Joy and Lisa

For me, Younger Onset Dementia first raised its ugly head in the 1980s when my husband was diagnosed with Fronto Temporal Dementia. He was 52 and died at 66 in 1999.

Four years later my daughter Lisa, then 43, was diagnosed with the same type of dementia. She had become difficult to live with and had separated from her husband and was living with her daughter aged 15 and son 12.  Her driving was erratic and she eventually had a driving accident and I found out there was no insurance when I received a bill for $12,500 from the other party’s insurance company.

At this point the children went to live with their father and I brought her home with me. She was happy living with me but I had to lock all doors to prevent her wandering off. She was resistant to seeing a doctor saying she was not like her father and she would kill herself if she became like that.

Eventually, I managed to get her to my doctor and when she realised why she was there, she created an awful scene screaming that she could not believe that her own mother would “do such a thing”. The doctor did not know how to deal with the situation and we left without a referral to a specialist. 

I later obtained a referral. One weekend, she was very difficult to handle so I was advised to take her to hospital. I stayed with her all day and later that evening she was allocated a bed in a ward.

When I arrived early next morning, I found to my dismay that after I had left, she kept getting out of bed so she had been injected with something that took her 3 full days to recover from.  Staff at the hospital did not know how to manage a younger person with dementia and I took her home.

Later, we tried respite but the centre was not a secured facility and one day she walked out. Several hours later, a man dropped her at her sister’s house after he found her at a busy intersection where she had been left by another man who had picked her up. I struggled, getting limited help.

Eventually she was assessed by the Aged Care Assessment Team. I was advised to place her in hospital to assess what medication may slow her progression down. 

 

On one occasion, she followed somebody out the door, staff grabbed her and she kicked somebody in the shins so once again, she was subjected to that terrible injection.  The next day she was weak from the injection and I asked for a wheelchair to take her for a walk. Whilst we were walking around, Lisa put her arm back to touch me saying in a frightened voice “Mum”. 

I said that if anything like that happened again, I would go to the media and I meant it.

Later she went into residential care but after seven weeks they said they couldn’t manage her.  She was a young mobile person.  She went back to the assessment hospital and later into transitional care where she still remains.

When she first entered she was isolated from other residents and placed in a darkened passage outside her locked room with only a plastic chair to sit on with no TV, radio or a window. I complained and later, they opened up a larger area where she sat still on her own. 

We know her type of dementia is genetic and that her children have a 50% chance of inheriting it.

 

My granddaughter has told me that when growing up, she thought her mother did not love her.

At an early age my daughter lost her family, her home and her dignity. She is now 51. 

Her daughter, now a teacher, appears to handling it OK.  Her brother on the other hand, cannot cope with his mother’s illness and is embarrassed by it. 

We all need to work together to reduce stigma and raise awareness of this terrible disease.