Brian Hills' Story

For thirty seven years I was a mathematics teacher in a secondary school, rising to Deputy Head. I was a compassionate and confident person, good at organisation and dealing with people. I had been very happily married to my Jean for 38 years. Little did I know that shortly after retiring all this was to change dramatically.

In the year 2000 a new 9 year journey was to start - a journey full of love, anger, laughter, and tears, ending in sadness.

When the Doctor said to us "I am afraid that Jean is suffering from dementia" Jean gently squeezed my hand and we left in silence. This diagnosis was in addition to MS diagnosed 15 years earlier. I remember saying to Jean. "We are no different now than two hours ago before the diagnosis". I knew that I was only comforting her because deep down my stomach was churning. What did I know about dementia? Nothing! I believed that I could handle it so I just struggled on and it wasn't until 3 years later when we were introduced to the Admiral Nurses that we received real help and information. They ran courses on Dementia. This gave me some indication what may be ahead of us. I realised that Jean probably would not be able to climb the stairs and that we might need a wet room and a bedroom downstairs. I was beginning to struggle and although I had not realised it I was losing confidence in myself apart from my caring role.

I noticed that Jean became agitated when some carers came. I watched closely and realised that the approach to Jean varied. I asked all the carers to talk to Jean, to make eye contact and hold her hand so that she felt comfortable with them before the personal care. It was interesting to note that other professionals did not do this. Should I have had to educate the professionals how to care for someone with dementia?

There were many times in the caring of Jean, when despite the skills of the professional people who visited us I found myself getting involved. To this day I still ask myself "why did I have to get involved with organisational problems, why did I have to train people about dementia care?" For example I got really angry over incontinence pads. I had to wash bedclothes daily because the wrong pads had been supplied. I realised that the urine output was greatest overnight and the least during the morning. After 6 months of phone calls, a visit from the continence nurse and losing my temper we had three different pads supplied - problem solved. It should not have been necessary for me to have had such a long battle and make so many phone calls.

In the last two months of Jean's life I was very afraid because I had never been with anyone when they died. I found that I was at an all time low and on the morning of Jean's death I was even ringing about the fact that no Marie Curie Nurses had been booked. Should I have to be doing this? After nine years of caring I was mentally and physically exhausted. I was having difficulty going out, driving and even walking. I am here today thanks
to Uniting Carers who have helped me to regain my confidence.

When I look back I realise that I had taken control of all the care in our home, set up a really good relationship with the carers, resulting in a high standard of care.

I believe that the life of a carer could be so much less stressful if we were to think not only of the one who has dementia but also the carer who is pressurised twenty four hours a day. Give us more information and support, make sure that organisational problems are minimised and all the professionals are trained in dementia.

Although the caring was difficult and took its toll on me I would do it again for Jean, who I loved so much. Despite the problems the rewards were high - to see that wonderful smile, to see her sleeping peacefully, to watch her laughing with carers and nurses, to see and listen to the carers reading to Jean. At least fifteen of the professionals attended Jean's funeral. Her very last words to me were "Thank you". ...... Thank you for listening to me.