My wife has Alzheimer's and this how I feel

[sdmhred]

What a beautiful summary @Rehanna

My boss has just asked how I am (over text) - OK I replied!

Im so pleased you can elaborate here - we‘re all here for you and Penny.

Much love.

 

[Rehanna]

I really am one of the lucky ones as those people who ask how my husband is have been with me since his diagnosis and his cardiac arrest. They have never met him but their concern is genuinely for me and I can always give an honest answer. They have all experienced major losses and I don’t have to pretend that everything is OK.

Thank you.

 

[Rehanna]

What a beautiful summary @Rehanna

My boss has just asked how I am (over text) - OK I replied!

Im so pleased you can elaborate here - we‘re all here for you and Penny.

Much love.

OK is a great word isn't it, says so little but hides so much!

 

[Rehanna]

Such a heartfelt post @Rehanna I’m sobbing as I read it. People ask me all the time How is he? But they don’t really want to know do they. They want everything to be fine and lovely. They say I’m amazing because I take him about everywhere with me but they don’t see what happens at home - I’m lucky that he still highly functional and as long as I’m around things are fine.
I’ve started saying to people “ well it’s progressing and it’s hard” and some don’t know what to say ….maybe they will stop asking ….it’s lonely. Hold on to those precious times when she does respond to you and know that you have done your best for her.
Look after yourself too. My thoughts are with you x

I could almost have written this myself (although not as beautifully, I'm sure). I think you echo the experiences of so many on here. How is mum? they ask..."well, she's still lying in the same bed she's been in for 2 years, I think she's ok, but she can't tell me, she doesn't smile and rarely opens her eyes, so how do I know?" I'm not sure that's the answer they want to hear. Very rarely, someone asks how 'I' am and that would be so nice. Yes, I feel scared and panicky when I visit the home and then like you I think 'how can I have left mum locked in here for the last 3 years?' No matter how hard we try the guilt is relentless. We know we are doing the best we can for our loved ones, but it is so emotionally difficult.

Yes can't remember when anybody asked me how I am

 

[scotlass]

Rehanna, I read your post with tears in my eyes, when people ask how my oh is ..I just say...he's not too bad....because that's how I see him at the moment...he can still do things...but I know as time passes things will change. it makes me sad that some of his nieces and nephews , who don't live too far away, don't even phone to ask how he is ...it's the ones who live farthest away who visit...we don't want to put our loved ones in a care home, but it's not a case of wanting to....it's because they need more care than we can give...and it's because we love them that we have no other choice we want them to have the best care possible...it's obvious that you love your wife very much,,,you take care of yourself and do what makes you happy...don't feel guilty...every person here knows just how you're feeling x

 

[Rehanna]

Well hello and welcome from me Rehanna and I'm sure us all.
Sadly serious medical operations and AZ don't go together too well, sorry to say that that's my experience.
Something over 10 years on the site here caring for both my now late wife and mum too all 3 of us former NHS nurses, operation with any form of dementia can be risky.
A hip replacement is a big operation and mobility and physiotherapy after too, as I say I'm sorry to say I agree with the medics on this one, others may have a different opinion. K

It's just that privately surgeons saw no problem, only I was too late. Wished the original GP could have mentioned it.

 

[Rehanna]

My heart breaks for you @Rehanna and for us all. When people ask how John is I know they are asking with the best kindness to me but I can't answer with anything other than "he's OK" because I just can't cope with sympathy and would dissolve if I had to answer more honestly. Though... thinking about it, he is relatively OK - he has very little comprehension of what is going on - it is me that is struggling as I look towards the rest of our lives and the mountain I'm trying to climb.

Rehanna, I read your post with tears in my eyes, when people ask how my oh is ..I just say...he's not too bad....because that's how I see him at the moment...he can still do things...but I know as time passes things will change. it makes me sad that some of his nieces and nephews , who don't live too far away, don't even phone to ask how he is ...it's the ones who live farthest away who visit...we don't want to put our loved ones in a care home, but it's not a case of wanting to....it's because they need more care than we can give...and it's because we love them that we have no other choice we want them to have the best care possible...it's obvious that you love your wife very much,,,you take care of yourself and do what makes you happy...don't feel guilty...every person here knows just how you're feeling x

Thank you, there are so many of us aren't there, but you still feel so alone.

 

[Rachael03]

Thanks @Rehanna for posting this. Such a poignant read. I could see you and your Penny as if I was in the room with you.

I think we all know how it is to get asked the "how are you?" question. I also deflect with an "ok" like many others. It would take too much energy to try and convey in words what we feel. The few times I have tried to be brave and more direct in my answer, I get upset, tongue tied or bumbling and made the situation even worse for myself.

I do appreciate my friends asking the question though. They dont know what else to say and its all they can manage to show me that they are thinking of me. I feel a guilt that I didnt ask more qus to a friend whos mother died of this cruel disease at a very young age, but I have forgiven myself as I know now I could never have honestly talked about it to him without experiencing it first hand myself with my mum.

Hope you are "OK" when you next visit your Penny

 

[GillP]

@Rehanna , thank you for sharing this. You write honestly from the heart. So much reminds me of my love for and time spent with James, my late husband. Ok but not ok, I’d do it all again in a heartbeat. Wishing you strength to be ok and when you’re not, to seek help.

 

[Rehanna]

@Rehanna , thank you for sharing this. You write honestly from the heart. So much reminds me of my love for and time spent with James, my late husband. Ok but not ok, I’d do it all again in a heartbeat. Wishing you strength to be ok and when you’re not, to seek help.

Rehanna, I read your post with tears in my eyes, when people ask how my oh is ..I just say...he's not too bad....because that's how I see him at the moment...he can still do things...but I know as time passes things will change. it makes me sad that some of his nieces and nephews , who don't live too far away, don't even phone to ask how he is ...it's the ones who live farthest away who visit...we don't want to put our loved ones in a care home, but it's not a case of wanting to....it's because they need more care than we can give...and it's because we love them that we have no other choice we want them to have the best care possible...it's obvious that you love your wife very much,,,you take care of yourself and do what makes you happy...don't feel guilty...every person here knows just how you're feeling x

I don't know whether i thanked you as there have been a few posts but thank you anyway 😊

 

[Agzy]

Hi @Rehanna, as Nazareth sang, ‘Love Hurts’ and never did a post describe how much it truly does. Like others I read every word then went back and travelled it again with you, beautifully written, thank you x

 

[Rehanna]

Hi @Rehanna, as Nazareth sang, ‘Love Hurts’ and never did a post describe how much it truly does. Like others I read every word then went back and travelled it again with you, beautifully written, thank you x

Thank you so much.