Getting Help

Caring for a person with leukodystrophy will most likely be, in one way or another, a twenty-four hour job. As such, nobody reasonable could expect one or even two parents/relatives to be physically and mentally able to carry out the entire care of their loved one with leukodystrophy. Because of budgets and stringent rules about who gets help and when, the hours of home nursing provided by the council will probably not come anywhere close to what you actually need. You’ll probably get only a few hours a week, and possibly a night aid.

Because of this lack of help versus need for help, you as parents may be pressured by doctors, council or even family members to put your child with leukodystrophy into a hospice hospital, home or other institution. There is nothing at all wrong with this if you and the person with leukodystrophy are happy with it, but it should be your decision and must not be forced upon you.

For this reason, if your wish is for your loved one with leukodystrophy to be cared for at home, I think it’s important to advertise a need for volunteers. This can be done in a local paper, by circulated email or a website, advertised in a doctor’s surgery, school (whether special needs or not) or in the window of the post office. Several volunteers may reply, but a proportion of volunteers will probably not turn up. Sadly one can’t simply assume everyone who says they will help actually will. Some people just volunteer to make themselves feel good and are too apprehensive or (pre)occupied to actually follow it through. But of those who do follow through, it may be possible for a rota to be drawn up. Some people may even volunteer/be willing to help you with cleaning, gardening or cooking, which I am sure would be invaluable, especially as a treat!

If your loved one with leukodystrophy is a child, then whether they go to a mainstream or special needs school, class-mates will probably be fascinated by how your child is cared for, and eager to learn and help. If you let them help at weekends or after school, this is not exploitation! It is merely eagerness to be a friend and to learn – classmates can potentially be an enormous help, and a great entertainment for your child.

You may be thinking that you just couldn’t blatantly ask for people to give up their time to work for nothing. This is an understandable worry, but I think it is probably unfounded in most communities. If people are at all reasonable they will see that you didn’t want to be in this situation, and would give anything for your loved one to return to full health and not need all this extra care. If they are fully informed of the nature of leukodystrophy, they should be able to see that your child being disabled is something that you could not have prevented, and that you are simply being creative in finding ways to make a good quality of life for them. They will probably be glad of an opportunity to do something to help, even if it’s much smaller than the sample rota implies. Furthermore, if they have ever met your loved one, many of them will have been deeply moved by their personality and ‘plight.’

In the case of a child, ‘plight’ probably need not be the way they see their situation. For a child - even one who struggles daily, their physical condition will likely become to them in time just their way of life. Surrounded by cheerful, honest, determined people who show compassion but do not over-pity them, they may well learn to just take the rough with the smooth.

Another great source of help is a hospice association (I have provided a link in the 'Useful Organisations' post. These provide volunteer helpers who can come out on home visits. They also provide hospice facilities with activities aimed specially for people of all ages and abilities (including relatives of the loved one with leukodystrophy), and helpers specifically trained to work with profoundly disabled people. Going into a hospice does not mean waiting for the end – rather, a stabilisation of symptoms and/or a break for parents and carers.

Certain family holidays are of a nature such that the loved one with leukodystrophy might not get any fun out of them. Arranging a week at a hospice or care home for the loved while you go off is not abandoning them. With research into an appropriate place to spend that time, they will be in capable, caring, experienced hands, and they will almost certainly get a lot of pleasure and probably make several friends. Furthermore, it allows you to come back from your family holiday much less frayed and well rested, ready to take up the challenges of caring for the loved one with leukodystrophy again.

Similarly to a hospice, there are respite care centres for people with disabilities, that can take your loved one with leukodystrophy in for just the day, or for a short stay. Again, these provide one-to-one care and stimulation, with highly trained and experienced carers.

The final help option, particularly for children, is partial fostering. This may sound like admitting defeat at first glance, or as though I’m implying you should give the loved one up, but this is far from the truth. The loved one simply spends stretches of time at (a) trained foster parent/parents’ house, and is made a full and valued part of the family while they are there. The period when your loved one with leukodystrophy is at the foster parents’ house gives you a chance to devote yourself to your other children, your house, your friends, your pets, your relatives or your spouse. This option is obviously much more personal than a hospice or respite care centre can be, so it’s essential that both you as a carer/relative, and the loved one with leukodystrophy, get on well with the foster parent(s), and that he and/or she is/are committed and devoted.

http://www.thefca.co.uk/placement.php