Mom's Checklist

Mom is changing so fast.
She is changing physically, losing weight, not seeing well with her glasses. She seems to be getting smaller each day. And of course the Alzheimer's is making her change.
The so-called experts of Alzheimer's have broken down the disease into five stages. Mom is fast approaching the last stage.
She is wandering more, getting restless. Sometimes her feet shake and she kind of stomps them. She can barely handle drying the dishes and can't put them away most of the time. The other night, when her caregiver was here, Mom began crying because she couldn't remember where the dishes went. She can't put silverware back in the drawer. I can't figure out why because that should be one of the simplest tasks. Just put the forks where the other forks are, the knives where the other knives are, etc., right? But she can't do that, and forks are mixed with the spoons and knives are with the forks ... It's always an adventure to pull out the silverware drawer and see where things are.
As these changes occur, it's like there's a checklist going off in the back of my mind. Wandering, check. Restlessness, check. Crying, check. Not being able to communicate, check. And the checklist goes on.
As I go through the checklist, it makes me sad and mad at the same time. I can't do a damned thing about it. And I hate what this is doing to this strong, independent woman. And I know the end is coming.
Alzheimer's takes all logic away. Things that are very logical to me, such as putting a shirt over your head to get it on, are not to Mom. She tries to put underwear over her head. Even with tags on the back of her clothes, she can't figure out which is the front and which is the back. She can't figure out where the garbage goes.
So as these changes occur, the checklist keeps getting longer. I hope some day very soon, I can stop checking things off and that my real Mom will find peace and happiness.

Making the list

God is so good to me.
Since coming home from my college reunion in mid-July, it seems to me like this Mom I'm taking care of is slipping away day after day, not only mentally but physically.
She is losing weight. Her body seems to be drawing itself inward. It's hard to describe, it might be the osteoporosis, but not only is Mom hunching over, which is typical osteoporosis, it seems like her shoulders are shrugging forward. Her appetite is not the same - she's not eating her usual oatmeal like she used to. I've added bananas, and cinnamon and sugar, to change the flavor somewhat, but she still is not eating it. She's drinking her milk every morning and eating just one piece of toast instead of her usual two pieces. And supper is getting to be a real challenge. Unless it's plain meat and potatoes, or a hamburger with bacon and cheese on it, she absolutely will not eat. I am watching her carefully as she eats, because sometimes I think it's hard for her to swallow. More and more often, she forgets how to take her pills.
Mentally, she is barely able to communicate at all. She cannot describe things, she can't tell how she feels and if she hurts somewhere, it's a real guessing game about exactly where she's hurting or if she really is. She is getting more stubborn and argues with me more often. She has a thing about wearing panties now and I really have to watch her to make sure she's got some on, because sometimes after going to the bathroom, she takes them off and just puts her jeans or pajamas back on.
She doesn't know the next door neighbor any more and I'm still not sure she knows me. She has begun wanting to go outside, especially in the afternoons, and imagines there are children outside she needs to take care of or someone down the street she must see or a store she must go to.
Even though I've lost my Mom a while ago, this physical Mom is fading fast and I'm just getting the feeling that I won't have her around too much longer. Now, in God's time, that might be a year or two, or even longer than that, but I really feel like He is preparing me for when Mom leaves me for good.
One of those preparations is making a list.
I am a list-making machine. I make lists for grocery shopping, I make lists when I go on errands, I make lists of daily chores, I make lists for any trips I take. Now I must make another list.
When something happens to Mom (I used to say "if" something happens to Mom), I'll have to make phone calls, hopefully from here at home. My sincere prayer is that I will walk in Mom's bedroom one morning and she will be gone. And it occurred to me last night that I should start making a list of people I need to call when something happens to Mom. I know that this is God working in my life. When something does happen, I know I will not have the power to think, let alone contact people, but with my list, I won't have to think, I can just go down the list of names.
So today, I am beginning my list, trying to be prepared for when I won't have Mom any longer. It's not going to be an easy list to make, but it's a necessary one.

Mom didn't know me

I finally got to take a real vacation, but after five days of not being with Mom, when I got home, Mom didn't know me.
The main event of my vacation was my college reunion and it was wonderful. Renewing friendships, talking about our pasts, planning for the future, promising to keep in touch was a part of the event. Fort Wright College is still as beautiful as I remember and the dorm, former officers' quarters when it actually was a fort, where we held the reunion was very well maintained. Floods of memories came rushing back. Even the priest, Father Sev, was there with us, delighting us with his laugh, his wise words during Sunday Mass, and the ever-present smell of his pipe tobacco. Mass was held just outside the dorm Sunday morning. As we listened to Father, birds flew by and chirped, chipmunks and squirrels played among the trees. It was perfect and I treasured every word. It touched my heart so that I cried.
So after a weekend of college reunion, I dropped a buddy off at the Spokane airport and drove south to Colfax. The day was beautiful, not a cloud in the sky, but I soon had to turn on the air conditioning. When I arrived in Colfax, it was 95 degrees. I was able to check into my motel room, and I freshened up a bit before going to a high school classmate's house where we had a mini-reunion. Lynn Zaring Knott, Nancy Hull Carroll, Elaine Morris McClintock and I gathered at Elaine's house and ate and laughed and visited for more than two hours. It was so good to see them all. Then I went to a dear friend's house, Debi Kennedy Anderson, and stayed there for more than two hours talking the whole time, and then we met more friends, Dan and Susan Hopkins, their daughter, Toni Jo, her fiance David, Dan's dad, Homer and his friend Lorraine, for supper. What a wonderful day. I feel so blessed to have all these people in my life.
On Monday morning, I went to Debi's house for breakfast and then headed west. I left Colfax about 10 a.m. and arrived home about 6 p.m. It was a pleasant, but long journey home. As I was getting things out of the car, Martha and Mom were standing on the porch with the dogs. I saw Mom talking to Martha, but I couldn't hear what she said. When I started in the house, Martha whispered to me that Mom didn't know me. That just about broke my heart. Mom was quiet during supper and continued to be quiet after Martha left. I tried to act as normal as possible, but it was very difficult.
I knew this day was coming, I just didn't know when. And when it did come, it landed on my heart like a ton of bricks.
How I hate this damned disease.
I put off writing about this because it still is very painful. I still don't know if Mom really knows who I am. I guess I shouldn't have been gone that long. It's been five days since I've been home, each day I've been trying to act as normal as possible. I feel like Mom has been trying to act normal, or at least her normal, too. That's what I think it is, an act. I honestly feel like she doesn't know me and maybe she never will.
I know I lost my Mom a long time ago and this woman I live with now is such a stranger. Although I still call her "Mom," she really isn't. She is a stranger in my Mom's body.
God is so good to me, though. I know He guides me each moment and if I listen to His Whispers, I will get through this. My continued prayer is that the Good Lord cradle Mom in His loving arms and takes her Home soon. Lord, hear my prayer.

Finally getting an income

It's still sinking in.
On Thursday, I got a call that Mom is officially accepted into the state program so that I can begin getting paid as her caregiver. I will actually have an income, something I haven't had since January 2010. I still can't believe it.
When I talked to the social worker who shared the news with me, I couldn't stop crying. I am so thankful. All I can say is, "Praise the Lord!" And I will continually praise His Holy Name.
I can't quite comprehend what this means because I haven't had money for so long. Can I get groceries without counting every penny? Yes! Can I get Mom some new towels? Yes! Can I afford to buy Mom a new blouse and some new shoes? Yes! Can I take Mom out to lunch or an early dinner without it being a burger and fries? Yes! And can we have dessert afterwards? Yes! I can now afford to do so many things, like I said, it's still sinking in.
The stress of not having an income is almost gone from my mind and body. Thank You, Lord.
I will get paid for 84 hours a month at a little more than $10 an hour. Plus I am allowed 60 miles a month to also get paid for. I must complete some classes in the next four months that the state pays for and this program also allows another caregiver to still come and give Mom a shower and wash her hair.
I cannot be more thankful. And simply saying thank you to my God doesn't seem enough. He has blessed me so much. I know I must live my life to please Him.
I initially turned in the paperwork to the state in late March I think, so it has taken this long for the state to approve us. When they first contacted me, they said it might take until spring of next year to get us into the program, so I really wasn't thinking we would be accepted much before then.
But I wasn't really worried. I have been so careful with our money, or at least as careful as I can be. I just knew in my heart that we would be OK. I knew that God is caring for us. And He is.
I love my God. Praise His Holy Name! Oh, but don't stop praying for us. We still need all the prayers we can get!

Burning Out

My counselor believes that I am close to being burned out. I think I'm closer than she knows.
Caring for Mom is so emotionally draining that it's wearing me out physically as well. Thank God I had a break the beginning of June, even if it was just one night away. The trip to Colfax was certainly not a vacation for me and when we returned, I was so worn out I could barely function. It's not that I didn't enjoy being with family and friends (OK, not the family part so much), it was the whole thing of being with Mom and having to do every little thing for her, and her not even really knowing where we were or what we were doing.
Now that the weather is nice, going outside helps, but I can't stay outside very long because I never know what Mom is doing. And it's difficult for me to go outside in the morning because I never know when Mom is getting up.
I am now looking forward to a real vacation when I go to Spokane in a couple of weeks to attend my college reunion. I will be gone five wonderful days and I won't have to pack for anyone else and I won't have to worry if anyone else is having a good time. I know I will. It's a much needed break.
Martha is going to stay with Mom and I think she is in for a really big awakening. She's getting little bits and pieces of how bad Mom really is when Martha visits. The last time Martha was here, Mom asked her a couple of times about her children. Martha kept trying to dodge Mom with talking about her students, but Mom insisted that Martha had her own children and she wanted to know how they were doing. Martha still thinks that Mom has "visions," even though I've tried to explain to her that Mom is hallucinating, now even more as she declines. But I think that's Martha's way of dealing with Mom's symptoms.
My counselor thinks it would be a good idea for me to have an overnight break at least once a month, if not more than that. When I return from Spokane, I'll talk to Martha about it. I hope she goes along with the idea, because I really need it.
I woke up one recent morning and thought, "I really don't want to do this any more." I want to care for Mom, but I'm just getting so doggone tired, and emotionally drained.
So I ask for your prayers for strength and may my God give me strength. Amen.

Good and Sad Memorial Day Trip

Mom and I used to share everything. One of the best things we shared was our annual trip to Colfax, Washington, more than 350 miles east of Longview, where I grew up on the family farm. We both got to go back home.
For weeks before our trip, we'd talk about what we'd like to see and who we'd like to see and who we'd like to avoid. A few days before we left, we would start fishing out our Eastern Washington clothes, anticipating warm, sunny weather. The night before our departure, neither one of us could sleep because of the excitement we felt. Both of us would awaken at dawn and be on the road, taking in the scenery and talking the whole way.
All of this has changed and it's really hit me hard.
When I tried to talk with Mom about the trip this year, she became upset and at one point actually cried. For a while, I didn't know if she should even go, but I was determined, because this might be the last time she's able to go.
Mom was always so good about helping me get ready and even helping carry light things to the car. Not this year. She didn't even offer to help. I don't think she knew what was going on, why I was packing her clothes and why we were leaving. She kept asking if someone was staying with Gigi and I kept reassuring her that Gigi was going with us. The only thing she did as I packed the car and suitcases was hold on tight to Gigi.
Once we were on the road, she didn't talk at all, except to say if she was hot or cold. She just looked out the window, a blank expression on her face.
When we got to Colfax, I really don't think she knew where we were. When Mom stayed in a motel, she always unpacked, putting her underwear in the dresser and hanging up her clothes in the closet. She didn't even offer to do that this time. She didn't like pawing through her suitcase to find a blouse, but she didn't want to hang anything up either. I don't think she recognized anyone we saw. We ran into a very dear friend at the cemetery, someone I have known my whole life, and Mom didn't know her. We spent time with a lot of friends and I don't think she knew any of them. We met someone at the little Farmington cemetery, and Mom didn't know where she was or why we were there. She just walked the dog among the tombstones and really didn't try to visit. We drove to the top if Steptoe Butte and we could see for miles, but Mom thought it was cold and told my friend who accompanied us that she didn't like it up there. Mom used to love going there.
Although I had such a good time seeing family (well, at least some family) and friends and I feel so blessed to have gotten to spend time with them, it was so hard on me to see Mom like this. When Martha asked her about the trip, now Mom barely remembers going, let alone the people we saw and places we went.
That's what makes me sad. During some moments of the trip, I think Mom had a good time. She will not remember any of it, but in those moments, she liked what she was doing. I must keep reminding myself of that, that right now, Mom lives in the moment.
Still makes me sad though. In the past, on the way back from Colfax, we would talk about everything we did and everyone we saw. We would share our feelings about being away from home, how good the farms look where we used to live and how much we miss them. I am not able to do that now. All that sharing is gone.
It makes me realize how much I'm losing as Mom leaves me. And that she's leaving me little by little.
When I got home, I saw where a friend's Mom had passed away, so I'm planning another trip, this time to Tillamook, for another memorial service. I just feel like God is preparing me for when Mom has to leave me.
God is so good to me and I try to remember to thank Him every day for all the blessings He's giving me.

Memorial Day Tradition

Every year, Mom and I travel to Eastern Washington, specifically Colfax, to put flowers on the family graves and visit with family and friends. It's a time I have always enjoyed being with Mom and we have shared some very special memories during our travels. I always look forward to going there because it's like going back home.
The moment we cross the Cascades, we feel better. I can't quite explain it, but the air is different, the humidity goes down, the traffic is lighter, there's more pickups on the roads with rifles mounted on the back windows and big ol' dogs riding along, tongues hanging out and tails a-waggin'. It's familiar territory for me. My heart, no matter where my body is located, will always be in the Palouse.
Besides, it's a chance to get the heck out of Dodge and see some new country.
Mom feels, or rather felt, the same way. My "old" Mom looked forward to the trips as much as I did and spent weeks getting ready - deciding what clothes to wear, what shoes to take, making sure she had all her necessities, etc. Even last year, after Mom was diagnosed with Alzheimer's, Mom knew that we were going to Colfax, and even though she believed that the road to White Pass was new, or somehow different, when we crossed the pass, she knew every town, every road and knew she was on home ground.
But not this year.
She can't quite comprehend that we're going on our annual trip. She's gotten her suitcase out several times and asks when we're leaving. And she seems upset by the trip, not really looking forward to it. I've tried to share my enthusiasm with her, but she get stressed to the point that I'm not saying anything to her now about it.
Of course Martha decided she just can't go this year even when I asked her for help months ago. She wasn't going to be much, if any, help anyway, because she demanded her own room and also demanded that we had to get back early because of her obligations as a teacher.
To get rid of some of my own stress, I decided to take two days going to Colfax and two days coming back. Not only will it be less stressful for Mom, but it will be less stressful for me - trying to get Mom up and getting her ready, driving more than 350 miles with Mom and Gigi, not to mention getting myself ready, is just too much. Taking two days, we don't have to leave here until noon or after, we don't have to check out of the motels until 11 a.m., and no long days spent driving. It'll be much better.
The most difficult thing so far is not being able to share my enthusiasm for the trip with Mom. I can't ask her what she'd like to do, such as seeing the grizzly bears at WSU or going to the hummingbird farm near Dayton or getting ice cream and some Cougar Gold cheese from Ferdinand's or going to Eddy's for Chinese or to the Top Notch for a hamburger. We would always talk about what we would like to do during our time in Colfax and share our excitement. Since I can't do that, it's like I've lost yet another part of my Mom. I know I'm losing her, but this is just another painful part I've lost to this awful disease.
I hope, once we get to Colfax, that Mom will be okay, but I don't know that for sure.
And I am thinking this might be the last time Mom will be able to go, not only mentally, but physically able.
Please pray for us to not only have a safe trip, but have a trip filled with wonderful memories.