11:01 a.m. - Wednesday, Jan. 05, 2005
Living With Dementia
I love the weather in Tennessee. First it snows like crazy and hangs around for a few days, then it goes away and spring happens. Well, almost happens. We had a hard snowfall over a week ago and it lay on the ground for about four days before it began to melt. The temperature rose into the 50's, then 60's and it's so warm people go out in shirtsleeves.
I have moved. My mother, who has dementia, was beginnin' to get worse. She hasn't begun forgettin' people yet, but she forgets days and happenings. And it makes her very angry if anyone corrects her in any way. She has taken a firm disliking to me. She got to the point that it was nearly impossible for me to handle things alone, so my sister offered to help out with her and we all moved in together.
It's really hard to describe how my mother is. Unless someone has known someone with dementia, they really don't understand how things can become. My mother looks for reasons to complain about anything I do. She hates my cat, HB, with a passion that could become dangerous. So I watch HB carefully when Mama's around. I have to remind myself that it's the disease that makes her be like this, but sometimes I have a hard time doin' that. I have seen some of the things she's doing now happen over the years with other people but I didn't pay too much attention to it. My family are all trying to say that the things she does now are new but I remember these things from the past as being part of her personality. The things are just more pronounced now. I am only guessing at this, but I think that the disease just makes it easier for her personality to display all the various sides of itself without regard to others or their opinions of her. I hope that makes sense.
We've all noticed that Mama complains nearly constantly. I remember that she complained quite regularly about anything she could find as long as I remember but it wasn't as much and often as now. I try to remember times when Mama seemed content and just plain happy, and there were times. My memory of Mama when we were young was of her watching daytime soap operas or cleaning house. I have slight rememberances of her laughin' but that was mainly when we had company over or something on tv was funny to her.
She had a few friends over the years whom she enjoyed being around, like Evelyn. She and Evelyn had been good friends growing up together and remained close friends thorughout their adult lives. I liked Evelyn really well. She was one of my favorite people and was so fascinatin' to listen to because she had so many experiences to talk about. Evelyn was a hard workin' woman with a drinkin' husband. They had one daughter, Barbara. I used to love the times that Evelyn would visit us or we would visit with her at her home. She could always make Mama smile or laugh. She was a good friend to all of my family right up until she died due to heart failure. I think sometimes people can work just too hard and ruin their health. Evelyn always worked, even at times working two jobs, while taking care of her family and home. I miss Evelyn. I think that if anyone could have been a real help to Mama at this time it would have been Evelyn.
A few years ago my mother had a serious heart attack. She had died in the ambulance on the way to the hospital but they revived her. God must have been watchin' over her that day certainly, for at the very time she was brought into the emergency and it was decided that she would need immediate by-pass surgery, there just happened to be a salesman doing demonstrations of the very device needed for Mama. The doctor told some of us later that this was extraordinary, because in most instances they have to call around to find such a device when it's needed.
Now Mama has a heart pacer and takes loads of pills. She's dropped a lot of weight too since the heart attack and is now just skin and bones. She is worried about dying. She thinks about dying a lot. That she thinks about dying like this worries me. Someone in the family told her that when a person dies he defecates and urinates at the moment of death. This has caused Mama to try to stop eatin' altogether. She thinks that if she stops eating then she won't do this at the time of her death and it won't be so embarrassin'. We can't convince Mama that this is something she shouldn't be worryin' over.
We believe that Mama has developed a touch of anorexia, if there is such a thing a "just a touch" of that disease. Mama tells us that she's not hungry after takin' just a few bites of somethin'. We really believe that she isn't feelin' hungry because her mind is tellin' her body it feels full. I don't know how anorexia works, but she can go for days without eatin' and most of the time will tell us that she's not hungry. She doesn't have an ounce of fat left on her body at all. But she still claims to be getting fat.
Many times Mama will threaten to overdose herself on her medication, which she's actually done by accident a few times. The medication includes heart medication, blood pressure medication, and even an anti-depressant among others for various things. So now we have to keep a close check on her medicine, especialy the anti-depressant.
Livin' with my mother isn't easy. I have found some sites on the web that are set up to help people who live with alzheimer or dementia patients. Some of the things they write about are very helpful and encouragin'. It helps to know that other people understand what it's like. Often people who've never had experience with dementia think surely we must be over-exaggeratin'.
Mama's moods swing from complainin' to depressed to complainin' again. Sometimes she will laugh but it's so seldom any longer. Her sight is very bad also and the medication effects that so that she can sometimes only barely see the television. She can't see to read. So her days are dull and she becomes depressed thinkin' about how there's not much she can do any longer.
Since she won't eat half the time or when she does she doesn't eat enough, it's scarey to take her shopping. Last week she went shopping at Walmart with my sister, Carol, and while she was there, she collapsed onto the floor because she had absolutely no energy. Carol said that the people at Walmart tried to be helpful by helpin' Mama to stand and bringing a chair for her to sit in. Then they offered to bring her some food to eat but Mama refused that. Carol had to help her get inside the house when they came home. Her blood sugar had evidently bottomed out and she ran completely out of energy. This isn't the first time this has happened, but we can't convince Mama that it's due to her not eating.
Her doctor doesn't seem to be too interested in what's happenin' with Mama. He just asks her how she's doin' and writes more prescriptions. She really needs to change doctors. But she hates changes, another area that I have found out is hard on dementia patients. They get used to certain places and people and changes mean tryin' to remember new things which becomes hard for them to do.
Mama blames others for things that happen. She will forget that she has done something and if anyone asks about it, she'll claim that someone else must have done it because she didn't even though she and I may have been the only ones in the house at the time. She's left the stove eye on more than one time and it would set the alarm off, but she would get angry sayin' she didn't do it so it must have been me.
She gets very angry if she's corrected in any way. If she says something, even though we all know it's not right, we can't say a word to correct the impression or she will go off on us. So we just have to let her say or think what she will even if we all know it's wrong.
Mama has managed to make every person in our family angry at some time or other over the way she talks to people or the way she takes things. I loaned one family member a juicer that I'd bought for over $500 once. It was a huge thing that was supposed to blend nearly anything. Then while Mama was visitin' with that person in their home she saw her using the juicer to blend up some cake batter in, but she came away with the idea that Brenda had actually baked the cake in the juicer and she couldn't be convinced that the cake wasn't actually baked in the juicer. Again she became angry and said that we were all just tryin' to make her think she was crazy! Accordin' to her, she saw Brenda do it and she knew it could be done. She decided that she wanted the juicer back so that she could bake cakes for Thanksgiving in it. Brenda tried to tell Mama that she'd only mixed the ingredients up but Mama became angry and slammed the phone up on her. Living with a dementia patient teaches one how to walk around on eggshells as often as possible.
Things have improved some for the present since moving in with Carol. But Mama was fine with me for the first couple of months when she moved in with me. Then suddenly she changed. I warned Carol that her day is comin' and she says she knows and dreads it. I'm afraid to speak now in Mama's presence most of the time. She's takin' a dislikin' to me and finds fault with nearly everything I say or do and it's embarrassin' to hear her talkin' about me to others and sayin' that one thing or another that I do makes her angry. So I've become as quiet as I can be around the house and do a lot of readin' or writin' to friends on the Internet.
Will things improve? I highly doubt it. From what I've read, Mama will only become worse with time as her brain loses function little by little. So far Mama recognizes everyone so it's not turned into alzheimers yet. I read that dementia is sometimes a lead-in into alzheimers. I dread that if it happens.
We don't want to put Mama into a nursing home because she's scared to death of them. A lot of ideas are passed on by her own mother's reaction to things. According to my family when they decided to put my grandmother into a nursing home because she had dementia also and needed around the clock care, she became so angry that she had a stroke and died. To this day my family claims it was the threat of a nursing home that caused her death. Now my mother has taken up this stand also that she will die if we put her into a nursing home or hospital. So, out of respect for her wishes, we will try to do what we can to avoid this step for as long as we can.
