My grandma was a wonderful woman. Clever, witty, hard working. She ran a farm single handed in the war, was a fabulous horse woman and a crack shot. She worked until she was 70.
I don't think many people understand the ravages of alzheimers because often people who develop it are very old and have other illnesses and the disease rarely runs its full course.
At 70 granny became forgetful. That lasted about 5 years getting a little worse each year. From forgetting the gas man was coming to forgetting her daughter's name. By the 2nd or 3rd year she needed someone always to look after her but she had grandad and mother visited every other day.
In years 5 to 10 she forgot everyone's bame and who they were completely, where her home was and became belligerant. Grandad had stolen her purse, etc. She coukd not by this stage make a cup of tea let alone a meal and coukd not have gone out alone. At the end if this period grandad was over 80. Towards the end of it there was some respite care. Initially a couple of days at a care home from 9-4 but she started "escaping" and staff couldn't cope. This then became two weeks in every 7 in a funded geriatric mh ward in a superb unit. At this stage she became an escapist and more than once the police brought her home from the village in the middle of the night just in her nightie. The unit that housed the respite care was closed and mother wasntold to find her a nursing home. The family fought on the basis that if she'd needed a specialist clinical nhs unit five years previously there was no argument to prevail that she did not need one now. She did get a place in a specialist nhs geriatric mh unit.
When she went there, 10 years into the disease, she had already had a tia or three. On arrival she no longer knew who her family members were and had no memory of the near past, ie, last 30 years. She did not remember her name and could not function independently, ie, could not dress herself or remember mealtimes. At that stage she was still walking and pacing.
Mother and grandad visited daily because they lived her so much. During this period I had two children but all mother's time was taken up caring for her parents.
During the final five years grannie lost all recognition, forgetting she had been married or had a child, her parents. She forgot how to toilet and became doubly incontinent, she forgot how to speak, how to walk and then how to swallow. Mother and grandad fed her for as long as they could - she used a sippy cup for the last of her years. She died after 5 years. She was 4.5 stone. Mother lost five years of her life and grandad died just a year later, broken and exhausted.
Nobody on this earth can persuade me such care is not clinically required and shoukd not be funded. Grannie had such care 1995 to 2000. She would not today.
During the last election campaign my MP and I had a ding dong over May's dementia tax and the definitions of clinical and social need. I have voted Conservative at every election since 1979. I did not vote Conservative in 2015 such was the unacceptable nature of what was said in the campaign.