Many people plan for STHF someday, but how many people ever plan for having to care for a parent or loved one should they become incapacitated?
My mom has Alzheimer’s. Although she still knows me, I don’t know that she truly knows who I am. When I first started helping with cleaning her house three years ago, she would ask my sister if the maid was coming today. Although I technically am still her maid, I think I may have an actual name now. She doesn’t call me by it, but my sister and niece claim she refers to me by name sometimes.
My sister lives with my mom and is her primary caretaker. My niece and I are her secondary caretakers. I help out with my mom on weekdays and whenever my sister and niece go out of town. I’ve always stayed with my mom to watch her while my sister was away. When she is in her own environment and has her own routine she is only mildly confused when I am there instead of my sister.
Last Wednesday my sister and niece left for a library conference and left my mom and her golden retriever to stay with me this time. Because of the timing of the trip I couldn’t stay with her. It has been a very confusing week for my mom. She has finally settled in here although she doesn’t really understand where here is. She will be confused again when she goes home. Anytime her normal routine is changed she is “lost” for a few days until she feels secure again.
I never knew much about Alzheimer’s. I thought it just robbed you of your memories. I didn’t have any idea of all the areas of a person’s life it invades and affects. Simple everyday movements that seem automatic and natural to me are very complicated and frustrating to my mom. Simple commands such as stand up, sit down, walk this way and lay down are met with blank stares as if they have been spoken in a foreign language. It’s as if my mom has an extreme case of ADD and I am trying to get and keep her attention so that I can keep her safe.
Due to the progression of the Alzheimer’s my mom doesn’t recognize that she has a left side of her body. (She was tested for a stroke, she didn’t have one) Due to this phenomenon she needs assistance to sit down safely. Since she doesn’t account for the left side of her body she often sits half way on a chair or tries to sit on the arm rest. I try to help guide her in the right direction so she doesn’t fall off the chair or hurt her butt sitting on something she shouldn’t. I usually have to move her legs in front of her when she is sitting in a kitchen chair to help her face the table.
Trying to get my mom out of a chair is sometimes just as difficult as getting her to sit in it. She often doesn’t understand when I tell her she needs to stand up. She will start to try to get up and then sits back down. Then she looks at me blankly and I have to keep repeating my request trying to simplify the words so she can understand. A few nights ago it was a toss-up as to which one of us was closer to tears. She was frustrated that she didn’t understand and I was frustrated that I couldn’t help her to understand. It always distresses me when I unintentionally upset her. She gives me the doe in the headlights look and it makes me feel horrible. Unfortunately this is a common occurrence with my mom. She doesn’t understand my request and I feel like I have failed her because I can’t simplify it enough and I am not strong enough to always move her so she doesn’t have to do it herself. These exchanges leave me so emotionally drained and exhausted. It puts me in a mental funk.
Last night it was trying to get her into bed. I tried to show her how to get into to bed but it ended up being an ordeal and she got confused and frustrated. I worry about her sleep position. I worry that she will roll on her stomach and suffocate because she isn’t strong enough to roll herself over. A daughter shouldn’t have to worry about such things happening to their mother.
Meal time is a chore too. I have to become super nag to make sure she eats her food. I cut her food up into small bites and then I keep telling her to eat when she starts to get distracted. She will lay her utensils on the table so I keep putting them back on the plate or near the bowl. Even small meals can take a half hour or more to finish.
My mom will be 80 in March but she is like a small child hiding in an old woman’s body. Just as you must hide your fear with a child so as not to upset them, the same is true of a person with Alzheimer’s. No matter how sad I feel, I always smile and put on a happy face for my mom. After all, she doesn’t know that there is anything wrong with her and I’m not going to tell her.
I admit I haven’t read as much as I should about Alzheimer’s. But the here and now is sad enough without borrowing from the future. I just can’t deal with any more sad realities right now. I go to my mom’s doctor appointments with her. I settle for the doctor’s preview of what’s to come.
The past week with my mom has opened my eyes to how much work it is to take care of someone else fulltime. My hope is that others on INGO who have family members or friends who are caretakers might take a little time out of their schedule to help these people out. If nothing else sitting with the person they care for so they can run errands or take a much needed nap. To you in might not seem like much but to an overburdened caretaker it can mean a lot.
My mom has Alzheimer’s. Although she still knows me, I don’t know that she truly knows who I am. When I first started helping with cleaning her house three years ago, she would ask my sister if the maid was coming today. Although I technically am still her maid, I think I may have an actual name now. She doesn’t call me by it, but my sister and niece claim she refers to me by name sometimes.
My sister lives with my mom and is her primary caretaker. My niece and I are her secondary caretakers. I help out with my mom on weekdays and whenever my sister and niece go out of town. I’ve always stayed with my mom to watch her while my sister was away. When she is in her own environment and has her own routine she is only mildly confused when I am there instead of my sister.
Last Wednesday my sister and niece left for a library conference and left my mom and her golden retriever to stay with me this time. Because of the timing of the trip I couldn’t stay with her. It has been a very confusing week for my mom. She has finally settled in here although she doesn’t really understand where here is. She will be confused again when she goes home. Anytime her normal routine is changed she is “lost” for a few days until she feels secure again.
I never knew much about Alzheimer’s. I thought it just robbed you of your memories. I didn’t have any idea of all the areas of a person’s life it invades and affects. Simple everyday movements that seem automatic and natural to me are very complicated and frustrating to my mom. Simple commands such as stand up, sit down, walk this way and lay down are met with blank stares as if they have been spoken in a foreign language. It’s as if my mom has an extreme case of ADD and I am trying to get and keep her attention so that I can keep her safe.
Due to the progression of the Alzheimer’s my mom doesn’t recognize that she has a left side of her body. (She was tested for a stroke, she didn’t have one) Due to this phenomenon she needs assistance to sit down safely. Since she doesn’t account for the left side of her body she often sits half way on a chair or tries to sit on the arm rest. I try to help guide her in the right direction so she doesn’t fall off the chair or hurt her butt sitting on something she shouldn’t. I usually have to move her legs in front of her when she is sitting in a kitchen chair to help her face the table.
Trying to get my mom out of a chair is sometimes just as difficult as getting her to sit in it. She often doesn’t understand when I tell her she needs to stand up. She will start to try to get up and then sits back down. Then she looks at me blankly and I have to keep repeating my request trying to simplify the words so she can understand. A few nights ago it was a toss-up as to which one of us was closer to tears. She was frustrated that she didn’t understand and I was frustrated that I couldn’t help her to understand. It always distresses me when I unintentionally upset her. She gives me the doe in the headlights look and it makes me feel horrible. Unfortunately this is a common occurrence with my mom. She doesn’t understand my request and I feel like I have failed her because I can’t simplify it enough and I am not strong enough to always move her so she doesn’t have to do it herself. These exchanges leave me so emotionally drained and exhausted. It puts me in a mental funk.
Last night it was trying to get her into bed. I tried to show her how to get into to bed but it ended up being an ordeal and she got confused and frustrated. I worry about her sleep position. I worry that she will roll on her stomach and suffocate because she isn’t strong enough to roll herself over. A daughter shouldn’t have to worry about such things happening to their mother.
Meal time is a chore too. I have to become super nag to make sure she eats her food. I cut her food up into small bites and then I keep telling her to eat when she starts to get distracted. She will lay her utensils on the table so I keep putting them back on the plate or near the bowl. Even small meals can take a half hour or more to finish.
My mom will be 80 in March but she is like a small child hiding in an old woman’s body. Just as you must hide your fear with a child so as not to upset them, the same is true of a person with Alzheimer’s. No matter how sad I feel, I always smile and put on a happy face for my mom. After all, she doesn’t know that there is anything wrong with her and I’m not going to tell her.
I admit I haven’t read as much as I should about Alzheimer’s. But the here and now is sad enough without borrowing from the future. I just can’t deal with any more sad realities right now. I go to my mom’s doctor appointments with her. I settle for the doctor’s preview of what’s to come.
The past week with my mom has opened my eyes to how much work it is to take care of someone else fulltime. My hope is that others on INGO who have family members or friends who are caretakers might take a little time out of their schedule to help these people out. If nothing else sitting with the person they care for so they can run errands or take a much needed nap. To you in might not seem like much but to an overburdened caretaker it can mean a lot.
You are AWESOME!
