Thanks Dianne for giving me the opportunity to speak today.
Being diagnosed with dementia is scary. You try everything to avoid accepting that this could be happening to you. But you know it isn't all bad!! When YOU guys wake up and don't know what you were doing yesterday/last night how is your head? For so many people, forgetting the day or night before means a massive hangover and the wish that you had had more sense. For me it just means I don't have any idea what has happened and, probably to day will be a bit of a 'cotton wool' day, but there is no higher price for me to pay. There might be repercussions for Graham - who knows what I have done on one of these days - but I don't have problems with it!!
I was first suspected of having early onset dementia in 1998/99. Graham was pastoring a church in Meekatharra and the work was very demanding. Initially my organisational skills, were a blessing and an essential part of our work but we found, bit by bit that I was making mistakes, missing appointments and inviting people for a cuppa or meal and forgetting all about it. You can imagine how well that goes down.
As well, I was running the high school library and finding that, although I had done this work for many years I messed up over and again, putting books on the shelf that hadn't been processed, forgetting to order new books that we wanted or double ordering. In short my short term memory was getting a bit sus. I found as well that I was mixing up words at times so that what I said didn't make sense.
I was also becoming more emotional. I found that I cried at nothing but I also laughed more easily and at times without stopping. When I eventually decided to speak to our Dr. about it she wasn't surprised, we often had contact with her because of some of our older congregation members and she had noticed a problem. Her response to this was quite devastating for us - basically I think you probably have early onset dementia - I will do some tests to rule out other possibilities but if it is there isn't really anything we can do for you, you need to just get on with life and enjoy it while you can.
That was it, I had the tests done and they decided that it was in fact early stages of Alzheimer's disease and that was that. We stayed in Meeka until the end of 2000 when a number of circumstances meant that we moved to Albany. What a blessing that move has been. The weather might be awfully cold here - I don't know if I will ever get used to that - but the welcome and help we have received has been so warm that it has made up for it.
I have tried, as far as I am able, to understand the process and what is happening to me. It seem to be harder lately, although I'm not sure if its me or the information I am finding. I used to have a very good brain and I high IQ but some of it has had me stumped lately. It's hard, knowing that I used to lap up that kind of material just a few years ago.
So - what is it like to be me now? Well firstly, I'm still the same basic me and I believe that won't change. I love people, I love to help and I love to listen when people have problems, I wouldn't try to advise people what they should do these days because I can't trust my judgement now, but I can still share some of my experiences in the hope it might help. I still love to be with people - it just has to be in smaller numbers - I can't cope with 'confusion' of noise. My values are still the same; My faith is still the same - my relationship with God hasn't changed and in some ways I find I trust him more than ever before - He holds my future and that is my security.
My relationships with others have changed in some ways, I still love Gra and my family and friends but I have become more dependent, less outgoing, and unable to help in many of the ways I could before. I need help with some of jobs that to me have been basic skills and some I have had to give up completely. I find that very frustrating. Life changes dramatically from day to day.
I have good days and bad days and, like the little girl in the nursery rhyme that had a little curl, when I am good, I think any way, that I am very very good; but, apparently, when I have a bad day I can be horrid. On the good days, I can sometimes even feel like a fraud, I can question if there really is anything wrong with me until I try to put into practice one of the lost skills then I have to agree, there really are changes. What I would say here though is that I get a greater thrill now out of still being able to do things than I ever did out of doing them well.
I had occasion lately to make some celebration cakes and wasn't sure if I still could do it - in the past I had been in demand to make wedding and 21st cakes. My first try at the icing was a disaster so I asked my friend Di to help me and I was really happy with the outcome - I must say that what left the house these last few weeks would not have been acceptable to me 5 years ago but I was thrilled that others thought they were good and I was content with the work I can still do in this way. Its a great feeling to still achieve at an acceptable level.
It's so important to maintain our skills for as long as possible, accepting help when necessary. Just recently our grand daughter Sharon - almost 3 years old rang me up and said 'Grandma - you can sew can't you,' not wanting to disappoint her - 'well I suppose I can sometimes darling, why? 'you could sew a humpty couldn't you Grandma, you know the one from Play School' - that would be great for me for Christmas'.
What can you say to someone like that? I had to give up sewing some time ago - it had become too hard, I'd even given away all my patterns and just kept the machines for mending and straight sewing. But how can you let a 3 year old down when she has such confidence in you? So Elvie, my respite carer came to my rescue and helped me to cut out and work out how to put together the Humpty who now sits in the Christmas box waiting for one little girl who had confidence in her Grandma. I can't tell you how good it felt - the sense of satisfaction at, again achieving something I thought was gone for good. Sure it wasn't anything like the intricate wedding dresses I have made in the past, but my satisfaction was just as great and it will be wonderful to see her face on Christmas morning.
On the bad days that's a different picture, I try to stay away from everyone because you don't know what will happen. A bad day may be just frustration because nothing works - a time when I can't remember so many things. I think the best description I have heard is - we have cotton wool for a brain - its like you are in a thick cloud. You know how hard it is here in a heavy fog, nothing is seen clearly and you really have to concentrate so hard to see where you are going and what is happening. Its hard to see through it when you are driving, so in a similar way this cotton wool is hard to think through. If that's the case then I can start any number of jobs and complete nothing, burn every pot for the meal, probably no water in the pots to start with or just forget completely about cooking the meals at all.
Days come when at about 7 o'clock Gra will say - So should I get us some takeaways tonight.? Gra can remind me that we have to go somewhere or do something and 2 minutes later I have forgotten what he has said and still haven't got ready or started whatever I was meant to do. You wouldn't believe the problem it is to get me to remember pills and puffers. I find them hard at the best of times but on a day like this he has to stand and watch me take them. As for the other kind of bad days - well you'll have to ask others about them, some times I just don't remember them at all, at best I will have a hazy recollection of them but have no clear memory and details are lost. Gra or others will say something about the day before, someone who came, something we did and I have no recollection. Still, I have learned that there is no sense worrying about such days - I can do nothing about them so I might as well just let them go.
Our response to my diagnosis has changed. Instead of being a terrible tragedy, we now look on each day, each week and we hope each year as something special, a time we can still spend together, doing the things we choose to do to live our lives to the fullest possible, while taking into account my limitations. We find also that responses to my diagnosis by others are also different, I think, because we now accept my situation. Initially the family in particular found it hard to accept. My Robyn used to get mad at me for repeatedly telling her the same thing, or forgetting to tell her things she thought I should had told. Now she has come to terms with it and has found out for herself what is involved, although it is interesting that none of them have been prepared to do the family course offered by Alz. W.A. - they prefer to get their information from the Internet. - anonymously. Other family members are making contact more often and just making sure Mum is O.K.
People generally seem to be surprised that I can still communicate well on most days, sure I sometimes struggle for the right words, but usually I can still get across what I want to say. I guess they have the same problem that one of the doctors I saw had, the impression that, if you have dementia then you can't communicate. It is one of the blessings of the earlier diagnosis now available, and the medications we can receive, that we can now be so much longer able to function at a reasonable level.
I won't talk about the medications I am on today because Nola and Yvette will have already answered many of your questions about them and I know that the Dr. who is speaking later will talk about this, I will just say that they have made a marvellous difference to me and to some of my Internet friends. They make a wonderful difference to those of us who are fortunate enough to be helped by them. You just need to be under a doctor who understands dementia and will work with you for the best possible outcomes.
Some of the other problems we have had to face
Some time back we moved house - sold the one we were living in and moved to Lockyer. At that stage I was still driving. Problem was I forgot that we had moved and several times went back to the old house and then wasn't sure for a time where to go from there. As well, it was difficult at night to find my way around our new house. While I am O.K. with our house now it is still very much a problem if we go away. We ran into difficulties when we tried to go on holidays, travelling around and changing places we stayed. My confusion was such that we came back home early. Any change is hard to cope with. I can't go shopping alone any more, I can't even be left on my own in a shop for long because I may not remember who I am with or which car I am in.
I have had to stop driving, even with someone with me because my judgement isn't right anymore and I was a danger on the road. That was probably one of the hardest decisions we have had to make. That more than anything underlined my loss of independence. Elvie now takes me shopping each Thursday morning to give Graham a break and that is really good, I can easily assess that as an enjoyable outing with a friend, but giving up driving means I have to depend on Graham or others for every where I want to go because, even though the bus goes from outside our door, we wouldn't be confident that, if I went on it, I would come home O.K.
I feel bad at times at what I have done to Graham in this. My being sick has cost him his ministry - he gave up his church to care for me. Also for all the jobs he does because of the problems I have, not only with this, but also because of asthma and my back, he no longer has the opportunity to do the things he wants to do, or to work outside the home, he needs to be there for me, yet he does it so good, never tries to make me feel bad about it. He says he is glad to be free to stay home and care for me. What a blessing to have a husband who cares and loves so much! Even in this though there is a positive, I now spend more time with my wonderful husband than I ever did before and although I have always known that he was a great man, I didn't know how good until the last few years.
Some of the other problems have been that I say things without thinking - or say things I normally wouldn't say. I sometimes think out loud, and I'm sure you all know how we mull things over in our minds that we would never say out loud while we work out the best way to put things so as not to give offence. You can imagine the results when I think out loud about a touchy situation!!! I have lost my filter when it comes to knowing the right thing to say. It is never my intention to deliberately hurt people - in fact, for a time I wanted to hide away and not see people because of the offence I had caused in this way. Now I just hope they will understand and accept that it is now a part of life for me and, whilst I will try to avoid it, I can't help it when it happens.
Another problem for Gra can be that I will rehearse a conversation I need to have with him if it is something important that I need to say. The only problem is I can, on a poor day, think that we have already had the conversation and leave him to get on with whatever it is he doesn't know he is supposed to do.
I guess the final disadvantage I would mention is that of forgetting to pay our bills. From the time we were married I had handled all our finances, we had decided that I was better equipped to do so. For the first 12 years or so it worked fine, then I started to get mixed up and we ran into problems when, not only did I forget to pay bills, but, because we had more money left than I expected I would go out and spend it!!- bad move - it then meant nothing left to pay the bills with! We have overcome this problem - temporarily - I have taken to Internet banking and put the bill onto the scheduled payments as soon as they come in - then file them away and wait for the computer to pay them for me when they are due. This works fine for now, however the day will probably come when I can no longer do this and you should see poor old Gra as he tries to learn how its done!! - he might be a wizz as a mechanic but as a data operator - forget it - he will obviously have to find some other way to remember them if and when that time comes.
I've talked quite a bit about the disadvantages and very little about the advantages. Believe it or not there are a few. I said before - I get to spend more time with Gra - he is now a full-time carer for me and I love this part of our situation - I hope he feels the same but you would have to ask him. I don't know about you, but there are very few movies that I think are worth a second or third viewing. Gra on the other hand has favourites he loves to watch time and time again. it used to drive me nuts. Now I can't remember what I have seen from one day to the next, so he can watch them to his hearts content and they are always new to me. I must admit though that a few of his `special favourites are actually sinking through as we have watched them for yet another time and I can actually remember some parts. On the whole though it doesn't bother me as it did.
What people say to me is another thing that can be either good or bad, there are times when it is a problem, more for them than for me, when they have explained things to me, then I can't recall what they wanted just a short time later, so they can come and unload and know that, regardless of what they have said I will still have the same greeting for them next time we meet. There is another big advantage with this as well, I have had folks apologize for things they have said to upset me and I have no memory of it. Works well for me - quite simply if you say you did it that's O.K. - apology accepted.
And what I would still class as the biggest plus in this - WE ARE SUPPOSED TO EAT CHOCOLATE- I'm told that its only the dark chocolate that help and that suits me fine - do you know anything better than a good dark 'Old Gold' chocolate with roast almonds?
Some of my friends have asked how can we help you and I guess this is just my own personal answer, but if you have someone you love and/or care for take the time to find out what will help them most. For myself I would say just these few things. If you find me and I looked lost or not sure where I am or where I should be, then please return me to Graham or, if he's not around, to Elvie or Di. Accept me where I am today - don't be scared to ask me to do things so long as it is O.K. if today is one of those days when I can't help you. Allow me to do what I can - to be as independent as it is possible for me to be but be ready to help me with the task if I need it.
If you want me to do something for you - give me plenty of warning so I can do it on a good day. - it also helps to ring and make sure I have remembered If I say something that doesn't sound right or is offensive then check if it's what I meant to say, if I do or say the wrong thing, please remember that I don't ever want to hurt you, take into account where I am at today. If I don't make sense ask me again and also be patient if I have to ask you to repeat yourself. Depending on the day it may take several explanations for me to work out what it is you want. If I'm finding it difficult with the right words - give me time and then help me if you can get the gist of what I'm trying to say.
For me these would be the main things that would help, sure when we do the right thing, especially if its on a bad day, let us know. Encouragement is our life line on a bad day.
Living Day by Day
Gra and I do make some plans ahead - after a fashion, but these days it's more of a day by day affair. All our plans have to be flexible I have to accept myself for who I am today, each day. I have had to learn to accept the good days living them to the full and not fret over the bad ones. I find changes are occurring all the time and we am having to adjust to them. It gets confusing because what I can do one day maybe I can't on another. What I fail at today I might still be able to cope with on a better day. This is one of the things I am most thankful for with my dear husband.
He understands where I am at and allows me to do what I can and goes out of his way to help me be able to achieve all I can on the good days, especially encouraging me to try the things I want to do when it seems right and picking up the slack and doing those things I forget or can't do.
There is grief when I find something that I really have to put into the 'too hard' basket. I know that I don't have the same skills when it comes to working through a problem. It takes me longer to come to terms with things that go wrong. One of the things I found hardest was to learn that its O.K. to grieve but I can't get bogged down in it. I have to move on and maintain and be thankful for the skills I still retain.
We have choices in every situation and we are learning anew to focus on the positives and not the negatives. I now have to accept my limitations and try to do my best within them. Doing what I can and resting when I need to. Rest is so important. I can achieve more when my life isn't too busy. Some of the most effective ways I have found to do this are the places where I link up with others in the same boat. Living with Memory Loss program - I'm sure that Dianne will talk about that later, for me that has been a great help and I still get a lot out of the ongoing support group - (explain). Ladies Club - I won't say much about these things but I just want to pay tribute to what Marlene, Lorraine and Cheryl do to help a group of us who are in the early stages of dementia to enjoy life and to socialise in a way that means we don't go home exhausted by the effort to save face' - we can just be ourselves and know that the others understand.
My other place where I find a real support is on the Internet. There are 2 sites, both very easy to reach that are a real blessin- firstly the Alzheimer's chat room. Man do we have some great conversations there!! The best thing about it is that it is restricted to people with dementia of any kind and their carers. This means that we understand each other, respect the way each one is functioning on that particular day. If we are muddled, who cares, if our spelling goes to pot, same again - what does it matter. We can usually understand what each one is saying. If our answers don't match the questions - well usually someone else has the answer anyway so its cool. If we just want the company and don't feel like joining in we can just log on and watch what the others have to say - no pressure. When one is feeling down the others group round and do what they can to support and encourage that person. I must admit it is one of my retreats when I just want to opt out but can't stay in bed. The times for these chats are 9am to 10 am daily, 3pm to 4 p.m. Tuesdays for the Pacific chat and, when we can't sleep, 3 am to 4 am each night. I'd love to see some of our folks from W.A join us there as well.
The other place I like to visit frequently is the DASNI site DASNI stands for Dementia Advocacy and Support Network International. This group was is made up of people from around the world who are in the early stages of dementia and are working for better conditions for all in our situation. If we are to have a significant voice in trying to change things for people with dementia we need to be connected to this group. If you are in the early stages then why not join us there. If you care for someone at any stage of any type of dementia,why not get involved. I know your time is precious when you have to care for someone, but this is a way we can make a difference. We have a Yahoo site where we can post messages and questions and receive feed back from the others. Feelings are freely expressed as are our uncertainties and we can help each other to face the challenges of daily life. Photos introduce us to each other and to the newest members of our families. I have printed off the photos of many of my friends and have them near the computer to help me in the chat room each day to relate to who is on line. One of the things I have learned though through my communications on these sites is how blessed we are to live in Australia with these conditions. People from overseas can't believe the help and assistance we receive. My friends on the net are from USA, Canada, England, New Zealand and eastern states. I even noticed a posting from Israel this morning! The other countries are amazed at the money the government makes available to help us. The medications we take for granted on our PBS scripts are not subsidised in many places as ours are. The ones I take for dementia would cost me about $300 per month if they were not subsidised. The LWML programs we enjoy freely here are not Government funded in some other places.
The clubs we have at Hawthorn House are special, even here in Australia, our eastern states counterparts are envious of them. So, if you suffer from memory loss, or one of your loved ones does, be thankful that Albany is so far ahead of so many places and I would encourage you to make use of what is available to us. You know that old saying, use it or lose it - well that applies as much to our Gov't assisted programs as well as it does to our abilities. Many people still think, as we did when I was first diagnosed, that it is the end when someone is diagnosed with dementia. But I want to assure you that life can still be worth living even with dementia. The choice is ours.
The advances that are being made in research and the new medications being developed hold out a hope for all of us that we can still have an enjoyable and relatively productive life for quite some time ahead. I may not know all that my future holds, how far I will travel in this journey that is dementia, how and when a cure or release will come, but I know that I look to that future with confidence, trusting in my God to keep me and help me to live my life, with wisdom to its fullest each day that I am given. And I thank Him for precious friends, all the folk who help and support me, and for the most wonderful husband in the world.