Holidays with a disabled partner

Once my wife had recovered enough from the radiotherapy, we were able to look at having a break. The recovery did take a long time though. Because of the location of the tumour being zapped (her liver) and its closeness to the other major organs, she did not feel well for a few weeks. Thankfully the sickness passed, but it could still be triggered by anything, the most violent being a crumb on a biscuit with an ice cream getting stuck in her throat, and the body then deciding to reject the rest of the stomach contents. Not great when we were sat outside an Italian restaurant in Paris without any toilets, leading to her having to quickly find a spot away from other diners. The reaction was impossible to predict, and came on so quickly. It was very embarrassing for her, and yet another indignity this disease has thrown her way.

So we did manage to get to Paris, my daughters dream destination, and a few days at EuroDisney. The whole week was exhausting, with alot of walking, at a time when the weather was heating up the ridiculous heatwave we had last week. Somehow (probably through Disney magic) my wife managed to see all the sights she wanted to, and eat all the food she wanted to try. We were lucky in that we had a card to get assistance, which meant that we could avoid queues, and walk straight onto rides and so on. I felt guilty at times, however there was no way that she could have ever stood and waited, she would have collapsed. Growing up, I always thought that disabled people were in a wheel chair, or had a really obvious mental illness, but now realise that isnt the case. It applies to those who have unseen illness, or have a lack of ability to walk unaided, basically those who cannot be on an even playing field with everyone else. My wife cannot do half of what other people can do, but why should she miss out on the fun those people have? And if anyone wants to complain, I have a list of operations and treatments and drugs they take to be on her level.

The pass helped, but it isnt easy having a disabled partner when away. She has a lack of sight on the left side from her stroke, so crowds can be a real problem, which at a theme park is a regular concern. Her hearing can be restricted, particularly in large busy areas, so we always need to aware of the surroundings. She cant carry too much, so my daughter stepped up to carry a bag along with myself. We needed to check where seating was, and always be aware of the nearest rest room, and have a regular drink to hand. Plus she would get tired and then confused, so we had to ensure that we knew when she was able to respond and when she needed to rest. If it sounds alot like having a child, then that is right, but with the added awareness of someone who used to be exceptionally capable, but now isnt, and is frustrated by that.

On a guilty side note, I notice that when we leave her to rest and I take the children out for a while, the pressure seems to lift, and we can have fun without the reality kicking in for a while. There doesnt have to be worry about lots of people being around, or where the toilets are, or holding her hand to guide around places. The three of us can get on with enjoying things together, and while I enjoy that time, I feel very guilty afterwards, realising that she is missing out, but also that this is how things will be in the future.

Right now she is feeling the effects of the week away, as well as the knowledge of what her latest scan showed. The liver tumour has shrunk slightly, but has some smaller friends with it, and there was mention of the pelvic bone showing signs, which was the first time we recalled hearing that, but does make a little sense from the way her hips hurt alot.

Currently her back is bad, which is mainly from the walking around and then sitting in cars for a long time. She is in agony, and it does cause issues for us. I worry that this is a symptom of worse to come – and that we are on the down hill slide.

As a partner, it is tough as well, though not anywhere near the same. There is no break for us as support, every day has some form of concern, or the need for help walking around somewhere. It is a 24/7 job. Colleagues at work will clock off and head home to relax, but I know will head home to pick up where my wife fell asleep, and make sure she is comfortable, with the knowledge that a pain may mean the need to head to A&E.

This is not a post with any answers, but more a post to let people know that if you have a partner like this, you are not alone. There are lots of people in the same position, some worse, some better, but all doing an amazing job looking after those they love. It is tough, but we need to remember to talk to friends, and try to escape the pressure cooker now and then to recharge and be able to face the task we have. From my other posts you will have seen mention of live music, records, running and a few other things I do to stay sane. Sometimes they work, and sometimes they dont. However, it is important for the carers to be healthy, otherwise they arnt caring.