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.