After damaging her knee while on holiday, my wife needed to have a new knee fitted.
This is a major surgery and it takes many weeks to recover from the surgery, during which time my wife needed caring for.
I was lucky, she needed very little help in dressing, apart from the surgical stockings she needed to wear 24/7; also the only caring she needed for toileting was a morning bowl of water for the first few days.
That said, the amount of additional work involved was enormous. Normally there are 2 of us, running the home and we manage chores around the house and garden between us. For a period of about 6 weeks, Lynn was unable to do any of these chores.
The shopping still had to be done, there were meals to cook, clothes to wash and dry, the house had to be kept clean, the dog had to be walked and the garden had to be maintained. All this had to be done as well as the part time job I do from home.
None of these are insurmountable, but after a month, I was exhausted and some of the gardening and household things we both do, had to be neglected.
The point of this blog is to show, that this was exhausting and stressful, even though we knew it would be for a limited period of perhaps 6-8 weeks.
Consider therefore the carer who knows it is for months, possibly many years and whatever happens it will not improve.
Until this time, I had been fortunate, caring was only necessary for short periods of a week or so, during illness.
It opened my eyes to the needs of carers, financial help for equipment to help, both for the person living with a disabling illness and to help the carer cope. There is also a crucial need for support on a social and psychological level, this can take the form of social events, at which both carer and cared for can attend.
In extreme circumstances where a carer cannot easily get away there may also be a need for relief, to enable the carer to spend a few days away.
All of which requires funds, and is a major reason why many of us work with MNDA to help in whatever way we can to raise funds, and to raise awareness of the problems people living with MND face as well as the problems their carers face.

Recently, while returning from holiday, I had first hand experience of how difficult travelling with someone in a wheelchair can be. During a holiday cruise, my wife injured her leg and could not walk more than a few paces with a crutch.

Getting off the ship was the start of our problems, we had to first find a wheelchair, which was difficult as the whole ship was in emptying mode, all persons were being herded off the ship, meanwhile against a tide of humanity trying to evacuate, I had to battle into the bowels of the ship to find someone to bring a wheelchair.

Once found getting off the ship was fine, then we had to find a suitable cab to get us and our baggage to the airport. Having said goodbye to the wheelchair when entering the taxi, we were obliged to find another chair at the airport.

Thankfully this was not too difficult and one was secured and another booked for our arrival at Gatwick. There were several folk in wheelchairs and all were herded into a truck, using a tail lift with minimal safety features. At the plane the truck body lifted up to one of the entrances to the aircraft, fortunately all wheelchair bound passengers were able to walk a few paces to seats which had been reserved. There would have been no place for anyone unable to walk at all, no idea how these folk would have fared.

Our arrival at Gatwick was farce, some 7 chairs were guided to the bottom of an escalator and told our transport was at the top. After some strong complaints we were guided through a maze of corridors to a lift and met our transport. The transport was sufficient for the wheelchair users only, so the carers had to make their way by foot to the customs hall, process through, then wait at another location for our partners to arrive.

Finally we had the problem of getting from customs to a taxi. This was the time when the Great British public decided to show their worst features, rushing past the chair, pushing forward in front of us at doors, generally being as thoughtless as possible.

This experience was truly an eye opener, never before had I seen the selfish way that many people behave towards those who have mobility problems. Thankfully we also experienced some great acts of kindness, most especially from persons who had mobility problems of their own.

I wonder if my experience was unusual or if this is the normal expectation of persons living with mobility problems?