What a sad system!

It’s now been three weeks since Mum’s status was upgraded to “emergency” first available bed. Some emergency, eh? I even have our provincial MLA’s office calling them every day to find out if a spot has become available. When I first contacted them it was to see if there was any way for me to get any assistance to help us survive. They ran into the same roadblock – that I “chose not to work”. Talk about out of touch with reality/. Like I have a choice? Failing that they said they had some “special contacts” who could get around the system, and get her treated as a priority. Yeah, right. Three weeks later and nothing.

Mum has her good days and bad days. She’s still not eating hardly anything and wasting away. I asked my sister to follow the advice everyone has given us about taking Mum into the hospital, then refusing to take her back when they want to release her. It’s a sad way to do things, but everyone who has had anything to do with an Alzheimer’s patient says this is how it works, or doesn’t. My sister has been in denial ever since Mum was diagnosed, and nothing has changed. One of my Dad’s biggest disappointments was that Wendy would not take the few minutes to watch the video Dad got from his care givers group – a video that explained the regression of the disease and how it affects caregivers. She refused, and it hurt him. Since Dad passed away, all Wendy sees is that she comes down on the weekend for a day, and takes Mum out to breakfast and the casino and bingo – party time, and Mum is okay. She doesn’t get to see the “joy” of the rest of the week, when Mum is lost and crying all the time and shaking and upset and terrified. No, she doesn’t have to see the reality.

A good friend went through this with her Grandma, and she warned me against leaving it too long, like they did with her. She bounced around the various aunts until no one could take it anymore, then they put her in a care facility. Every time someone visited her she cried and apologized for whatever she had done wrong to be “punished” like this. She had gone too far to be able to understand that this was best for her, and she wasn’t being punished for anything. Celia said it’s hard, but don’t leave it until Mum is like this. Get her into a facility while she’s still able to comprehend what it’s all about and can enjoy it for a while at least. It would be nice if my family had enough understanding of the disease to be supportive instead of just constantly criticizing. Those of you who look after an Alzheimer’s patient know all too well how tough it is without getting additional crap from your own family.

It’s sad to watch someone you know and love, who was so full of life, waste away in front of your very eyes. The worst part with Mum is that, although she is 83 years old, her overall health isn’t that bad for someone that old. She beat cancer in 1991 and she’s stayed pretty active and healthy. Now, the confusion and upset of losing her mind is affecting her health by her refusing to eat. This will only get worse as she loses her grasp on reality more and more. It was heartbreaking to listen to her answer questions on her last assessment by Interior Health. She doesn’t know how old she is; she said it was fall; she said her health is excellent – she’s “eating like a horse”, and her memory is “excellent”. The saddest part of Alzheimer’s is that they even forget they have Alzheimer’s.