A Slippery Slope

A Slippery Slope

Note: This story contains triggers about dementia that may be upsetting to some.

Dementia is the cruelest of thieves. It slips in, unnoticed, stealing small memories at first, ones you might have just misplaced, leaving you with the belief that you need to pay a little more attention to details. Then in an effort to pay better attention to details, you find that you are obsessing over whether you have forgotten something and you start repeating yourself more often than before. It is at this point that you realize that you are being robbed and you seek professional advice, first to confirm what’s happening and second to find out how to make it stop. But that’s the catch. You can’t make it stop. You can perhaps slow it down a bit, but there are no locks, no alarms, no sentries to post that will keep dementia at bay. It becomes more and more aggressive, taking away the ability to control your own life and ultimately stealing your dignity.

My mother was diagnosed with dementia. It was a hard thing to watch. She was a very competent, self-sufficient woman who eventually died in a nursing home without knowing who she was, who I was, or anything about her life except the occasional lucid memories that slipped through. That is, she could talk to me about me, her daughter, while at the same time asking who I was.

I was her caregiver until it reached the point that it wasn’t safe for her to stay here in my home. She would get up in the night and start cooking only to go back to bed and leave the stove on high or the water running in the sink, or even scarier, she would leave the house and I would have to ride around and around the neighborhood until I found her. The final straw was the night I found her in a graveyard a couple of miles from my house. She said that she was looking for her final resting place next to her husband and she became quite combative when I tried to get her in my car to come home. She had a total melt-down because she didn’t recognize me, thought I was trying to kidnap her and eventually I had to call 911 and an officer from the local precinct came out to help. She finally agreed to go with him because of his uniform and he was able to give her a ride home.

That’s when I realized that dementia was not only stealing from my mother, but it was stealing my mother away from me, too. As she looked at me with challenge, distrust and fear, I knew for certain that we would never have another heart-to-heart talk, just being mother and daughter who had a bond so close that nothing could break it, except that now it was broken and the basic building blocks of our lifetime of shared memories were no longer there. The foundation that was our relationship was changed irrevocably, and now solely relied on my memory of our life together that would never be reflected back to me in her words and actions.

Putting her in the nursing home was one of the hardest decisions in my life. I felt like I was giving up on her or that I had failed as a daughter as I turned her over to total strangers. At the same time, she looked at me like I was a total stranger and that sliced me to the heart. Once dementia sneaks in, the process of losing the one you love begins and continues until the actual physical loss of life is a relief. You find yourself at the funeral with no more good-byes to give because the person you loved was stolen from you years ago. This is not necessarily a comfort.

Then you start to realize that dementia isn’t quite threw with you yet. What about heredity? How prevalent is dementia in your family tree? So, you live with the fear of developing dementia yourself. It’s not like anyone can know for sure or do anything about it if they do know. It just comes on, gets worse, makes it impossible to live as an independent adult and then you just forget everything necessary to function and eventually you die. So, I did what anyone facing an unpredictable and unstoppable event might do, I put it aside and went on with the business of living my life.

Fast forward about 25 years, and you find me facing the reality of an elusive and slipping memory head on. Are all my worst fears coming to pass? Is this dementia? If I had thought that watching my mother go through this was hard, I now truly recognize the cruelty dementia brings as it toys with your ability to make accurate assessments. The depth of this heinous crime is just now being realized as I live it.

Of course, at least for a while, I watch it happen to my family and friends, too. I watched my children watch me for signs that I was following the memory loss path of their grandmother and the fear, pity, and sorrow in their faces as it became apparent that I was going down the same road. But most of all, it is the absolute lack of control that beats down your spirit.

One of the first things I did to try to put dementia in a box labeled “health issues to manage,” was to be sure that I let people close to me know that I was repeating myself. I could see it in the faces of the people around me. At church, I would see people I normally would chat with after service, look sympathetic and find excuses to end our conversations, probably because I was saying the same thing over and over. Then simple things like making out a grocery list became nearly impossible. In my lucid moments I would find multiple grocery lists around the house that had a lot of the same items and then there would be items I couldn’t figure out what I had planned to do with them if I bought them. And of course, I never seemed to have one of these lists when I was actually at the grocery store. Just a little absent-mindedness?

And then there are the packages. Did I really order this set of towels? They are pretty blue towels, but when I tried to put them away in the linen closet, it was already quite full of very good blue towels. Why did I order these? Maybe I’ll give them to someone who needs them. What else did I order? I should review my last credit card statement. Still trying to control my slide down the slippery slope, I make plans to put in checks and balances to offset faulty decisions, but then of course, I can’t remember to follow-through. No matter how hard I fight it, my mind is wide open to burglary. I’ve worked all my life to learn and become the best person I can be only to now have it all taken away, piece by piece, until I resemble an angry child trying to get through the first day at a new school.

So, I have dementia. I’m still the same person I’ve always been. I know who I am, and I know where I am, but I for get things. I repeat myself and I can’t help it. Just tell me if I’ve said this before, but I have dementia and I forget things.

Have I told you about this new recipe I tried the other day? It’s for making blueberry scones and it’s delicious! The key is to make sure you put your butter in the freezer for about ten minutes and then grate it into the flour instead of putting it in soft. I found it in … well I’m not sure where I found it, but I made it just the other day and it is delicious!

Have I told you this already? I seem to be forgetting some things lately and I’m repeating myself. I know that is irritating, so please just tell me if I’ve told you this already. Some days I’m fine and other days, I just seem to forget things.

I just thought I’d call you. We haven’t talked in a while. Oh, did I just call the other day? Well, you can never talk to good friends enough. How are you? Have I told you about this new recipe I tried the other day? It’s for making blueberry scones and it’s delicious! The key is to make sure you put your butter in the freezer for about ten minutes and then grate it into the flour instead of putting it in soft.

Frances called me today. I’m not sure why she calls so often. I think we just talked the other day. She’s living with her oldest daughter now and her health is getting worse. She may have early dementia. That’s such a shame. It’s hard when you can’t remember things. I have dementia, too. I know who I am and where I am, but I forget things.

I’m so forgetful these days. I can remember most things, hopefully the important things, but sometimes …

Just this month, my daughter put my bills on automatic payments. I’m not sure I like that. I’ve always managed my own money. I’m never late, but she said that I had missed a month or two on paying utilities and my credit card bill. That’s not like me at all. She says that now bills will just be paid directly from my checking account. I’m not sure I trust that. I like it better when it’s under my control. But then, I have dementia and I forget things.

The other day I was driving and got lost. Well, not lost exactly. I’ve lived here for twenty years, and I know this whole area like the back of my hand. I’ve always had a good sense of direction and I remember landmarks very well. But the other day I looked up and just couldn’t figure out where I was. The houses looked familiar and unplaceable at the same time. I could read the street sign and the name sounded familiar, but should I turn right or left? Left, I think, but when I accelerated someone blew their horn at me. It was loud and long! That was rude! Is the light green? No? It’s red, so I’ll wait. Which way should I turn? I started crying but managed to pull over to the side of the road out of the way. I called my daughter. She asked me about street signs and what I was seeing and then she talked me through getting home again. Of course, I know where I am now. That was just a strange situation that I’ve never experienced before. I’m sure I’m fine now. I have dementia. I know who I am and where I am, but I forget things.

My daughter says that I should come and live with her. I’m not a child! I want my own space. This is my house, my home, and I want to stay right here. She means well, but I’m not ready to give up my independence. Sure, I forget things sometimes, but I’m a grown woman and I can take care of myself. I’ve always taken care of myself!

My daughter wants me to move in with her. Have I told you this? I know I’m repeating myself, but I just can’t remember if we’ve talked about this. I don’t want to move. I like my home. This is where I need to be. Am I really that forgetful? I still feel like I’ve always felt. I know what I’ve always known. I just repeat myself sometimes. I think I’ll call Frances and see what she thinks.

Did you know that Frances is in a nursing home? Her health is getting bad, and she needs some care. I’m so glad that I can still do for myself. I don’t think I could live in a nursing home or with any of my children. I may forget things sometimes, but I can still take care of myself.

I’m going to visit my daughter. It’s just a visit. I’ll be back here in a few days. Who’s going to feed my cat? Did I make arrangements for someone to take care of Sunshine?

My daughter is here to get me, but it’s just for the weekend. I have too much to do to be gone for long. And who’s going to take care of my cat? I have to get someone to watch Sunshine. What is my daughter thinking! I can’t just pick up and go off with her for the weekend. I have a cat. I think I need to feed her. Kitty, have you eaten yet? Is my Sunshine hungry?

I’m not sure how long I’ve been here with my daughter, but I’m ready to go back home. You know, that cat looks just like my kitty. Yes you do! You look just like my Sunshine. I miss my kitty. I’m ready to go home, but my daughter says I need to stay here. Why do I need to stay here? I’ve been taking care of myself all my life. I need to get back to my house and my cat. Maybe I’ll call Frances. I know who I am, where I am and why I’m here, but I forget things.

If I only had my car … Did I sell it? I asked my daughter and she says we sold it a month ago. I didn’t sell it! She sold my car without telling me. Now how am I supposed to get back home? I’m stuck here. Why did she sell my car?

This cat looks just like my Sunshine. I miss my kitty. Who’s taking care of her while I’m stuck here at my daughter’s house? Someone needs to feed her and love on her. If I had my car, I’d go take care of that. What happened to my car? I think someone took it. Maybe it was that nurse who was here the other day. I didn’t like her. She made me stretch and exercise when I just wanted to go home. I miss my kitty. But you look just like my Sunshine. Come here, kitty. That’s a sweet cat.

Of course I took a bath. This morning? Well, sure. It was this morning, I think. Yesterday? Well, maybe yesterday. I don’t need you to tell me when and how to take a bath!

My daughter fixed the best ham and eggs today. The ham was sweet and the eggs were seasoned just right. It was delicious! She takes good care of me. Did you know that this cat looks just like my Sunshine? My daughter fixed the best ham and eggs today. The ham was sweet and the eggs were seasoned just right. She’s good to me, my daughter. This is a sweet cat. She looks just like my Sunshine.

I’m so glad you stopped by to visit. I’m doing fine. I’m staying with my daughter for a while. She made the best ham and eggs today. The ham was sweet and the eggs were just right. Did I tell you that I’m staying with my daughter for a while? I’m sure I’ll go back home soon, but I’m here for now. I know who I am, where I am and why I’m here. I miss my cat. This one looks just like my Sunshine.

I don’t know who this woman is who says I have to stay here. She can’t tell me what to do. If I had my car, but someone took my car away. I’m not supposed to drive any more. They say I can’t drive, but I’ve been driving for years and I’ve never had a wreck or a ticket. I didn’t get a ticket, did I? I’m a good driver. Was I in a wreck? Wy did they take my car?

What do you mean I should ask the woman I’m living with. That’s my daughter and I’m not living here. I’m just visiting. I have a house and friends I need to get back to soon. Maybe I’ll drive back tomorrow. I miss my cat.

I don’t know why all of my friends and family never come to see me. There’s just this woman who says I’m living with her now. I don’t want to live with her. Who are you again? Is this your cat? I used to have a cat, I think. Did I have a cat?

This woman I live with is nice and she has a great cat. I think this cat loves me more than her now because she is always in my lap. I just rub and pat on her. I think I used to have a cat. And didn’t I use to have a house? I know I did, but I can’t remember where it is. Where is my house? Who’s living there now? Will I be going back there soon?

I don’t know who all these people are. I’m so tired. I know who I am, but I’m not sure where I am or why I’m here. Do I have a daughter? I thought I did, but if so, where is she? I just sit here and let people tell me what to do and when to do it. I don’t like to be bossed around. Did I have a house? I have all these pictures, but is that my house? I think that was my mother’s house. I don’t know who all these people are. I’m tired, I’m so tired.