be able to say he's tip-top of course, but as things go he was in good spirits today - sometimes smiling, talking, connecting, joining in with rolling the ball across the table to each other, he even read "joker" from one of the playing cards.

So just when you might be thinking there will be no more happiness, a good-ish day comes along again. I hope you and your Mum will have one very soon.

Best wishes,
Hazel.

 

[mel]

Hi Kathleen
I hope things are a little better today.
Mum lives with us and at times I feel desperately sorry for her....she is surrounded by her daughter,son in law and grandchildren but never appears to be really happy....she always wants to "go home" and if not that then she always wants to go out....I asked her why she wants to be out/"home" the other day out of sheer desperation really....she just said she was waiting for" something to happen",for something" to come along "but of course didn't know what.She always gives me the impression of having a feeling of "not belonging" in spite of all of our efforts to include her.......It's all so very sad...
You mentioned "eye contact " on your mum's part.....I thought I'd mention that one of the ways I cope with mum's illness is for me to avoid eye contact with her at times....otherwise I find the sadness in her eyes too overwhelming.......
Sorry.....I was meant to be cheering you
Love
Wendy
x

 

[Kayla]

How must Mum feel?

My Mum has always been a worrier and when she had a new carpet fitted, she worried about putting out the old one for the dustman. I told her that I'd sort it out but she worried herself silly. I had to stop her helping me! It took me five minutes or so to take all the scraps of carpet and underlay out of the garage and Mum was surprised how easy it was.
Yesterday she was worried because she thought she was twenty and was being sent to an Academy School instead of her brother, and no one had told her! It took me ages to sort out a non- existent problem and she also thought I'd just got back from the USA.
I felt very confused by it all! Maybe worrying is just a life-time habit.
Kayla

 

[Grandaughter 1]

I too have been worrying about how my Grandad is feeling inside. Some of my family say he is totally unaware but if he is, why does he get agitated and upset about things. He managed to read a letter about daycare and get angry enough to say he wouldn't go!

It is hard as you're torn between considering their feeling and doing what's best for the family as a whole.

 

[Tender Face]

Oblivion

Kathleen, hope by now things are looking brighter for both you and mum.... and if it helps at all - I have 'sorry for myself' mornings, lunchtimes, middle of the nights etc etc etc ..... I think it's allowed!!!! Trouble is (or good thing is) I can come to TP, shout at my hubby, make a cup of tea ... whatever it is I need to make things OK for a while.... our loved ones can't always can they?

I see Helena's point about being 'oblivious' - but wouldn't it be wonderful if as a sufferer, 'oblivion' came in stages and shut out the hurts and fears and loneliness first and left only 'happy things' in the memory bank? This disease hasn't even got the good grace to go about its business in a decent way, has it?

I can only hope that your mum (as mine) is calmer and happier than she may often appear on the 'outside'.... we can't know, just hope...... surely there is some justice in this unjust situation.....

Love, Karen (TF), x

 

[Kathleen]

Hello All

Mum is happier now, thank goodness, even smiling again.........phew! OK, she was looking for her Mum in a flower pot and was put out that she couldn't find her, but apart from that, she has had a lovely afternoon, bless her heart.

This site has got me back up from the gloomy place and there is light at the end of the tunnel again.

At the moment, my brother is trying to cause aggro again and my lovely sisters equally lovely husband is undergoing chemotherapy and is not feeling too good, so all in all, I have a lot of supporting to do.

I really feel I get strength from you lovely people and hope I give some to others from time to time.

Thank you all so much, from the bottom of my heart.

Kathleen
x