This morning my wife Tara woke up crying, as usual. I asked her what is wrong. Some mornings she says, “I’m so mad at myself.” Others, like this morning, she just says, “I’m having a hard time.”
I know what to do at this point. I put my arm around her. I reminded her that we set out her clothing last night, and I promised that I would help her get dressed. This usually calms her down, as it did this morning. But she wanted to jump out of bed and get started immediately, so I couldn’t indulge my inclination to lounge around in bed a bit and wake up gradually.
I soon discovered that after we had set her clothing out last night, she had taken her necklaces–an essential part of the wardrobe–off the night table where they usually spend the night and put them on top of a skirt. I had to put the necklaces back on the night table so they wouldn’t be dropped or scrambled. Next I reminded her to take off her nightshirt before putting on the nice pink tee shirt I had selected for her last night. Usually it’s an undershirt but today we are expecting a high of 84 so it will be her only shirt.
Next I reminded her to take off her night pants, pyjama bottoms I got for her when she began to refuse to take off her underpants at night. I figured it for a security issue and the pyjama bottoms do keep her content at night. After they were off, I gave her underpants, quietly grabbing the extra pair she had set out on the large dog crate which she uses as her staging area for clothing. One of the dogs used to spend most of his nights in the crate, but he has since shifted to the bed.
I had left only the dress Tara wore yesterday on the crate, but while I was getting undressed in my room upstairs she got out two skirts and left them on the crate. I’ve learned that if I take extra skirts and put them away at night she gets very angry with me, so I had left them there. This morning I helped her select one of the skirts, then put away the other one and the dress despite her protests that she needed them. I assured her she didn’t.
Next we got the necklaces to put on, and I reminded her to put on her shoes and socks. Because she started last year putting her fresh socks inside her shoes, I do the same thing. Putting on shoes and socks isn’t usually a problem, but this morning she tried to cram her feet into the shoes with the socks still inside them. I had to show her how to take the socks out of the shoes, put them onto her feet–surprisingly, I had to do this once for each sock–and then she put on the shoes.
Recently she has been putting her foot into the shoe and then raising her foot, guiding the foot into the shoe with her hand and making sure the back of the shoe doesn’t get stuffed down inside. I first discovered this could be a problem about a year ago. One night she was getting undressed and when she took off one sock I could see her heel had been bleeding. Apparently she never noticed the discomfort. Sometimes I try to guide her into pulling the backs of the shoes back up, but this morning I didn’t want to be bothered so I just did that job myself.
After all this was finished, and during just a few seconds when I took my eye off her, Tara took her nightshirt and put it back on over her day clothing. She resisted taking it off, saying she needed it, but I managed to persuade her gently that it didn’t go with the rest of her outfit.
Tara and I walked into the kitchen, where she usually waits for me to get dressed and where I grab my small cup of coffee to sip while I’m dressing. (I set up the automatic coffee maker every night if I remember.) She called the dogs to follow her but, as usual, they didn’t come. I assured her they would come when we were ready to go out, and I went upstairs to my room where I usually get dressed while watching a few minutes of “Morning Joe.”
When I got back downstairs, the dogs had come out from the bedroom and were keeping Tara company in the kitchen. She had taken their collars out of the breadbox where we keep them, but she hadn’t put them on the dogs. Sometimes I lead her through this process but this morning I did it myself. Next she took the two dog leashes and asked if she should put them on the dogs. I told her we didn’t use them on neighborhood walks except at night, but that she should bring one with us in case Fluffy decided, as she sometimes does, to just sit down halfway through the walk. I also sprayed both of us with bug repellent, Tara complaining as always. I’ve stopped trying to explain to her about mosquito bites because she doesn’t understand what they are although she does scratch at them.
Our walk was uneventful, and so was breakfast. As always I fed the dogs first, then got to work making our breakfast, this morning turkey breakfast sausage and scrambled eggs. I put on our morning music, usually in recent days boogie-woogie, which Tara likes very much these days, but this morning Haydn Piano Sonatas. While I was cooking a friend called. We talked while I was cooking.
After breakfast we did the dishes. This includes Tara’s only remaining household chore, wiping the dishes and putting them away. Until about six months ago she did very well at this, remembering where to put a high proportion of what she wiped. These days, though, the proportion is down under 50% so I keep having to interrupt myself to show her where things go, and, once, to remind her to wipe a dish instead of putting it away still wet.
When we got near the end of the job, I washed and handed her a pancake flipper I had used in making the sausage and eggs. I showed her where it went into the lazy susan, but she couldn’t get it in because she was holding it with the handle up. I showed her it had to be put in handle down, and she said, “Shut up,” sounding very angry. I must have been more keyed up than I realized because I had a surge of anger and yelled at her. I’ve been warned by a couple of psychologists that this anger is inevitable in dealing with dementia patients, who are angry themselves much of the time. But I was sorry.
We had almost an hour left before Tara’s Friday caregiver Susan showed up to take her out on her day’s excursions. Susan takes her driving, for lunch, and to the movies most Fridays. I get time off to handle what’s left of my business, to speak with friends (lunch today), and to write things like this.
August 7th, 2012 at 4:42 pm
dear leslie,
thank you for your intimate portrait of your and tara’s life together. you are helping me by demystifying the process of dementia.
my heart goes out to you both and my admiration is great.
love, prema
August 7th, 2012 at 5:53 pm
Oh, Daddy, I don’t even know what to say. Shouldn’t have read this at work…
I love you, and my heart goes out to you as well.
Love,
Sabrina
September 11th, 2012 at 9:55 pm
Hello, Leslie. Patience shared your blog with me this evening. Your life with Tara is very similar to what it is like to care for my sister, Lucy. She is also a 24/7 kind of gal, but she has been this way all of her life. We have often wondered just how much she understands that she is not like everyone else—we know it is an element in her but how significant??? I think that we are all humbled by the plight of our loved ones who are so altered. Your loving care for Tara is a blessing for her. I hope and pray that you will try to take special care of yourself as this is important for you both. It is very good that you have some outside help.
My best,
Hannah
February 17th, 2013 at 3:08 pm
Hi, Leslie
This is an eye-opener–to see how you work with her so closely, helping her retain the bit of indepedence she still has. God bless you for your kindness to her! And don’t feel bad about getting angry–it happens!
I’m on my way this week-end to visit a siter-in-law who has dementia, an this is a real help.
Love to you–
Pat
February 17th, 2013 at 3:10 pm
Hi, Leslie
This is an eye-opener–to see how you work with her so closely, helping her retain the bit of independence she still has. God bless you for your kindness to her! And don’t feel bad about getting angry–it happens!
I’m on my way this week-end to visit a sister-in-law who has dementia, and this is a real help.
Love to you–
Pat