Over the festive season, I/we received a number of wonderful phone messages and Christmas cards, with the usual best wishes and love to us all, from, for example, Jacinta and Craig. The envelopes mostly had no return address; only a few with a return address had the sender’s surname. One card included a small business card size with address and new phone number details (thanks JH), and her picture. What a blessing, it took me a while, but eventually I worked out who it was, and could also look her up on Facebook to find out about her, helping my memory better recall how I knew her. And if that doesn’t work, then at least the chatter on a friend’s Facebook page, or the emails sent between us (all of which I keep in files these days), offers me an entry into more meaningful conversations. One other younger friend sent a photo as a card, another brilliant idea, and a beautiful bonus for me (thanks Becca).
The messages left on our home phone often didn’t say who was speaking; because of course I would previously have remembered a voice. Pete doesn’t know all of my friends as well as I do, so if I couldn’t remember who it was, I started to delete them. Not to cause offense to anyone, but just because it was pointless the messages staying there. Hopefully these people tried again like one special elderly Aunt who rang and left a number of messages – and with her name, but I then kept forgetting to return the call. As my memory falters, and I either appear rude or careless, and as I stop going out as much because the inner experience is so much harder to manage these days, I truly hope my family and friends love me enough to accept it is this hideous disease called dementia, and not me, who is forgetting them or doesn’t feel okay about going out. Most of my close family and friends know I have often been the social instigator or family mediator for many years, and I have always loved staying in touch with friends, loved having Pen-pals as a kid, and letter writing to my relatives. This desire has not waned, just my ability to keep up as I would like to.
Ok, so enough of that, how would you like to send me some new ideas to help me live more comfortably and easily with dementia? So far, I have a note-book that travels everywhere with me, I use post it notes like they are going out of fashion, I have lists not just for the shopping like they used to be, but to help me remember how to shower, wash my hair, get dressed, make a cup of tea, and every other simple thing you can think of. Not obvious lists cluttering the walls and hallways, but lists inside my note-book and pc, staring at me whenever there is a spare moment. I use my email calendar to prompt me, my mobile phone notes and tasks function to assist; my doctors receptionists send me text messages or ring my husband to remind me of appointments, one very close friend even texts me to remind me it is her birthday! I use my WordPress blog, Facebook, Twitter and emails to remind me of who my friends and family are and what they (you) do, and more importantly, what everyone looks like. My mobile phone is linked in to as much of this technology as possible too… so all I need now is a few new ideas from you, and perhaps for everyone to join at least one of the social networking sites!! No, Facebook and Twitter do not pay me to say this, but perhaps they should??
How lovely, Kate-christmas cards are lovely. I only normally do christmas cards to my family, and generally on the computer as my writing is terrible! I normally don’t do christmas cards to my friends, but if my friends do a christmas card to me, i would definetly do one back and initiate most years, although, if my friends lived overseas i might do one to them or in a different city. You are so right-some friends of your partners you don’t know so well, yet there are others who you know so well. That is the case with most couples-in my family it is. My parents have some friends, who they both know equally well, yet there are others who are more my Mum’s friend, or more my Dad’s friend-most of there friends are joint but some aren’t, but they still get along which counts. My Grandparents are the same(my Dad’s parents, his Dad has Alzhiermers), they have some friends who are joint friends, others who are more my Grandma’s friend or my Grandad’s friend, but they still get on. I personally don’t care at all whether friends remember my birthday or not-i never remind them. I have a very good memory for birthdays, so i always remember most of my friends birthdays, although, i occassionally forget or get the date wrong! I personally think it’s rather rude to remind people of there birthday-i just text my friends spontaneously on there birthday. My Grandad doesn’t remember my birthday-i am completely fine with that and understand-i personally don’t expect people with dementia to remember my birthday.
LikeLike
My birthday reminder is my electronic calendar… and Facebook!
LikeLike
And these are all great ways to remember someone’s birthday! Facebook is great too as people write birthday messages-very cool! I might use an electronic calendar one day if i forgot someone’s too many times in a row!
LikeLike
Once you put them in, as long as you set up as repeating annually, they’re in forever! It’s brilliant
LikeLike
How wonderful😊
LikeLike
Hi Kate,
You can put a picture of the person in the contact list of your cellphone so that when they call you you not only have their name come up but their picture as well.
Cheers
Beth
LikeLike
Hey great bright idea Beth, thank you. I’ve got the Facebook photos up, so now just have to work how to get everyone else in! See you in Wellington in May! Cheers, Kate
LikeLike
I remember people from the past but I can’t make new memories very easily – so I can watch TV and forget what happened 5 minutes ago.
Some things I do to help …..
– keep a ‘friends’ book with notes about each friend – what they’ve told me, where they’ve gone on holidays, any new things in their lives etc.
– like you I keep all emails sent and received with important people or any groups I belong to (in the groups I delete irrelevant ones but keep all of mine ….) these emails are like a diary
– i keep a LOT of information on medical things …… a lot of separate files
eg. * calender of consultations each year
* questions and answers from each doctors consultation (each year I might have about 20 ?? visits in there)
* continuous listing of all medications as I take them ……. so I can go to the list and see the memory tablet I took in 1999 or the pain medication that made me sick etc
* listing of all my 20 odd symptoms (so I can monitor their progress and give to any new doctors)
* a “weight log” – i weigh myself every 2 – 3 weeks and write it up and then type it up later on
etc etc……… lots of things to make up for the fact that I don’t remember any of it.
Hope there something useful for someone in the above ……..
y0landa
LikeLike
This is the link to the sixty minutes transcript: http://sixtyminutes.ninemsn.com.au/article.aspx?id=8222628
LikeLike
Hi Kate, On Sixty Minutes there was a story about encephalitis which can take away womens memories. One woman used a “SenseCam” which helped her remember her day. Liz Hayes: “The SenseCam, as its known, has recorded her day with us. It’s technology researchers believe can trigger memories. Every 20 seconds it captures a picture, which Claire downloads at the end of the day. You can rewind the day?” She had it around her neck every day. Would this help people with dementia? Thought it was interesting.
LikeLike
Thank you Anne… that sounds very interesting and more importantly useful. I will see if I can track it down. Again, thank you for this bright idea xx
LikeLike
Can you make voice memos on your phone? Would that be helpful?
LikeLike
Thankyou, this sounds like a brilliant idea… not sure if my phone allows it, or how to do it, but I’ll investigate. x
LikeLike
I don’t know I’m qualified to give you ideas, I find your posts very moving. And of course frightening. What about simple pleasures that don’t need remembering? A bird table in front of an easily accessed window, where you can sit and dream and watch birds feeding and living their lives? I feel a little silly writing this, maybe it’s not at all what you are looking for.
Have a Happy year, Kate.
LikeLike
A wonderful idea thank you, and everyone else’s ideas are appreciated and worthwhile. And when I find it (!) I’ll put up the photo of the view from my office, which includes our beautiful garden… and a bird bath. Simple pleasures definitely help get through the rough stuff but it is easy to forget they are there, so your reminder is perfect. And a happy year to you too. x
LikeLike