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Issue 91, December 2005

From Hell to a Cruise and Home Again

by George Pallet

My wife Gwen, who is 71 years old, has Huntington’s Disease. For a long time we could not understand why she was losing weight and walking funny, and it didn’t seem right when our Doctor said it was simply old age. We KNEW there was something wrong and 3 years ago she was diagnosed with Huntington’s. It was a shock but also a relief because at last we knew what was wrong.

Gwen started deteriorating rapidly just before Christmas 2004. She was getting worse and we did not know what was happening to her. We didn’t understand what was going on and that was the worst part – not knowing what to expect next.

In February 2005 Gwen rang me at our son’s factory in a very distressed state. She said she was in unbearable pain and she wanted to take an overdose to end it all. At this stage we had been having real problems with Gwen experiencing burning when passing water. I came straight home and took her to the Doctors. A lady doctor was on duty and she rang our specialist and had a long talk with him. They decided to give Gwen some medicine, leave it two days and then have a follow-up. The problem did not go away and it was decided that Gwen would be admitted to North Shore Hospital so that they could carry out tests to discover what was wrong. 10 days later there was no news – they could not find anything wrong.

We did some reading and now know that having extreme sensations or feelings is part of Huntington’s.

Time passed and we were getting more concerned about Gwen. My son rang the specialist and told him our concerns, and the hospital rang on 8th April to tell us we had an appointment at the clinic. I told Gwen we would be seeing the specialist at 11am 12th April – she immediately went into denial about having Huntington’s and said that it was just old age. She seemed in fear of Tuesday coming and on Monday she asked for some Voltaren. I gave her one tablet and she demanded the container, saying that she had always looked after her own tablets.

All hell broke lose when I refused to give them to her. But I managed to calm her down and got her to have a smoke – it was the scariest moment I can remember in a long time.

The next day we kept our appointment with the specialist and he put Gwen on some new medication and convinced her to go into a rest home so that I could have a break. That Thursday our son took Gwen to the rest home and three hours later I picked her up. The following Tuesday Gwen went into the home for 4 hours. When we got home, Gwen fell out of the car and bumped her head. The next morning she said she had to go into the hospital as she had lead poisoning in her head. I took her in and she stayed for a few days until the Monday. She was very upset and wanted to know why my son and his wife had put her in the home. She called it ‘the home from hell’.

Once home, things got worse. She accused our son of painting her hair and eyebrows green and proceeded to shave her eyebrows off. When I manicured her feet she complained the water wasn’t warm enough but when I put some warm water in, she screamed and said I was trying to burn her. The next day she was telling everyone that I had thrown hot water on her fanny!

A couple of weeks went by and we talked her into going to another rest home. She was in for a week and wanted to come home for the weekend. I brought her home on Saturday – we had a lovely dinner and she went to bed about 7:30. I lay on the bed with her and she was so peaceful and loving. It was like having my Gwen back again. In the morning I cooked her boiled eggs and after breakfast she went off to the bedroom, got washed and dressed, packed her case and started walking to the front door.

I asked her where she was going. She said she was going next door to see our neighbour. Once there she told our neighbour that she needed police protection from me as I had murdered 50 kids and 9 nurses from the home.

What could I do? I laughed but it wasn’t funny. I eventually managed to get her to let me take her back to the rest home but once there; she refused to go in and begged to be taken back home. It was the hardest thing I have ever had to do – leaving her there and walking away. I cried all the way back home.

The next day I went back to see her. Just as I got to the gates Gwen ran out across the road, saw me, and jumped into the car. I locked her in and drove in – the staff and our granddaughter who was visiting were there, waiting to help with Gwen once I had stopped the car. Gwen got mad at our granddaughter because she wouldn’t take her home, then when we got her into her room, our son rang me on my mobile. Gwen grabbed the phone and screamed that I was kissing all the nurses and was even bonking them! Once again I laughed. What else could I do?

The staff then tried to get Gwen into the shower. Gwen went for one of the nurses, then saw me. She came at me with fists flying and such dreadful anger in her eyes like I had never seen before.

I left. The next day I requested the Welfare Adviser to visit Gwen, and it was a relief when she decided to admit my wife to the North Shore Hospital Psychiatric Department. The next stage of the nightmare was about to begin but at least we had help this time.

Gwen would not take any medication. At this stage she was blaming our son for putting her in the hospital. Two weeks went by and my son told her straight that if she did not take the tablets then she would never come home.

At some level that shocked Gwen enough to settle her down. Our daughter went in the next day and Gwen had been in the shower and taken her tablets. Two weeks later she was released and admitted to a hospital type rest home. Gwen was happier, she was better than she had been in a long time, and she was putting on weight again. I bought her a TV for her room, and a cabinet for her favourite treasures. The best thing was that I could have her home for the weekends. One day a few weeks later she saw a cruise ship with the Lions Supporters on it, and she said to me that she would love to go on a cruise again. We had come to New Zealand 41 years earlier by ship, and it brought back memories of younger days and happier times.

Unknown to Gwen, I enlisted the support of the specialist and got the approval for her to be able to go on holiday. I booked a 4-night cruise to Brisbane from Auckland and surprised her with the news – she was so excited and August was a month to be looked forward to! It was worth every penny to see my Gwen so happy. I feel that we are very lucky to have been able to afford such a wonderful trip.

Gwen caught the flu on our last day in Brisbane so once home, I opted to keep her home for a week until she was better. Another week later we went back to the rest home, and I discharged her – Gwen would be staying home with me for good, or until I can no longer care for her. I am so lucky that I am able to care for her at home alone - I realise that not everyone’s circumstances would allow this.

It has been a long hard battle to hell and back again. What I have learnt is that the Huntington’s gene affects each person in a different way. I am so grateful to all the wonderful staff at the rest homes and the hospitals, and to the nurses and doctors at North Shore Hospital. My heart is full of thanks to my family and friends who have given me the strength to carry on. Also a big thanks to Beth Gordon, for being there for us.

We still have unknown territory ahead of us, but for now I have my beloved Gwenny back, and there are not the words to describe how wonderful and precious that is after all the hell we have been through these past few years. Back at the beginning of the year I would never have believed that Gwen and I would end up on a cruise and then would be back together in our own home again.

But it did happen and now we make the most of each and every day that we have together. Hang in there carers – there is, always hope.

George Pallet

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