Interesting reading everyone's posts and can say I relate to most of them. My husband was only diagnosed last year but has had it (well I first noticed it) in 2011. Over the years we have travelled a lot firstly both of us had jobs that involved a lot of travel and then after I retired, we did quite a lot of travel. Since I saw this coming, in 2016 we took a month to travel to Canada to visit my family and my husbands cousin and his only sibling as I had already decided it would be the last trip we would do as it was just too hard - my husband became very confused everywhere we went and I was exhausted. I was glad we did it for him, but knew another long trip was not on the cards. Or so I thought! I then did a week with him and our dog in the UK which wasn't too bad. Then last Christmas I decided that we would go to Australia to visit our youngest daughter - OK seemed a good idea at the time - and in hind sight, it was a good holiday and could have been worse - but now it is definitely NEVER AGAIN.
So what now - since last year my husband has become much more confused, delusional and has constant hallucinations. I managed 3 nights away earlier this year when our 3 kids took on responsibility but 4 days was as much as I would ask them to do. We have decided that my husband is like our 21 mth old granddaughter but she is smarter than him e.g. she understands when you tell her to wait a minute etc - her grandpa doesn't! However, like a young child, you can't take your eyes off him at home or when we are out.
I managed a weeks respite at the end of August by sending him on a specialist disabled holiday and I got to stay home - used the time to clear out his study and loads of stuff from the house that was no longer needed/used etal - he never noticed anything when he came home. He enjoyed his holiday (he is always going somewhere/airport etc anyway) and the week 'off' was bliss!
What next - At the moment I have him attending a day centre 4 days a week and if it wasn't for that, not sure how I would cope! I am just deciding whether to send him 5 days - maybe after Christmas? He goes 9.30 - 3.30 - hated it at first, thought he worked there and kept saying he was going to resign, now he still thinks he works there but has stopped talking about resigning and speaks more positively about his 'boss' and the others there. The full time attendance allowance pays for about 2 days of attendance which helps defray the cost. As we are outside the free bus collection, I have to take him but friends have stepped up and take & collect on one day and our daughter takes him on one day.
I know that I will be going 'home' (Canada) next year and have already decided that my husband will have to go into a care home and will begin arranging that as soon as I know the dates. I am going to book him in for 4 weeks but be in Canada for 3 - gives me a few days at the beginning and at the end. I already know if he is like he is now, he will not like it but I am hoping it will assist with transition when full time care home becomes necessary. At his rate of decline over the last year, and especially the past few months, I suspect that may well be sometime next year. This trip is for a family wedding but I also know it is likely I will need to go home for my sister's funeral as she has terminal cancer and as my mom is 93 and not in good health, I may be going 'home' several times next year........
Just as the disease is different for everyone living with it - the solutions for respite also need to be 'right' for them and their carers - which can be trial and error - we can only do our best and sometimes it will work and sometimes it won't. Sometimes we also need to make hard decisions which may appear to be cruel, but I also believe that sometimes we need to be 'cruel to be kind'. They no longer know what is right for themselves and we need to make the decisions which are right given our personal circumstances, their well being and our sanity - nobody said it would be easy!