I'm new to this-just need people to chat to who can understand!

[ros37]

Hi,
My mum was diagnosed with Alxheimers 2 yrs ago-she is now getting alot worse.
Mum can no longer use money,tell time,write/sign name etc.I live the other end of the country and speak weekly on phone but I find this difficult-she doesn't remember things I have told her-i.e children's birthdays,dog dying etc.
I try and visit but work full time and have two young children.
My brother lives nearby and visits regularly.My dad is nearly 80 but is providing a lot of care.They also have a nurse visit daily for my dad and his physical health needs (blood disorder).
I am finding it hard to come to terms with what is happening to my mum-she used to be a good support and there for me-now she is someone different-can't talk to her as I could.
Especially hard when she can't remember names of my kids.
Any suggestions out there???
Ros

 

[karen_white]

Do feel for you in your situation, especially living far away from Mum.
It's very difficult to adapt to how our relatives change and how it affects the whole family.
Something the Bruce has posted about and something that has helped me greatly is that with any type of dementia, your relationship with that person changes. I have tried my best to embrace the new relationship I now have with my dad, but it's not something that came easily or naturally developed. Neither is it something I now find easier! Now I can't remember when I last used my name (probably years), but that no longer bothers me or Mum especially. At different stages, different milestones of remembering will be what helps you get through this. The fact she knows who your Dad is, what your name is, whether she recognises your voice. At the moment, just the fact that Dad is in a good mood on the day I visit it such a wonderful thing.
I'm sorry I don't have many suggestions, but talking here will help and I know others will be able to share what helps them...hopefully will help you too.
Just wanted to know that was thinking of you.
regards
Karen.x

 

[Nutty Nan]

Hi Ros,
You're in a bit of a tough situation: young children, full time job, parents who need you (and you need to keep in touch with them) - and what seems like a million miles between you. On top of that, the lifeline of the telephone is proving to be less and less useful because of your Mum's AD...... sadly, there is no easy solution - you will adjust as time goes by (because you have no alternative), and although you will be sad every time you notice a deterioration in your Mum, you will learn to lower your expectations so that you can celebrate the good moments.
AD is scary, upsetting and hard for everyone who is affected, patients, carers, family and friends. Hopefully, you will find lots of support and information on this forum.
'United we stand', and 'a trouble shared .....'.
All the best!

 

[Norman]

Hi Ros
We have had the same feelings and frustrations that you are now feeling.
We are traveling the same road,by different routes perhaps but all to the ultimate end.because we know that there is no cure and that we have to adjust to the changes in our loved ones.
My wife cannot remember the grand kid's names,or even the daughter in laws,she sometimes asks me Norman,when is Norman coming in?
Ros your mum is a different person,but she is still there inside,you will get glimpses of you "old" mum,enjoy them when you can..
Your Mum used to be a support for you ,now everything is changed and she needs your support.
Our one Son lives a long way away from us but his telephone calls help me through the feelings of lonliness ,now that I don't have the loving caring wife that has shared 58 years of married life with me.
Ros please don't forget Dad he needs all the love and support that he can get now.
There is only one way for us to live now day to day.
Hope this has helped a little,post when you need.
All best wishes
Norman

 

[Sheila]

Dear Ros, Norman has summed it up beautifully and he is so right, don't forget your dear old Dad in all of this, he is very much in need of your love and support. Sadly the relationship you used to have with your Mum is now going to be a precious memory. I found that I could often draw on that memory and almost hear her voice saying things to help me through when I was down, just like she always did before the illness came. The bond you have is strong, yes it has changed, but it is the illness that has changed it. Your Mum is still your Mum, always will be. When you speak to her, keep it simple, tell her you love her, that it is her little girl on the end of the phone, don't expect too much, every now and again, you will get little glimpses of the silver at the end of the rainbow from her, treasure them. Love She. XX

 

[kaybe]

Hi Ros

I think the good thing about this forum is that you realise that you're not alone and there are people out there that truly understand how you are feeling. Maybe we can’t always get the answer that we search for, but sometimes the old cliché of a problem shared is all we need.
My mum was born and raised as a catholic; whilst I wouldn’t put myself in that category I definitely have a faith. The way I like to see it is this: whilst growing up and as a young adult I would have moments of unexplainable fear at the thought of loosing my mum. We’ve always been very close and she had me in her late 30’s so it used to cross my mind occasionally. I like to think that whoever is pulling the strings upstairs realised that taking this extremely special person in one go would tear everyone apart, so he started taking her bit by bit, kind of getting us used to the idea. It’s what I think when I don’t have a clue how to face the day. I feel like I grieve a part of my mum as each stage takes a hold, so to think that part of my mum is up there already and willing me on helps. I know that this is a very personal way that I choose to deal with it…but it works for me!
K. x

 

[Nutty Nan]

Kaybe,
You have found a wonderful way of seeing the silver lining on this awfully dark cloud - thank you for sharing it with us!!

 

[ros37]

Hi ,
Thank you so much for all your replies-I think that this will be a really good support.I totally identify with you,Sheila when you say about remembering things your mum said to you through the years-especially when you have children of your own.Kaybe-your way of looking at this is really useful-thank you.I feel that it is like a grieving process in stages-this can make it easier i suppose as you have time to come to terms with each loss but also can feel like a very painful journey.Sometimes it can feel like an overwhelming grief but most of the time you just get on with things-until someone says something to remind you-it is always in the back of your mind.
Sheila and Norman -your'e right about dad-i just don't really know how to support him-its not really practical help he needs-they have my brother and access to home care when needed,but the emotional side.We have discussed his sadness at losing the wife he knew-she was always very organised and in charge of the home!He has had to take on a lot of this role now and has found this hard to adjust to.He has a long term physical illness so often gets tired and irritable with mum.
Again thank you for your replies and support.

Ros

 

[Norman]

Ros
he needs a big hug,a lot of big hugs and tell him that you love him.
It does for me ,when I am lucky
A hug for you
Norman

 

[Half-pint]

Ros,
We all feel for you and understand what you are feeling. It is sad to slowly lose our loved ones and their memory. Along with their memories, we feel they are losing us too. But we don't really know what they feel as they seem to slip away, because sometimes they are as clear as a bell and right there next to us.
Try to embrace the joy of the past, who you are, and the gifts your Mom gave you in this life. Call your Mom as much as you can. Just listen to her and tell her you love her. Give her big hugs over the phone and laugh with her. Talk with your children about what is happening, so that they understand if they are old enough. Grandma forgets your names and birthdays now and she isn't like she used to be, but she still loves you and needs you.

Take care, be strong, and also cry when you need to...You are not alone. Can't you feel that big hug from all of us? )

 

[TED]

Wasnt sure what to say but felt compelled to write something
Really its just that I know how you feel. Am in a very similar situation that Mum has deteriorated over the past 3 years or so, and Dad is going a miracle job of looking after her now. Such a strong women now resorted to having someone cut up her dinner so she can eat it .... little things like that which get to me most.

Fortunately I am local as are a couple of my sisters, but feel for the rest of the family who are further away . it is good that you call but as hard as I know it will be you have to accept that she will forget things you last spoke about, this might sound obvious but try not to ask questions of her, rather direct her back to what she has been doing and sharing news from your end (I stopped asking mum ' how are you ' because the obvious answer was "ill, angry and fed up" so instead tell her that she looks well and make sure she's eating well (which she does, loves her food and can always seem to remember what they've been having - thankfully Dad is a superb cook and rustles up all sorts of things so meal times are never dull)

Sorry this is probably not much help and as usual I begin to ramble on a bit, but really all I wanted to post here was a message of support and understanding. It will be difficult being far away but stay in touch with all the family as they will need you to be strong esp for your Dad. It's easy to forget the one caring for this illness when all the support and love is focused on the 'patient' (Mum).

I cant say it will get any better or easier but it is possible to enjoy the good days and make the most of things, every thing you do helps, whether its phone calls or prayers or sending down some flowers for no reason at all (I did that on our return from a break last week to say 'thanks' ... there was a bottle of whisky in it too but that's for later ... hic )

Keep using the forum, it's got a lot of great people here willing to listen and help if they can.

take care
TED

 

[ros37]

Thanks for all the support.

What you said about telling my kids,Half pint, is very helpful-I had been thinking about this-i have 2 girls 11 and 4.I feel like i need to talk to my eldest daughter soon as she will notice changes in my mum when we visit.My youngest will probably just take her as she is as she won't really remember any different-in fact my mum is very good with my youngest daughter and loves to play with her.I am planning to visit over the Bank Holiday so i will let you know how it goes-part of me is dreading it but i think seeing them both will be good too.
Don't worry about rambling on Ted-i appreciate your reply anyway!I find that when talking on the phone i do tend to tell her what i 've been up to rather than refer back to past conversations,events etc.This is easier but difficult too.I really empathise with your comment about cutting up the food-it is so hard to see a once strong and independent person need help in this way.My mum was always very organised and creative and used to write stories and articles for magazines.She is now unable to write her name or read and this is very sad.
However,even tho' at the beginning when she started to lose her memory and writing/reading skills she was very frustrated and irritated, now she seems happy - maybe one of the things to be grateful for is her lack of awareness of her illness and therefore she doesn't feel depressed about any deterioation.
There, you see, I'm rambling now!

I'll be in touch soon,

Love
Ros

 

[Sharon Clifford]

Hi Ros

Just taking time out to look thru the site and found your post. Have only recently joined and I am like you. My mum was diagnosed in April, having been acting oddly for sometime now.. We always suspected the truth as one does. But like you i live, not the other end of the country, but over 100 miles away. My sister is closer but we both have own problems (don't we always). My sister has recently lost her job but is now looking at getting carer's support and being available to help mum, but is also helping her husband set up a business. I work, have a child and am going through an increasingly messy divorce. So it isn't always easy to get to see mum, when I do she brushes off questions about her health, seems totally lucid, despite forgetting names, ages birthdays etc. My sister sees the other side the confusion and anger etc. so I am finding this hard and know how you must feel.
Can't offer any advise but at least we know there are other's out there with similar problems
Sharon