It Just Keeps Getting Better

Just when I am beginning to deal with my grief over Mom being in a nursing home, I got hit over the head again.
Friday morning during my weekly counseling session, I received a call from a man with Adult Protective Services. He said someone had reported that I was over medicating Mom so she would sleep all the time and that I was giving her pain medication and I was abusing her. He cannot reveal the name of my accuser and he said he had already interviewed Mom down in Battle Ground.
I was so shocked I could barely understand why anyone would do this. The man asked me for a copy of the Power of Attorney and he wanted to see all the prescription medications Mom had while she was in my care.
Since I took the caregiver classes, I am well aware that all caregivers are obligated to report any signs of abuse. If a caregiver doesn't report abuse, the caregiver can be fined or jailed.
But this hit me like a ton of bricks. Who would do such a thing to me, especially if they had any inkling of what I am going through with Mom in that nursing home. I feel guilty enough as it is because I think I could have done more, should have done more. But for someone to actually believe that I was abusing my Mom is just unbelievably hurtful.
Immediately after my counseling session, I gathered up what the man had requested and drove to the Kelso DHSH office. He was very nice and talked to me very respectfully. He said he was closing the case because the charges were bogus. He said the file will be put away and after two years will be destroyed. But he also said the police also were contacted and I may get a call from them. He said if the police calls, just to have them call him and will tell them what happened.
Thank God my counselor was here with me and she stayed until I calmed down. She can't figure it out either. I called our caregiver who had worked with Mom and asked her if she had reported me and she denied it and could not think of who would do this to me.
I was in a kind of daze all day. I was just so shocked.
Some people say the person who reported me was only thinking of Mom. I disagree. I think it was a vindictive act against me and the person wanted to cause me hurt in some way.
In the midst of all this, I know the truth and the truth is that I cared for Mom for two years the best way I knew how. I can take comfort in knowing that. And if someone doesn't believe it, I've got plenty of support.
And best of all, God knows the truth. He's the only one I must worry about because He's the only One I must answer to.

Mom's Legacy

Christmas is my favorite time of year. The tree, lights, music, movies, all fill my heart with such joy and thankfulness, that my cup usually runs over.
But not this year. This year, my heart is filled with grief because I lost my Mom again.
Three weeks ago today, I watched her being wheeled into an ambulance in the pouring rain, clutching her bunny, wrapped in blankets against the wet and cold. I knew she would never return home and grief clutched my heart.
I knew I couldn't take care of her, keep her safe, watch her day and night. My head could wrap around all this, but my heart just can't.
I feel her presence everywhere in this house. It's like she left a part of herself here. Today, I finally went into her bedroom. Before today, I just walked in to get something and walked right back out. But today, I got her coats off the coat rack and hung them up in her closet. Then I took her quilt off her bed, then her blankets and finally her sheets and I washed the sheets.
I found a lot of old photo albums, too, and went through a couple until I just couldn't any longer. Memories of being raised on the farm near Colfax, birthday parties with Jeff and Donny and Marla and Trudy and Lori, as well as Christmas dinners with the family china, silverware, Fostoria glassware, flooded my whole soul and made my missing Mom even worse to the point where I just had to stop.
This is weird because Mom is still in Battle Ground at the Alzheimer's place - I just can't say nursing home. Her physical body is there, but my real Mom is gone. I haven't gone down to see her all week. I've made every excuse I can think of not to make that drive. Not feeling well, frosty slick roads, fog, anything I could think of not to go. I am ashamed of myself for not going, but I hate to see Mom like this.
My head tells me that Mom doesn't know any better, that she doesn't know where she is, that she doesn't know if I visit or not, but my heart knows. I know where she is, that she isn't eating well, that they aren't keeping her as clean as I used to, that they don't stop in the afternoon to give her milk and cookies, her favorite snack. And how I've come to hate this.
And I just can't figure out why God is doing this. Why is He letting Mom be in this awful place? Why isn't He answering my prayer of taking her Home? When I see Him, we are having a very long conversation.
Later on tonight, I will make Mom's bed with clean, crisp sheets, letting the freshness flow through her bedroom, maybe washing part of Mom's scent away.
I feel like I'm on a ship lost at sea, with no direction, no purpose in life. My purpose for so long has been to give Mom everything that she has given me.
A friend reminded me of something the other day. I am Mom's legacy. I am her daughter, her flesh and blood, and I learned everything I know from her. It's a big responsibility to be someone's legacy and to be my Mom's legacy - wow. It made me realize I have a lot to do. I have to carry on all the things she taught me. And although I can't carry them on to any Ousley children, I can share what I've learned with others and I really look forward to that. I look forward to saying, "My Mom taught me how to do that."
Maybe that's what God is waiting for. Maybe He's waiting for me to realize that I have this legacy, this responsibility to share Mom's legacy.
So perhaps instead of grieving, I will begin to share Mom's legacy in any way I can. I will rejoice in all the things Mom has given me over the years.
My head can say that, now I have to convince my heart.

Major changes

I've been putting off writing this because it's very painful and very emotional.
After almost two years of caring for Mom, my sister and I made the decision to put Mom in an Alzheimer's facility. After nearly a week of calling places locally and not-so-local, working with case managers, social workers, facility admissions staff, nurses and other caregivers, we found a facility a little more than 40 miles away from my house, in Battle Ground, Wash. She went to that place on Saturday, Nov. 19. Both Martha and I have taken trips to see her as much as we can. Mom is settling in nicely and seems satisfied as long as she can eat and stay warm and sleep. I really don't think she knows where she is or that she cares where she is.
The decision to place her was such a difficult one, no one can imagine unless you've been through it. At first I felt like such a failure, but with God's help, I am finding that I'm not such a failure after all. I promised Mom that she could stay home, but this damned disease that's name is Alzheimer's, prevented that. How I loathe this disease.
The Battle Ground facility is an okay place - clean, friendly staff - but it makes me so sad when I go there. I am sad for Mom to be reduced to a small little bed shared in a room smaller than her bedroom at home, with a three-drawer dresser, half a closet, and two shelves. There is no making this tiny space "like home." I also get very sad watching the other patients, men with wet pants; another man who had packed all his belongings and told the nurse he had to leave because he bought a vessel and had a lot of work to do on it; Mom's roommate who told the nurse she did not want to go to bed, but fell asleep the minute her head hit the pillow.
Thanksgiving Day was very difficult. Instead of following our family traditions of cooking the day before and practically all day on Thanksgiving, I ate a quiet breakfast as I watched the Macy's parade, then picked up Martha and went to see Mom. We visited for a while, then went to some friends for dinner. We are so blessed to have them in our lives. They made us feel so special and so loved. On the way home, we saw Christmas lights and I cried because I used to take Mom all over Longview and Kelso and even Woodland to see the lights. She was like a small child, oohing and ahhing as we drove by homes and the small lake and parks adorned with Christmas displays. Not this year.
And I'm sad for losing Mom again. I realized a couple of days ago that I'll never be able to cook her breakfast, make her a sandwich or fix her supper. But I can still bake her cookies and make her cinnamon rolls.
How many more times am I to lose Mom? I lost her once to this disease, watching Mom as little by little she slipped away from me. Now, I've lost her again to this other place. And I know I must lose her one more time when her body gives up its fight to stay alive.
And I must decide what to do with my own life now. I've devoted my life to my Mom for so long, even before I started caring for her, that I'm not sure what I'll do. I'm trying to listen to God to hear what He wants me to do. I know for sure He wants me to stay in the Longview area as long as Mom is here. I've committed to doing the Walk to End Alzheimer's next September for one thing. And I want to fight this disease as much as I can. I don't want anyone else to go through what I've been through with Mom.
Today I drove the more than 80-mile round trip to see Mom. She jabbered to me about insignificant things and then all of a sudden she said, "Sally, you look tired." There was a brief moment of clarity and then it was gone. As I look into her eyes I search for some sort of recognition, some sort of my old Mom there, but there is none. There are just these empty blue eyes looking at me, not registering anything, with no Irish sparkle left, just nothing.
I found a photo of Mom as we celebrated her 80th birthday. She's looking right into the camera, her bright blue eyes full of mischief, waiting for any opportunity to do something extraordinary, if not just the simplest thing. How I miss my Mom in that photo.
But I know she's safe, warm and God is watching over her. Praise the Lord.

As the Seasons Change, Mom is Changing Too

So many things have been happening since I last wrote.
Mom's moods have been swinging like a pendulum, from calm to outrage. She began fighting me about going to bed - hitting me, scratching me, kicking me, which left us both with bruises. I never knew when she would react this way. Each day brought a new challenge until finally I told my sister, Martha, that I didn't know how much longer I could continue. I thought perhaps this might be the time to begin looking at putting Mom in a home. But I'm stubborn. When Mom was well, we had a long talk about what would happen as she grew older and I promised her she would stay at home and I am determined to make that happen.
One day, Martha stopped in on one of her rare visits, and I was coming out of Mom's bedroom just bawling. I had spent the last hour trying to get some disposable panties on her and she absolutely refused. She was walking around without anything on her bottom. As we fought, I discovered that she left some dirty disposable panties in the toilet, so I got to go fishing - again. By the time Martha arrived, I had reached the end of my rope. I was shaking from all the fighting, so Martha just took over and got Mom's panties on her. I went outside to read for a while and Martha stayed for a while. But it was clear to me that I needed some time off.
Mom began pacing around the house, back and forth between her bedroom and the living room and kitchen, pacing in her bedroom around and around her bed. When she sat down, she couldn't keep still, always moving her hands, or feet, or something close to her. She started chasing the dog around the house, to the point that poor Gigi hid under a table or chair so Mom couldn't get to her. Mom would sleep for days, then be up all night, sometimes keeping me up until 2 a.m. or later.
Mom had a doctor's appointment on Oct. 4, and I got her up and dressed, making it clear where we were going and when we were out on the front porch, she decided she wasn't going. I got her down the ramp and opened the car door, but she was having none of it. She looked toward the sidewalk and yelled, "Help me, help me!" I called Martha who was going to meet us at the doctor's office and she came over. Mom went immediately over to Martha, but Martha even had a difficult time getting Mom in her car. When we arrived at the doctor's office, the staff recognized the change immediately. Mom didn't greet any of them and I don't think she recognized the doctor. When they weighed Mom, she had gone from 126 pounds in July to 112 pounds. I knew Mom had lost weight, but I was shocked at how much. We talked about Mom's restlessness and the doctor prescribed Xanax, hoping it would calm her down. It did the exact opposite and I learned that with Alzheimer's patients, sometimes it affects them the exact opposite of what it's supposed to do. Sure wish the doctor would have said something.
I still wasn't getting a good night's sleep, because not only was Mom staying up late, she started wandering around the house at night. And when she was up, I had to watch her every moment because she would try to go out the front door. I felt like I was watching a child, not my Mom.
I talked to our caregiver and she agreed to work some extra hours so I could get out of the house. Now she comes Friday and Sunday afternoons so I can leave and Martha and I paid her to come. Those few extra hours helped, but I still felt like I needed a break - days, not hours.
Martha and I talked about checking into the the local Hospice program and I am so glad we did. I know, too, that the Good Lord is directing us. I met with a social worker and nurse from Hospice and things began moving quickly. I qualified for a five-day respite period, where Mom could go into the Hospice Care Center and I would get some time to myself. Mom left last Monday by ambulance in a wheelchair and will come back home on Saturday afternoon.
I know she is in good hands and is well taken care of. They are trying some medication that hopefully will help with her restlessness and with sleeping.
It was so difficult to see her being wheeled into that ambulance, with a robe wrapped around her legs and Mom holding her favorite bunny. My heart ached.
Mom will have visits from her Hospice nurse twice a week and another caregiver will come twice a week to give her a shower. A Hospice social worker also will come two or three times a month.
When the Hospice nurse and I talked, she said a friend also had a mother with Alzheimer's. Her friend told her she felt she lost her mother twice, once to the disease and again when she died.
I know I lost Mom quite a while ago. And how I miss her. Right now, we'd be talking about how pretty the trees look and how we like it when the time changes back to "regular" time. I'd take her for rides so she could see all the beautiful fall colors on the hills and she would so enjoy that. Then she'd remark about not looking forward to winter. How I miss that.
And with the holidays coming, it's even more difficult to face. Mom can't make her famous cranberry jelly for Thanksgiving and can't carve the turkey for me, and can't make the pumpkin pies and whipped cream, a family tradition. Christmas was Mom's favorite time of year. She'd decorate the entire house, but the outside was left for me. We go to a local tree lot to pick out the Grand Fir and Mom always knew which one was the best. I know she won't know what the Christmas tree is for this year and won't be able to pick it out, and won't understand the Christmas decorations and dinner or gifts. Martha even remarked that she didn't know what to get Mom because she knew Mom wouldn't understand.
Oh how I miss my Mom and all the sharing we used to do.
But I have some really wonderful, fabulous memories that I will cherish. It's just the loss that I'm having a hard time with.

Changes

The summer of 2011 is fading fast and autumn is approaching. I actually had to turn on the heat yesterday and left it on all day. And it's raining. We need the rain, but the low grey clouds also are serving to match my mood.
The Ousley household is changing too. Mom, or Wilma as I call her now, is changing. Saturday she did not get out of bed at all, the second time this week. She has been sleeping a lot, most days well into the afternoon, but not getting up at all is a new thing. I talked to the caregiver about it because I was concerned about Wilma sleeping so much, that it might not be good for her, but the caregiver reassured me that if Wilma wants to sleep, at her age (91-plus), let her sleep.
I made the decision to call her Wilma because her personality is changing, not resembling my Mom in the least. And although this may sound harsh, it's a way to detach myself from her and allow my greiving to continue.
Wilma is changing in other ways too. She is more irritable. Friday was a very hard day. The caregiver got Wilma up at noon when she came and Wilma was not happy after that. I fixed her breakfast and then she was restless, she wouldn't sit still. She went outside a few times with the dog. Later, when I had dinner ready, she put on her coat and said she wanted to go home. I tried to convince her she was home, but she went out the door anyway. I followed her out and had to block her from getting off the front porch. When I finally got her in the house, I locked the screen door and she couldn't get out. She ate a little dinner and then sat in her chair and watched TV. At about 9:30 p.m., I asked if she wanted to go to bed. Again she said she wanted to go home and again I told her she was home and guided her to her bedroom. She said she wished she could kill me. As I was helping her put on her pajamas, she lost her balance and fell. It was just kind of a slow-motion topple. She landed on the soft carpet close to her bed. Thank God for the caregiving classes I took, because I didn't panic, I just followed the steps I was taught.
I asked Wilma if she was all right. I tried to lift her, but I couldn't. I scooted a rocking chair over to her so she could grab the seat and maneuver herself up. But that particular chair proved to be too high. I tried to get her on the bed, but that didn't work either. Then I remembered her small chair in her bathroom. I set it next to her and she managed to lift herself up and then slowly stand up. We got the rest of her pajamas on and she went to bed. As I was leaving her bedside, Wilma grabbed my hand and held on. She didn't say anything, just held on.
After I left her, I panicked and just started freaking out. I am surprised at how fragile and weak Wilma has become. I went over the scenario in my head a hundred times to see if I could've done anything differently. The only thing I could think of was asking if she was dizzy. Otherwise I followed all the steps exactly the way I was taught.
And the whole incident got me thinking. Does Wilma want to die? Does she think if she stays in bed long enough that she will close her eyes and go to sleep and never wake up? I know she is unhappy. And I still pray that God takes her soon. But it also made me think about living without her. My life has been pretty much devoted to Mom the last several years. What do I do when she's gone? Where will I go? What will I do?
Only my God knows and I must trust His infinite wisdom.

Getting Ready for the Inevitable

Something is going on with Mom. I don't know exactly what it is, but something is happening.
Sunday, I decided to wash Mom's sheets and blankets. It took almost all day, by the time she got up, but I got it all done and was so heartened to have everything clean for her - clean pajamas, clean sheets, clean blankets. Her bed was so clean and fresh smelling - I almost wish I had a clothesline to hang the sheets in the bright sunshine we're having now.
But when Sunday night came, Mom refused to get into bed. She came to me after we had gotten her pajamas on and said she couldn't use it. I asked her what she meant and she repeated her statement so I asked her to show me. In her bedroom, Mom stopped by her bed and pointed to it. "I can't use this," she said. I asked her why and she said "It's wet." I felt the sheets and of course they were not wet, but Mom had it stuck in her mind that since I had washed them, they were wet. She absolutely refused to get into bed, so finally, after about a half hour of arguing with her, I pulled the comforter over the sheets and blankets, got her another blanket and said she could sleep on that.
Monday was just another day, no big deal, Mom slept until about noon that day I think.
Tuesday, though, Mom wouldn't get up. I kept checking on her and finally she got up and was dressed before I knew it, about 3:30 p.m. I thought it was odd that she got up without saying anything or coming into the kitchen to see what I was up to. My answer came Tuesday evening when I was helping her get ready for bed about 10 p.m. and asked where her pajama bottoms were. Mom pointed to the bed, so I pulled back the sheets and there was poop all over her bottom sheet. I couldn't change the bed then, so I left Mom's jeans on her, put a big towel over the poop and got her into bed. After she was in bed, I discovered her pajama bottoms that were poopy too. But I didn't see poop anywhere else. I didn't know what her disposable panties looked like and I am such a wimp, I didn't want to know. I just thought Mom would be okay until I could change her bed the next day.
Today, Mom slept and slept. I checked on her once or twice an hour to make sure she was okay. She was sound asleep all day. Finally, I got her up about 5 p.m. because her caregiver was scheduled to come at 7 p.m. I took off the dirty sheets and washed them right away as I fed Mom something to eat. She's not eating well and will only eat bread, meat and potatoes. And it seems to me like she's having trouble swallowing. This evening, I gave her toast with butter and jam and a couple of glasses of milk. I had to coax her to eat all her toast. After she had showered and the caregiver left, I also had her eat a small ice cream sundae.
Mom looks so frail, moreso than I've noticed before. Her clothing is not fitting well because I think she's losing more weight. She cannot make any sentence make sense, which frustrates her IF she notices it.
I am just really getting the feeling that God is preparing her to leave us. Mom left me a long time ago, but  physically she is still here. I think God is preparing me too, for when Mom leaves. I've got the contact list all done and in a notebook. I'm going to clean out her closet so we can donate some of her clothes. I can't really explain it well, but I have this feeling, not a scary feeling, almost a peaceful one, that Mom will leave soon. Now, God's time certainly isn't my time, so when I say soon, I'm thinking in the next couple of months. God's time might be the next couple of years, but somehow I don't think so.
And I'm so happy for Mom when she does leave us. She will be with Grandma Dora and Grandpa John, she'll see all her dear friends who she misses so much and she will be free of this awful disease that took her from me. I am so blessed to have had my Mom all this time, to have had her as my best friend, to have had her as my Rock (along with God). I miss her so much.
Thank you, my God, for letting me have Mom as long as I did. And I thank you for every day that I still have her. I pray, my Father, that you cradle her in Your Loving Arms and take her Home soon. Amen.

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.

A Sad Easter

I felt so sad this Easter.
This Holy Day is one of my favorites. I love Easter Bunnies, Easter Baskets, chocolate everything and Easter dinner with family and friends. I love hiding Easter baskets and watching as someone tries to find them. And I love hunting for my own Easter basket full of surprises. None of that happened this year.
Mom couldn't remember what Easter is. She had no idea what it meant or what we should do. All she knew was that we were possibly going to Mount St. Helens for an early dinner if the weather permitted.
Martha informed us about a week before Easter that she was invited to some friends. Just when I think things might be going well between us, she again dashes all hope by being selfish and self-centered. Did it occur to her to say no, she would rather be with her family? Nope.
So on Saturday, after Mom's hair appointment, we took a trip south to Woodland, Wash., where brightly colored tulips enhanced the blue sky of a beautiful Western Washington spring day. The flowers were all the colors of the rainbow and more. After arriving home, Martha came with an Easter basket with some chocolate candy thrown in it - at least that's what it looked like. It looked as though she thought of A basket - yes, one basket for two people - at the last minute and threw it together. As she and Mom visited, I went outside and planted part of my garden. I pulled weeds and dug it up and planted peas, pumpkin, lettuce and spinach. I was sore and ached, but it was a satisfying ache.
And on Sunday, the day dawned gray and dreary. My mood matched the weather. I could've made it more festive, but I didn't and now I feel guilty for not making it so that Mom would enjoy it more. Instead, it was a quiet day. I cooked supper and we watched some TV and then we went to bed. Not the best Easter I've had.
However, the weekend forecast looks good and my hope springs eternal that we will be able to go to Mount St. Helens and sit out on the deck of the Fireside Grill and look at the mountain that blew her top almost 31 years ago.

What a Monday

I thought my Monday was going to be a pretty peaceful day. I was wrong,
Mom stayed up late the night before, so I really wasn't too worried when she slept past 11:30 a.m. I checked on her and she said she couldn't get out of bed and that she had almost fallen getting out of bed to go to the bathroom. I asked her if she wanted to go to the doctor and she said no, she'd be okay.
I didn't know what to do, so I called Jill, our caregiver. She said if she was there, she would have to call 911, and for me to hang up the phone with her and call, so I did. I asked for a silent response and one ambulance came about 10-15 minutes later. Two guys from Cowlitz 2 Fire & Rescue (because technically we live in the county), came in and took Mom's blood pressure, asked her questions, which she told them she was fine. The younger of the two said they should take her to Emergency, but he was not a paramedic, so I asked to wait for the paramedics. Four paramedics arrived a few minutes later, so now we had SIX men in Mom's bedroom -- bet that won't happen again! The head paramedic advised me to take Mom to her regular doctor, so they put Mom's socks and shoes on her, I got her robe and they helped her down the steps and into my car. I alerted the doctor's office that we were coming, I put Gigi in her crate (poor little girl didn't know what to think), changed my shirt and off we went to Castle Rock, about a half hour away. It had turned out to be a beautiful afternoon, bright, warm sunshine and high puffy white clouds. We got to the doctor's office and waited until they could fit us in. Dr. Emma examined Mom and found a very tender spot on her back on her upper right shoulder. She said that Mom's osteoporosis is causing her muscles to tighten. She said we should get some Tylenol and that Mom should get a light massage.
I had called Martha to tell her about Mom and when she got of school she called, so I had to talk to her. After Mom got her diagnosis, I called Martha again. She surprised me by suggesting she buy a baby monitor, which she said would be good when she stayed with Mom this summer. I also asked her to get the Tylenol for Mom and a package of Mom's disposable panties and she brought them to the house. She helped me put the baby monitor together and set it up. And she stayed while I went to get a hamburger. All this surprised me.
After Mom ate her "breakfast" and took the Tylenol, she got dressed and did the dishes. Then we both sat down in our chairs and fell sound asleep. I finally woke up about 10 p.m. and then woke Mom up and she got to bed about 11 p.m. I didn't get to sleep until around midnight.
In the middle of all this, Jill's boss called and told me that Jill doesn't want to come three days a week any longer, that she just wants to come on Wednesdays. I said I wouldn't accept that, so I don't know what to make of this. All I do know is that Mom needs a shower and her hair washed more than once a week.
The head paramedic guy said that we needed to get a ramp and I said we couldn't afford it, but Martha said to call a couple of people to see what they could do.
So that was my Monday. May that not happen again for a while. And thank you Lord, for carrying me through it.

Battle in the Bathroom

There is the Battle of the Bulge, Battle of Midway, Battle of Gettysburg, and in the Ousley household, there's the Battle of the Bathroom.
A few months ago, Mom was really having trouble getting organized in the bathroom. I found a cute little basket to put all the things she needs in one place, thinking I was eliminating confusion. It did for a while. But then she began using Jergens and Vaseline as toothpaste and God only knows what else on her body that she shouldn't use. One night, I snuck into her bathroom after she went to bed and removed the little basket. Her caregiver said if I eliminate all the choices, the less confusing it is for Mom. So eliminate them I did.
All she has in her bathroom now is a box of tissues, a bar of soap, her electric toothbrush (after she threw the manual one away claiming it was someone else's) and a tube of toothpaste. And she still can't get it right. Every morning and every night I must supervise brushing her teeth and washing her face. I bring in the appropriate face creams and powders and then take them back to their "hidden" spot. Once again I feel like a Mother with a small child.
On a recent trip to get her annual physical, Mom's primary doctor said she believes Mom has just declined about 10 percent from a year ago. I was shocked. I said that I didn't mean to be disrespectful, but how could she judge that in five minutes. She doesn't see what I see every day. She maintained her position, however much I disagreed.
But when an old college buddy visited here a few days ago, she said she couldn't believe how much Mom had changed. She remembers Mom as this "tough as nails" woman who was a rock. Now, my friend said, Mom seems meek, much like a small child.
So the Battle of the Bathroom will continue, and I will continue helping my Mom, who I think is declining 10 percent almost every day, not every year.
My sister, Martha, and I still are not speaking. Martha stopped by once during her entire spring vacation to see Mom for less than an hour. She hasn't seen Mom all week this week. After talking to my counselor, I sent Martha an email this afternoon. It was very formal, very business-like, mostly requesting her help buying some things Mom needs. I just sent the email this afternoon, so I'll wait to see if she responds.
My caregiver class was so helpful. I feel more empowered in helping Mom. The more I learn about this damned disease, the better caregiver I can be.

The funeral

I attended my first funeral yesterday since Mom was diagnosed with Alzheimer's and it was much more difficult than I expected.
The funeral was for a good friend's Mom who was 95 and who also had Alzheimer's. She and I worked together for several years and talked about our Moms a lot. I call her often to bend her ear about stuff going on in my life and I hope I still can although now it won't be quite the same with her Mom gone.
I knew before I decided to go that it might be hard for me because I would keep thinking of my own Mom. I was right.
The service was at a local funeral home and was very nice. A Sheriff's Chaplain talked about how wonderful my friend's Mom was, how she smiled all the time, how she devoted her life to her children and always put herself last. A lot of what the chaplain said reminded me of my own Mom. He also read stories from the family about things they would remember most about her, which I thought was a nice touch.
The family and funeral attendees gathered at a social area in the funeral home afterwards to visit and eat. I sat with a former co-worker who I hadn't seen in a long time and some other friends. On all the tables were old photos of my friend's Mom that were displayed like in an old scrapbook and I liked that idea. My Mom doesn't want any kind of service, but people always like to eat and I thought what a nice idea that might be instead of a service. Then, of course, I felt guilty for even thinking such a thing. I certainly am not ready for my Mom to die!! No way!
But reflecting on it, I think God might be getting me ready. If something does happen to Mom ( I don't want to say when), I know God will be right with me, carrying me through.
So instead of a traditional service, perhaps we can just have an informal gathering, with lots of pictures and shared memories. I think Mom might approve.
I was so disappointed in the newspaper employees where my friend and I had worked. Out of all those people, only two came to the funeral. I get people don't like funerals, but you put your own feelings aside and go for the family.
Even though it was very difficult for me to go, I went anyway. It was so worth it because when I checked my email the last thing last night, there was a note from my friend saying how much she appreciated me being with her family yesterday. That note made it all worthwhile.
As I helped Mom get ready for bed, tears came to my eyes. I hate what this disease is doing to her and I still pray for God to cradle her in His arms and carry her Heaven.
And when He does, I'll be ready.

Is time the enemy?

Yesterday, Mom got up and came into the kitchen with no pajama pants on and I don't think any underwear on. I asked her where the rest of her pajamas were and she said she didn't know. We went into the bathroom and there they were on the edge of the tub and they went straight into the washer.
Mom seemed really out of sorts yesterday and could barely communicate at all. She didn't get up until almost noon and it was 12:30 p.m. by the time she had her breakfast. And she slept almost all day, acting like she didn't have the energy to do anything.
Today Mom came out of the bathroom with just jeans and an undershirt on, without her glasses and without washing her face or brushing her teeth. We went into the bathroom and I helped her wash her face and brush her teeth. As I put toothpaste on her toothbrush, she claimed it wasn't her toothbrush, that it was someone else's. I said no, it was hers and it was okay to use it.
God, how I hate this damned disease.
I just want to ask someone, anyone, WHERE IS MY MOM? Because this woman here living with me isn't my Mom. She may look like my Mom and her voice sounds like Mom's, but she isn't my Mom any more.
And as time marches on, Mom gets more and more strange to me every day. She has a hard time communicating at all any more. Her words come out all jumbled and don't make much sense. I am having a more difficult time trying to guess what Mom is trying to say, which frustrates both of us. When Mom gets really frustrated, she pulls a little of her hair. And she's acting more and more like a child every day. When I say something is out of place or dirty or whatever, Mom will say, "I didn't do it!" I remember saying that to Mom all the time. Talk about role reversal!
I am reading yet another book about Alzheimer's entitled "Learning to Speak Alzheimer's." I think it's giving me more tools to deal with Mom's illness than anything else and by giving me these tools, I feel more empowered, more like I'm doing something instead of not being able to do anything. It's just giving me more insight about what Mom might be feeling and experiencing. I feel like I might be able to understand what Mom is going through more.
I still feel guilty about filling out the paperwork for Canterbury Gardens. I hope I never have to go there to visit Mom.
And I still pray for God cradle her in His arms to take my Mom home soon. That is my wish and prayer.

Siblings can be a real pain in the ass - Part III

I really am trying to let this whole thing with Martha go and just let God do His work, but it is so hard.
Martha still is not speaking to me although I must admit that I am not cooperating with her.
Susie, my dearest and oldest friend from LaCrosse, came for the weekend. I was so glad to see her, but who should walk in right after she arrived on Friday afternoon, but Martha.
Now unbeknownst to Martha, Susie knew what was going on. So here's Martha acting like everything's all hunkee-doree and I refuse to play her little game. I go about my business, copying a recipe that Susie had brought me (her Mom's infamous orange rolls), visiting a little with Susie, but mainly staying out of the living room where the three of them had gathered. Finally I hear Martha saying she was leaving and as I walk out of my room and start to turn the corner, here's Martha.
She asked me if I wanted her to come stay with Mom while Susie and I went to a movie on Saturday night and I said nope, didn't need her. She said she wanted to come over on Saturday, and I said she was out of luck because we had several errands we were going to do, mainly go get Mom's hair done. In a very loud voice she announced she wouldn't come and then stormed out of the house. Oh, well.
The next morning (Saturday morning), I was just about to give Susie a call when I saw a text from her saying she was having coffee with Martha.
Well, Martha had plenty to say to Susie, all of which turned out to be a real line of BS. Martha told Susie how she loved me, that she knew taking care of Mom was hard for me, admitted that she said some hateful hurtful things to me and knew she should apologize. Martha also told Susie that she believed that Mom was more in tune with "spirits" because of her disease and based her theory on that Mom saw people who weren't there when she and Mom were at the beach last spring. I just looked at Susie and said that is a progression of Alzheimer's and for Martha not to recognize that is absurd. Susie emphasized to Martha that she should apologize and not let this wound fester.
And I waited for my apology which has yet to arrive.
We all went to Martha's birthday celebration at the Rutherglen Mansion on Sunday morning and had fabulous food. I got Mom's plate which had waffles, bacon and eggs and then served myself. Martha didn't acknowledge me during the whole time, didn't thank me for her gift, nothing. And when Susie wanted to take a photo of the three of us, I flatly refused. At least the food was good. And Dick, one of Martha's friends, didn't speak to me either, so now I'm wondering what she's telling her friends.
Today, Martha came over and again didn't acknowledge me. I know she wanted to have Mom say 'Happy Birthday" to her, but Mom didn't remember it was Martha's birthday today. Martha should have reminded Mom, like I had to when it was my birthday. But she's such a little girl, that she just couldn't act like a grown-up.
Susie left early Monday morning. I cried when she left our house Sunday night. I miss her so. She made it home okay and I look forward to seeing her during Memorial Day weekend. I appreciate her trying to work things out with Martha and I, but I am not going to just forget things this time. What Martha said was too hurtful and I can't let that go.
I'm still trying to let go and let God ...

Siblings can be a real pain in the ass - Part II

I'm done.
I just got off the phone with my sister, Martha. She calls about 7 p.m. every night to talk with Mom. Since I screen all of our calls, I answered the phone this evening. I asked her if she got my two messages that I left her and she said yes. I asked her if she didn't want to talk to me and she said there was nothing to talk about and she was too stressed to talk anyway because she is doing report cards.
I replied that this isn't stressing me out at all (I was being sarcastic) and hung up the phone.
When is she going to grow up and be an adult human being? Never.
I don't care if I never talk to her again. If she comes over here to see Mom, I will go in my room and not talk with her at all. And she has her birthday coming up and at this point, I don't want to go at all. I certainly don't want to go and act like everything's OK when it's not. I'm not a very good actor that way.
I'm done trying to have a relationship with her when it's very obvious that she doesn't want one with me and resents everything about me.
And now when I try to talk to Mom about all this, she doesn't even understand who Martha is and why I'm so upset. She even said at one point that Martha wasn't really her daughter. Mom is trying to comfort me, coming to my room while I cry and rub my shoulders and hugs me. But I can't even talk to her about it.
In the past, Mom has always taken Martha's side, mainly because she's her baby. I am not perfect by any means and I know I've picked fights with Martha and done mean things to her as well. But at this time, I just can't handle any more stress and I won't put any more stress in my life.
And who pours out their heart to an Alzheimer's patient expecting sympathy? Martha evidently did. How pathetic is that?
So I'm done. I will pray for her, but as far as actually having contact with her, I'm done.

Siblings can be a real pain in the ass

I feel like my body has been run through a wringer washing machine.
Today, my sister, Martha, who turns 50 in a couple of weeks, came to stay with Mom to give me a chance to get out of the house a while. A few days ago, she and I had a conversation about taking Mom to Colfax on our annual trip across the state on Memorial Day weekend. Martha informed me that she couldn't possibly go because of all the work she had to do. I said it was going to be a huge amount of work for me to go alone with Mom this year and I could sure use some help. We decided to talk about it today when she came over here.
Actually, Mom brought the subject up. She looked at Martha and said she was determined to go on the trip and that we needed her help this year. And then Martha said she had all this work to do and after all she was recovering from major surgery (her hysterectomy in December 2010) and that she knew she would be so tired from the trip that she couldn't possibly get all her work done in the last two weeks of school.
I told her I completely understood that it wasn't a perfect time for her to go, but this could be Mom's last chance to go on the trip. I also said that it is her choice between her job and her mother.
Then she began attacking me. She said that she couldn't jeopardize her job because that was her way to pay bills and eat. She said she isn't like me who's lived with Mom and had Mom pay all my bills the last 20 years. She said she pays her own bills and takes care of her own household. I asked her to quit insulting me, but she didn't. She said she was only telling the truth. I never raised my voice, although it was a great effort not to, but I countered with the times she had asked Mom for monetary help and she said it was none of my business, it was only between she and Mom and that she had always paid Mom back. I knew that wasn't true and told her so, that Mom had talked to me about it and Martha shot back that Mom had talked to her about me too.
I was so hurt, but I kept on talking in a very even voice that I wish she would make the choice of helping Mom because it was really her choice between Mom and her job. I also said that I understood she didn't like to go to Colfax, but this time Mom and I really needed her, and that I really understood all the work she had to do. I emphasized that the motel rooms had nice desks where she could sit and work whenever she wanted to and that she could even work on the way over and back.
She still balked. I told her she didn't have a clue how hard the work is now here at home and she replied that I hadn't a clue about her job.
After a bit more of this back and forth bickering, she finally said she would go. She said to go ahead and make the reservation and I told her I already had a reservation made. But as she sat there with Mom, I called the motel in Colfax and made an additional reservation for her because she wanted her own room. And she thinks we should rent a car, and told me to look into that.
As I left for my little outing, I still felt hurt by all the things she had said. I felt like crying all the time I was gone, but I didn't cry.
When I returned, Martha immediately left, saying very little. I asked Mom if something was wrong and she said that Martha thinks I'm mean to her. I asked her how I was mean to Martha and Mom couldn't tell me, so I called Martha. She said she was going home because she had report cards and other work to do, so I gave her enough time to get home and called. She didn't answer, so I left a message saying that Mom said she was upset with me and I wanted to talk to her about why she might be upset.
That was almost two hours ago and she hasn't called me back. I'm betting she never will. I'm thinking she's at her friend's house right now talking about how mean I am and how I forced her to make a decision about going to Colfax. I guess me being her scapegoat will never change.
I couldn't have talked to Martha with a calm voice if it wasn't for God. I prayed for Him to give me the right words and He did. Now I pray for His healing power to go to Martha so that some day she may be healed of all this hurt, anger or whatever she's carrying around inside her. I seem to bring it out in her.

Toothpaste

Something as simple as toothpaste can become a really big deal to an Alzheimer's patient.
I bought some new toothpaste for Mom that was in a pump, not thinking it would totally confuse her. I was simply thinking what nice toothpaste it would be for her, since it wasn't strong, would be gentle on her teeth and even foams when she put it in her mouth. But I should have known better.
When she finally used up her old tube of toothpaste, I unwrapped the new pump version and even put some on her toothbrush. She seemed to like it. I put it on the counter conveniently located close to her toothbrush, or so I thought.
The next day I asked Mom if she liked her new toothpaste and she looked confused. We went into her bathroom together and instead of her new toothpaste, there sat a tube of Vaseline. I was so upset, not at Mom, but at myself and the thought that it could make her sick. I removed the Vaseline into a small basket on her bathroom counter and replaced it with the new pump toothpaste.
That night, I again asked about the new toothpaste and Mom seemed confused again. So I checked it out, and sure enough, there was the tube of Vaseline. I couldn't believe it. I replaced it again with the toothpaste pump.
The next day when our caregiver was here, I asked her what I should do. She reminded me that the fewer choices Mom has in the bathroom, the better, and pointed out that Mom can't remember anything with a pump, except perhaps hand lotion, which I think she also used as toothpaste, and that I should get her a tube of toothpaste. She also suggested that I go through her entire counter and remove anything that might be harmful to Mom if she ingested it. I cried because this was once again, so not like my Mom.
That day, I bought Mom a tube of toothpaste and replaced the Vaseline with it. I even put some on Mom's toothbrush and placed it next to the toothbrush. Thinking I had this whipped, I relaxed a little, only to find out that I relaxed too soon.
I went into her bathroom today, and to my shock and horror, there was the tube of Vaseline where the toothpaste should have been. The toothpaste was tucked neatly in her little basket. I removed the Vaseline to a drawer under the counter and then sat down with Mom to talk to her about it.
Mom hasn't been feeling well the past couple of days and I just couldn't figure out why. Now I believe it was her using the Vaseline for toothpaste that made her feel ill.
I talked with Mom, whose reaction was much like that of a small child. At first she denied it, then said she was sorry and would try to do better. I explained that her actions scared me because I am so afraid she will make herself sick.
We agreed that when she gets ready for bed and when she is doing her morning routine, that I will be in the bathroom with her to make sure she uses everything properly. She hesitated when we were talking, but eventually agreed that she would let me in the bathroom with her. I also found that she is locking one of the doors to the bathroom and when I asked her why she locked the door, she said she locked it when she was alone. I reminded her that she was never alone, but she acted like I wasn't telling the truth.
I feel so selfish because I thought, "Great, now I will have to give up part of my evening to help Mom even more," and then I just want to slap myself because it's not that I mind helping Mom, it's that I like to have some time to myself and that seems to be getting less and less frequent.
And this was yet another lesson I learned about Alzheimer's patients. How I HATE this disease.

Declining little by little

I am so frustrated. Why can't our most intelligent doctors in the world cure this awful disease? We live in  the most medically advanced country in the world, and there still is no cure for Alzheimer's. WHY NOT?
I see Mom decline a little every day and there's nothing I can do about it. Now she can't tell toothpaste from hand lotion. Most mornings, she must ask me how to take a pill. She can't remember a conversation from the time she hangs up the phone until she tries to tell me about it seconds later.
I see her get so frustrated because she can't communicate with me she starts crying. And cries and cries until her eyes are red and puffy. My "old" Mom never cried like this.
And yet this is the new norm.
Almost every night right after supper, Mom cries. When I ask her what's wrong, she can't tell me, or says she doesn't know. It breaks my heart to see her like this. I want to comfort her and I don't know how.
And yet, just when I think I've lost Mom completely, she says something that my "old" Mom would say.
I was feeling really bad about Martha not letting me help plan her birthday party and Mom came up to me, patted me on the shoulder and said, "Sally, there's no one with a bigger heart than you. You would do anything for anybody." I was so touched, I almost cried, but instead I said, "Thank you, Mom."
I had a good day today because I got out of the house on a bright, sunny, although chilly, day. I bought flowers that will bloom this spring and summer and even a pink jasmine plant. And while I was shopping I realized I didn't need to hurry because a friend was with Mom.
But then I came home to the same old crap. Mom started going through the mail and I asked her what she was doing as she opened an envelope. She replied she was opening her mail. I asked her to not move it off the table until I had a look at it and she became indignant and reminded me that after all, it was her mail. I told her I understood it was her mail, but I paid her bills now and I didn't want any bills misplaced. Then she started crying, which made me feel guilty. And she left the room.
I had to leave the room too, because I just can't take this at times. Even though I had a break this afternoon, I don't feel like it. I hear all these voices in my head saying I should be ashamed of myself for not being more patient and to just work around these situations. But I'm tired. I am so damned tired. And yet, when I try to go to sleep at night, I can't. I worry about Mom and what the future holds. I worry about money and if we can get along. I worry so much that I'm not getting to sleep much before midnight.
I know I must trust in God because He is taking care of us. He has already seen us through some very tough times and I know He will carry me through all this.
It's just that I get so frustrated because I can't physically make this better. I can't take her to the doctor who will give her a shot and, "Poof!" the Alzheimer's is gone. It's not the flu, it's not a cold, it's not that simple.
God help me and those folks who have Alzheimer's. Pray for a cure.

My sister must be really scared

After two days of not knowing what my sister, Martha, was thinking about our joint counseling session, she informed me tonight that she isn't going. I'm really not surprised.
But when she actually said the words, my feelings, along with my hopes, were dashed.
After praying and talking with two friends who listened to me ramble on about how I felt, I decided not to confront Martha about her actions yesterday. It's just not a battle I want to fight. And after her decision tonight, I don't think I'll talk to her about any more counseling.
I told her that not going to counseling was her choice, more of my "psycho-babble" as she calls it, and that maybe some day she might change her mind.
This is the second time I've offered to go to counseling with her and the second time she has turned me down. I don't think there'll be a third offer on my part.
The first time I offered to find a counselor and schedule some sessions was after Martha's messy divorce from a real lunatic. She accused me of having an affair with him and all kinds of nasty stuff, all of which were untrue, except the part that I absolutely abhorred her ex-husband. After a horrible argument on Christmas Eve of all times, I asked if she would go to counseling with me and we could work on our relationship. After making all kinds of excuses, she finally refused and I hadn't offered until now.
Because of the choices she's making about handling Mom's condition, when it finally hits her, I'm scared of how she will cope. But, you know, she's going to be 50 years old in about a month and I think she's old enough to make her own choices.
In the meantime, please pray for me that I don't become bitter toward her and don't resent her.
And I still need to choose my battles, because I know there will be more.

Picking my battles

I just can't get a grasp on what Martha is thinking or doing or feeling.
For the first time in a long time, she was actually nice about my birthday. She even presented me with an iPod, quite a surprise.
As I waited for the other shoe to drop, it eventually did.
I called her last Wednesday to discuss a couple of things: her 50th birthday party and going to a counseling session together. After going over details of her birthday, I got up enough courage to ask her about the counseling. After making a couple of excuses, she hesitatingly agreed to attend. But then, she said she probably couldn't come over this weekend to give me some time away from home because she had all these other things going on.
First I wanted to ask her if this meant she wouldn't see Mom at all this weekend because it would be a week since Martha has seen her - at her house during my birthday party. Then I wanted to scream at her that giving me time away from home should be a priority with her because it's the only time I get out of the house to relax. But I didn't say either one. I think I just sighed and said something like, "OK."
By Friday, after my morning session with my counselor, I was ready to call her and ask her to make time to come over here for a couple of hours. Just as I was about to call her, Martha called me. She said she was going over her weekend schedule and decided she could come over about 10 a.m. Saturday, which would give me about three hours to do some errands. Marvelous! I was so excited. I got my grocery list out, decided I would go to a couple of garden shops just to see what they had, I could donate a couple of used file cabinets to Goodwill, and then have lunch somewhere, depending on where I had a coupon. I was really looking forward to Saturday morning, when I could actually take my time to enjoy myself a little. Then one shoe dropped.
During our conversation, I told Martha that my counselor made arrangements for us to meet with her next Saturday afternoon and that a friend had agreed to stay with Mom during our session. Martha said she had been thinking about it and decided she may not go. My heart dropped down to my knees. She continued by saying that I already had a relationship with the counselor and she just didn't feel comfortable. I asked her to think about it anyway and she said she would.
Is she afraid of what the counselor might bring up? Is she afraid of being confronted about something she would rather just ignore? Who knows. I think she is afraid.
But it made me angry and hurt that at first she would say she was willing to go to the counselor with me and then say nope, changed her mind and probably will not go. I think I am more hurt than angry.
And then the other shoe dropped this morning.
Martha said she would be here by 10 a.m. I slept in, and then hurried around here to get everything ready. I took the dog outside, made Mom's breakfast, made the dog's breakfast, took a shower, got clothes out of the dryer and was ready for Martha by 10:05 a.m., a miracle. And then I waited. And waited. And waited. Until 10:30 a.m.
Martha finally arrived at 10:30 a.m. with a latte in hand. I asked her about being here by 10 a.m. and she said, "I told you 10 or 10:30." I said I had made plans and, since she had a hair appointment at 1:30, that only gave me two-and-a-half hours to get all my errands done. All she said was, "Oh, sorry." I got out of here at 10:40, because I had to tell Martha about finishing Mom's breakfast, how many pills she got in the morning, etc.
As I pulled out of the driveway, I was so hurt and angry. She just doesn't think that I make plans if I ever have a free moment. I got my grocery shopping done, got rid of the file cabinets that had been banging around in the car for almost a week and went to a local drive-in because I didn't have time to actually sit down to have lunch anywhere. I barely made it home by 1 p.m. Martha did help me unload the groceries and then she was off to do her social outings for the weekend.
I am thinking about calling her tomorrow to talk to her about this. I miss going out in public. I miss going out to shop, even though I don't have any money, it's nice to look at things. It's just nice to have time alone and not think about Mom's condition for a while. But Martha seems oblivious to that and I need her to recognize that. The more she doesn't, the more hurt and angry I become and I don't want to feel that way.
I just don't want to fight, but this might be one battle I might have to fight anyway.

Crazy? Not yet

I had my second of six personal counseling sessions today. The counselor comes to the house, so I don't have to find someone to be with Mom. She comes early in the morning while Mom is still sleeping so we can talk freely.
The main thing is that she is reassuring me that I'm normal. That all the emotions and feelings I'm going through are OK. That is huge for me because at times I feel like I'm going absolutely crazy. And I might some day, I'm just not there yet.
Today we talked a lot about Martha. I told her I hesitated asking her to talk about Mom because I don't want to fight. The counselor agreed to be the intermediary, IF Martha agrees to come to a session. That's a big IF. I have asked Martha before to attend counseling to work on our relationship and she refused. But that was some time ago and perhaps she has changed to the point of being willing to go now.
I also celebrated my 55th birthday yesterday. I had to tell Mom that it was my birthday. That was really weird. And, in a complete act of unusual kindness, Martha offered to stay with Mom while I went out to dinner. I really don't like to go out at night any more, but I took her offer and enjoyed some delicious Chinese food. Mom wanted to go with me and couldn't understand why she had to stay with Martha.
Today (February 4) is my cousin's birthday and Mom has always called her in the past to wish her happy birthday. This day, however, she didn't recognize my cousin's name and absolutely refused to call her.
Alzheimer's is such an illogical disease. I just can't figure out how Mom's thought process works and that process varies from day to day.
Tomorrow we celebrate my birthday with some friends at Martha's house. I hope Mom can interact socially OK with the other people. Sometimes she's OK with them and sometimes not, so we'll see.
My birthday this year was just weird. I really don't want to celebrate another birthday like I had to this year. I guess I'd really like to celebrate it for real. Maybe next year.
I know this is where God wants me to be and I am supposed to be with Mom. It's just so damned hard.

Decisions

Mom is declining daily. I know this because I see little things that she never used to do and now they've become her standard.

She always says goodnight before retiring to her bed, but one night she just turned out the light. I couldn't figure out what was going on, so I asked her.
"Mom, aren't you going to tell me goodnight?"
She came out of her bedroom wearing jeans and a t-shirt. I asked why she wasn't in her pajamas and she said she couldn't find any. I had just washed her pajamas and couldn't figure out what she had done with them, so I began searching. I finally discovered them in a plastic garbage sack inside her bathtub. I opened the bag and an awful odor came from it, like poop and pee. I retrieved the pajamas, which Mom exclaimed that she just couldn't wear now, put them in the washer and got her some clean ones. And she still wasn't undressing to get out of the jeans and t-shirt. I finally got her to bed a few minutes later.

Immediately afterward, I called a friend, who's Mother has dementia and lives in a small adult home. She said I should make arrangements to take Mom to Canterbury Gardens, a local place that specializes in Alzheimer's patients. She said she took her Mother there when she refused to bathe and it worked out very well. So I talked to my sister, Martha, and we agreed to give it a try. But then God stepped in.

Mom also is refusing to take a shower. It's not that she's afraid of the water, she just simply doesn't want to do it. I talked with our caregiver and she talked with her supervisor, who changed her schedule to come three times a week now instead of once a week. The first time we tried to get her in the shower, it took a lot of cajoling, but Mom eventually gave in. Second time, not so well, she just flat out refused. So last night, I told Mom the caregiver was coming today and that she was going to take a shower and wash her hair. Period. Mom just looked at me and said OK.

After thinking more about taking Mom to Canterbury, I realized it wouldn't work and she would get more upset than I could imagine. When I talked again to Martha, she agreed and said she thought Mom just might keel over. So, we'll try it with the caregiver and see how it goes.

In all this process, though, I began thinking that this might be the beginning of Mom leaving me to live in another place. When I found out how ill she is, immediately I decided to have Mom home as long as I could. With this latest phase, I wonder how long that will be and when that time comes, how will I make a decision like that? How could I send Mom to one of those homes? I HATE them, even the nicer ones. And I know I will get absolutely NO support from Martha because she was no help when we had to put Grandma Dora in a nursing home. Of course, I'm not getting much support from her now anyhow.

Mom has been hoarding her disposable underwear. If I see them in the morning, I nab them and tuck them into the garbage, but sometimes Mom gets ahold of them first. I discovered another hiding place. When I got her clean underwear and socks, here were, tucked neatly in her underwear drawer, six to eight used disposable panties. I grabbed them and told her gently that she shouldn't put dirty underwear in with clean ones and disposed of all of them. The caregiver said this was normal behavior, along with putting tissues EVERYWHERE, which she does.

In our last conversation, Martha cried as I talked about Mom's latest declines. She said that she tells her friends that Mom's basic personality is still intact. That's how much Martha is in denial. She doesn't realize that Mom is really gone and she is nothing like our "normal" Mom. But Martha has to handle it her own way and I'm really trying to let her.

I begin one-on-one counseling next week. I hope this allows me to air some things I can't talk about with anyone and I think it will. Under this state-funded program, I can have six sessions and I bet I take up all six!!

In the meantime, when I read my Bible every night, I read about God being my Rock. At this rate, He'll have to be like the Rock of Gibraltar.

O Christmas Tree

Taking down the Christmas tree every year usually makes me melancholy, but this year it just made me downright sad.
Maybe because I can't shake this feeling that this may be Mom's last Christmas. Maybe it's because Mom really didn't realize it was Christmas and didn't seem to want to participate in any festivities. It could be that I'm just feeling tired and sad these days.
Whatever the reason, I'm sad tonight because the Christmas tree is gone, leaving an empty space, kind of like the one in my own heart.
It is so difficult for me to realize that I will never have my Mom back again. Although I get glimpses of her every now and again, those glimpses are getting few and far between. I cry for my Mom, because I'm missing her already. It's like she's already gone from me. And in many ways she is.
The Christmas tree this year was huge and regal, shaped perfectly from limb to limb. All the lights and ornaments did was enhance its natural beauty. It was the biggest tree we've ever had in the Ousley household. I was encouraged to take photos of it, but I just couldn't do it. I felt like taking a photo would somehow be violating the tree, taking something from it. Instead, night after night, after Mom went to bed and it was just me and Gigi, I would just look at the tree from top to bottom, memorizing each detail: where each ornament was placed, how the lights twinkled amongst the branches, how the limbs were perfectly shaped and supported even the heaviest ornaments. If I close my eyes right now, I can see it perfectly.
I often do this if I really want to remember something. Like being at the beach and listening to the sound of the waves roll in. If I quiet my thoughts, I can hear those waves, soft and then loud, sometimes crashing against the shore's rocks. I don't visit the beach often enough, so I want to make the memories last. And it usually works.
So in the months to come, when I have difficult days, I will close my eyes and remember our beautiful tree and I know that will help me get through those days that I wonder if I will survive.
Thank you, Lord, for making such a perfect tree and allowing us to share it.