Young Dementia UK A recent photo of Dave and myself Our lives changed forever in the autumn of 2010 when doctors diagnosed my husband, Dave, aged 61, with Al zheimer’s. Over the previous year he had started to find difficulty with writing, spelling and doing simple, familiar tasks. Being a research engineer, he was always so good at problem solving, creativity and tasks around the home... plumbing, electrics, you name it, he could do it but now he struggled with even quite simple tasks, such as strapping our little granddaughter, Amy, into her car seat or painting a window. A new window that Dave painted with gloss paint He had had various tests at the JR Hospital in Oxford and we were invited along to hear the outcome.
The diagnosis was such a shock and very difficult to accept. It did not seem possible that it could actually be true. Surely the doctors must have made a mistake. My Dave was still my Dave, the man I married 42 years ago, he looked the same, sounded the same, laughed the same. We were told to come back in six months. We left the hospital in a daze... we were told that Dave would now not be allowed to drive and he was put on long term sick leave, and actually never went back to work again, even to clear his desk. However, because of our determination and belief that he was still capable of driving, I arranged for him to take a special driving test and he passed this, and actually continued to drive for another couple of years. With no support offered from the NHS we felt very alone, even though we had wonderfully supportive family and friends. A recent family gathering We had no idea what the future would hold and the easiest thing to do was to put our heads in the sand and pretend that it wa s not true. Doctors were unable to tell us what path Dave’s Altzheimer’s would take. They just said that everyone is different. We were now on an unknown journey, one with no compass or map to show us the way. One we did not choose and had no idea where it would take us. I spent much time on the Internet looking for research projects and possible cures that might be on the horizon, I was clutching at straws hoping that there was an answer - but there seemed to be nothing. After several months I realised that things were only going to get worse, and also I was suffering from very bad anxiety, so I felt ready to seek advice and support. It took quite a bit of courage to pick up the phone and start looking for organisations that might be able to help. Our GP had mentioned the Clive Project and so I telephoned them. This organisation, now renamed YDUK, came to our rescue. A family support worker visited our home soon after my phone call. She made various practical suggestions e.g. encouraging us to get on quickly with myself becoming Dave’s Power of Attorney - we had arranged this for our children but not for each other. Also we needed to reconsider our wills and make certain changes. She raised my awareness of what financial benefits might be available and offered to help me complete the forms to claim incapacity benefit. Having a One to One support worker taking Dave out for three hours each week was also offered and we took this up straight away.
Lovely smiley Lisa would arrive at the house and would happily do any activity that Dave would enjoy. They were well matched, both having a love of the outdoors. They often went on bike rides together, or long walks through the countryside. By giving Dave and I time apart from each other, helped to maintain our healthy relationship and provided me with a break from the responsibility. It also allowed me to meet up with friends on my own and just have a chance to catch up on some of the chores. I very much looked forward to these visits! A trust built up between Dave and Lisa and he very much enjoyed these outings. Photo of Lisa and Dave on bikes Lisa eventually moved to a different career, and so since the beginning of this year Rachel has taken over Lisa’s role. She is equally positive, warm an d so enthusiastic, despite the fact that now Dave no longer is able to communicate and one simply has to guess his needs and feelings. Little did Rachel know that to match Dave’s interests, she ended up as a manual labourer alongside Dave, clearing hedges and ditches as a volunteer for the Earth Trust in Little Wittenham! After a while Dave was unable to concentrate sufficiently to sustain this activity and so cycling became the alternative. More recently as cycling has proved too difficult, walking has become the chosen activity, come rain or shine. Visits to gardens or places of interest offers Dave some stimulation and much needed exercise, and for me a wonderful break from what now is quite a heavy burden. Unable to read or write, Dave’s main pastime is watching TV. The role of being Dave’s chief entertainer is now shared.
Photo of Dave and Rachel We often attend the monthly café run by YDUK. It offers a varied buffet style meal and then afterwards a band or singer performs. Dave loves dancing! Once the music starts, he is up on the dance floor straight away. His whole face lights up and he seems like his old self again. Photo of Dave dancing at YDUK cafe
A monthly walk and talk is for both for carers and people with dementia. It offers an opportunity to meet up with others who are in the same situation. It helps you to realise that you are not alone and that others are going through similar circumstances to yourselves. Walk and talk group Also a monthly carers-only walk gives the chance to share experiences, ideas and practical suggestions and also, on occasions, an opportunity to off load. Carers walk
There are also monthly coffee mornings that provide a similar opportunity. A member of YDUK staff is always there to help with anything that might be troubling people. Coffee morning at Newington Nursery The annual garden party is another lovely social event. It is a ‘bring and share lunch’ in the beautiful garden of one of our trustees. Last year I took along our little granddaughter. Watching little ones playing can bring such joy to others. Photo of Dave at YDUK garden party with Amy our grand daughter All these opportunities for social gatherings help one to avoid feeling isolated and makes you feel that you belong to this special group.
Visits to the hospital for assessments can be quite upsetting….to see your loved one unable to answer questions or follow simple tasks. To have a friendly, supportive face there from YDUK helps so much. It would have been especially appreciated after the initial diagnosis meeting to have linked into the organisation straight away, instead of enduring many months feeling that no one else knew or understood what we were going through. I am so pleased that this now happens. And so to the future….. Now that Dave is doubly incontinent, the option of leaving him with friends for any length of time has gone. Having available an easy to book age- suitable respite care for both a full day’s care and for the occasional wee k’s break seems to be something that is sadly lacking at present. I have only found one care home reasonably local to me that has a respite bed that I can book. I booked a room this summer to secure a place for a week next February, as the bed was in so much demand. Taking Dave along to a normal day care centre feels completely alien… mainly full of people in their seventies and eighties with different interests and hobbies, and tastes in music so different to Dav e’s ….no playing of Dire Strai ts or Queen here! YDUK’s plan to build a special care home for respite care would hopefully solve this problem but that will be a few years ahead yet. I feel so fortunate to have the support of YDUK and as the condition progresses further their expertise will become even more valuable. Just being alongside others who truly understand what I am going through and receiving practical help and support targeted specifically at Dave’s individual needs has offered me a lifeline. YDUK has helped me to know I am not alone. We may be on a journey we have not chosen to be on, but I am so grateful that YDUK are there to help and guide us. Despite everything we continue to try to lead life to the full. Dave is always cheerful, and uncomplaining. Dave enjoying some coastal walking . Dance and pudding party for Dave’s 65 th birthday
My advice to anyone who is embarking on this journey .. try to keep positive, enjoy what you can do and don’t let your mind dwell on things that are not possible any more. One of Dave’s only phrases he can say now is ‘I can’t do it’ and always my response is ‘yes you can!’ .
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