Dementia : Quando Quando Quando

When Simon was a child, his father was a renowned singer and loved to share his passion with anyone who would listen. So, when Ted's Alzheimer's really began to take its toll, Simon would load him into the car and drive around while they listened to the oldies. Even though Ted couldn't remember his own name, let alone his son's, there was something about the music that brought him back to the good ole days. Simon was blown away when his father started to sing along with the songs on the radio perfectly. Every note, pitch and lyric was imprinted on his father's brain -- and it all came rushing back when they were in the car together. These small moments were a relief to Simon. His father was still in there somewhere!

steadyaku47 comment : This reminds me of the times when my wife was still able to sing along to the oldies that she loved so much....these days she still listens off and one when I play the songs for her ...and once in a blue moon I do still see her try to mouth the words to the song....and when she tries...it makes me smile. Life is good.

Yes...I Love My Wife.

Sometimes in the midst of working on my blog I stop to think about my wife. 

No that is not right...many times during the day while I am working on my blog, I think about my wife! 

It is now past midnight. She has been asleep in the bed beside my desk, since about 10.30 PM. In that time while she has been asleep, I have have gone over to her to touch her feet to see if she is cold as she only has one blanket covering her (no, her feet was not cold) and then I had gone to kneel beside her bed to watch her face deep in sleep and at peace. And from time to time as she stirs in her sleep, I look over to see that she does not uncover herself and that all is well with her.

Meal times are getting to be a lot longer than it was a few months back. My wife has problems swallowing. This, her doctor tells me, is a normal progression for those with dementia. Eating and swallowing is a complex process involving volitional and reflexive activities of more than 30 nerves and muscles. My wife no longer has control over that many nerves and muscles to help her eat and swallow her food. So all her food has got to be mashed up or pureed.  

The consistency of the food must be just right so that it allows her to swallow the food slowly. Her drinks too have to be thicken  - yes they have food and drink thickener - to ensure that the liquid goes down her throat slowly and safely.

This is what we use to thicken her food, soups and drinks. 

Getting her meals ready takes from firteen minutes to longer, depending on what lunch or dinner is. Those of you who are caring for your loved ones who can no longer take care of themselves understand the temptation to take short cuts and cut corners when you are lazy or not in the mood to do what you have to do. My way of overcoming these situations that invariably arises in all of us, is simply this : I ask myself if I will eat what I have prepared for my wife to eat before I give it to her. That takes care of everything...but you have to be honest to yourself!

On average every mealtime will take about an hour to get through - and in between I have learned to eat my meals together with my wife....in between feeding her. This took a while for me to get used to doing because in the past, when I sit down to have my meals, I want to do so without without any interference. These days I can feed my wife, feed myself, watch TV and do a hundred and one things at the same time without choking on my food...and more important, feed my wife first before feeding myself! That is hard to do when you are hungry and the food in front of you is mouth watering good...but love conquers all!

Yes I love my wife! Thinking of her, where ever I am, makes me happy. 

Lately my physical self has started to protest. Today I had to go to this place call Carrums Down, 50 KM away from Melbourne, to collect some things for my wife. With the GPS all I had to do was to sit back, listen to the instructions and drive. I have not driven that long a distance for many many years and I found that I had to focus on driving in order to keep within my lane and be watchful of traffic around me - and these are things I use to do without blinking an eye. Not any more! Doing anything out of the ordinary requires effort and concentration lest I stray into uncharted waters. 

What comforts me is that I am aware of all these things that is happening to me and pace myself accordingly. Taking care of my wife 24/7 is no longer a chore because that has been my new normal for the last three years. And what is normal does not bother you. What I am now adjusting myself to in these last few months is to understand what is to come in the coming months or years as dementia takes it toll on the physical and mental aspect of life for my wife. That will be a steep learning curve for me but one I intend to cope with. For now all is well and manageable.      

Life is still good.

cakap cakap...the Mrs.

It has been a while since I last talked about my better half.

I talked about and share with you all how life is like with my wife because there are many others who are also caring for a loved ones who are not well. There are many others who faces the daily challenge of living with someone who has dementia. Dementia at an early stage, dementia at its onset ...or like me, dementia in a 70-year old wife that has robbed her of her ability to talk, walk or do anything for herself.     

If you want to know what it is like to live with someone with advanced Dementia, I can sum it up in one word. HARD. Hard not only for me but also for those around me and for those being cared for. How are you to know if they are well, unwell or in pain, hungry or thirsty, if the drink you are giving them is too hot or too cold, if they want more sugar or less milk in their coffee, if their feet is cold because it is freezing outside and even if they are upset or happy with their life? My wife cannot tell me these things and so I have to become her....and that is easy because after marrying her at 23 I know her well enough to be her when she is 70. 

And so that is how it is like, every day. 

I know when she is hungry, happy and upset...my wife does not get angry. At most she gets upset and that is how it has been all our life! She does not complain about anything....not even for the fact that in our life, all that I have ever got her in terms of jewellery you can possibly count on one hand and still have a few fingers not used. 

And I still remember just over three years ago when she stopped doing housework because of the onset of dementia - and not knowing that she was about to be diagnosed with dementia within a month or so - I was upset and asked her why she no longer does any housework or cooks my meals.  

She told me that she has had enough of doing all that and now I will have to do it! 

And that is what I have been doing for the past three years plus a few months. 

In the process, I have become as good a housewife as any housewife out there! Cooking, I am still working on ....and as any decent cook would know, cooking is a process and being a cook is a work in progress....and for me the work is progressing A Ok. I can roast a Leg of Lamb, do a decent Chicken Rice, Roast Chicken is too easy and feeding myself, my wife and my son is done without much hassle. And I am good at washing up too! Like those at McDonalds...I clean as I go.

The only thing that I have stopped doing what every other housewife is doing...is ironing. No can do. Too fiddly, too time-consuming and though I can do it if I really really really must ...I have virtually gone cold turkey on ironing for over two years. Since then we get non-iron clothes or wash and wear garments - which means, you wash the clothes and wear them and damm the wrinkles! 

It is almost 9 AM now and I have to start getting organized for my better half to wake up in about an hours time....think about breakfast and lunch and what else I have to do for the rest of the day. 

The trick to life is letting everything flow...all things must pass and it is up to you to make the best of it. For me, life is good.          

cakap cakap...My Wife, Zack and Me.

My wife and I have started to go out for walks and shopping together again these last few weeks. She, in her wheelchair and me doing the hard yakka...that's what the Australian say when you do the hard work...me doing the pushing! There have been a number of close calls when we came across bumps and uneven surfaces in our path.......all my fault. I have yet to master the art of pushing a wheelchair with patient and grace...but I am getting there.

Once again we are out and about in our suburbs doing things together. I have missed doing these things with her ever since her ability to walk took a downward turn a few months back. 

Today she can still get to her feet with our assist but her body shakes and trembles with the effort and I can no longer trust her to remain upright without us holding on to her and with her weight completely on our arms for support. The physical deterioration of her physical self is graphic and can be seen almost on a weekly basis but I can tell you that for me I am overwhelmed by the love I feel for this girl that I married when I was 21 and she 23. 

I am overwhelmed because as much as I can care for her, it is she that has to go through this terrible affliction that burdens those who have dementia. But she does not complain. Never have I heard her ask why she has been burdened by dementia...or maybe she does not know that she has dementia and she does not know what it is doing to her. 

This is one of the saddest thing about dementia....you wonder what is going on inside the head of those who are afflicted with it...and when the one afflicted with it is your loved ones ...it is much harder because you have to do the thinking for them. They can no longer do it for themselves...and whatever you do for them you can never know if it is enough for their physical and mental well being and comfort....so you just have to keep trying. 

Let me try and explain what this involves....

My wife and wife have been exchanging a lot of "thumbs up" or "thumbs down" whenever I ask if anything is good or bad  - whether it be the meals she is having, the walks we go for, her comfort in bed and even her preference for the clothes we pick up for her to wear in the mornings. 

Lately I have seen that she had been giving me the "thumbs down" for almost everything...even pumpkin soup which is her favorite! And them slowly it dawned upon me that she will give a "thumbs up" or "thumbs down" according to what was last shown by me....so if I reverse the sequence she will follow same. So now no more "thumbs up" or down...again I have to do the thinking for her and decide what is best for her. 

Everyday is an event for me and my son as we do the caring of her from the time she awakes until she falls asleep. I say it is an event because it is the three of us doing things together.

How many of you still do things together with your children and your wife not only on a daily basis...but, like my son, my wife and me.....many times in a day! And we smile and talk to each other while doing it all. And I am grateful that we are still doing it now when my wife is  70, my son almost 40 and me 67...I am indeed grateful. 

Life is good. 

          

cakap cakap....DEMENTIA : If you do not take care of those that you love ....why should any one else?

It has been a while since I last wrote about dementia...what it does to people who have dementia and what it does to people who take it upon themselves to care for them. 

It has been three years since my wife was diagnosed with frontal lobe dementia.

I remembered that visit to the doctor very well. My wife and I walked to the clinic  - a distance of about 400 yards. The thing that worried me then was that she was having hallucinations of a snake eating her face over and over again...and all this she told me with a smile on her face. 

She had lost all interest in doing housework. This, she explained to me, was because she has been doing housework all her life and now wants me to take over. I thought at that time that it was a reasonable thing for her to ask me to do and though I wanted to discussed it further with her.....the way she told me made me realized that it was a "non-negotiable" requests!

All this I explained to the GP. She thought that my wife was having some pressure within her brains that was making her have those hallucinations and was causing the change in her behaviour. She immediately arranged for my wife to see a specialist at a nearby hospital. They insisted that she be admitted to the Sunshine Hospital for observation. She spent two weeks there. I was with her everyday. The one hour bus trip to the hospital in Sunshine and then another hour back to our place in Marybyrnong did tire me out for we did not have a car then...but getting my head around the fact that my wife was being observed for a mental affliction took more out of me then anything else. At the end of the two weeks we sat down with her doctors and nurses and they told us about her dementia.         

That was three years ago. 

Today she no longer talks. Today she can no longer walk or move without our help. Today we have to do everything for her. 

I would not say that she is bed ridden but the only reason she is not in bed all the time is because we move her around the apartment as and when we feel she needs a change. She can eat by herself but I must be there by her side to ensure that she puts in one mouthful at a time, chew and swallow the food before I put the plate in front of her again for her to take the next spoonful of whatever it is that she is eating. 

She never asks for food, for a drink or for anything at all. She does not tell us if the food is too hot or too cold, if there was enough salt or pepper - or whether she liked the food or not. I have to do the thinking for her.  If I put a slice of bread and a cup of cold water in front of her for lunch or dinner she will eat it without a word. She will do the same thing if I put mashed potato and salmon. She might say nothing but I know that mashed potato and salmon is better than a slice of bread and a cup of cold water. I ask myself what will she want to eat...and go cook it for her....even if I am tired and not really keen to do so. If I do not do it for her...nobody else will! So this is what I mean by saying that I must do the thinking for her.

I think she understand what I say to her because I get hugs and a kiss every time I ask for it. At night I have to decide if she needs another blanket because it is cold or the fan because it is hot....and here is the hard part for me....it is easier for me to sleep through the night then have to worry about whether she is hot or cold. The reason why I do not do so is because I always worry about whether she is comfortable because she cannot worry for herself. I have to do it for her.

And this is the hard part when you have to worry about other people. Do you worry enough? 

If you are tired will you still get up to make sure that she is dry so that she can sleep through the night comfortably? 

If you are tired do you still get up to make her a cup of tea or coffee because it is tea time and she might just be feeling a bit peckish and waiting for her biscuits and tea...even if she has not said a word to you about it. 

If you are going to the supermarket to get some groceries...are you prepared to take your wife with you...because taking her with you means you have to dress her up appropriately for the weather, put on her shoes, get her into the wheelchair and wheel her out to the car. Then you have to manhandle her into the car and then put the wheelchair away in the boot and repeat the process when you get to the supermarket and then do the same thing again when you get home. And while in the supermarket you have to get her involve in getting the groceries. You can see her face light up with happiness as she remembers that she once did all this by herself! And she will insists on holding on to the basket and have it on her lap on the wheelchair. 

All in all probability what you can do by yourself in half an hour will take two hours with her. Will you take the trouble to to do it? You will be tired by the time you get home...but you know that is what you should do if you love her enough. And I do love her enough to want to do all that and more. 

I am sure you all will have seen old and sick people being ill treated in homes where they have been put in by their families because it is impossible or there is no one to care for them at home. It is a sad fact of life that all the money in the world still cannot give what these ill and old people need most...love. The love of someone who care enough for them to take care of them as they would want to be taken care of themselves if they were unwell or too old to take care of themselves. 

As long as I can I want to give that care to my wife.

It is hard...sometimes very hard for me to keep doing this 24/7. My son is always there for both of us - for my wife and me, and he makes it all bearable. We know that we are all closer as a family because every time we do something for my wife together, we are the better for it. We understand each other better, we talk to each other more and the most wonderful part of it all - we care for each other more. He knows when I am tired and he will take over from me whatever it is that I am doing for my wife, his mother.... and I know that I have to wash the dishes when he cooks...and we both know that my wife, his mother, comes first! 

Two weeks ago for the first time in my life I had a hernia - too much physicality in taking care of my wife. It still bothers me now but it is bearable and that 24/7 work still goes on. 

It is 12.35 am now. I stopped writing about half an hour ago because my wife woke up and was looking towards me...just looking and looking and looking....so I stopped writing and laid down beside her, held her hands and talked to her. She did not talk back but she listened...she is still no yet asleep but she is drifting in and out of sleep. So I slipped out of bed , made myself a cappuccino and started to write again.

To all of you who are taking care of others who can no longer take care of themselves....you all know that you do it because you do care for them. If you do not take care of those that you love ....why should any one else do it? And so we soldier on. 

Today has been a good day for me and for my wife. We still have a decent roof over our head. Good food to eat. Her bedsores are almost healed. The swelling in my groin caused by my hernia, though a tad painful, has subside. My son made pizza for dinner today - he did everything from scratch - made the dough, made the sauce from fresh tomatoes and used all fresh ingredients for the toppings with the sole exception of the salami and the cheese...and of course I still had to wash up after him!

All that we need for our life we have. We do not think about our wants...only our needs...and when you can do that...then life is good.       

cakap cakap...dementia. Life is still good.

For those of you who thinks that life must be hard for me and my son....don't. For those of you who are thinking that I deserve a better life in my twilight years and that my son should be enjoying his life in other ways......again, don't. And if there are any of you who feel that we are caught in a time freeze beyond our control where we are required to take care of my wife who has dementia ....once again, I say don't. 

Don't think any of those thoughts.

Yes we have to do everything for her. Yes we have to wipe her dripping nose every now and then. I get exasperated because she keeps grabbing everything within her reach when I am giving her a shower and of course she never says "thank you" for everything that we do for her....all this we will gladly endure and more, to have her living in the apartment with us. 

All this and more we will do just to see her, at end the end of the day, fall asleep within minutes of us giving her the final change and wash of the day so as to make sure that we put her to sleep clean and dry minus her dentures that we need to soak overnight and wash again in the morning for her to use the next day. And I mention the dentures because we must not forget to remember to have her take it out herself before she gets too sleepy to do so....if she gets too sleepy...then taking the dentures out becomes harder than trying to figure out if that dark skinned man at PWTC is a Tamil, an Indian or a senior Umno politician who also happens to be Chairman of Tabung Haji!

We have been doing this for the last two, going on to three years...though it has become more intense and demanding these last few months as my wife's dementia takes more of her from us with a vengeance that sometimes has to be seen to be believed. 

Forget what she could do last year...forget what she could do six months ago. We now talk in terms of months...weeks even, as her physical abilities diminish at an alarming pace. Notwithstanding that, her memory is still quiet intact except for the things that she has forgotten to do - she has not forgotten my son and me! For how long more it will be so is in the laps of the gods. We take each day as it comes. 

For those of you who are also caring for loved ones with varying degrees of afflictions and illness I know that the best times of the day is when they fall asleep ...for you then have your own "me" time to chill and do things for yourself....but we all know that even in those times our thoughts are still of the coming days and what it will bring to our loved ones. 

All things considered we -  my son, my wife and me -  would not want to have it any other way. Life is good.