Our holiday

I have tried to get this article written many times, but so much has happened over the past four weeks. However, I do want to share with you all my experience.

Our almost six week holiday went by way too quickly; it now feels like a dream, it feels surreal.

Many times over the past few months as my husband’s health (Motor Neurone Disease) gradually got worse I questioned whether we should be going on this trip to Italy. My husband assured me he wanted to go and we got the go ahead from his specialist and our GP.

Our flight left Auckland early afternoon so we had plenty of time and we didn’t have to rush. We stopped off in Hong Kong for three nights. We didn’t actually do any sightseeing as we had been there before and it was more of a stopover so my husband could rest.

Arriving in Rome we headed straight to the railway station and caught the train to Fiesole which is just out of Florence in Tuscany. I must say the attendants at Rome railway station were so helpful and Edward was hoisted onto the train by forklift. It took away a lot of stress for us and allowed us to relax. We were all very tired from the long flight from Hong Kong, so it was good.

We only had one night in Fiesole. We stayed in a lovely villa up in the hills and the view was just breath taking. I just wish we had been able to stay longer.

Arriving in Lucca made me feel ever so happy; my husband looked contented as he was glad to be back in our second home.

Our apartment was lovely and close to the main part of town of Lucca. It was easily accessible with a wheelchair. The only downside was the shower was not a walk-in one, which he needed.  The rooms were big, airy and tastefully decorated. I loved lying in bed looking up at the ceiling which was about twenty feet up. The big heavy rafters looked so magnificent.  We enjoyed sitting around our dining table with all the family, it was hard to believe we were all there together in this amazing place.

We did enjoy eating out from time to time. The restaurants we ate at close by were really nice, with the meals being inexpensive and tasty. On the whole, we found food to be very reasonable and the meat is so much nicer than what we buy here in New Zealand. The butcher seems to go the extra mile and turn the meat into something special. One of our favourites was a mince sandwich which had ham and cheese in the middle. The sandwich itself was mince, no bread involved – very tasty.

I was very spoilt and did next to no cooking. My family stepped up to give me a break and did all the cooking in the apartment, so I was able to sit back and relax.

The weather was perfect, the skies were a magnificent shade of blue and the only white to be seen was that of vapour trails from aircraft. Temperatures were generally in the mid-30s and we only had one wet day. In 2015 we were in Lucca in July and August the temperatures were high 30s which is way too hot for me. If I ever go back I would like to go around September as I hear the weather is just about right.

Rome was much hotter and we had four nights there at the end of the trip. We didn’t really do much as my husband was tired and by this time found travelling exhausting.

Our time in Lucca and Italy went by way too fast, and sadly because of everything that has happened since our return I have to pinch myself and wonder if we really did go.

On arriving home my husband became very ill. I had to call an ambulance and he was rushed to hospital. After many tests we were told he had a blood clot on his lung. This may or may not have happened due to flying (he had worn compression stockings). We will never know for sure, and as he had a clearance to fly we cannot have regrets.

My husband was just over two weeks in hospital and was then discharged to home where we had him for a week.  Daily carers were coming to help bathe him and care for his needs, but it soon became apparent he needed 24 hour care. This was one of the hardest decisions of my life. After our GP visited and the Hospice, it was decided he needed to go into residential care.

As I type this my tears flow freely. My husband is my best friend.  In December we will have been married forty nine years. I miss him dreadfully when I am not with him, and so do the rest of my family.  My husband did not even get to experience retirement, as soon as he left work in December the disease just seemed to take off. The Motor Neurone Disease has got steadily worse and it breaks my heart to see my husband struggling to feed himself, swallow and talk.

I am going through so many emotions – anger, sadness and frustration.  If only he could receive some sort of treatment. Sadly in New Zealand there is nothing available. This is just awful, why in this day and age is there not some sort of treatment available? My husband never smoked or drank, and hardly ever got sick. This is so unfair, I need him beside me, and we had plans and dreams to fulfil.

Motor Neurone Disease is cruel and unforgiving. Doctors do not know why people get it; no definite link has been established. Life has dealt him and us, his family a cruel blow. I am going to visit him daily and doing my best to make sure he is as happy as possible. Somehow I need to be strong but it’s so hard. I feel like I am living in a bubble and this is just a bad dream. My children have had serious health problems as well as my husband’s family, and my own parents. I really thought all this was behind us and we could look forward to a happy, healthy retirement.

The family have put together a photo album of pictures from our holidays in Italy for my husband. He loves looking at them and remembering the good times. We have friends who are opera singers in Lucca and while we were there they came to our apartment to sing for him – something I will always treasure.

None of us know where our life is going to take us. It is so easy to take life for granted and just sail along. We do need to stop from time to time and be thankful for what we do have, and treasure the small things in life. Think about the people you love and make the most of the sunshine.

I am going to try as hard as I can to make the rest of my husband’s life count. He has been a wonderful partner, and a wonderful father and Grampy.

Take care everyone.

By Kay Rayner

Writer and film producer.

Read more from Kay here