Saturday, February 11, 2012

Let the silence end...

First of all, let me apologize for my silence. I have a very good reason.

January 2011, my mother-in-love, who has lived with us since 2005, was re-diagnosed with congestive heart failure. When she first came to live with us in Arizona, she was already in the hospice program in Arizona and no one was giving her more than six months. She'd had several smaller heart attacks the previous year, the last one making it impossible for her to continue to live alone. Partially because she refused to take prescription medication and partly because she really couldn't take care of her daily needs. She was also diagnosed with dementia, but at the time, we only saw fleeting and sporadic evidence of that change.

We tried to keep her in an Assisted Living home in Lake Havasu so she could continue to attend her church and be near all her friends. But she deteriorated to the point they put her into the hospice program, so we brought her to live with us in the Phoenix area. We wanted her to be with us when she passed. We had been living with my mom, helping her but there wasn't room for another person in her small home. So we found a place to rent nearby that would be suitable for his mom so we could care for both of them. We never expected her to last through the year. If she was living with us, we would be able to get the most important medications into her somehow.

In June of 2006 my mother passed. She'd been battling Chronic Obstructive Pulmonary Disease (OCPD) and was in the early stages of Alzheimer's. Mom was terrified of losing her memory, so when she suddenly collapsed due to what was later determined to be blood clots in her lungs, it was a kind of "blessing." She collapsed around 4 in the afternoon and was gone the following morning by 6am.

Meanwhile, our other mom had come off the catheter. A few months later, she no longer needed supplemental oxygen. And in November 2006 when we moved back to Oregon, she not only did not qualify for the hospice program here... she no longer qualified for a diagnosis of congestive heart failure. We started to wonder if she might not outlive us all.

The last two years, the fact her memory was deteriorating was becoming obvious on a daily basis. Then last winter she got a mild cold but her cough didn't go away. We began to notice that it sounded suspiciously like the cough she'd had with congestive heart failure, so we took her to the doctor to see if it was something we should be concerned about or not.

We have a wonderful neighbor lady next door who offered to come over once a week and help her with a shower, which had become a source of conflict for us. We knew that she'd be more cooperative with someone she didn't see every day and less likely to "play her games." We were right. Having weekly visits by someone so kind and thoughtful was a godsend for all of us. Our "neighbor angel" would bring her little treats, read a story to her, and generally share kindness and joy with her. Meanwhile, we knew she was getting a shower every week and we didn't have to fight with about it anymore.

However, over this past year, she'd gotten more and more combative, difficult, and behaviorally a challenge. It wasn't always possible to know if she was intentionally misrepresenting the truth, or telling herself something that wasn't true and therefore trying to convince us it was true, simply didn't know what was true and what wasn't... or some combination thereof. The latter seemed most likely. In some instances, it was clear she wasn't being truthful and knew it. But in others, it seemed more likely she just wasn't "in the present time," and, like my mom had done when she was "caught" not remembering something she thought she should, she'd "fill in the blanks" with something that seemed reasonable and plausible but wasn't technically "true." Regardless, it was all becoming more and more stressful on the entire family. That, combined with sometimes "going out of her way to be difficult" and uncooperative was really wearing on us all. I'm sure, mom included.

As the months went by and we got into the summer months, she started "escaping." At first, it wasn't a problem. She'd just go outside, in the front or back yard, but didn't venture beyond the boundaries of our property. It was only a problem because no one knew she wasn't inside and she wasn't always stable on her feet. She had a rolling walker, but either didn't remember to use it or chose not to use it more than half the time. In the house, it wasn't a problem either way. Outside, especially if no one knew she was outside, it posed a greater risk to her safety. But she never told anyone she was leaving... she'd just go.

We tried to tell ourselves that she just didn't remember, but we all knew, she simply didn't want to comply with our request. It wasn't on her personal agenda. She was always stubborn, strong willed, and infuriatingly narcissistic, and if she didn't want to do something, it wasn't likely to happen. Unless one could be sufficiently clever to introduce it as her idea. It was not unlike dealing with a petulant 5 year old who was determined to get what she wanted, when she wanted it, the way she wanted it, by whatever means she thought would get her what she wanted. This only got worse, on several levels, as the dementia deepened and she became less and less able to pretend things were other than they were.

By the fall, she would go "exploring." Leaving the house by the garage door, hitting the garage door opener button and leaving the property. She, fortunately, never got further than one of the neighbors on either side of us. They both knew what we were dealing with and if one of them saw her... and fortunately one of them always did... they'd call us and tell us she was "making a run for it," and intercept her until we get there to walk her back home.

We'd already secured the front door so she couldn't possibly go out that way. No one used that door because there was no way to secure that door from the outside when leaving that she couldn't unlock it and leave behind you. We finally had to resort to a keypad deadbolt on the door from the house to the garage... with the keypad on the inside. The garage door opener didn't make sufficient noise for us to hear that opening and unless someone was in the living room or kitchen when she decided to leave, we wouldn't know she'd gone. And she never "went for a walk" if anyone was there to stop her. A bar on the slider to the back deck prevented her from going outside that way with no one's knowledge. Her cognitive functions were sufficiently impaired that she couldn't figure out how that worked. We simply could not permit ourselves to focus on the fact we were living in a "locked down community" because there was no other way to keep her safe.

... to be continued