In the beginning… (Part II)

We left Part I with mum in the hospital having suffered a heart attack believing that dad had caused it after hiring someone to scare her. Dad was totally oblivious of her beliefs and was just very concerned about her health.

To cut a rather long story short mum ended up having a quadruple heart bypass operation and staying in hospital until mid-February. Throughout her stay mum continued to believe that the heart attack was dad’s fault.

When it got near to the time for her to return home she became more and more worried about being back at home with dad. One day she told a social worker that she was terrified of going home because of what dad had done before the operation.

The social worker fully believed what mum told him without checking either her medical records or with anyone else in the family. He opened an Adult Protection order for mum which meant she could go into a care home until the situation could be properly investigated.

My sister and I talked to the social worker explaining that we believed mum was imagining the night-time events but this didn’t seem to have any impact. The social worker then suggested that dad be assessed in a mental ward! We were horrified by this suggestion and called the Older People’s Mental Health team (OPMH) to gain their input.

Thankfully, OPMH confirmed that it was highly unlikely that dad, even with dementia, would wander at night and try to cause mum harm. They suggested a Just Checking system be fitted so that they could monitor dad’s movements day and night around his home.

It was at this point that I had no other option than to tell my dad that his wife of nearly sixty years had accused him of doing her harm and that she was too frightened to return to the family home while he was still there. That really was one of the hardest things I’ve ever had to do.

Dad had been terribly worried about mum throughout the time she was in hospital and the worry seemed to drive him ever more downhill. He became much more confused and forgetful. He couldn’t cope with his finances any longer and he realised he should stop driving.

One great blessing though was that dad continued to be the realistic and sensible man he’s been all his life. He asked my sister and me to take over and gave us Lasting Power of Attorney (LPOA).

For anyone in a similar position this is a must. It really is very difficult if a parent has dementia and has not granted LPOA to someone else in the family and the earlier they do it the easier it is.

But back to the story… There I was sitting in front of my dad having to tell him that mum wasn’t coming home and that social services wanted to monitor his home because mum believed he wanted to do her harm.

All I can say is that dad made a very difficult situation as easy as it could be. He was amazing. He listened, we cried, we laughed and without hesitation he agreed to do whatever it took to resolve the situation.

None of it was easy though and it all took weeks because there is only one Just Checking system in the NHS Trust where my parents live. During this time mum was in the care home recovering from her bypass operation and as she became physically stronger so she became more and more demanding.

Mum wanted to go home and she just didn’t seem to understand that she had to wait until social services had completed their investigation. She had started a process which she now had no control over but she wasn’t going to accept it quietly! She cried, she shouted, she threatened to run away from the home. Each visit was spent trying to reassure her that one day she could go home but that day wasn’t today.

The positive side to the delay though was that the care home staff were able to see first-hand that mum was suffering from delusions and when this was reported to social services they finally visited again and saw for themselves that poor mum’s reality was not the same as everyone else’s.

Eventually in mid-March the Just Checking system was fitted and proved what was now obvious to all. Dad was not wandering at night and mum’s story of his night-time wanderings was her mind playing tricks on her.

By now it had become obvious to us that neither mum nor dad would be able to cope with the stress of living together. It was almost unbelievable that both husband and wife could suffer the onset of dementia at almost the exact same time but that is what seemed to have happened.

Dad was an absolute saint about the whole situation. He gave up his home and moved into a warden assisted flat so that mum could go back to the family home. He even gave up his dog because mum said she couldn’t face life without her.

As it turned out dad didn’t have Dementia but Normal Pressure Hydrocephalus which has meant his decline has been much more rapid than mum’s. He’s really quite poorly now but even a year on, he still worries more about mum than about himself. He can hardly walk now, yet he still wishes he could go and help her whenever she has a crisis – which, of course as you know from our blogs, is often!

So there you have the background to our Fifty Shades of Dementia story. It isn’t really funny, it could be quite heart-breaking if we sat and pondered it, but life goes on; we work; we deal with the day to day drama of our parents’ lives and we try to look for lighthearted moments to share in the hope that our stories might in some small way help…