Coping with Change and Challenges

Kerry Bignell

Good afternoon, My name is Kerry and my husband has Cerebral Palsy amongst other things. He also has Osteo Arthritis, Asthma and Short term memory loss due to the amount of medication he has to take.. Last August he was diagnosed with Type 2 Diabetes and has ongoing medication for Depression.

I really need to learn a lot more about the different ways CP affects people, how it can change, cause deterioration etc, as when I first met my husband, we were both only 16 (we were not a couple then, this is only a recent thing). Anyway, at age 16 he was much fitter, slimmer and able to walk. He had various jobs after college. By the age of 40, he had deteriorated quite a lot. He has been using a power chair for the past 15 years or so; his mobility is almost zero, his ability to care for himself personally is non existent (carers twice a day to attend to his personal needs). 

Over the past 12 months or so, he developed leg ulcers that were being dealt with by our local Practice Nurses at the Surgery. Different treatments have been given over the time. Also his medication has been re-assessed and changed to help cope with the amount of pain he is in all the time. 

At present he is in hospital for the second time, the initial reason was due to a diagnosis of Cellulitis. Staff were given strict instructions regarding how to care for him, but due to staffing and other issues, not enough care and attention was given. Having now been back in hospital due to a recurrence of the Cellulitis, and IV anti bios being administered, the focus is now turning to his ulcers as they have become more of a concern due to lack of care. The treatment he is going to be given include Maggot Treatment, it is also being arranged for him to see a vascular specialist, dermotologist, and other people who specialise in what he needs. My biggest concern is how his behaviour has changed. Is this normal for someone with CP; I recognise a lot of this could be down to the depression, but his aggress and angry outbursts and how he speaks to people is getting worse, including with me. He is NOT  a violent man in any way shape or form. But this continuous argumentative attitude is really beginning to stress me out. His short term memory loss is also becoming more prevalent. He's been told he must lose weight and I agree. I just need a little bit of support and encouragement as I also am a wheelchair user with my own issues. Sorry this is so long, but I hope to hear from others who can offer me practical suppport in how I can deal with this at home and who else should be involved. The plan apparently is to get him a hospital bed due to his present circumstances. Thank you

Rocky

Hi Kerry, sorry to hear you and your husband are having such a difficult time. It is difficult to say how much of your husband's deteriorating condition would be linked to his cerebral palsy.  Some people with cp will experience premature ageing symptoms often due to the additional wear and tear on their joins and muscles. You can find out more about Ageing and Cerebral Palsy on the Scope website http://www.scope.org.uk/Support/Parents-and-Carers/Landing/Cerebral-palsy/Ageing 

However your husband also has other conditions so it is difficult to say which of his symptoms may be connected to the cp and which to arthritis, diabetes or even just general ageing. Certainly the cellulitis may be linked to something else such as the diabetes.  Also if he is depressed and, I suspect, in a lot of pain, his behaviour will change and perhaps you are the only person he feels safe with to express his feelings and frustrations.

Have you talked to the Doctors and the Local Authority about your situation and concerns?  It may be useful to talk to the hospital social worker and your husband's consultant to see what else can be done to help him or what support can be put in place to help both of you. If your husband is at home, then it may be useful to have a carer or community nurse come in to clean his ulcers and keep him comfortable.

It sounds like the hospital are taking care of your husband but obviously they have to concentrate on his physical condition before they can address his depression or anger but they also need to take into account the effect all this is having on you individually and as a couple and ensure you get the support you need. You need to look after yourself to help your husband.

Hope this helps a bit.