June 2009

June 2009 - I expect you are all fed up with not having any news on Dennis. As I’ve said before, it’s really hard to find time to compose the blog, I don’t leave at night until 11pm then have to check emails and prepare correspondence for the numerous things that are going on in our lives and often don’t get to bed before 2.30am and then get up to make phone calls before going into Dennis again. I have luckily been able to negotiate one year’s unpaid leave from work, there is no way I would have been able to include work in the equation at the moment. It’s going to be hard financially for a while but the most important thing is to get Dennis home and his life back on track.

I will write an update for this month and go back to the others, when hopefully ‘things to organise’ will have slowed down a bit!

June started with me coming to the conclusion that Dennis needs to get out of here and see that there is a life out there. As we had been given a discharge date of 12th August for my work and extension etc, it was decided to aim for this and all hurdles to cross to get to ‘D Day’ swung into gear.

Dennis and I attended the Independent Living course which I attended last February. Dennis was on top form. I was so pleased he interacted so well and appeared to enjoy the stimulation, especially the session that covered the legal aspects of funding care packages. It went over some people’s heads, but Dennis drew on his legal experience and as one patient attending the course said, he seemed to glow from the involvement. This young lady is only 21, married for two years, woke up one morning with an infection and is now paralysed with no movement from the neck down. She is Asian, so wise and accepting and has such a calm inner beauty you feel refreshed just by talking to her, Dennis has great admiration for her. We have learnt in here that spinal injuries have been caused in a variety of ways and can happen to anybody at any time. The course covered all aspects of returning home to an independent life with a PA (personal assistant.) One of the girl’s that came to talk about her experiences was a young (well endowered) Russian, Dennis caught my eye and said ‘Can I have one of those?’ It is going to be different having someone else living in our home under these circumstances but, if we pick the right girls; I am sure it will empower Dennis.

Following on from this course and our preparations to return home, Dennis has been assessed by three prospective agencies. Their costing will be prepared and although we are told we will have a choice, which will probably be the cheapest; Dennis’s care package will be provided by one of these.

Dennis has also been assessed for continuing Health Care funding and we found out last week that this has been agreed. Although this is good it does appear to bring some limitations and restrictions. Medical, Physio and Occupational reports have been compiled to submit with this application and we were surprised to read that Dennis’s level of injury is higher than we had been led to believe for the last 11 months. Dennis has been requesting a meeting with the Consultant for months to discuss his injury, recuperation and rehabilitation but this never seems to materialise, I think he is definitely entitled to this.

Helen came to visit us one day over the weekend and Colin, Aneta and Charlie came the next. I had asked Colin to come up in a Taxi to see if, now Dennis was trialling a new manual wheelchair, this might fit in the back of the Taxi. The problem is, Dennis is long in the body which makes his head height a problem when accessing vehicles. We managed to get him in, although only sideways which is not recommended. However, we risked it (the OT would have had a fit) and went about a mile down the road to the local pub! It was a beautiful day and Dennis was in his element with a glass of Fosters and burger & chips (he ate the lot) under an umbrella in the garden with Charlie running around him, hopefully there will be plenty more of this.

Dogs for the Disabled had been invited to the hospital to promote their service. Two golden Labradors came with their owners, who it appeared to us, needed minimum assistance from them. They were far more able than Dennis and it was felt he would be an unsuitable applicant as their ‘owner’ ideally needs to be living on their own and the one that feds them and takes them for walks, otherwise it is difficult for the dog to relate to one person. When we get home and settled we would like to get another dog, probably a poodle, as we were so lucky with our last ones.

The hot weather was upon us which causes havoc with the skin when lying on a plastic mattress! This meant Dennis was confined to bed for a few days as once the skin breaks down it can develop into a pressure sore very quickly which can result in months in bed for it to heal and we don’t want that.

As you will have seen, Dennis’s niece Claire (his sister’s Mary-Rose’s daughter) had undertaken the Three Peaks challenge with a group of workmates. This they achieved in 25.5 hours, remarkable and definitely worth a few of your pounds! This is being collected by Aspire, a spinal injuries charity, and held for Dennis’s use.

We had at last arranged for a one-to-one with Dennis’s Consultant. He didn’t tell us much that we hadn’t already gleamed from others but it was nice to hear the words from him. There is still a bit of confusion as to the level of Dennis’s injury, however no two people are the same, age, determination and environment has a lot to do with individual’s abilities. I am sure, when Dennis gets home and with the assistance of his family and friends and an experienced PA he will improve dramatically. It was good to hear from the Consultant that he is happy for Dennis to return to the unit for periods of intense rehab as and when this is felt beneficial.

We had been looking round for an interim placement for Dennis. Unfortunately the two that the PCT had suggested we visit both felt unsuitable to us. I appreciate there is a need for highly dependant individuals who have brain injuries, need ventilating and have challenging behaviour but this environment would be of no benefit to Dennis, even for a relatively short period of time. Constantly being assessed by officials and hearing how dependent he had now become for assistance in everyday tasks has been very demoralising for him. He keeps saying to me how useless he feels and understandably so, seems to have reservations as to how his life will be when he returns home. Of course it will be hard to come to terms with situations but I am sure he will blossom in a home environment.

One of the residential establishments we did like was a very ‘up market’ home in Weybridge. However, although they had initially agreed that they could address Dennis’s needs, on the day they were coming to do their assessment, they backed out saying they felt they did not have the staffing levels to safely manage his needs which was very disappointing but I am glad they addressed this rather than place Dennis in an unsafe environment. It is not that Dennis needs a high level of nursing care, more that he needs someone with him.

So the hunt continued and I had a re-think. I came to the conclusion that if the extension had been completed, Dennis would be discharged home with his ‘PA’ in place, so it seemed that if I could find accommodation, we could start the care provision which would be middle ground to returning home, and help us identify his needs while so we could still incorporate these into the build. I started researching the possibilities of a local rent, which unfortunately appears can only be for a minimum of six month and then found that this could be covered by housing benefit as Dennis is theoretically, homeless. I will take this suggestion to our discharge planning meeting next month.

As we are looking for a suitable electric wheelchair for Dennis’s discharge there are some that stand. I feel this would be good for Dennis so he will be able to ‘look in the bonnet of a cab.’ I think he will find it really frustrating not to be able to. Of course these things come at a price, about £22,000 worth, as much as a car! We may be able to get some help towards it from the Government scheme ‘Access to Work’ and the money held by Aspire from the ‘Channel Swim’ which by the way is being held again this year!

Dennis is also having assessments for a ‘shower chair.’ He used to be in the shower about twice a day before the accident and here they usually use a ‘shower trolley’ which he does not like. He trialled one of these one weekend and another the next. The one that looked the most efficient was not so it’s definitely a case of ‘try before you buy!’

I will email this to Colin to add to the Blog and hopefully have another update soon. PLEASE keep those messages to Dennis coming, he needs to know you are out there for him, especially now his return home is in sight. Several people tell me they access the site so let him know you are thinking of him and leave a message, not much to ask I think when he has come through so much. We look forward to reading your messages, love to all xx