Taking a holiday since diagnosis -

[MerryB]

We have just returned from taking a Caribbean cruise since receiving diagnosis for my husband 18 months ago. This was a holiday my husband always enjoyed and did still enjoy this time.
The stress levels I experienced were much greater than I had anticipated. Fortunately he does not remember any incidents that occurred. I did lose him once for an hour on board the ship when the lift doors closed before he could get out!! That was a harrowing 1 hour spent searching lifts and decks for him as I knew he could not find his way back to the cabin. I eventually asked for assistance and members of the crew were provided with description and picture of him and found him wandering on one of the decks. I think I aged 5 years in that hour as we have not been apart from each other since I retired to be at home with him 18 months ago. He has no recollection of the incident and in fact wandered why I was so hyper about holding his hand each time we got in any lift following that incident.
I learnt many things during this break. My husband no longer enjoys beaches or being in the sea and requires much encouragement to dance, and he found the formal setting of black tie evenings very difficult, something he had always enjoyed in the past, so we did not attend the last two evenings as I realised he had so much difficulty coping with the formality and bustle. It was lovely to see him dressed so smartly appearing like the person he used to be and he enjoyed the praise given at his appearance.

The "sundowner" syndrome he sometimes suffers became a routine daily occurrence and some agitation and repeated behaviour occurred often. I think this was due to tiredness and general fatigue but once I realised what was happening we managed it by resting in the cabin and having a sweet treat ( pastries or chocolate).
This holiday was enjoyed, but I became very aware I cannot leave my husband alone or trust that he will remember where he left me, even when just popping to the toilet or seating ourselves in dining areas.

I also became aware of just how many other people travel and care for loved ones with similar conditions. It is much harder and the onus of all responsibility is suddenly completely on you.
The safe and familiar routines we have at home faded away and the new environment provided new challenges for both of us. I also realised that it would be easier to have friends with us another time to help maintain his where abouts and safety.
We did laugh, and even dance and enjoy trips etc. I miss the person he used to be but still love the person he is.
I will go away again , though not sure if it will be for the same length of time.
Still, this life we have together is a constant learning curve for both of us and we will continue to make the best of it as long as we can.

 

[Grannie G]

Our final holiday was when my husband had a panic attack while we were on our way to visit Pompeii and Mount Vesuvius. He had been fine till then but something happened which cause confusion and fear and I had to sit with him for two hours before we could return to our hotel.

That was when I decided the risk wasn`t worth taking.

 

[AliceA]

Our final ’holiday’ may seem strange. Travel had been important, especially during retirement. We often had travelled using public transport, planning routes abroad in the winter.
Loss of short term memory left strong long term memory, this meant ambition was still there. I had cancelled brochures etc. But free stuff still came! This became a real issue.

I explored all options, age was a factor as both were in our eighties, I could not physically handle things as in the past.
I was exhausted!
I found a care home, with beautiful gardens, not too far away, a driver to take us and collect.
I explained they could only offer separate rooms, but it would be like courting, it became a joke!
I was offered several rooms so I chose one at the other end, with a door into the grounds, we met for meals, strolls around the garden and a trip out. In between I slept, slept and slept.
I used to to tuck him in at night.
I was surprised to observe, how well he settled in, he enjoyed people watching, loved the attention of the staff. How he could sleep in a chair so must have felt safe.
We joined in some activities, sometimes I slipped away.
For myself, it was a relief to catch up on sleep, not to feel fully responsible for everything. I met some interesting people, residents, visitors and staff.
I shared experiences.
My dearly loved husband relaxed, as on a holiday.

Now this is not for everyone I agree, but for us the timing was good, it gave a taste and understanding of care home life so when I needed hospital treatment the idea of a ‘holiday‘ while I recovered at home was easier him as well as me.
Seeing how staff managed situations gave me confidence that he would settle If I was not around.
I found confidence and anxiety are catching.

The final night was interesting, there was an awareness of the journey home ahead, staff found him up and dressed several times. It emphasised how anything that disturbed a quiet routine even good events affected anxiety levels profoundly.
Fortunately we were only an hour away, any thing more than that would have difficult.

I am not suggesting this suits that many, but we need to adapt to the circumstances as they are not as we remember they were.
This is not lowering standards just changing them!
it was not cheap, but the sleep was worth every penny!

 

[cumbria35]

We have just returned from taking a Caribbean cruise since receiving diagnosis for my husband 18 months ago. This was a holiday my husband always enjoyed and did still enjoy this time.
The stress levels I experienced were much greater than I had anticipated. Fortunately he does not remember any incidents that occurred. I did lose him once for an hour on board the ship when the lift doors closed before he could get out!! That was a harrowing 1 hour spent searching lifts and decks for him as I knew he could not find his way back to the cabin. I eventually asked for assistance and members of the crew were provided with description and picture of him and found him wandering on one of the decks. I think I aged 5 years in that hour as we have not been apart from each other since I retired to be at home with him 18 months ago. He has no recollection of the incident and in fact wandered why I was so hyper about holding his hand each time we got in any lift following that incident.
I learnt many things during this break. My husband no longer enjoys beaches or being in the sea and requires much encouragement to dance, and he found the formal setting of black tie evenings very difficult, something he had always enjoyed in the past, so we did not attend the last two evenings as I realised he had so much difficulty coping with the formality and bustle. It was lovely to see him dressed so smartly appearing like the person he used to be and he enjoyed the praise given at his appearance.

The "sundowner" syndrome he sometimes suffers became a routine daily occurrence and some agitation and repeated behaviour occurred often. I think this was due to tiredness and general fatigue but once I realised what was happening we managed it by resting in the cabin and having a sweet treat ( pastries or chocolate).
This holiday was enjoyed, but I became very aware I cannot leave my husband alone or trust that he will remember where he left me, even when just popping to the toilet or seating ourselves in dining areas.

I also became aware of just how many other people travel and care for loved ones with similar conditions. It is much harder and the onus of all responsibility is suddenly completely on you.
The safe and familiar routines we have at home faded away and the new environment provided new challenges for both of us. I also realised that it would be easier to have friends with us another time to help maintain his where abouts and safety.
We did laugh, and even dance and enjoy trips etc. I miss the person he used to be but still love the person he is.
I will go away again , though not sure if it will be for the same length of time.
Still, this life we have together is a constant learning curve for both of us and we will continue to make the best of it as long as we can.

Our final ’holiday’ may seem strange. Travel had been important, especially during retirement. We often had travelled using public transport, planning routes abroad in the winter.
Loss of short term memory left strong long term memory, this meant ambition was still there. I had cancelled brochures etc. But free stuff still came! This became a real issue.

I explored all options, age was a factor as both were in our eighties, I could not physically handle things as in the past.
I was exhausted!
I found a care home, with beautiful gardens, not too far away, a driver to take us and collect.
I explained they could only offer separate rooms, but it would be like courting, it became a joke!
I was offered several rooms so I chose one at the other end, with a door into the grounds, we met for meals, strolls around the garden and a trip out. In between I slept, slept and slept.
I used to to tuck him in at night.
I was surprised to observe, how well he settled in, he enjoyed people watching, loved the attention of the staff. How he could sleep in a chair so must have felt safe.
We joined in some activities, sometimes I slipped away.
For myself, it was a relief to catch up on sleep, not to feel fully responsible for everything. I met some interesting people, residents, visitors and staff.
I shared experiences.
My dearly loved husband relaxed, as on a holiday.

Now this is not for everyone I agree, but for us the timing was good, it gave a taste and understanding of care home life so when I needed hospital treatment the idea of a ‘holiday‘ while I recovered at home was easier him as well as me.
Seeing how staff managed situations gave me confidence that he would settle If I was not around.
I found confidence and anxiety are catching.

The final night was interesting, there was an awareness of the journey home ahead, staff found him up and dressed several times. It emphasised how anything that disturbed a quiet routine even good events affected anxiety levels profoundly.
Fortunately we were only an hour away, any thing more than that would have difficult.

I am not suggesting this suits that many, but we need to adapt to the circumstances as they are not as we remember they were.
This is not lowering standards just changing them

 

[cumbria35]

We also loved travelling and were lucky enough to have some wonderful times. Our last holiday was to menorca four years after his diagnosis. A small hotel with lovely staff and visitors, many oh whose had holidayed there many times. We were made very welcome by most people who were aware of his illness but were very understanding.. mealtimes were made easy by the staff seating us near the buffet. We enjoyed the pool and the staff arranged us a hotel taxi to the harbour one evening,. We managed a very enjoyable trip round the island too. One member of our family wasn’t happy but I explained that while not cheap it was worth every penny, respite for him and me. I had arranged assistance for the airport which was evcellent. A lovely week with lots of happy memories now that he is in a care home. This illness is certainly a steep learning curve but happy memories help.

 

[AliceA]

Yes, Cumbria, happy memories are the refuge we need. So a very good investment.
Now I am alone and happy memories do help put the caring years into perspective for me.

I found it very educational to be a ‘fly on the wall’ In a carehome.
many had dementia but not all. It gave me insights on how people act when the bustle of visits etc. are over.
This was before the dire restrictions imposed by Covid, though.
It also made me accept at some point that I and visiting carers would not be enough.
It was reassuring to come across the way many carers were going the extra mile and genuinely cared.
Also how some settled very quickly after visitors left. One would moan to her son but was cheerful afterwards! Perhaps to ensure he was not complacent?

it cannot be easy for you, Cumbria, it never is, take care of your self. Xxx

 

[AliceA]

Before the final 'holiday' we went on a canal hotel boat a couple of years earlier that worked quite well as in UK and not to far to travel.
We had the challenge of dysphagia, common with some dementia. I had to monitor the texture of everything eaten, the crew were brilliant.
Most of the trip was fine, crew helped people if needed on and off boat.
On one occasion though the mooring was difficult, we decided not to get off, the plank was much longer.
I went to get a book, suddenly I saw he was on it, I could not breathe! He managed but then had to get back on, by then he seemed to realise it was not so easy.
A crew member came back and helped. he admitted after it was 'dodgy'.
I acted as if I had not seen the incident.

First rule is never to challenge, but we are stretched beyond measure.
Before we had issues to deal with ourselves some years before, we shared a table on a barge holiday around Paris. The woman was so patient, we were to embark to catch a coach to Eurostar, the husband's earhearing aids went missing.
Utter panic ensued in the nick of time they were found ......in his ears! He got anxious, she got anxious over the timing and chaos.

It really is tricky to get the timing right, especially when booking and going can be far apart. I looked at all types of breaks, even if possibly manageable it is the unexpected that shakes the confidence.

 

[Duggies-girl]

@MerryB Dads last holiday was a cruise to the arctic with me and my husband tagging along. It was wonderful, we all thoroughly enjoyed it from start to finish. Dad knew the ship having been with mum on many occasions before over many years. He was a retired seaman and loved everything about the sea and we sat on deck everyday, it was beautiful and I have some wonderful memories.

It was very stressful, I was frightened that dad would get lost, he was in a cabin on another deck so we were up at the crack of dawn to get to his cabin before he came looking for us. Dad would only eat what I ate, so I ate a lot and put on too much weight. There were some really interesting talks on ship but dad got bored so I had to go alone and we never got further than the nearest cafe when we went ashore as dad couldn't walk too far. Actually that sounds rather selfish of me as it was dads cruise and he paid for us which was wonderful and he had a lovely time as did we but it was so stressful and very worrying and my husband and I agreed that we wouldn't go again but we did make a lot of plans with dad which he also enjoyed. Sometimes planning is almost as much fun.

It's really sad when it comes to this time but it only worked for us because there were three of us and occasionally one of us could wander off and do something else and dad would not be on his own.

 

[MerryB]

Hi. I would like to thank everyone giving insights in to holidays with your loved ones. It make me feel there is still time and ways for my husband and I to explore different places and ways of travelling on holiday. Travel has been a major part of our married life.
Thank you once again to all who have provided ideas and insights to me and others.

 

[Agzy]

Ours was a cruise around Iceland and the Faroes as it sailed from Liverpool and so just 20 minutes away. Once on board Pauline identified where she wanted to sit near a window and the 24/7 tea machine and more or less stayed there for most of the time. I went off on a couple of excursions and tried to take her ashore twice but back on board wIth in an hour at most. The big positive was that by the end of the 7 days most passengers seemed to have sat and chatted with her and she was certainly well known with quite a number waving her goodbye as we disembarked. ?

 

[MerryB]

Thank you to everyone for your memories and experiences. It is reassuring for me to see I am not the person that at times struggles to adapt to the new person I am getting to know in many ways.
I have crossed cruises off my list of possible holiday choices, much too stressful. I am going to try coach tour holidays. We did a short one a couple of years ago and feel this may satisfy our wonder lust that we both have enjoyed throughout our married life. Fingers crossed Ever hopeful.