First time Mum coping with own Mother who has Dementia

[strawbee]

Hi everyone,

I haven't posted anything in a while, a lot has changed.

My Mum has Dementia, she was diagnosed nearly 3 years ago now. This last year myself and my family have noticed how much she has changed, we are a strong family but no one talks about it. The D word is a no no, we don't mention it. We just carry on.

November 6th 2016 I became a Mummy, I have a beautiful little girl. Evelyn, or Evie as we have all come to call her. Any other parents out there, Mums especially you know that this completely throws your life upside down. I am the eldest child of my parents, I have a younger brother too and Evie is my parent's first Grandchild. So, as you can imagine everyone was and still is super excited and happy.

I always imagined when I was younger that when I had kids I would be able to talk to my mum about it, ask questions, ask what happened to her during labour etc, ask for advice and help. I don't have that, and I am finding it hard.

Hardest thing so far. I asked my Mum to tell me what happened to her when she was in labour with me. For her to tell me her story, I already know it off by heart. Being pregnant I was interested in the specifics. My Mum thought about it, and she said she couldn't remember. A month after having Evie, I asked her again. She described the birth of my younger brother. I didn't let on, I just continued the conversation about other things. But what got me most, she was holding Evie, cooing at her telling her Granddaughter how she was her Mother, and then her Auntie.

As a family, we just carry on. I can't talk to my brother, who out of everyone knows how I feel. My Dad is traditional, he has never really showed emotion. But since he's become a Granddad, he is softer. He tells me Mum has got worse, but won't accept any help or suggestion of where he could get help. He wants to deal with it his own way, his prerogative I guess. My mum's sisters, 1 I never talk to and the other is very blunt about it, but won't say much. My husband isn't sure what to say to me, or knows how to comfort me. But he listens, hands me the tissues and offers support. I couldn't ask him for more. But I am on my own.

I am dreading what comes next. We all know what comes next, I don't want my Mummy to forget me.

 

[BR_ANA]

Congratulations for the baby.

I am sorry, but dementia isn't the way we wish. (My mum forgot who she was). She may forget much more things, she may tell you're not her daughter, cause it is a baby. (My mum used to say I was her aunt or mum). However she may have some moments of lucidity and some bad moments.




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[TJ]

Hi Strawbee, it felt like I could have written some of your words myself. This cruel, ugly disease is hard enough but when you have a young child, the extra pain you feel for the loss of that relationship aswell between Nanna and Granddaughter, I find overwhelming. We also don't talk about Alzheimer's as Mum won't acknowledge it and hasn't since diagnosis last April. I'm not sure whether it's because she can't or won't sometimes. My nearly 5 year old says "why does Nanna keep asking you the same question Mummy" or "why isn't Nanna taking the lids off felt tips when she colours with me" Completely heartbreaking. How do you explain Alzheimer's to a child. All the things I hoped I could talk to Mum about when I had my daughter. To be able to go to her for help or advice. I miss how it should have been. Like you, my husband is amazing and does what he can to support me. Don't think I've ever felt so alone and isolated in my life. I never post on here as to be honest sometimes it makes me feel worse to read about how bad things can become. I just understood your words and maybe sometimes it does help to know someone else is feeling the same. Although I wouldn't wish this on anyone else. I look at my little girl and she keeps me going but then I look at my wonderful Mum and so want her back. Stay strong


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[strawbee]

Hi Strawbee, it felt like I could have written some of your words myself. This cruel, ugly disease is hard enough but when you have a young child, the extra pain you feel for the loss of that relationship aswell between Nanna and Granddaughter, I find overwhelming. We also don't talk about Alzheimer's as Mum won't acknowledge it and hasn't since diagnosis last April. I'm not sure whether it's because she can't or won't sometimes. My nearly 5 year old says "why does Nanna keep asking you the same question Mummy" or "why isn't Nanna taking the lids off felt tips when she colours with me" Completely heartbreaking. How do you explain Alzheimer's to a child. All the things I hoped I could talk to Mum about when I had my daughter. To be able to go to her for help or advice. I miss how it should have been. Like you, my husband is amazing and does what he can to support me. Don't think I've ever felt so alone and isolated in my life. I never post on here as to be honest sometimes it makes me feel worse to read about how bad things can become. I just understood your words and maybe sometimes it does help to know someone else is feeling the same. Although I wouldn't wish this on anyone else. I look at my little girl and she keeps me going but then I look at my wonderful Mum and so want her back. Stay strong


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Thank you so much TJ for your message.

I posted for the first time a few years ago, it was recommended to me to help. It did, and you have helped me. Something as simple as replying to someone can really make their day. It really does help when someone else is feeling the same.

I almost found myself thinking and hope that my daughter is so young she won't understand or even remember, and in a way I hope she doesn't. It sounds cruel, but I think its to save myself more than her. I have found myself scripting what I would say to her in the future, like you say will she get it? Many adults don't. Friends and my in-law family don't really understand, the best way I found to describe it is like I am grieving for someone who hasn't passed away. They are just not here anymore.

I too look at my little girl and think how strong I try to be to be the best Mum I can. But then I look at my Mum and I turn into a little girl myself and desperately want her back.

I will keep hold of the good times and treasure the good days we will have. You too stay strong.

 

[strawbee]

Congratulations for the baby.

I am sorry, but dementia isn't the way we wish. (My mum forgot who she was). She may forget much more things, she may tell you're not her daughter, cause it is a baby. (My mum used to say I was her aunt or mum). However she may have some moments of lucidity and some bad moments.




Thank you Ana, I appreciate your reply.
I think its the best and only thing we can do, enjoy the time we do have.

 

[LadyA]

I popped into the NHS Mental Heath facility a couple of weeks ago. I saw Mother sitting at a table with three other ladies also in their 80s. As I walked up, one of the ladies said "Whose the film star then" a little taken aback, my Mum said for the first time in a few months, this is my eldest son and said my name. I am often her Doctor, brother etc. I can only assume the Lady that had complemented me had been watching Bad Santa or similar. I am definitely Father Christmas Stage 4.
Stage 1 Believes
Stage 2 Disbelieves
Stage 3 Dresses as
Stage 4 Looks like

A bit seasonal but it was around Christmas.

I think I have gone through much of the grieving process, Mum is not Mum anymore to me, just someone who needs looking after.

The funny incidents, including various escape attempts, I'm sorry to say do cheer me up in what otherwise would just be a very, very sad situation.

And that's the thing. As heartbreaking as the whole situation is, there are those lighter moments - and we need to grab on to those, and take them when they come along. There may not be many, and often, it feels wrong to laugh about them. We can feel guilty (oh, what a busy bee the Guilt Monster is when dealing with carers! - makes us feel guilty about what we do and feel even more guilty about what we don't do!) - but I think among many things carers need to develop to survive any length are tenacity (for dealing with officialdom), a thick skin (no, all the insults and hurtful things the PWD hurl at us are not really meant. ok, at the time, they are really meant, but not by the person - it's the d*** illness talking! the Dementia Demon!), and a kind of dark humour. It isn't ever that we are laughing at the person - just at the weird & wonderful things that dementia sometimes throws up.

Crazyweather, I haven't seen the Bad Santa movies, but I'm now intrigued!

 

[jog22]

Hi strawbee, as TJ said, I could have written some of your words myself.
I totally sympathise. I have a 6 month old son, Elliot. I just wished I had that relationship with my mum, that I used to have, where I would call her up, ask for advice etc. We used to be so close. But I just can't do that now. I asked my mum for the labour stories but she couldn't remember either.
You are right when you say, grieving for someone who hasn't passed, that's totally it.
Congratulations on your baby Evie, such a lovely name x


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[TJ]

My 5 year old's brain is developing and growing so fast these days whilst my Mum's is deteriorating just as fast. How are you supposed to balance that out and explain to your daughter what's happening to Nanna and explain to your Mum how your 5 year old is learning new things. Nothing prepares for you for any of this and the worst thing is it's going to get harder every time Mum comes to stay with us. You can hide so much but sometimes Mum is unpredictable and you don't always know what's coming. How do you stop a 5 year old correcting someone with dementia. It's natural for them to say something if they know it's wrong or it's been said 20'times on a loop. I'm now at the stage where I have to protect my daughter whilst still trying to keep Mum safe and happy and protect her. No one has any answers and no one can make it better. Just when you think you've found a way to manage, something new presents itself and you have to start again. How cruel it is to lose your Mum but still have her standing in front of you. I'm constantly overwhelmed by what this disease robs from you. I've not even accepted what this is doing to my relationship with Mum never mind anyone else's. Dementia just doesn't give you time to catch up and process anything.


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