This is written from my own experience of living and caring for a loved one with MND/ALS.
Craig and I both loved to travel and if things had been different and there was no covid, we would have been off travelling whilst he was still fit enough. We would have taken the chance to visit some of the places we had always talked about and make new memories for me to cherish after he had gone.
Craig had been a very active, outgoing and social man and so being stuck at home was really difficult for him. This is why it was so important for us to try and go places and do things, however hard that seemed to be. I did find it quite stressful at times trying to cope with him in unfamiliar surroundings. I had learnt to manage him at home but to suddenly have a different bathroom or bedroom to negotiate, was actually quite difficult. It sounds silly I’m sure to someone who hasn’t had to do it, but I got used to lifting him in a particular way and manoeuvring him, within the space I had. When you have to suddenly try to do it from the other side or in a restricted area it’s not easy. He was a big man and therefore quite heavy and I had to use my body weight a lot to move him, but to do this I needed the space.
The reality was that we couldn’t go anywhere for several months because of the covid restrictions and we had to be extra careful because of his vulnerability. However, having said that, we may well have found ourselves stuck at home because of the practicalities of getting the house adapted and because of his changing needs, but I think we would have managed a lot more trips away than we did.
When the restrictions were relaxing, we started to look at what we could do within the rules. We decided upon a trip away with Craig’s daughter to make sure she had some quality time with him. To just say ‘oh we’ll go and stay in a hotel or guest house’ is so easy but it throws up so many unforeseen complications, that perhaps normally you wouldn’t even consider.
Staying in hotels was generally easier as they tended to have lifts and were well adapted for wheelchair uses. We found large chain hotels had better facilities on the whole. The bathrooms in these were generally good with plenty of space and grab rails. Similarly, the rooms themselves allowed good movement with the wheelchair.
However, things don’t always run smoothly- we did turn up at one hotel where we had requested an adaptive bathroom, only to be told they didn’t think they had one available. I was upset and extremely irritated as I’d rung ahead to double check. I had to really fight for one. As I pointed out to the manager, I asked him how he thought I was going to manage in a normal sized bathroom with no room for Craigs wheelchair. I had to literal show him Craig and explain that I had to lift him, as he couldn’t do anything for himself. Eventually he found us an adaptive bathroom. I was on the verge of going home again. Actually, we would have had to go home, because I just wouldn’t have been able to cope in a normal bathroom.
Other problems I encountered were to do with the beds being too low, which made getting him in and out of them difficult and put extra strain on me because we had no lifting equipment, it was all manual. The other issues were the placement of the basin in the bathroom, often they were too close to the toilet, so it made being able to stand by the side of the toilet to clean him or lift him difficult. In one hotel, the door was on a spring and to be able to open it and keep it open whilst he went through, I had to stand in the wardrobe and hold it open.
When researching guest houses or lodges I used a specialist website for travellers with accessibility issues. I assumed that these places had been vetted and therefore fully accessible and that’s why they were on the website. There are several different websites you can use, but please do not take their word for it, double check.
I would find a lovely place and then start looking closer, only to discover things like it had two steps to get into the property, the bedrooms were upstairs and there was no lift, the bedroom was adapted but not the bathroom, there was a lovely balcony but you couldn’t use it because it was down a couple of steps, similarly with a garden. In the end if something looked alright, I would ring them with a check list, just to make sure. We did find some lovely places eventually.
I won’t go into detail about the other issues we had whilst away, such as the pavements being cluttered with advertising boards or there being no drop curves, to get off the pavement or restaurants and shops having steps to get into them, disabled toilets being locked or not fit for purpose.
When we were allowed to travel more, we took a cruise around England. We took a few cruises which were very easy and I would recommend them. The ships are well adapted, all on the level, have lifts and good accessible rooms. The cruise company we used were very good but like anything else it depends on the company you choose. We found the staff delightful and very helpful, always checking I was ok and if I needed help. The guests fell into two camps either they ignored Craig completely or they were lovely. The people we spent time with couldn’t have been nicer.
The only real issue with some of the cruises was the organised excursions, as they are not tailored for someone like Craig, who couldn’t get out of his chair. There are excursions for wheelchair uses but they rely on you being able to get out of your chair and board the coach yourself. We had accepted beforehand that we may not be able to go on many but we had hoped to do some. The other issue was boarding and leaving the ship, because some ports were tidal, we were unable to leave the ship as the gang plank was too steep for us to use, even with help, not something I would have considered checking.
We cruised until nearly the end, making changes to allow us to do so. We hired lifting equipment through a specialist company. The lift was delivered to our cabin and was in our room when we arrived. The last cruise we did we also hired a hospital bed, to make it easier for Craig. Although the cruise company on request had raised the bed for us previously, we needed to be able to sit him up more at night. Without the hospital bed we would not have managed our last cruise.
Some European cities are not very wheelchair friendly with lots of cobbled streets and uneven surfaces, especially the older parts of town. We found that some cities were better at providing wheelchair taxis too. They were available but limited, some needed booking in advance. Some local companies also offer specialist wheelchair accessible excursions although these were very expensive.
I would recommend getting out and about as much as possible if that is something you enjoy. However, I would also caution you to make sure you have researched the property and area well, to see if they are wheelchair friendly and have all the facilities you need, this will make the experience more pleasurable if you are well prepared.
Author: Anita Newton