Is this common for carers - emotional knife edge?

[maryjoan]

Since OH was diagnosed, and I am 24/7 carer, our income has plummeted - but we manage - we are ever so slightly over thresholds for benefits, but do get AA.

I keep my chin up most of the time, but experience most of what I read on here.

My much loved younger son, lives over 400 miles away, and they are expecting their first baby. He is so very very excited at the thought of being a Daddy, and I am very happy for them.

His wife's family are all nearby and see them most days - so already I am feeling a little envious that they will see baby all the time and I won't.

I have a big birthday in Dec, and felt I wanted a party - a bit worried that my OH will not co operate due to the dementia, but think I can hold it all together. Family and friends are coming. But, there is a complication. My son's mother in law, also has a big birthday on exactly the same day !

My son has just phoned to say they will not be coming to my party - because his wife is pregnant. But we had talked earlier in the year of her staying there to be with her mother on her big birthday, whilst my son comes to see me. Now I just feel that my sons mother in law will not only get to see the baby all the time, but gets to see all her family on her Big Birthday, while I get neither, and I have the added burden of coping with little money and a PWD. The mother in law is a lovely lady, and has just bought the pram - which is super of her, and I appreciate that - but she was able to pay the £1000 it cost - which I couldn't....;...

I am really upset - but a little bit of me thinks he might just be having me on, and he will turn up on the day - but am I being really, really stupid and lining myself up to be more upset.

I just hate the dementia that has taken my partner away from me, and feel so lonely.

 

[Beate]

Earlier in the year maybe his wife wasn't pregnant and now he does not want to leave her side?
Whatever it is, I'm sure he's not meaning to hurt you.

There is so much technology these days, maybe you can look into video chats with them instead of actual visits?

 

[AliceA]

No, you are not stupid at all.
Our son in law's mother was in the same position. She lived nearby by so was involved and was wealthy so bought amazing presents. Cashmere etc when it really was expensive, never one but two sweaters.
The shared grandchildren were given cars in due course, quite out of our range.
I lived away and could not match presents so I opted out of trying. Just tried to show a real interest in what they were doing.
If your son comes it will be lovely but 400 miles is quite a way, with a pregnant wife too. Perhaps best not to hope too much.

At the best of times winter birthdays are difficult. Mine is right at the beginning of January. Weather is often a problem, once even my mother forgot mine!
I was so very hurt when a daughter did not even send a card on my 60th.
I decided to stop expecting from her. So often she had not remembered but this was 'special'. We were iced in so no hope of meeting up.
I also eventually decided if there was something I needed I would get it. Not in a selfish way just in a practical way.
My husband used to remember and that was enough, that is past now. So I decided now in my 80s I would celebrate the year, so any day would do.
Sometimes I think people do not mean to hurt, their lives are just looking in a different direction.
Sometimes life is really tough especially this time of year, it really brings our present situation home doesn't it.
I just wish we were nearer to meet and share the burdens.
Most years I am organised, now I am just drifting towards the winter months.
If what I say sounds as I have it together, well I haven't I am on an emotional seesaw. There is always something that catches unawares. You sound really low, I wish I could lift you up.

 

[Sad Staffs]

I really do understand how you feel.
My son and his children and our great grandchildren live a 4 hour drive away. They have their homes, family, he runs his own business. So.... I too rarely see them, or even hear from them, if I’m being honest they could do more, but they don’t so I try not to think about it.
It was Facebook that really made me feel left out and apart. So I cancelled my Facebook account, I haven’t looked at it for a couple of years. Ignorance can be bliss. I feel less left out now, because I have no idea what they are up to.
If they contact me it’s a plus.
I now don’t ask for more. I take what they give.
I wish it wasn’t this way, but I have always wanted them to have their own lives, be happy, and the last thing I would want is for them to feel I was a duty to them.
Having said all that I understand how hard it is for you, to feel split loyalties, to feel less important than those closer. I just feel left out. If I think about it then it hurts and I get upset, so I don’t think about it if I can help it. I bury my head in the sand... it hurts less that way.
Love to you.... B xx

 

[marionq]

@maryjoan I have never celebrated any of my big birthdays since I was 21. John has been a good husband but that was a weak spot. He came from a big family and I dont think birthdays were a feature. Mind you he loved when we put on parties for him!

However two things happened this year which mattered more than a birthday. My cousin in America sent me a card out of the blue not for an occasion but to tell me “It has made such a difference having you in my life”. One of the nicest things anyone has said to me. She is twice divorced and on her own.

The second was my school friend that I hadn’t seen for decades until two years ago told me she felt herself complete now we had met up again. She has children but is also divorced.

Maybe pinning all your emotions in one day sets you up to fail. I know when I was a young wife I was terribly hurt that John forgot occasions but he was never a drunk, unfaithful, work shy, wasteful, aggressive and always a good father. Can’t have it all I guess.

You have achieved a lot this year with your media breakthrough and I’m sure you have other things going on behind the scenes. Skyping so you can see the baby sounds good and maybe you’ll manage a respite visit. Some carers get a one off payment for a special event like that. Ask your social work team.

 

[maryjoan]

Thank you, one and all. I truly appreciate your friendship and your wisdom.
I think when we are lonely, as we often are, things get a little out of proportion.

We cannot have everything, I know.

Like so many others, I have had a sad life, with lots of anguish, and disappointments, and I am sure this latest with the diagnosis of dementia of my soul mate, after such a short time together, is really very, hard to come to terms with.

I can feel in control and reasonably happy for a few days, and then a small thing will upset me, and it is only my friends on here that I can express that to.
Keep going, count my many blessings. The idea of having a Christmas Birthday Party, is only the 2nd time in the last 10 years I have ever had a party, and I know it will be the last, as OH gets steadily worse. I will enjoy the day as my two utterly delightful local (ish) grandchildren will be here, and I know my distant son will send flowers, phone etc etc, as he has a good heart and we are very close in spirit.

I do count my blessings - I have brought up six children, having given birth to only two - I have done the natural, step, fostering, and adoption thing, and of them all only one is fairly out of touch, so there we are - not a bad life. See, I have almost talked myself round.........

 

[canary]

Since OH was diagnosed, and I am 24/7 carer, our income has plummeted - but we manage - we are ever so slightly over thresholds for benefits, but do get AA.

I keep my chin up most of the time, but experience most of what I read on here.

My much loved younger son, lives over 400 miles away, and they are expecting their first baby. He is so very very excited at the thought of being a Daddy, and I am very happy for them.

His wife's family are all nearby and see them most days - so already I am feeling a little envious that they will see baby all the time and I won't.

I have a big birthday in Dec, and felt I wanted a party - a bit worried that my OH will not co operate due to the dementia, but think I can hold it all together. Family and friends are coming. But, there is a complication. My son's mother in law, also has a big birthday on exactly the same day !

My son has just phoned to say they will not be coming to my party - because his wife is pregnant. But we had talked earlier in the year of her staying there to be with her mother on her big birthday, whilst my son comes to see me. Now I just feel that my sons mother in law will not only get to see the baby all the time, but gets to see all her family on her Big Birthday, while I get neither, and I have the added burden of coping with little money and a PWD. The mother in law is a lovely lady, and has just bought the pram - which is super of her, and I appreciate that - but she was able to pay the £1000 it cost - which I couldn't....;...

I am really upset - but a little bit of me thinks he might just be having me on, and he will turn up on the day - but am I being really, really stupid and lining myself up to be more upset.

I just hate the dementia that has taken my partner away from me, and feel so lonely.

I read this yesterday just after you had posted it, but I couldnt reply as it is too close to my own circumstances and I feared I would cry and not say anything helpful.
So, instead, I am sending you a big ((((((((hug))))))))

 

[maryjoan]

I read this yesterday just after you had posted it, but I couldnt reply as it is too close to my own circumstances and I feared I would cry and not say anything helpful.
So, instead, I am sending you a big ((((((((hug))))))))

Ah, bless you - I fear we are all in the same old wobbly boat without a paddle.

It is so difficult to live with someone whose mind takes them all over the place, when we are trying to maintain a 'normal' life for ourselves, and failing. I do not think I have ever attempted anything so difficult in all my existence. It might sound weird, but I am so gut wrenchingly DISAPPOINTED that life is like this.

This hug is for you xx

 

[canary]

I love the idea of a ghost hug

I am so gut wrenchingly DISAPPOINTED that life is like this

Its called grief - grief for the loss of the person, grief for the loss of all our plans, grief for the loss of other relationships and grief for the loss of things that will not happen.
xx

 

[maryjoan]

My brother was always busy busy with his life. In-laws next door. Busy busy. Visit once or twice a year tops.

But then dad had a fall and went into hospital and brother drove straight down to pick mum up to live with him.

So deep breath.
Try not to read into it more than it is, which is that it is so far and he doesn't want to leave his pregnant wife.

Birthday's don't matter; the above matters; chips are down and a knight on a white charger comes to the rescue.

Hope your birthday goes well.

Yes, I do see that - my No1 son is my Knight on a White Charger - when I had concussion after falling in the snow and knocking myself out, when I got stuck in floodwater in the car, when - well all sorts of things, and it's when the chips are down as you say....... and I do feel a lot happier today, I need to concentrate on what I have, rather than what I have not.

 

[AliceA]

With you in spirit, well done. We all hit bottom, Carers must be made of cork the way we bounce up again. Xxx