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Holiday for mum (SPMS)

Hello!

I wanted to get in touch as we’ve reached a bit of a stumbling block in trying to take mum on holiday - my mum has secondary progressive MS, which she has had now for the last 4-5 years. She was diagnosed with relapse-remitting some 20 years ago. Mum’s mobility has drastically worsened over the last couple of years - she has poor movement in her right leg, severe drop foot, she very much ‘shuffles’ around the apartment (built for disabled access), I’m worried mum will probably be wheelchair-bound in-house within the next year. In terms of getting out, mum can just about walk perhaps 50m, but she needs to have her stick and to be linked up to one of us. So she’ll mostly go out in the wheelchair/scooter.

Mum hasn’t had a holiday in some time and the last holiday she had with my dad last year was a long weekend in Spain, but my dad found it so difficult getting mum around that it barely felt like a holiday for him. It’s caused many arguments between them as mum is resigned to her capabilities, but dad still obviously struggles to let go of his ideal holiday scenario. My mum turned 60 this year so I booked a week away for her to go with me to Seville - I thought this would give dad some nice time by himself at home (which he never gets!) and it would also get mum away. I’m well aware of her capabilities so I would never over-book on the holiday, it’s more just a great chance for us to get away. However after a few months deliberation my mum told me she doesn’t want to go, she just doesn’t feel capable of it.

I’d love to know any holiday suggestions that you think would suit someone of my mum’s capabilties, or any good sites or ways to help mum AND dad get around with more ease, so it can feel like a nice enjoyable holiday for both of them.

I’m worried mum will become a recluse and never have a holiday, which breaks my heart. Any suggestions are welcome, especially any experiences you’ve had that have worked well.

Thanks in advance,

Em

Hello Em

Holidays are a conundrum for those of us who are more seriously disabled. Often we want to go away to please our partners (or as in your case, adult children), but the thought of all that’s involved in travel it just seems exhausting. Just the very idea of packing can be daunting enough, but add on air travel, plus what adjustments and adaptations will be necessary in the accommodation, and it seems too much. Especially in terms of fatigue.

Personally, I’ve decided that I don’t want to fly again. It’s exhausting, what with the drive to the airport, getting there early for the flight, actually getting to the seat on the plane (I’m not the hugest person, but on board wheelchairs make me feel that my bum is immense), being in the air (the vibration just makes me want the loo all the way), then getting out of the airport and to where ever we’re staying.

My husband and have recently discovered that cruises are an answer for us. Obviously it does depend on finances, but assuming it can be afforded, it is a way to make travel much more stress-free.

We are lucky enough to live just an hour from Southampton, and so far we’ve had relatively easy embarkation - so within about 2 hours from leaving home, we are on board and eating lunch while waiting for our cabin to be ready.

I never thought I’d be the sort of person to enjoy a cruise, but it worked out for us and we’ve just returned from our third.

Another option would be travel within Britain. Find a nice hotel / guesthouse / B&B with the facilities your mother needs, and in a location that can be reached easily from their home. If it’s in an area where there are places your parents would find entertainment / nice scenery / places they’d like to see, then it might work better than a foreign holiday.

Best of luck finding something suitable.

Sue

Hi Em, I agree with Sue, try a cruise if that appeals to her. I did one to the Norwegian fjords a couple of years ago and loved it. They are really designed to cater for the less abled, either due to disability or advancing age and they couldn’t do enough to help. You don’t have to go ashore if you don’t want to, there is plenty to do on board.

Seville might not have suited her due to the flying and also the heat. I can’t do holidays to hot places any more so have to choose my destination and time of year to travel carefully.

Hope to find something that suits her. And the U.K. is lovely too!

Hi Em You Mum sounds just like me MS wise, except I’ve just turned 41, I no longer fly (due to a traumatic flight 12 years ago) up until then I had seen a lot of the world- I’ve been on a number of cruises too - you need to be aware of the ones that tender as there is a possibility you’re Mum may miss that destination- I like eurostar for city breaks, for example Bruges/Rotterdam anywhere- A nice city break to blow the cobwebs off, pending the dimensions you can even take a scooter or disabled canal boats- lifts on and off, holiday you also take at you leisure. Shame about Seville it’s wonderful.

Hi hun, if you have booked seville why not take your dad? Could you get someone to stay with your mum for the week. I so get her really. My family keep going on at me to go on holiday. Jeez the thought of going on a plane, being confined when i can barely sit and hour with my legs down and the pain and burning starts, and i dont like people close to me. My brother and his wife cruise and they love it, they are in iceland at the moment and its fab he says, and lots of disabled people go there. BUT, I think your mum knows her limitations. Flying is not on the cards, and going ot seville she will be very hot. If you ring MS society they have places respite places where people can go on holiday and have all the care the need that is if they want to go away. Maybe she would be happier with that. I think she is also thinking about you hun. she doesnt want to be burden and it is your holiday too. Dont forget your dad needs support too, we forget other people in our lives have needs. Maybe take him and let your mum have a break away with a care giver. I think if it was me, I would love that idea lol. I would talk to OT and see if you can get a wheelchair for her to try. there are lots of them out there. I just bought one which can go outside and folds really quickly and easy to go in back of car. there are also smaller electric wheelchairs which are easy to move around flats etc. I think your a wonderful daughter trying to give your family a break and your mum, but i really do understand where she is coming from. I have been all over the world and to be honest the happiest place i feel right now is in my home where i know i am safe. xxxx

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