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.
Monday, November 28, 2011
Thursday, November 10, 2011
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.
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.
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