My Story

"My Journey With Frontotemporal Lobe Dementia"

Written by Lynne

I was asked to write a small article on how I was feeling and coping with my husband having Frontotemporal Lobe Dementia (FLD). My husband's family had organised a Benefit Night to help us financially and to donate money for research into this horrible disease. I had already started with my Journal so I just took bits and pieces out of it so I will put that into this story. The Benefit Night was held on 5th November 2006 (last Sunday evening).

To begin with I would like to thank you all for donating your time and money to this Benefit Night. There are a lot of you that I have never met before and quite a few of you that I haven’t seen for many years. I am extremely grateful to you all for being part of “Paul’s Mind Matters” Benefit Night.

I’m in the process of writing a journal, which I’ve called “My Journey with Frontal Lobe Dementia”. I thought it would help me remember things in detail and I’m hoping it will be good therapy. When I can get a start on it, it is really therapeutic but most of the time it’s another frustration for me. I’m sitting here at the computer now and within the last ½ hour Paul has come in four times and asked me “What are you doing sweetie” and he sits on the floor beside me playing with Libby (our little dog). It is so distracting. I just wish he would leave me alone so I can jot my thoughts down without any interruptions. Especially when you’re trying to write about the someone who is right there next to you. I know what I want to say but when the flow keeps getting interrupted – it just doesn’t work. It’s like most things now and in a nutshell, that’s what this is all about. It is a very inconvenient interruption to our life and to the lives of those who are close to us. The frustration and anger towards the interruption doesn’t go away. It just abates for a short while as you find a new routine within the chaos and humour within the sadness.

Frontotemporal Lobe Dementia (as it is now being called) is such a cruel disease. It’s a real kick in the teeth. But then what disease isn’t. I would probably say the same thing if Paul had been diagnosed with cancer.

Going through the diagnosis procedure is hard. A lot of time is spent on the computer researching FLD and finding support groups for people who are going through the same thing. It’s a disease that doesn’t come up in the media a great deal. And I’d never really had too many conversations about these kinds of diseases before Paul was diagnosed. I have known people who have suffered from or who have had family that have suffered from Alzheimer’s but I had never heard of Frontotemporal Lobe Dementia. There is so much you need to know i.e. what’s going to happen?! What happens at each stage? How will Paul feel about what’s happening to him? Will he be in pain? How long do we have with him? When will he forget who we are? There were just so many questions we wanted answered but it’s also the questions that you don’t know to ask that need answered, if you know what I mean.

I was lucky in the respect that I met a lot of good people through Alzheimer’s Australia in Geelong that have supported Paul and me. They sent us off on a Retreat to Anglesea for three days which was very helpful, informative and relaxing and I’ve also attended quite a few workshops, which teach you how to deal with not only the disease but also your emotions. Believe me, it’s been a roller coaster ride for the past two years. I go through the grieving process over again whenever the disease debilitates him further. I’ve felt anger, resentment, jealousy and any other emotion you can think of.

Just when you’re thinking about retirement – WHAM!!! We had just finished building our dream home in Wagga Wagga. In partnership with my daughter Tracie and her husband Tony, we were in the process of starting up an Indoor Play Centre in Geelong. We were going to sell our house and move to Geelong and help at the Centre and also travel around and find other areas that would benefit from ‘Run-M-Ragged”. What a life! We thought we would buy a four-wheel drive and a caravan and have the time of our lives. Unfortunately that was not to be. The Centre called Run-M-Ragged has opened up and is proving very successful but we’re unable to be involved in growing the business to any hands on effect.

I’m not really sure where to start and where to finish with this so I will continue by describing what our lives are like at this point in time.

Paul is very restless. When we first moved to Geelong he was still able to mow the lawns. I would have to show him how to turn the mower on but once he got started he was fine. I must admit the lawns never looked worse. There was no pattern and most of the in-ground sprinklers and drainage covers are broken. I solved that problem by going out and buying him one of those rotating push along mowers – no petrol, no switches, just push, push, push. Once he gets started on the mowing he will mow the lawn three times a day. It keeps him busy. He also loves vacuuming which also happens maybe twice a day and in between he gets on the floor and sweeps up with his hands. He can’t stand any lint or dirt on the floors. Paul also likes to clean up the kitchen at night time after dinner which is great. There’s only one problem – I can never find anything. He puts everything in a different place every time. If I look hard enough I can find an item eventually. Plastic containers end up in the fridge. I use to get frustrated when I was looking for things but now I just think that at least it’s not hurting any one.

Paul is always leaving doors open. If we go for a drive anywhere he’ll get out of the car and just walk off and leave the car door open. Paul is quite a heavy smoker and when he goes outside to smoke he ALWAYS leaves the doors open which can get frustrating in the middle of winter. He use to get so upset with the kids if they left the doors open. He would say “What are you trying to do – heat up the whole of Wagga” and now that’s what I say to him except its “Geelong”.

Driving has been a bit of a hazard at times. Twice I’ve been driving from Melbourne to Geelong at night and Paul’s opened the car door while I’m driving at 100kp per hour just so he can have the light on (he dropped his lighter and couldn’t find it). You learn as you go along. Now I put the central locking on when we go any distance (as you would with kids).

When he comes to bed at night I always have to go downstairs and check on everything. Make sure the back door is closed and locked, that the gas is turned off, that he’s put his cigarettes out properly and the lights are turned off. The other night I came downstairs and found he had two of the gas burners on the stove lit and the other two just turned to the on position with the gas going. That really scared me because I was just starting to get use to checking on doors, lights and cigarettes. I’m thinking that perhaps Paul might have to give up the only thing he has left that he’s really good at, smoking. I have caught him throwing lit cigarettes in the bin.

Paul has lost his organisational skills, his ability to have a conversation with people; he is unable to understand instructions. Paul was a man that could put his hand at just about anything. He was a “Jack of all trades”. He built our dream home, he taught car restoration at TAFE, bought a sheep property and ran it successfully without any prior experience, was the NSW State champion Practical Pistol shooter at Blacktown Pistol Club in the late eighties, also one of the top three in the country. He flew ultra light aircrafts, etc. etc. How could this happen? His famous saying was always “It’s not rocket science! – Me Panelbeater/Spraypainter – I can do anything”. The worst thing anyone could say to Paul was that he couldn’t do it. He’d always say “WATCH ME!”

He will eventually become mute. FLD patients lose the ability to swallow, simply forgetting, if you like. They start to chew and cannot get out of the chewing cycle. His brain will not tell his tongue to swallow the food.

Another thing Paul has lost is his empathy for other people. I found that to be one of the most traumatic changes. When you’ve been married to someone for nearly 37 years they become your confidante. That person you talk to when you’re upset, the shoulder you cry on when things aren’t going right, the person you know you can rely on for a cuddle, the person that tells you everything is going to be alright when you’re having a bad day. The person laying in bed next to you at night making plans for the future, reminiscing about the past. All those things are gone. I don’t have that any more and I miss it.

Paul isn’t going to get better and there isn’t a cure for his disease. But there are positives that have come out of this. I have met some incredible people that I wouldn’t have met otherwise. I am lucky, I have computer skills, I can drive, I have people I can depend on for advice, and I have support from my children, our families and a few close friends. Tonight is a huge example of how lucky I am. This benefit is testament to that. People that I have never met before so ready to help, and, with something that none of us understand.

There are so many people I would like to thank and acknowledge. First of all I would like to thank Marina and Anthony. Without them this night would never have happened. Paul’s other brothers Ian and his wife Karen and my nephew Luke who put the invitation together – what a remarkable job they have done along with Michael and Som Porn and David and Poh. They have all worked as a team to make this night a success. I would also like to thank everyone who donated gifts to auction and bought raffle tickets and of course the people that bought tickets to attend tonight’s function. What an incredible effort you have all made. I would also like to thank my brother Bob and his wife Debra for coming. The support that my children and I are receiving makes me feel so humble.

I know the road ahead isn’t going to be easy but each day is a new day and we make the most of it and enjoy the fun moments we have. There are always funny moments. Like when Paul got into the car when we were on our way to see his new Specialist who was doing the diagnosis. We were all very tense and Paul and I got into the back seat while my daughters Tracie and Michelle were in the front. Paul was having problems . . . he forgot how to put the seatbelt on and had it tangled all around himself. We all just burst out laughing – it was such a site. It cleared the air. There was another time when Paul went out the laundry door and forgot he’d gone out that door and was bashing on the bi-folds out the back. I heard this almighty racket and there he was just bashing away yelling out for me to let him in. I couldn’t work out how he had locked himself out when he didn’t have a key. I thought that perhaps he’d gone out the front and climbed over the fence. He just couldn’t remember. It took awhile but I worked it out when I went into the laundry. A-HA!

There are very nice times too. At nights recently when Paul hops into bed he has been giving me a back massage. It’s just wonderful. I get a few each night because after his massaged me he remembers he hasn’t cleaned his teeth so he has to hop out of bed and go and do it. Then he gets back into bed and I get another massage because that’s what you do when you hop into bed – you give ‘Harry’ (me) a massage. Then he decides he better go to the toilet so out he hops again and goes to the toilet and then hops back into bed. Lynne gets another massage. Oh no, he’s forgotten to wash his hands and out he hops again to wash his hands and once again Lynne gets another massage. Now who’s lucky – Harry’s lucky! The funny part is that each time he finishes his massage he says “that’s enough – I can’t spoil you too much”.

We wonder why a ‘God’ would deal out these illnesses. I have no idea at this stage but there must be a reason and no doubt I will find out one day or maybe I won’t but I can tell you one thing and that is that I really appreciate and enjoy the good days and thank God for all the first-class things in our lives – our good health and our children’s and grandchildren’s good health. I never realised before how lucky I am. I have wonderful family and friends whom I love dearly and I wouldn’t trade any of them for the world.

I am truly blessed.