Mistake Number One

Mary and I had to make the dreadful decision to move mom into an assisted living home. Because of her resistance to moving, the home needed to have a locked dementia unit. Mom has always been a very independent person. Even when listening to her stories about her childhood, I always got the impression that mom was not afraid to do things on her own. So both Mary and I knew that moving her was not going to be easy. When she was first diagnosed with vascular dementia, we were told by the psychiatric specialists that mom should not live alone. They put her on some heavy-duty dementia medications, and boy do those meds work. Mom was mom again. Seriously. The paranoia went away. The delusions went away. The confusion went away. So, Mary and I decided to take mom home. She did great! Mistake number one. When the experts say, “Don’t let your mother live alone,” follow their advice. Mom went about her business (less her vehicle-we were not completely convinced that she should start driving again) cleaning her house and paying bills. This lasted about two weeks. Then, mom decided that she felt great and, “Why do I need these medications, anyway?” She went off her meds. Yikes! The paranoia came back. The delusions came back. Mom stopped eating because she thought someone was poisoning her food. She would talk in circles and rarely make sense. She would get angry at you because you didn't answer her comment appropriately (the comment she made an hour ago). She started rifling through all her things again. The house was turned upside down. I would get there and the front porch would be full of items that mom wanted to “get rid of.” Toilet paper? Your winter coat? Groceries? Ok, I agree with the ugly blue Christmas tree...that can go. Mary and I were at a loss for what to do. We were taking turns driving to Muskegon every day to check on mom. We ordered meals-on-wheels. Mom forgot how to use the microwave. We hired a home health aid to come help her prepare meals and give her her meds. Mom refused to take her meds. My wonderful friend Teresa and her mother, Gail, would stop by to check up on mom and take her out to dinner. Mom’s nieces and cousin would check in on her to give Mary and I a break. None of this worked. It was clear that Lulu was not safe to live at home. What finally sealed our decision to move her was a late night walk mom took, in the freezing cold, with no coat and only slippers on her feet. We found out about this walk the next day. Apparently, she walked up to the gas station to buy cigarettes, became increasingly confused (an attribute of sun-downers syndrome) and stormed off...down the railroad tracks. She went about 6 or 7 miles, then decided to take a “shortcut” home. This shortcut involved climbing a fence that surrounded a body of water. Yes, I just said a 74 year old women climbed a fence (in her slippers, no less). But, she couldn't get back over the fence. Finally, after standing there for God only knows how long, the police spotted her, helped her get over the fence and brought her home. (She later told us, “The airport fence was just too high for me to climb.”) We moved mom into a home for dementia patients. I can’t even express how relieved Mary and I were to finally have her in a safe place. Seriously, prior to moving her, we would lose sleep at night wondering if she was alright. We were calling her several times a day to check in. Even if we had just left her house, the worrying never stopped. Finally, we felt that we had made the right choice in keeping mom safe. This is all a learning process for us, and we dreadfully realized that we will make mistakes...but, we also will learn from them.

Friends with Dementia

When a parent is diagnosed with dementia, you can't help but begin to second-guess your own mind. "Where did I set those important documents? Who was I supposed to call? I know that person, but for the life of me, I can't remember their name. Oh my gosh, do I have dementia too?" In reality, you have to be rational and know that these things can be hereditary. Mom was diagnosed with vascular dementia at a young age of 74...dementia can happen to people in their 40s. I thank God that I have such wonderful friends to talk to about this. While golfing with a few of my girlfriends, the topic of memory loss came up. They all understand, to a certain extent, what Mary and I are going through with mom. I told them how I fear at times that I, too, am getting dementia. I forget things. It's scary. I can't tell you how relieved I was when Karen told me that she can be really forgetful at times as well. Yay! (I’m reminded of the phrase, “Misery loves company.”) She forgot a woman's name and missed an entire sermon at church just trying to remember it. Karen said she literally had to go through the alphabet, letter by letter, until she picked the correct first letter of the lady's name. By the time she figured it out, the pastor's sermon was just about over! So while enjoying our day of golf, Christine, Diane and Karen were good to remind me that forgetfulness can simply be a sign of stress or age or early signs of menopause. Yes, we forget things. We don’t see so well anymore either. And sometimes, if we laugh hard enough, we hollar for the panty liner! My girlfriends reassured me that forgetfulness doesn't always have to mean dementia, but if it did, we would all be friends with dementia together!

Abortion

Today, my mother said to me, "I should have had an abortion rather than bring you into this world." Now, most of you are probably thinking, "What the hell kind of mother says a thing like that to her child?" When I secretly sent my sister, Mary, a text telling her what mom had just said, her reply was, "Wow". What a bitch." My immediate reaction was to just laugh. Was I hurt by mom’s words? Only a little. I know in my heart she didn’t really mean them. I'm learning that a disease like dementia will make even those whom you know love you say the meanest things. Mom was having a bad day and she fully intended to take it out on me. I totally got that. This blog is a journey for two sisters whose mother has been recently diagnosed with vascular dementia. It’s quite a ride. There are days when we are worried, days when we are sad, days when we are frustrated, days when we have unanswered questions and days when all we can do is laugh. The ride is much worse for mom. Mom became a bit cynical as she aged, but she always loved a good laugh and was never afraid to laugh at herself. Mary and I are taking this process seriously. Who wouldn’t? But our motto from the start has been, “If we don’t laugh about this, we’ll just cry.” We’d rather see the humor in what we are going through...and so would mom.