The Hard Choices of Dementia

When I was a little girl I always wanted to look like my mother. I thought she was the prettiest woman ever. And I wanted to be like her too. Strong. Determined. Smart. Patient. Loving. She was ready to do whatever necessary to take care of her family. She loved us, her three daughters. 

Mom grew up during the Great Depression years. She had three sisters, no brothers. She and her sisters were always close. They loved their mother and father. My grandfather was a blacksmith and served in World War I as a cook. He died when I was five. I only have a couple of memories of him. I'm not one of those people who can remember when I was two. I do well to remember when I was twenty. LOL. But Mom always had a great memory of how things were when she was a little girl. Those memories were the inspiration for my first Rosey Corner book, Angel Sister. While the story is completely fiction, I owe the inspiration for the background and the characters to Mom's stories of her childhood years. 

Mom's only a few weeks from being ninety-four. She always said she wanted to live to be a hundred. But she never planned to lose her memory to dementia. We never thought she would lose her memory to anything. We thought we'd have our mom with us as our mom until she moved up to heaven. It hasn't happened that way. When she reached her late eighties signs began to show up that all was not right. She began to think things had happened that had not happened. Always things that made her unhappy. Still, she managed for a few more years with us dropping by to help with the little things. Then she fell and although nothing was broken, it was a traumatic experience because she was unable to get up and lay there for we don't know how long before my sister stopped by. 

We didn't think she would pull through that. She got better, but her mind continually got worse. We started staying with her around the clock after that fall although at first we could make quick trips to the store or wherever. Then her mind got even worse. We couldn't leave her alone. She started wanting to "go home." Home was not this house where she'd lived for over twenty-five years. Home was most often her childhood home. Her parents hadn't told her she could stay so long and they were going to be upset. At times she also thought about her home with my father who has been gone for almost thirty years. She had to fix supper for him and the "children." Nobody was watching the "children." She had things to do and she really needed to go home. And because she has always been a determined "I can do it" type person, she would get up and try to go out the door. If nobody would take her home, she'd just walk. After all, the "home" she was seeking was just over the hill. 

And so, the lies began. At first it was difficult for me and my sister to lie to our mother, but it is cruel to tell a dementia sufferer that their loved ones are dead. It doesn't stay in their brain and is a fresh pain every time. Besides, Mom would sometimes look at you as though you were the one without good sense since she'd just seen her mother or father or husband that very morning. So a lot of time her mother and father were "out of town" perhaps visiting "out of state relatives." Nevermind, that they had no out of state relatives. Dad was doing various farm jobs. Perhaps in the hay in the summer or stripping tobacco in the winter or feeding the cows. Whatever came to mind. And "tomorrow" became the promise that never happened. Tomorrow we'd see about going home. Tomorrow we'd talk about it. Tomorrow we'd do whatever we had to do. And that is what happened. We did whatever we had to do.

And now tomorrow we're going to do what we have to do again. We're moving Mom into an Alzheimers' Home. It's a beautiful place with a caring staff. It's our way of trying to give her some more time out of the nursing home since her funds are getting low and we may need to sell the house to keep financing her care. We are naturally concerned. So much can happen. We want Mom to be happy. She's not happy here most of the time. She may not be happy there. She may not be happy anywhere until she moves on "home" to be with her mother and father and sisters. It's a difficult choice. It may not work for her. Then I don't know what we'll do. 

If there's ever a time when a person has to take it one day at a time, then dealing with dementia is that time. Sometimes it's one hour at a time. I know many of you are dealing with the same illness, and it is an illness, a cancer of sorts of the mind. So may we all take it one prayer at a time. 

The Saddest Disease - Dementia

"I want to go home." That's my mother's constant desire these days as her dementia continues to worsen. She's not talking about heaven as some people might think. She's quick to say she's not ready to move up to heaven just yet. Most of the time, the home she's talking about is her mother's home where she grew up. This is a picture of Mom when she was around sixteen or seventeen with that mother she wants to see and her older sister, Evelyn. Mom's on the right and Evelyn is on the left. Evelyn went to business school after high school and she looks very business like in this photo. 

 

Sometimes, but not as often, the home my mother wants to go to is the home when I was a kid. At those times, she might be thinking my sisters and I are young and playing out in the yard. She needs to watch us and cook supper for my father. She can't understand why people keep telling her she is at home when she recognizes nothing around her. She no longer remembers where the bathroom is in this house where she's been living for over twenty-five years. The furniture is new to her, even those pieces that she's had since her early married days. She has no idea where all the knickknacks sitting around on the shelves came from. She's forgotten how and where she gathered them or inherited them when others in the family passed on.

 

Harder to explain, she thinks the pictures in the magazines are real at times and the people on television are actually right there in the room with us. She gets irritated at them when they keep talking and ignore her. Last week when I was here, I started watching the UK ballgame with her. By the end of the first half she was saying she thought it was time for those boys (the ballplayers) to go to bed. Usually by the time darkness falls, she's tired and resigned to staying at this house one more night.

 

I've quit trying to tell her that she is at home and just say we have to stay at this house. It's nice and warm. Has all the conveniences and yes, it does have bedrooms and her gown is in one of the bedrooms. That's always a relief for her. Of course, there have been times when she refused to put on her gown and wore her clothes to bed. I assume so that she would be ready to go when somebody finally remembered to show up to take her "home."

 

At first it was difficult for me to lie so blatantly to my mother. But now I say things like Dad's working late in the fields. Perhaps picking corn by the harvest moon. Or he's getting the hay in before the rain. We tell her that her mother is visiting relatives out of town. I tell her that we'll have to wait until tomorrow to go "home." When she says she drove the car down this morning or was just at the grocery store, I nod and pretend that very thing happened. When she says Ann came and got the kids, I say, that was good. 

 

I lie over and over again. But as I wrote on here once before, the truth no longer matters to my mother. She has lost all the truths of her life except for that dream of going back to when she was young. To when she was needed. To when life was fresh and easier. To when she can almost remember how things should be. She doesn't remember that time right either. It gets all mixed up with what's happening now and even what she sees on the TV when it's on. We often have to avoid or turn off the news so she won't identify with the bad things happening. 

 

So we continue taking it one day at a time and sometimes one hour at a time. And it is so very sad. I think it is harder for my sisters and me than her other caretakers because we know what Mom has lost. We know what we have lost. And we're sorry, so very sorry to have lost our mother this way. We still have her with us, but we've lost the mother who was our friend, our biggest supporter, our encourager, and maybe the mother that someday we will wish we could go "home" to be with.

 

I don't write about Mom too often here because it is so sad. But I know many of you have prayed for Mom and for me, and I appreciate that so much. Prayer has been the "medicine" that has worked best for Mom when things were really going south. So thank you all.

 

On a lighter note, keep in mind you can check out the Bookfun Network site and leave an answer there to one of my easy questions for a chance to win a copy of my book, Christmas at Harmony Hill. More opportunities to win the book or other prizes will be showing up so stay tuned or sign up for my newsletter if you haven't already. Also, you can still leave a comment here until Wednesday to throw your name in the hat for Jan Watson's books.

 

Thanks for reading! Hope you have a blessed and happy Thanksgiving!

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When the Truth No Longer Matters

This is my beautiful mother at the age she thinks she is now.  Or sometimes she thinks she’s younger than this, still a child going to school or one who lives in her parents’ house. She constantly wants to go home because they will be worried about her. Oh, to be able to go home to where confusion didn’t muddle things, where those she loves are still alive and well and ready to welcome her back. She has no use for this place where people are continually refusing to let her put on her shoes and walk home.

Other times she’s more the age she is in this picture. Early thirties or late twenties. Her children are still young. Her husband still needs to have supper cooked for him. A lot of the time she can’t understand why he doesn’t want to come around anymore. Lately that has changed somewhat to she just talked to him this morning or he just left. At times it feels as though I’m in the midst of a crowd of invisible people – those she sees in her memory’s eye who are so real to her. She’ll ask, “Has Maggie left?” Or “Where did she go?” I’ve never known a Maggie in our family or any friend of Mom’s named Maggie now or in the past. Well, we did have a Maggie cat once, but she’s talking about a person and not a cat. 

Most of the time it is a name I do know. People who have passed on. Her sisters. Her mother and father. My father. She sometimes doesn’t know me now. I’m way too old. Older than she is. I tease about that with my kids – about how they somehow got older than me. But I never imagined that someday, if dementia steals my reality, I might actually think that had happened.
 

And all that is why the truth no longer matters. Until recently I tried to not actually lie when Mom heads back into her dementia reality. I skirted the truth and did my best to avoid responding directly when Mom talked about going to see her mother. I could distract her by talking about birds or the grandkids. But things have gotten worse now. I don’t think she knows she has grandchildren. And what a terrible loss that is. It makes me sad to think about it. Even sadder than when she says I’m her aunt or her sister-in-law. To lose your family seems the worst.
 

But then she hasn’t lost her beginning family. She went to the grocery store with her mother just this morning and should have helped her more. All the “others” will be here any time now and we might need to cook extra for them. Or when did they all leave? And why didn’t they let her ride home with them?
 

The truth of all the “others” having long ago left her and moved on up to heaven does nothing but make her very sad for about five minutes. Then she forgets that you’ve told her that and starts asking where the “others” are all over again. Truth doesn’t matter. And so I’ve stopped telling the truth in plain words. Now I say that they’ve already gone home. I don’t have to add that home is heaven. I say maybe Dad is playing horseshoes. He could be, couldn’t he? I say they’ll all be waiting to see her tomorrow and then when tomorrow comes the tomorrow after that.  I say it’s too dark to go anywhere. I say that everybody will be settled in wherever they are. I don’t say I saw Maggie or whoever appears in Mom’s dementia visions. I just say she must have left before I came. And so I lie because the truth no longer matters to my mother. The truth is way too sad.
 

Thanks for reading. I promise to come up with something more cheerful Wednesday, but I know a number of you have gone through the same things with your parents or loved ones that we're going through with my mother.