(Kathryn and I in the fall of 2009)
The group home can't give medication, including something as simple as Tylenol, without a prescription, so they had to take her to the hospital emergency room to have her seen by a doctor. The doctor said she had a virus and they got the prescription for Tylenol.
Then last Thursday, she still had the high fever between doses of Tylenol, so the staff of the group home took her to the family doctor. Unfortunately, the family doctor is away at the moment and her fill-in diagnosed a possible bladder infection or maybe pneumonia (which put her in hospital last year the day after Denis and I returned home). So the fill-in doctor prescribed an anti-biotic which would deal with both possibilities.
Today, the staff took her back to the hospital emergency room as she is still having lots of drop seizures and is not eating. She does have pneumonia, and the doctor at the hospital was really annoyed about the antibiotic she was prescribed last week as it doesn't work well for pneumonia.
The killer is I haven't been able to see her. Denis was sick last week with a high fever and cough. And then on the weekend my back went out and I just couldn't face getting in and out of the car. I feel so bad that I can't be with her when she is so sick. This time last year I was in those first days home with Denis and I was visiting her at the hospital once or twice a day, but not being with her ALL the time was the hardest thing I had to accept.
Before Denis, Kathryn was like my child. I've had an active roll in her care since I was 9 years of age. At that age, she was having lots of drop seizures and couldn't feed herself. I begged to be allowed to feed her during family meals. So I would sit at the table and feed her, and then eat my meal afterwards (okay, I should mention that I really have ADHD, and sitting through a whole meal and only eating was painful when I was a child, this was SO much better).
Today I feel guilty not being there for her, but I have to face the reality that caring for her is much more than one person can do. In fact, growing up there were always 4 adults working together to look after her. When we were young, it was my parents and maternal grandparents. With my grandparents passing, my brother and I were able to step in and help. Today, there is just my brother and I, and we work full time and have Denis.
In other words, I know this is for the best and that I am doing what I can, but my heart feels like I'm letting her down. Her learning level is very similar to a 2 year old, but she seems to understand a lot. Luckily she is never mad at me, she loves the time I spend with her and accepts what I can do with her. I really should take a page from her book and enjoy the time we do spend together and let it go when I can't be with her.