Dealing with dementia can be difficult for everyone involved, especially when you are struggling to get extra help.
Rosamond tells her story about how she looked after her father who lived with Alzheimer’s disease. She now cares for her husband who also lives with dementia, as well as looking after her ageing mother.
Her inspiring story is below…
In 1998, my husband Hughie and myself had sold our large three-storey house and were planning to build a bungalow on land within a very small estate in the country.
We asked my mum and dad if they would like to join us if we built a small granny flat on the end of our house. We finally moved into our house in June of 1999, but it became apparent quite soon afterwards that things weren’t quite right with my father.
We took him to the doctor who said he thought my dad had Alzheimer’s disease but that nothing could be done about it (at that time, the drug Donepezil was prescribed only in certain parts of the country).
Along came Tony Blair, who made the drug available to all. The change in my dad was amazing and, while still suffering from Alzheimer’s, he was a lot more ‘with it’. Also, we were now able to get professional help, which resulted in dad going into respite at a day centre from 9.30 to 3pm once a week, rising to four times a week during the following three years.
This was a big help as my mum, who was by now in her nineties, was getting frailer and my husband had been diagnosed with Parkinson’s with Lewy Body disease.
In 2005, my dad finally passed away at the age of 92, but not before being registered blind and, during the final three months of his life, losing his leg and having to go into a home – something I had said I would never let happen.
Dealing with dementia again
Fast forward another 11 years – mum is now 101. Mentally she is amazing and will sit and do Sudoku, crosswords and play ‘upwards’ and cribbage. She can only get out in a wheelchair, although she can manage around her little granny flat using a walking aid.
My husband hasn’t fared so well, but for a while I was able to cope with his increasing problems with dementia with the help mainly from my youngest daughter.
Two years ago, I finally agreed to ask Social Services for help, and help, and help.
Then, a year ago, my husband went down with a urine infection and things went quickly from very bad, to me going about like a zombie from lack of sleep.
After falling out of bed numerous times and me struggling to get him off the floor and back into bed, my husband, one morning, finally fell out trapping his arm in the bed support at 3.30am.
I was unable to release him, so I had no option but to call the emergency services. After they arrived, released him and got him safely back into bed, they then questioned me about my situation.
They were shocked that I cared for my 100-year-old mum as well as my husband, with no help from Social Services. The paramedic said she was going to put a report in.
Since then, things have improved tremendously. Social Services have apologised for taking so long to do an assessment on me. They said that one of my problems was that I didn’t make enough noise. But, as I told them, life is difficult and stressful enough without the extra stress of trying to get help when no-one is listening.
My husband now goes once-a-week for day care to the same centre that my dad had gone to years earlier, and Social Services are going to try and get him in for a second day each week. They are also going to arrange for someone to come in each morning to wash and dress him, which will be a big help.
Everyday challenges of dealing with dementia
At one time, I wondered how you could tell the difference between the different types of dementia. I never thought I’d get first-hand knowledge of dementia.
Dad’s Alzheimer’s meant that he forgot things as soon as you had told him something. Thankfully, he never forgot who my mum was but he regularly thought I was his sister. He greeted everyone as if they were family so they never knew that he hadn’t a clue who they were.
In a way, it was a gentler dementia than what my husband is suffering. With my husband, he recognises everyone. He has a better memory than myself for remembering something for the next day, but he has caused a lot of damage around the house…
A radiator that had been turned off, needed wrenches and spanners to ‘mend’ it.
Checking the fuel tank didn’t mean looking at the gauge on the side, it meant climbing up a ladder and hammering off the catch and getting a long stick to dip stick it.
To open a can for a drink doesn’t mean pulling the ring, but instead getting a sharp knife and stabbing the can a few times. Needless to say, all the sharp knives are now hidden away.
By far, the most tiring thing that my husband does is asking to be put to bed, then two minutes later after tucking him up and kissing him goodnight, he will come back into the room and ask to be put to bed.
This can happen about four to six times within the first hour before he settles to sleep. Then he is up about every two to three hours throughout the night.
And I am not going to go into the wet floors and bed!
If, like Rosamond, you are struggling to receive help with your loved one, you might like to give us a ring for some advice on our free helpline: 0800 246 1939
Or you can have a look at the range of technology that’s available to help ease the pressure off you…