Jim Swift's Story

Some dates are forever seared into your memory. For me just such a date is Thursday 11th April 2002. This was the day I learned that my wife, Jan, had dementia. She was 58 years old.

In my career I was a head teacher and as such I was used to meeting problems, be it with parents, pupils or staff and dealing with them. Now I was meeting the greatest problem of my life and I was impotent. More than that..... I felt alone.

However the disease manifests itself, Alzheimer's can expose carers to a ruthless, unrelenting and deepening nightmare. It is they who have to bear the brunt of looking after their loved ones and to endure the emotional and physical torment each day, as every vestige of humanity is slowly stripped away. Therefore to try to ensure that we carers are afforded the help we need, we have to tell our individual stories to demonstrate exactly what day-to-day life is like caring for someone with dementia.

Often articles about dementia are sanitised versions of the real experience. They do not often mention dealing with excrement and urine and neither, for the relationship between husband and wife, do they mention the cessation of sexual intimacy. The violent outbursts that you have to deal with, where your wife, with face contorted with rage, lashes out physically and tells you that she hates you, that you are horrible, can also be glossed over. If we want to portray this disease as it really is, in all its darkest forms, we must be prepared to tell the whole story.

Let me tell you about some of the events I experienced with Jan last week. Jan is now incontinent and at two in the morning I took her to the toilet. Her nightie was a little wet so I took it off. She refused my efforts to put another one on her. Going back to bed she refused to lie down and after a while got out of bed again and paced the room. This pattern of bed / pacing continued for two hours. That evening Jan could not settle to watch T.V. or listen to music and the pacing began again. In the toilet, at bedtime, Jan would not lift up her feet in order that I might remove her knickers. This non compliance after long entreaties rendered me so frustrated that I shouted at her in anger. Jan then sank to the floor and refused all my attempts to get her up and attacked me when I tried to help her.
The guilt that you feel when you lose control like this is one of the worst aspects of the disease.

In her career Jan taught hundreds of children to read, write and compute. Now her own abilities are far less than theirs. This once caring, confident, articulate and intelligent woman is now unable to read, write or hold a conversation. She cannot find her own clothes, dress or undress herself, make a cup of tea or even dry the dishes. In the evening I am alone as Jan becomes more silent and introverted.

Luckily I was introduced to Dementia UK and the Admiral Nurse Service. I have to say now, that I would not have been able to get this far with Jan`s illness without the help, advice and support of the Admiral Nurse Service in Bolton and in particular Paula Smith, my Admiral Nurse. Her advice, expertise, professionalism, care and compassion have guided me and given me the strength to get this far. Her understanding and knowledge have taken me sometimes where I didn`t want to go but she knew better than I how, when and where help was needed. She continues to be the rock to which I cling when the going gets tough.

So what would ease the burden and give both Jan and I a better quality of life? I have first of all to say that I already have access to many of the services I am going to request but the point is that this is solely because of where I live. I am lucky, but the majority of carers are not and even so, coping day after day, is still a struggle.What would have a far greater impact with regard to best care for carers and dementia suffers alike is for the government to remember their A B C.

A, as I hope I have demonstrated, would be an increase in the Admiral Nurse Service. Why not develop and expand an organisation that is already up and working and of proven worth?

B, would mean an increase in benefits. I don`t want an increase to buy my wife expensive presents but I do need to make her last years as comfortable as possible without financial worries. I can not bear the thought of Jan having to enter a home. It would feel as though I had betrayed and abandoned her and so I have spent all our savings on the construction of a downstairs bedroom and walk-in shower, so now monetary considerations are of paramount importance.

And finally C, would be the C of the Carer`s Allowance which will disappear when I reach the age of sixty-five, as I will then be in receipt of my state pension. It is an allowance for caring. I am obviously going to continue to care for my wife after I reach sixty-five and surely my state pension was to allow me some quality
of life in old age.

C would also stand for increased and easier access to care support. A carer told me recently there are those people who can cope alone and those who can`t. He was wrong. Even an Olympic athlete would buckle under the emotional and physical strain.

This is not a forum that I ever imagined speaking at. It is not the retirement, that I had sketched out for Jan and I. It is hard to remember what my original Jan was like, except when we watch home videos but I can`t bear to watch for long as the difference between Jan then and now is too stark and painful. Jan has never known that she has the disease so we have not been able to cry together. I treasure every moment but even after seven years I wake up devastated by this illness that has blighted our lives.

About the only ability still remaining to Jan is her recognition of the love she has for me and the memory of my face. I know that the latter will eventually disappear but I have to believe that her love for me will never die. The Jan that I married over forty years ago was the love of my life. The Jan that I have now, although vastly different, is still the love of my life.