Busy hands

One of the things I am finding is that Mom is at a stage in her Alzheimers where she needs to be kept busy. She isn't able to sit still and simply watch tv or just sit and chat. Her hands have to constantly be engaged in something. Sometimes I can get her to cast on a few stitches and sit and knit with me. It rarely goes very far and she will take it all out if she finds a mistake, but she enjoys it in the moment and that is what is important. She also loves reading mail. We give her the mail that isn't important (junk mail, promo ads, the occasional  card or letter from friends). She will read it over and over again. Sometimes she will sit with a pen and underline various words that sound important to her. It's rather interesting the words she picks out. I've thought about how Mom might really be a spy and these random underlined words could be a clue to some other spy. (Maybe I'll write a book based on that someday.) We also have to be careful when she finds cards to fill out so she doesn't inadvertently mail them and we end up with a subscription for Consumer Reports Health or she sign herself up for a clinical trial for male impotency. 

One of the things I can do that keep her busy for hours at a time are buttons. And Mom has tons of buttons. I have found no fewer than four containers filled with buttons in her attic (which was created to give her a sewing/quilting/knitting area). I hauled a box of buttons down and found a pair of pants that were missing buttons and she was busy for two hours sorting and re-sorting the buttons. She was happy, I got things done, and her pants still don't have buttons on them, so we are good for at least another day of button sorting. 

I try to keep up with the dishes as she doesn't do them correctly (or healthily). She will "wash" the dishes in cold water and no soap and put them in the dish drain. I wait for her to clear out of the kitchen and consider them rinsed as I stack them in the dishwasher to run after she's gone to bed. I stopped trying to get her to leave them by telling her I would get to them later as I realize that she needs to have the activity. She needs to move and do things. Some days it is frustrating to try to get the dishes done and the kitchen clean so I can go sit for a few minutes. Those are the times I have to simply step back, let her putter (safely) in the kitchen and wait for her attention to go elsewhere. Then I can go back into the kitchen and do the project I had started. 

I've been trying to come up with other things to keep her busy. I had thought about having her sort jelly beans for me, but she ate all the green ones (the best ones) so that didn't pan out quite like I had hoped it would. I'm going to watch her over the next few days and see what else she comes up with that could lead to keeping her restless hands going. If you have found something that works for you, I'd love if you would share it. 

Michelle

The Lighter Side of Alzheimers - Chili Surprise!

Sometimes you just have to approach dementia with humor. If you don't it will wear you down even quicker. In Creating Moments of Joy by Jolene Brickley we are taught how important it is to make the Alzheimers patient's life simpler and to find happiness where we can for them. I think that is doubly true for the caregiver as well. It is tiring having to rewash dishes after Mom has "washed them" (with cold water and no soap) and to pick up the crumbs of granola bar that she set out for the cat (who really has no interest in granola bars) and to pick up half empty cans of Dr. Pepper because she forgot that she'd already opened one and so gets another (and another). So sometimes you have to simply reflect on what happened during your day and find that joy or humor for yourself amongst all the chaos.

We've recently had to take the knobs off the stove and hide them. Mom would try to cook and simply made burnt food. We also have a fear she might turn the gas burners on and leave them. So the knobs have been hidden and I sometimes carry one around in my sweater pocket if I know I'm going to be doing a lot of cooking. She sometimes notices when she is "cleaning" the stove (with a tissue) and ponders where "the things" went. (Our answer is always, "I'm not sure. We'll have to ask (random family member) if they've seen them.") It's frightening thinking about how easily she could burn the house down if we left the knobs in place. It's for all our safety and fortunately, she doesn't get too distressed about it.

Once a week our neighbor brings us a meal. She's on a soup kick right now and it is nice knowing there will be one less meal a week that I have to cook. Yesterday it was chili. Good hearty meaty and vegetable filled chili. Right up Dad's alley. (I'm vegetarian, so I usually fix a PB&J on neighbor dinner night or eat any meatless leftovers.) We'd already eaten for the evening so she left it on the kitchen counter since it was still hot. Mom got up to get a Dr. Pepper and was gone a bit longer than I was comfortable with, so I went to the kitchen to see what she was up to. She'd washed a few dishes and I noticed the chili was in a pot on the stove and the container was "washed" and in the drying rack. I led Mom back to the living room and went back to the kitchen to clean up after her adventure in "cooking".

As I'm pouring the chili back into the (now correctly rewashed) container I noticed that there were all kinds of meat shapes in the chili. And peas and carrots. Interesting touch for chili, but OK. I put the chili in the refrigerator and opened the garbage drawer to throw something away when I realized there was an empty can of dog food in the garbage. I'd already fed the dog for the evening and that can was in the dishwasher. Yep. You guessed it. Mom had supplemented the chili with a can of dog food. Beefy stew with real peas and carrots. Unfortunately it doesn't look like anyone will be eating Chili Surprise this week.

I could have gotten angry. I could have yelled and screamed and even cried, but the reality is that none of those things would do any good. Mom wouldn't learn and would have only gotten upset. Expressing that frustration would make me and those around me have negative emotions that we don't need to carry around with us. So instead, I decided to find the humor in the situation and be thankful that I noticed what had happened and saved me having to feed Chili Surprise to anyone, including the dog. I noticed that the dog's dish was missing and went on a hunt for it. I found it inside the toaster oven (which is on a shelf and not plugged in) set to 450° filled with a serving of Chili Surprise. The dog has no idea how lucky she is to not have eaten that meal. So find the moments of joy in life, even if it is a ruined pan of chili.

And the dog and cat food have now been moved somewhere new.

Michelle

Hello!

First let's all agree, Alzheimers sucks. It sucks the memories out of our loved ones. It sucks the energy out of those of us who have to live with them. It sucks the joy out of friends and family. Mostly, though, it just plain sucks. 

I'm Michelle. (Hello Michelle) And my mother has Alzheimers. She's probably had it for years, maybe even a decade. She's almost 73. It's hard to say when the Alzheimers started because Mom never was keen on dates and directions. She forgot people's birthdays, appointments, medical history dates, and sometimes how old she was. She got lost easily if she turned down the wrong way and would spend quite some time driving around looking for something familiar to reorientate herself. She'd been that way for as long as I can remember. It was a joke between my brother and me. "Mom's lost again." Sometimes it hurt when she forgot it was my birthday. I mean, didn't she give birth to me? How do you forget something so special? And so there was a long period of time where we look back and wonder if it was just Mom being Mom or Mom on Alzheimers? And then we realized it really was Mom on Alzheimers. 

Mom was smart. She was artistic. She was talented. She was energetic. She raised the two of us while putting herself through college.  She made a stained glass window for her church. She threw pottery. She spun wool into yarn and taught people how to knit. She made tapestries and artistic weaving pieces. She quilted and sewed. She made ecclesiastical vestments. She and I went to university together and while I was off giving her grandchildren she went to seminary and started a new career as an Episcopal priest. She was well-read, studious, articulate, strong, brave, and loving. So to see her forget people and places and things that were part of her very being is sad. And it sucks. 

The secondary (although right now it is the primary) part of this is that my dad is in his last weeks of life. He has pulmonary fibrosis. He's mostly chair bound and rarely gets up. He has good days and bad days and as the days go by the bad days outnumber the good. So my time is precariously balanced between caring for Dad and keeping up with Mom. I left my job and my business (I'm a bookseller "by day" and an indie yarn dyer "by night") and moved a thousand miles from home to live with my parents while my father sees his last days in this world. I hate doing it. Not because I don't want to be here, but because I hate that I have to be here. That I have to see my parents who were so accomplished and respected being so helpless. That someone has to be here. That my brother and I have put our lives on a different path than we had thought we would. That we have not one but two parents who need care. 

The point of this blog is to give me a place to rant, to virtually scream, to cry where my parents can't see, and, hopefully, to help someone else who may be dealing with the same struggle that I am. If you see something that is familiar to you, feel free to comment. Have an idea that may help? I welcome your advice. Know someone who is going through this as well? Share it with them. This may be my blog, but I'm hoping to find others who are traveling this path so that we don't feel so alone as we go.

Michelle