On this page you can read about peoples' experiences with travelling, their holidays, and finding respite care so they could take a break. Several caregivers were able to travel with their care recipient whereas others had stopped travelling together because travelling was too difficult.
While many caregivers were unable to arrange holidays for themselves, there were several who did manage. Others found respite care and took a much-needed break. To do this, the caregivers had to make (sometimes complicated) arrangements for the care recipient to stay home or go to a respite facility while they were away.
Well, we like travelling abroad. We travelled a lot. And we have two trips coming up, one which is for a conference. We are involved at the international level with the mute. [My friend] is part of an international association and we participated in several conferences in Spain, Switzerland, and the United States.There is one coming up in the month of July in the United States.
We are perfectly aware that, for example, we are going to Germany in the fall. Well, we are perfectly aware, I am not insurable. So, we know that maybe I will go, maybe I won’t, we don’t know. But we’ve accepted that, we’ve come to terms with that, even if we… We don’t want to keep ourselves from living in case something more serious happens to me. We agreed to make some concessions. to say, “Well okay, we will lose money”. We will lose money, that’s all. To date, it hasn’t happened. But it’s hard for me to travel because it’s tiring, you know. It takes me two days to get over it. But after that, I have to give myself a little rest period at the house or at the hotel where we are, and then after that, our itinerary each day. What we are going to visit and all that. We have to prepare ourselves.
Even though it was hard to travel with a disability, Shayna and her husband traveled with the family to maintain some normalcy.
By that time she was not able to eat any solids. She was only able to eat liquids, and they put her on something called TPN—total parenteral nutrition—and it’s a very expensive therapy. And fortunately, we lived in Canada and it was covered by Medicare—although it’s not true in every province, but it certainly was covered in Ontario when they started out.
Challenges with travelling together
For many other caregivers, travelling eventually became too difficult. As Elaine said, at a certain point it becomes easier to stay at home. Lorna and her husband stopped travelling when they were unable to get insurance for her husband. For David's wife, it became too difficult to travel because she couldn't sit for long periods of time. Lillian and Michael's son dislikes travelling, about which Michael commented, "I think learning to unlearn those things (family holidays) is a difficult thing. If you're a family and you're going on a family holiday and you're not taking part of your family, what kind of family is that? Not taking him on a holiday is actually a demonstration of our love for him, not some sort of rejection, even though that sounds on the surface of it's crazy and counter intuitive."
Not much beautiful about getting on an airplane besides being able to get somewhere. But airplanes are not accessible and boy I wish they would be. Buses could be, but for some reason, we’re told airplanes “can’t make it happen”.
Travelling alone or respite
Several caregivers were travelling alone for holidays or business trips. Some care recipients could stay home alone and only needed someone to check up on them, whereas others needed 24/7 care.
I try and plan to go on a cruise every year, just because I have to. I have to get away. But even that’s hard. I mean I don’t even know. It’ll, that’ll be easier if he’s in long-term care because I will know he’s cared for. The past few years, I have to put patchwork together; my kids have to take time off work or they have to—well one of my sons is a teacher, he can’t take time off work, but my other son can adjust his shifts […] or my husband’s family comes out from Quebec or something. But you put together this patchwork and hope it will work and you leave.
[…] And I am fairly good at, I’ve learned that through work, I am fairly good at compartmentalizing it. Once I leave I can usually leave it mostly. In fact we… I mean, we joke, and this is a very dark joke and I’ll say it and you can edit it out if you think it’s too dark, but my kids we always say—this was the year before last I went to Alaska with a friend for 2 weeks on a cruise and my husband was pretty sick before I left, although he was not in hospital although he went in hospital shortly after I left, which I never knew because nobody told me—and they just said to me, “Mom, if something happens, we’ll put him on ice until you get home. Just go.” What can you do? And it’s true, and as it happened he almost died while I was gone, but they didn’t phone me. I mean in fact, I got an e-mail from my son who was here when they had the ambulance call when he almost died, and he said, “Oh, everything’s fine.”And he said that because his brother told him he couldn’t say anything. So you have to, you have to live things that way and figure out how you’re going to make things work.
Well, so one of the things that we do is—we have many smaller and then bigger things, but we certainly—we have a holiday every year. So we’ve now started, this is the 4th year we’ve taken a winter holiday, just one week, and it’s when our son’s at school. So we have, you have to have the supports all in place.
In our situation it, things as much as possible need to be in home. There are respite, there is a possibility of respite, but it would mean she’d go into an establishment for ‘x’ period of time. I would like that, but I know that this would kill her. I mean, that symbolically, like, she doesn’t even want somebody coming to help her with her bath in her own house for once a week.
Sometimes, it is not easy to leave the care recipient behind. Christiane had a respite weekend and her husband stayed in a facility. She said, "I had a break from September 30 to October 2nd, but they sent him to a long term care facility. But there, the TV is not working. He doesn't see outside. I said: "Well, what will he do?" This is all he does during the day! There, you will not hear him, he will fall asleep. He just woke up, but he will fall asleep on the couch while watching TV. I picked him up on Sunday morning right after lunch."
Other caregivers leave for a short time and don't go far. Several caregivers described traveling with their cell phone ready, prepared to return home at a moment's notice. On the other hand, Fernanda enjoyed hiking above the tree line knowing she could not be reached. Still, she would check-in with her mother every night.
So my escapes are my holidays and I’ll go hiking. And when I go hiking, I try to go up 8,000 feet above tree line where I can stand on top of a mountain, and just that’s when nothing matters. That is when, I don’t know if it is because you’ve got to hike to get up there, so you’re hiking up and you’re working your frustrations, you’re hot.