Ever since Mom became a resident of the nursing home in Battle Ground, I've had a fight on my hands.
And about stupid, silly, meaningless things, but important to my Mom.
I requested Mom have Ensure, a dietary supplement added to her meals. After requesting this three or four times or maybe even more, even having the dietician making note of my requests, I still had to fight the aides and the nurse on duty about giving Mom an Ensure with her lunch and dinner. Finally, they granted my numerous requests.
Then they couldn't figure out why Mom wasn't eating a very good lunch. I requested a sandwich and soup for Mom's lunch and after numerous requests, they began giving her what she wanted and she began eating very well.
Then it was getting Mom's fingernails trimmed and cleaned. They were so awful, I just barely could bring myself to touch her hands.
Mom grew attached to a stuffed bunny that I had given her years before. She took that bunny everywhere, talked to it, petting it, letting it rest on her lap. Then one day, the bunny disappeared. The staff said they looked high and low and could not locate the bunny. My sister finally bought Mom a new one and Mom seems satisfied with it.
The next battle was about Mom getting bathed. Their normal schedule is twice a week, so I asked Hospice to come in to give Mom an additional bath. The nursing home staff stopped bathing Mom, saying Hospice took over. What a bunch of BS.
I met with three of the nursing home staff yesterday, and, through my tears, after trying to explain to them how difficult it is just coming to see Mom, how emotionally draining it is to see her now, that I was just plain tired of fighting them about stupid things. They brought in her chart and said they would fix things.
But, when lunch was served, just a few minutes later, the cook fixed Mom a full meal. Again, I requested soup and a sandwich, after the cook explained she was new and didn't know. Ya, right. If I hadn't been there, Mom wouldn't have eaten. How many times had that happened?
As I walked out of the nursing home, after helping feed Mom her lunch, I felt so defeated and discouraged. How many people in that place suffer because no one advocates for them? What would happen if I didn't see Mom.
I shudder to think. But I know my God is watching her and will keep her safe. And He will give me the courage and strength to take care of my Mom.
Tuesday, January 24, 2012
Thursday, January 12, 2012
True Friends
During this journey with Mom, I'm sure finding out who my friends really are.
I've had friends give me turkeys for Thanksgiving when I couldn't afford one. I've had friends text me just to see how I'm doing and if my text sounds too sad, they call me. Friends will drop whatever they're doing just to let me cry on their shoulders, at all times of the day and night. On the other hand, I've seemed to drive away some people who I thought were friends and who I am now finding aren't really.
One friend in particular just astounded me with her behavior.
I was having a very difficult time on New Year's Eve. I tried watching television, catching a favorite movie, tried crocheting on a wedding gift I'm trying to get done before April, I tried everything and just couldn't shake a lonely, sad feeling.
I called one friend and we talked for quite a while. As I got off the phone, I realized I hadn't heard from a friend at Christmas, so I decided to call her. It was only 8 p.m. on New Year's Eve, and although I usually don't call people that late, I thought since most people stay up late, it would be okay to bend the rule just once.
What a big mistake, because I felt worse after talking to this person than I did before the call.
My friend answered the phone only after the answering machine picked up my call. She said she and her family were doing things and so she couldn't talk long. She asked how I was doing and I responded that I was having sad days and sadder days. She asked if I had found a job yet and I answered no, but I thought, what does she expect? She started talking about her son, and asked if she had told me that he had been the editor of his college paper. I had not heard this story and wondered why she chose this moment to tell me. She said the paper hired him as a "man on the street," whatever that means, and her son had worked his way up to editor and had to go through several interviews to get the position. I said good for him or something to that effect, still wondering why she chose to tell me at this particular time. Someone said something to her and she cut our conversation short, leaving me feeling like a real failure because I am no longer an editor of a paper, or even a writer for that matter, and because I was looking for someone to get me out of the sad feeling I was experiencing. As I hung up, I knew I would never attempt to contact her again.
I have not known this person for very long and our relationship has been a bit shaky. As Mom became more and more ill, this friend hasn't shown any sympathy or empathy. I try not to bother my friends too much with this part of my life, but sometimes I just need to talk and I really need support if I do call on friends. Most of the people I call friends understand this, but this so-called friend obviously does not.
God is so good to me, though. A couple of days later, I was surprised by a friend in Minnesota I had not talked to in years. She said she really missed me and filled our conversation with so many compliments, I left the phone call feeling wonderful. What a blessing.
It takes a lot for me to give up on a person, to not have them in my circle of friends, but I've given up on at least one friendship and there might be more down the road. Although I'm not crazy about this time in my life, God keeps teaching me very valuable lessons. Praise the Lord!
I've had friends give me turkeys for Thanksgiving when I couldn't afford one. I've had friends text me just to see how I'm doing and if my text sounds too sad, they call me. Friends will drop whatever they're doing just to let me cry on their shoulders, at all times of the day and night. On the other hand, I've seemed to drive away some people who I thought were friends and who I am now finding aren't really.
One friend in particular just astounded me with her behavior.
I was having a very difficult time on New Year's Eve. I tried watching television, catching a favorite movie, tried crocheting on a wedding gift I'm trying to get done before April, I tried everything and just couldn't shake a lonely, sad feeling.
I called one friend and we talked for quite a while. As I got off the phone, I realized I hadn't heard from a friend at Christmas, so I decided to call her. It was only 8 p.m. on New Year's Eve, and although I usually don't call people that late, I thought since most people stay up late, it would be okay to bend the rule just once.
What a big mistake, because I felt worse after talking to this person than I did before the call.
My friend answered the phone only after the answering machine picked up my call. She said she and her family were doing things and so she couldn't talk long. She asked how I was doing and I responded that I was having sad days and sadder days. She asked if I had found a job yet and I answered no, but I thought, what does she expect? She started talking about her son, and asked if she had told me that he had been the editor of his college paper. I had not heard this story and wondered why she chose this moment to tell me. She said the paper hired him as a "man on the street," whatever that means, and her son had worked his way up to editor and had to go through several interviews to get the position. I said good for him or something to that effect, still wondering why she chose to tell me at this particular time. Someone said something to her and she cut our conversation short, leaving me feeling like a real failure because I am no longer an editor of a paper, or even a writer for that matter, and because I was looking for someone to get me out of the sad feeling I was experiencing. As I hung up, I knew I would never attempt to contact her again.
I have not known this person for very long and our relationship has been a bit shaky. As Mom became more and more ill, this friend hasn't shown any sympathy or empathy. I try not to bother my friends too much with this part of my life, but sometimes I just need to talk and I really need support if I do call on friends. Most of the people I call friends understand this, but this so-called friend obviously does not.
God is so good to me, though. A couple of days later, I was surprised by a friend in Minnesota I had not talked to in years. She said she really missed me and filled our conversation with so many compliments, I left the phone call feeling wonderful. What a blessing.
It takes a lot for me to give up on a person, to not have them in my circle of friends, but I've given up on at least one friendship and there might be more down the road. Although I'm not crazy about this time in my life, God keeps teaching me very valuable lessons. Praise the Lord!
Taking a break
On my way to see Mom in Battle Ground yesterday, a little more than an 80-mile trip, I turned around. I just couldn't face seeing Mom.
Every time I see Mom, she seems to be worse. Her eyes are blank and she talks, but it really isn't to me. I have seen Mom for perhaps a second and then she's gone again. Those brief moments are few and far between and lately, not at all. She holds her white bunny, pets it and talks to it, and observes the world around her.
When I visit Mom, I usually go about noon so I can help her eat. I fought with that nursing home about feeding her soup and a sandwich at noon for weeks and finally they are serving her what she really likes for lunch. I didn't think it was that big of a deal to get her soup and a sandwich, but it turned into a battle that I got really tired of fighting. Another battle was getting her an Ensure to drink at lunch. And getting them to take Mom for a short walk instead of having her in a wheelchair all the time. I guess I'm tired of fighting too.
When I got home yesterday, I called a friend and she suggested I take a break. And, when I decide to go back, she suggested I do something fun such as go out to lunch or go shopping, making it more of a fun trip instead of something I feel obligated to do.
And that's the thing. I do feel obligated to see Mom. I want to make sure she is doing okay. And because I'm not her primary caregiver any longer, I feel like I still need to take care of her in some way, like Mom always took care of me.
But I am slowly realizing that I need to take care of myself too. I must find a job and a new place to live. I must take care of my kids, especially my new ones. I must organize the Walk to End Alzheimer's so it's the best walk in Western Washington. I must take care of my own health.
Mom is already gone from me. As much as I would like to think she still knows me, she really doesn't. She probably thinks that I'm just someone who shows up once in a while to visit with her. I really feel like Mom has already left me. And when the time comes for her to leave this Earth, I will feel relieved. She will be so much happier in Heaven. I will be happy knowing she is in the Arms of God.
Every time I see Mom, she seems to be worse. Her eyes are blank and she talks, but it really isn't to me. I have seen Mom for perhaps a second and then she's gone again. Those brief moments are few and far between and lately, not at all. She holds her white bunny, pets it and talks to it, and observes the world around her.
When I visit Mom, I usually go about noon so I can help her eat. I fought with that nursing home about feeding her soup and a sandwich at noon for weeks and finally they are serving her what she really likes for lunch. I didn't think it was that big of a deal to get her soup and a sandwich, but it turned into a battle that I got really tired of fighting. Another battle was getting her an Ensure to drink at lunch. And getting them to take Mom for a short walk instead of having her in a wheelchair all the time. I guess I'm tired of fighting too.
When I got home yesterday, I called a friend and she suggested I take a break. And, when I decide to go back, she suggested I do something fun such as go out to lunch or go shopping, making it more of a fun trip instead of something I feel obligated to do.
And that's the thing. I do feel obligated to see Mom. I want to make sure she is doing okay. And because I'm not her primary caregiver any longer, I feel like I still need to take care of her in some way, like Mom always took care of me.
But I am slowly realizing that I need to take care of myself too. I must find a job and a new place to live. I must take care of my kids, especially my new ones. I must organize the Walk to End Alzheimer's so it's the best walk in Western Washington. I must take care of my own health.
Mom is already gone from me. As much as I would like to think she still knows me, she really doesn't. She probably thinks that I'm just someone who shows up once in a while to visit with her. I really feel like Mom has already left me. And when the time comes for her to leave this Earth, I will feel relieved. She will be so much happier in Heaven. I will be happy knowing she is in the Arms of God.
Saturday, December 10, 2011
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.
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.
Thursday, December 8, 2011
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.
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.
Monday, November 28, 2011
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.
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.
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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