Help! How do I accept my mum has alzheimers and not feel so sad about it

[smudgedog]

Hello everyone,

My 73 year old mum was diagnosed with alzheimers in June, after several months of my family and I knowing something was wrong and trying to get her to go to the doctors.

I am finding it very hard to accept it. Mum and I have always been very close and it is killing me to see her the way she is. I feel my old mum has gone and I just want to shout "I WANT MY MUM BACK". I know I have to deal with it and accept it but I just feel so sad all the time. I am 31 (my mum was an older mum). My dad and sister (who is 43) seem to be dealing with it quite well and accepting how she is.

I don't know what to do. Please help.

Thank you

 

[Grannie G]

Hello smudgedog

Alzheimer`s or any other form of dementia is a terrible diagnosis for anyone and takes a lot of coming to terms with.

You are very young but even so, your mother is ill and needs you more than ever. This is what helped me manage when I felt it was all getting on top of me. I`m not saying it`s easy and I`m not saying you`ll be able to be strong for your mum all the time, but I`m sure when you manage to realise you have no alternative other than to learn to live with what has been diagnosed, you will manage.

When that time comes , try to make the most of the good times you can still have with your mum.

 

[LYN T]

The shock is tremendous to start with.Then you will gradually accept the diagnosis. That's not to say that you wont ever want your Mum back as she was-far from it-but practicalities kick in, and that's where you can be strong.

You will continue to still see your Mum as she was-even now with my Husband in the severe stage of AD, I see his personality shine through.

Take care and continue to post whenever you need advice or a rant.

Take care Lyn T

 

[Jess26]

I empathise, I grieved more for my mum in the first weeks after diagnosis than I did when she eventually passed away. I remember one of my first posts here was to say I felt I'd lost my mum. When you do get your head round it. You will realise that she is still with you. It's just on some days the mum you want is hidden a little more deply than on others.
This forum is great, do keep in touch.

 

[dappleddrowsy]

Hi there

I've been reading talking point for a while but haven't posted yet, not sure why! Anyway your post really spoke to me and I want so much to try to help or at least offer some support. I'm so sorry for what you and your family are going through, I'm 31 too, with older parents - my mum is 73 too but it's my dad, who's 80, who has Alzheimer's, he was diagnosed about four years ago but we'd known for a while there was something not quite right.
Based on my /our experience, it does take time to get used to, and accepting it /making your peace with it is hard and might not happen completely... but there are things you can do! First thing is to try not to compare how you're coping with how others are coping - unless learning tactics from them is helpful to you! You never know how others really feel or if they're putting on a brave face. I learned to let myself feel however I was going to feel, even angry (away from dad!) because it wasn't doing me any favours forcing myself to be the perfect daughter. Then, I guess, give it time, and focus on doing what you can to connect with your mum and help her, that has really helped me. I feel great that I was the one who figured out that he enjoys graphic novels now, for example. Not the most incredible thing ever, but I feel good about it and it's something that connects us.
One last thing! (for now!)- when dad was first diagnosed, our family had a chance to meet a specialist nurse to ask questions and get support, I didn't because I was living a few hours away at the time. I think it helped a lot, maybe you could ask at the memory clinic, if that sounds good to you?

Virtual hugs to you x

 

[ashleypollock]

My greatgrandfather had Alzheimer's and lost his battle about three weeks ago i was sad when he was diagnosed but u have to be strong


Sent from my iPhone using Talking Point mobile app
Ashley

 

[ceroc46]

Hello smudgedog,

I really feel for you, my mum is 79 and was diagnosed coming up for 18 months ago.

I agree with some of what's been said previous , but still don't think I've fully accepted it. Some days are better than others; it seems to wash over my head and I can get on with it. Other days the sadness hits me like a wall and my knees actually buckle. I'm sad for everything, loss of my mum,friend, granny to the kids and the indignity it brings with it. Such as today when she had a number 2 accident and I had to change and clean her.

I also want the old mum back and sometimes think maybe she'll get better soon. Maybe they've made a mistake but I know I'm just fooling myself.

I don't suppose there's a blueprint for coping or accepting, just try and take each day as it comes. I try not to think of what the future might bring otherwise I'd never cope.

Sorry it's not a clear cut answer. Take care.

 

[zeeeb]

I'm 36, with a 59 year old mum who was diagnosed with alzheimers and parkinsons within the last 2 years. I have taken myself to a psychologist to try and sort through some of my feelings. I realise that I have a marathon to run because mum is so young and could well live for decades. I wanted to try and prepare mentally for what is to come and set up some healthy mental attitudes to try and get through what I will eventually have coming my way.

It has helped. I was hanging on to a lot of guilt, which I have been able to let go. It's funny that I needed to pay a lot of money to have permission from a professional to admit that none of this is my fault, and not all my responsibility. It's broke, and I can't fix it, and felt alot of guilt because I'm a bit of a fixer I think.

Be kind and gentle to yourself. Look after yourself as well.

 

[artyfarty]

You are so young to have to deal with this (my sister is the same age and is grappling I think with the same feelings), and my heart goes out to you in your difficult situation.

I have found that whether you want it or not your relationship is re-defined over time. Like the other poster and the graphic novel, I have found a great deal of satisfaction from finding solutions for my mum that work or bring her a little happiness. It's not the same but you can find comfort from knowing that you are doing the best you can and that your mum would be proud and grateful for that.

I hope that you find acceptance and strength to deal with your upsetting situation - this forum is great for both practical and emotional support and I have found it invaluable. I hope you do too.

 

[smudgedog]

Thank you all so much for your replies. I really appreciate all the advice and its nice to know others feel the same way.

I think one thing that makes it more difficult is the fact I suffer from ME (chronic fatigue syndrome) which means I get very weak and tired along with many other symptoms. All I want to do is take my mum out different places and do things with her so that she is happy and occupied and I feel better helping her and looking after her but I am unable to due to how I feel.

If anyone has any suggestions of things I could get my mum to do that may help her, I would really appreciate it.

Thank you again

Sent from my GT-I9300 using Talking Point mobile app

 

[Miss Merlot]

Very sorry to hear...

I am also 31 (all of 32 next week!!) and find it tough enough dealing with mother in law with AD (due to older hubby...).

If it were my own dear, kind, lovely mum, I would fall to bits...

Please keep posting as a world of support is to be found here.

 

[Shash7677]

I was 34 when mum was diagnosed 2 years ago (my bday next week too Miss M although I'm an ancient 36 ;-) )

It's difficult to come to terms with dementia at the best of times but when you are also unwell yourself it must be twice as hard.

Mum was showing symptoms for about 3 years before her diagnosis and I pretty much knew what the consultant was going to say.

You may never be able to accept mums diagnosis or illness but you can be there to help and support her the best you can. Sometimes a well times hug speaks volumes.

Take care
Sharon

 

[smudgedog]

Thank you both for your kind words. My mum phoned me today upset, saying she was so lonely and she doesn't have anyone. It hurts so much as I just want to help her but can't. Any ideas of things I could organise for her to do in and out of the house?

Thank you again

Sent from my GT-I9300 using Talking Point mobile app

 

[cerridwen]

Practical help for your mum

Hi Smudgedog,
You don't reveal where you live, but some NHS trusts have social/emotional and formalized practical support for people with dementia and their carers. I live in Gloucestershire and my Dad has his own dementia nurse and we can talk to her about any issue with Dad's illness. She would be able to help with social support for Dad (but he refuses it at present). If your Mum has a dementia nurse, it might be worth you having a chat with them first. If not, speak to your local Alzheimers Society branch for help and advice; there may be a memory cafe that your Mum can attend, where she can have a cup of tea/coffee and chat with other people who have dementia. Carers can go along too. It sounds like you need support too, so you might want to speak to the Alzheimers Society about how you are feeling, they are very friendly and supportive. If none of this is available, you may have other charities in your area that support people with dementia and their families. Have a chat with your Mum's GP if you are worried about her. It can't hurt.....after diagnosis and a treatment plan have been put in place, your GP is the main contact for her care.
Keep talking to us here, there are many more people on this forum who are far more experienced than me on these things. You may find a bit of comfort for yourself in these message boards.
Cerridwenx

 

[Hedgy]

Hi smudgedog,

It is very hard!

My gran has AD. I've always thought of her as my mother (as my true mother left me when I was very little and I've never seen her since)... And I am 24. It is heart-breaking to see her decline and to know that it is not going to get better, but rather the opposite. We have always been very close (I couldn't wish for a better mom!) and I don't feel ready at all to face the life on my own... Perhaps it may sound childish but even imaging things like finding a husband, getting married or having children... without her... are really upsetting.

Moreover, I am still in uni away from home (my last year, thankfully) and am having this great dilemma... Of whether I should take a year out and try to spend more time with gran while I still can (her disease is progressing very quickly), or whether I should aim to establish myself in life first (i.e. graduate and get a job)... AD is not going to wait for me, is it. Just wondering whether I will not regret not taking time off to be with gran during the rest of my life. It is hard.

So I'd say, be strong and take care of yourself, cause it's important... And you are not alone.

 

[Noorza]

I would say stay strong but allow yourself to be weak, don't beat yourself up over the days you will cry, the days you won't want to face it all, the days where it will be overwhelming and to forgive yourself as there is nothing to forgive.

This is the one disease I can think of where we grieve for the loss of a loved one before we actually lose them physically as we lose them little bit by little bit while they are with us.

So be kind to yourself, if you are upset allow yourself to be, don't judge yourself, you are facing something that is so hard to face. I know there will be people on this site who will understand what you are going through and who will help you to cope, who will understand and will never judge because we are all at different stages of the same journey, if that doesn't sound too corny but it is sincerely meant.

 

[Ephraim]

Hi smudgedog,

I have just read your post and the comments other people have left. Indeed, the news must be terrible for you to accept and will take some getting used to, but you will get there, believe me.
From my experience, when my Dad was first diagnosed by a memory clinic (something you mum's GP should already have referred her to and probably where the diagnosis has come from) a social worker was appointed by the local Trust. She was able to arrange a care package. This care package can include things like morning visits for washing and dressing, payments for a person to sit with and care for people during the day and also day care centres where your Mum could be collected and taken to a centre for the day. There they are given lunch, encouraged to join in with various activities and day trips. I have been to Dad's day centre and the women who go there seem to love it. Busy singing and dancing etc.
In brief, my advice is to speak to the mental health nurse at the memory clinic about getting a social worker and have a care package developed. Get all the help you can for your Mum.
Oh, and don't be afraid to use this forum to talk about your concerns as things progress. When my Dad was diagnosed he displayed strange behaviours which was worrying me. I wrote about them on here and people were able to advise me along the way. This was invaluable to me and I can barely express how lost I felt at the outset. I imagine you are feeling the same way. Like I said earlier, you will be ok. You're in a bad place at the moment but there is help for you, and support.
best wishes,
Ephraim

 

[little shettie]

I felt I just had to write and say I know how you're feeling, I really do. In fact we all do, having been through it. My mum was diagnosed 3 years ago at 88 and though I had strongly suspected she had AZ, when we got the results (I was with her), I cried all the way home once I dropped her off. It was as if I'd already lost her. We were such good friends up til then and tragically despite her age, physically she looked and acted 20 years younger. I've lost my mum, best friend and life will never be the same. Now 3 years on and with the loss of my dear dad earlier this year to deal with, its a terrible struggle but you just have to get on with it. Its a wicked illness and I feel sad every time I leave her. You will find a way to deal with it and give your mum the love and support she needs. And remember, there's always Talking Point when you need help, advice or just to vent!! Thank god for TP! Hugs and love to you all xxxxx

 

[assistance12]

All the posts resonate with me and it's hard not to cry. My Mum's been in a care home 3 years (now 77) and it's taken me a long time to adjust. BUT on a positive note since my Dad's death nearly a year ago, I've been able to concentrate more on Mum. We took her out to the memorial service with a carer and that gave me the confidence to take her out. She's calm and settled and doesn't react adversely to a change in setting. I therefore take her back to her Church ocassionally, and when I visit always take her out in the wheelchair. We often go to the local superstore for a wander around then a coffee and cake. Mum has no speech and little response but I've found it much easier to talk to her about items on the shelf (although she puts everything in her mouth) eg she will look at the flower display, toys I pick out for my boys etc. Telling her about the children at school or our holiday is too abstract and means nothing. She's in a London Borough so I've got a taxi card for subsidised travel in a taxi which can take a wheelchair. We've even been to that large Swedish store (!) this summer with my young children - huge disabled toilets so we can all go in together!!
I've also found it invaluable to talk to a few friends who also have Mums with AD and fully understand.
Overall, concentrate on what you can still do with your Mum. When I tell my Mum it's been so lovely to see her today and she smiles, that's all I need. I'm able to do the long drive home with a warm feeling rather than tears.

 

[JaneDee]

Hi,

I am 32 and my mum was diagnosed with a hereditary form of Alzheimers a year ago aged 64. I found it very difficult to come to terms with and so did my sister aged 26. Over time you have to try and not focus on the new traits but on those rare occasions when your real mum shines through. My mum is no longer the person she was and at times is like a stubborn 3 year old, but I still love her. I am not sure if it gets easier, but your skin will thicken and you'll realise at times that it is ok to laugh, as awful as the disease is there are the occasional funny times.

JaneDee