What do I say to my oldest friend..... ?

AreWeThereYet - this is SUCH a lovely example of a fiddle box.


What a terrible disease this is.

I made my Dad a 'fiddle' box when he could no longer read or write or understand TV programs. It was an old cardboard box from a pair of boots I bought, covered in contact paper. In it I put things that were a reference to his life - a model aeroplane (he was ex RAF), a couple of small framed pictures of family and a small photograph album containing pictures he took living in different parts of the world, a couple of small squidgy toys, some pencils and paper and a colouring book, a key ring, a battery operated fan. There was a big screw and nut that he would spend ages screwing up and undoing and then screwing up again (he was an aircraft engineer). A few other things that I can't remember now. The box was kept by his chair and maybe once or twice a week he would pick it up and look at it as if trying to work out what it was, then take the lid off and peer inside and take things out one at a time. He would be attracted to different things each time and it was amazing what was hiding away in his head. One day he would recognize a picture of Singapore and who he was with when he took the photo 62 years ago. Or the name of the RAF engineer he was training with in Germany. Another day he would sit and hold the stuffed bird and view it from all angles and talk about the birds he used to feed in the garden.

Tragic that your friend lost her daughter to suicide so recently. Trauma like that can speed up deterioration of people with dementia.
When my mum was robbed at home she too went down fast, many old friends dropped away but some newer ones surprisingly were supportive. Even though she probably didn’t realise it I really appreciated it on her behalf.
You have your things going on, but just keeping in touch will let her and her family know she is not forgotten.

Thanks everyone. I'm restricted to emails or post which is expensive...I'm looking out old photos to scan and send soon, but family prob;ems here are getting in the way!
I'll get down to this in the morning. - Alison

I cried when I read this. My mam had dementia for the last 9 years of her life. The conversations got really silly but I went to visit her at the nursing homes nearly every day and i talked and talked about the things we used to love and do. My heart breaks thinking back to those days and she died back in 2009. I still miss her.

They say music helps. Perhaps old songs from years ago. You may enjoy singing them together.
I feel very sad for you, it must be excruciatingly hard.
I find this site very helpful when things get difficult.

My mum had dementia brought on through trauma. Her memory from the past was excellent but recent memory not good at all. She had days of joy sadness and anger but her happiest days were from memories of the past.

You could talk about things from the past that you or she did. It will encourage her to talk more it’s what I did with my mum. She would often go in to a silent mood and get depressed just sit and cry it was heart breaking to witness.

I know there is distance between you but it won’t break the bond you have with your friend. It will cheer her up if she is reminded of things from the past and might bring a smile to her face. It’s a terrible illness dementia for family and friends witnessing it and for the person suffering with it.

Alie only just seen your post. I had my mom live with me the last 18 months of her life. She had cancer and dementia. But no pain from the cancer. With dementia and Alzheimer's the past becomes their present. As the past is very real to them it becomes their now. This is just my experience with my mom. To my mom I was her mom so talking about her childhood was real to her. Singing the songs her dad taught her was as if it happened yesterday. But it brought her joy. Seeing old photos at first was a comfort to her but as the dementia got worse they upset her as she didn't know who anyone was. So don't be surprised as your friends dementia takes hold if she gets destressed and gets abusive if you talk to her.

I found my mom's dementia a living grief my mom died but her body lived. Unfortunately the last 4 months of my mom's life where hell on earth as she became violent. But I looked after her by myself and couldn't put her into a home.

As your friend lives so far away. It would be best to remember her as she was and realise it will become increasingly difficult for her family to care for her and they may ask you not to contact them. Don't be offended if they do. It won't because they don't care but they will have enough problems caring her.

Can you talk to her about music she liked and even play some to her .It worked wonders for a neighbour who is sadly now in care but her OH had great success playing all the tracks she liked when she was becoming agitated

Septimia

Do you have photos of the two of you doing things in the past? While she can still use her iPad (or can be helped to) you could send a photo or two to chat about. FiL enjoyed a folder I made of pictures of family events and activities even when his dementia was quite advanced.

I was going to say something similar but different. How about making a photo book and sending it to her? Your childhoods? Wedding group photos are good because of all those elderly relatives were there. Her and you kids' childhoods etc.
And if you can have duplicate (photocopied? or are there photo book companies that will do you a 2nd identical one cheaply?), you can have facetime/phone conversations.

Could you put together a playlist of songs you share?

Please do NOT try to correct any false memories.. All that will do is cause even more confusion.

My Sister-in-law who had split up from my brother many years ago, and then re-married contacted me from the care home both she and her second hubbie were in. My brother died several years back, and she was totally confused between her two husbands and insisted on telling me that my brother was not very well.

I have an elderly cousin in a not dissimilar position and I actually have a set of questions I ask her on the phone like how are you? how are your children? what is the weather like? Whilst these may seem very simple they provide her with an opportunity to express herself. She can't process complex explanations or sentences anymore so I try to keep it simple and sometimes talk about holidays we used to have but I always try to be positive and keep things simple.

I appreciate there is a time difference, but it would be best to phone her or message via her iPad in the morning or early afternoon ( her time). Many people with dementia experience times of confusion large afternoon or early evening, it’s called sun downing.

When my mum was in the early stage of dementia, she found it reassuring when I told her that her brain is like a sponge, as she got older it became full of memories so some leak out to make room for new ones. Mind you, my mum had a weird sense of humour!!

Thanks to everybody. I've been talking to my sister and she remembered that we had at least one photo of my friend's wedding from the local newspaper...I shall look that out and find all my old pics of the children (we had five between us) most of which haven't been scanned.

I shall work on that this evening after I've sent a short mail. Also I have dredged up her daughter's email a/d from past mails...it would be good to be in touch with her too.

Good advice here Alie. I recommend going on the Alzheimers Society website - they have lots of good advice and information sheets.

Do you have photos of the two of you doing things in the past? While she can still use her iPad (or can be helped to) you could send a photo or two to chat about. FiL enjoyed a folder I made of pictures of family events and activities even when his dementia was quite advanced.

My sister had better times in the day, periods when she was more aware and happy. Perhaps, if you talk on the phone, you could call at her better times - even if you have to call at a sleep time for you because of the time differences?

Should have said, if you do ask about something (such as food) don't ask many questions - just let her talk.
Struggling for answers is often upsetting and confusing.

Would she like a colouring book? There are some simple ones out there - often labelled "colouring for seniors" or similar.
Don't buy one that says "dementia" on it.

Have you checked the dementia websites for advice?
Might be worth a chat with someone on the helpline?
Have you got old photos you could send her copies of? You could collate them into a mini-album or post them one by one every couple of weeks so they are surprise?

If things are misremembered I think maybe just say "oh" - don't correct her. I would agree if she seems "certain" or maybe let it slide past - and just move on.

What a terrible sadness for you both.
💐

Chatting about meals is a social thing to do - even "it's ages since I had rice pudding" may bring a smile and a memory. She may tell you what she's been eating if you ask and if she gets it wrong it really doesn't matter.

If you can get her to chat about things, any things, you are doing a great service to the person she was, the person you loved and even if only briefly, contributing to the pleasures of her life today.

Thinking of you.

Exactly the same thing happened to me, except that I saw her every week. Its heartbreaking, and I rather think the fact that she knew what was happening to her made it more difficult.
Everyone is different of course, but my friend started to 'mis' remember past episodes and got angry with me for not remembering them exactly as she did. Be prepared for her to get rude to you and downright nasty at times, she also lost her ability to laugh and see the funny side of things.
Being so far away doesn't help much of course, and she will possibly lose the ability to write and type so communication will be difficult too.
Oh dear, I'm so sorry for you all.
What sort of help does her family get in NZ? Does she have carers and someone to clean and cook?

Chardy, thanks. Some good help here.

I'll be back later; seeing my sister about a family funeral here....

Keep communicating with her, letters, emails, facetime. Talk about the past, when you were schoolchildren (even if you weren't friends then, you have shared experiences of school dinners, exams, navy blue knickers). Jobs she did. Areas she lived in. When her girls were babies. Songs in the charts. Advert jingles. TV programmes.