Hi
I happened upon this site a while ago and never posted but after watching Malcolm and Barbara I felt I needed to make some connections with people who know the feelings that can come about due to dementia.
My Mum has vascular dementia. We had always been close but, she started to lose empathy. One particular incidence I remember was when I phoned from holiday ( I was with Mum in Italy) home to my husband to be told our visit to the IVF clinic had arrived I burst into tears. My Mum's reaction was so strange and out of character..it was you had better stop those tears it's dinner time..and didn't discuss it!
I was lucky and got pregnant first off, but Mum was strange throughout. I thought that she was jealous, she was constantly tired, argumentative and could be dictatorial. It continued once the boys were born, paranoid I was not travelling to see her but nothing I could put my finger on, until I stayed for a week at her house when my sons (yep I had twins) were 8 months old when we were in a supermarket in her own town B and she turned to the checkout assistant and said that she had nothing like this at home. He asked her were home was and she told him B and he looked at her oddly. I realised that she was confused and arguments that we had during the week made sense. She thought she was staying with me.
She presented well and it was another 9 months before we convinced her GP that there was something wrong. By the time the GP told Mum she had dementia she had lost her insight into what it meant..she was just glad that she had a name for her tiredness.
I lived over 200 miles away..my sons were toddlers but I tried to visit her every 3-4 weeks. I went down to surprise ehr for her birthday but went to visit a night early as she had been soudning so odd. I discovered her ill, my brother had taken her to the GP who reckoned that she had fallen. I stayed the night. It was my first night away from my sons who stayed with my husband at his parents.
I checked on her regularly but then fell asleep, exhausted from caring for twin toddlers. A couple of hours later something awoke me and discovered Mum on the floor. I called the emergency doc and husband in that order..luckily they sent a rugby player doc who managed to get her back to bed and arranged a hospital admission as she wasn't well.
A UTI caused her admission but then 3 days later she burst an ulcer. Luckily she was in hospital. Emergency surgery followed and the dementia progressed. She was assessed as needing nursing care after 7 weeks in hopsital. We found her a good nursing home, with an EMI unit, although she was admitted to the frail elderly unit at that time.
After a couple of months in the home she was depressed because the home had been so successful. SW wanted to move her to residential but we stuck to our guns and the home ensured their activities co-ordinators kept Mum occupied and she came to enjoy it. By the summer though she was showing signs of aggression to the other residents and was moved to the EMI unit.
There she has been for the last 3 years slowly fading from her own consciousness.
Within the last few months she has even at times had difficulty recognising me, although I have moved now and can visit twice a week.
I have grieved. I often speak of my Mum in the past tense as she has, to all intents and purposes, gone. Once I had done that grieving and accepted that fact it became easier to deal with. It was hard watching my sons gain their skills as Mum lost hers. She loved children but has never been able to be a "nana" to them..although some of my sweetest memories are of my sons sleeping on her bed in the Nursing home just after she went in..when I used to visit with them at afternoon nap time.
We have done the vigil by the bed when the GP said that the time had come as she suffered with yet another UTI, but when we thought that all hope was gone and were asked who we wanted her undertakers to be she rallied. She amazed everyone by making almost a full recovery after 2 months in bed. She walked, ate and talked. She has incredible will power and strength. She is also content.
I sometimes find it hard as, for most of my friends, it is a grandparent that has the disease. I am probably a good 10-20 years younger than most of the other "offspring" that visit the home..in fact the home staff have been wonderful to me in many ways. As an exhausted multiple mum they always made sure I was comfortable and had tea. Even when Mum was really ill and I sat for hours I was not chased away as those that knew me knew that for me sitting by Mum was a rest. (Still is!!!!) I have been told that I am unusual in the home,as for most visitors it is a stress, but becuase I have accepted Mum's condition I find it easier.
I have also, through the last few months, found it easier to think of her passing and, although I know I am going to be sad when that time comes, will welcome it when she decides for that to happen. I am just so scared that it will take a long time as I sometimes feel like my life in "on hold".
My sons are 5 now, almost 6 and I have had to explain why Nana is the way she is. They are quite accepting, although no longer want to visit and occasionally have wished Nana gone so Mum doesn't have to visit her! But their phrase for it was invented a couple of years back. "Nana is reaching the end of her Numbers". Their theory is everyone has their own numbers and you die when you reach the end of them. They thought this up when they were 4 and it has helped to explain it to them beautifully.
I never meant for this to be so long. Just thought that I would share part of my story so far, having read and realising how supportive you all are.
Mameeskye
