On the Worst Days:
What I find the most challenging in the caretaker role is the hatred hurled at me. Rarely do I have the right words or actions that heal and console. I am the bitch of the family. I am the “one behind all of this” according to my mom. If I ask what it is that I am behind it is ‘all of it’….”you’re behind all of this. You told the doctors what to say. You are behind what the doctors decided. You are behind this guardianship.”
If anyone goes online to read about caretakers or to read about dementia what you will find are tender pictures of old people with a loving caretaker. Maybe other households have this, but more likely, it is an inaccurate picture. It is not the real world. It is not my world. The commercialized pictures show a kind old woman who is not angry that her daughter. That picture shows the peaceful daughter. The happy daughter. The rested daughter. It certainly does not show the daughter standing in the kitchen trying to find a morsel of food that satisfies the old woman. It does not show the mental burden of counting. Counting how many calls she must make when she arrives at work. Counting the number of calls she failed to make yesterday. It is not the old woman who is angry and calling her daughter’s name every five minuets to have her do something—anything. “Let the cat in—-Let the cat out”. Just make it disruptive. Make it hurt. It’s meant to hurt. It’s meant to vent.
The question is what is the natural human response to anyone who regularly and consistently blames, complains, and denigrates their caretaker? How patient the caretaker must be to take it over and over? I have the answer and it’s pretty g’damned patient because I handle it. I do not lash out. I do not hurt. I do not hurl back the anger.
No one knows. No one sees. No one cares. Why? Because I am the bitch of the family; the abuser and the attacker.
Yes, I am the bitch tough enough to step up and do this. Day after day; year after year.
And it’s all my fault. I am the one behind all of this.
June 27, 2016
12:45am: Jolted from the deep sleep of REM by a crash and a cry out of my name, “DONNA!, DONNA!” I bolted from my bed. The two cats who were sleeping next to me momentarily scattered. My worst fear for my mom is her falling. When in the hospital, she wore the familiar wristband that prominently states: “FALL RISK”. The sign hung on her door and at the foot of her hospital bed, “FALL RISK”. That is my mom. “FALL RISK”. Yet she often refuses to use her walker, refused to accept any training from an occupational therapist and refused to do any exercises that the physical therapist taught her. In her mind she is fine. She is fine until she falls and screams out with the crackled voice so typical of an ancient woman.
It is a gut twisting and heart jolting response to see your 86 year old mother on the floor moaning. She fell. Again. I vaguely recall hearing her walker crash but was soundly sleeping when the fall happened. She was making her way to the restroom when she fell and had not turned on any lights. She does that. Has always done that……walked around in a dark house. It drives me insane, but she does it anyway. Close the blinds and turn off all the lights. She fears someone will see inside our windows. For the last two days she’s been in a vile mood. She has picked and snipped at me over the least of things: “turn off that light! it bothers me; move this cat off of my bed; has Molly (the dog) been fed? (it IS my house, by the way) She asked the same question five times in an hour. I answered the same, “yes the dog has eaten and the dog has eaten something other than dog food.”
The challenge with being a caretaker of someone like my mom is determining what is dementia and what is her being lucid but her typical complaining, hateful and rude self. Being a caretaker is hard enough when the patient is compliant and good natured. Easy. That would be like my dad when he was terminally ill with lung cancer. He was easy. Good natured and still enjoyed things in life. I’d find him sitting on the edge of his bed playing Willie Nelson CD’s, or sometimes, Glenn Miller. Caring for dad was simple; just make sure he had a big cup of black coffee within reach. Cook him bacon or sausage and eggs for breakfast and he was good to go. Dad always did have an easy going personality. Me and my siblings always knew mom would be the hard one. She always has been a difficult person to be around. She will say mean things and rude things: “too fat; too skinny; not smart enough; or not pretty. But she can be, and often is, a giving person. She will defend her kids to the death. A few years ago I explained to both my sister and brother that mom is nicer now; nicer than she ever has been in her life. I figured it was because she knew her options were limited. She was frail and now she needed me. Having her live with me for the last six years has been easier than it has been hard; it’s been more enjoyable than not.
Regardless of how difficult she is, how hurtful and mean the words she hurls at me, she is my mom. Seeing this little 100 lb curled up ball of worn out old woman lying in the floor immediately dissipates all of the hurtful words and anger she flings toward me. This is my mom. This is the woman who put me before herself when she raised me. I breath in emotional strength and exhale the hurt. Today, she called my name every five to ten minutes. Each time was a complaint or hurtful word. Just picking at me. Just being Bettie. I breath in. My brother is coming today. To stay for a while. To recuperate from his own surgery and to be home with mom when I’m away. My brother is coming today.
Thankfully, this time there appears to be no fractures. She was up off of the floor within five minutes of the fall. She walked to the restroom with my assistance. This morning she got out of bed and walked to the restroom without my assistance. No fractures. Not her bones and not my emotions.
Hey there everyone. I’m back, though I have very few followers given I use this blog irregularly. I normally will write about animals, environment or nature and issues concerning those things. Today I’m adding to that writing list—-I will share some of my experiences about being a caretaker for my mom. This is a new role for me, sort of. Let me begin to explain.
My mom has lived with me since early 2010 but she wasn’t ill. She was simply older and she needed a small boost. It worked out fairly well. She was home with the pets when I was at work or traveled. There was no need for anyone to be with her all the time or every day.
Our relationship was always a bit rocky so back in 2010 when I first offered for her to move in I did so with caution. I also felt I needed something else to do so I started a master’s degree in environmental science. During introductions at the beginning of any new class I’d say, “well, my mom moved in with me and I wasn’t sure how it would work out being around one another everyday so I thought it would be a good time to finally start this this degree to have a place to go to in the evenings.” I finished that degree this past spring and my mom was too ill to attend my graduation. I felt saddened that after all this time of me working full time at my job and going to classes in the evenings, doing the field research and analyzing the results, and the writing and revising/writing and revising/writing and revising of the thesis, that my mom was not even able to attend the culmination of the work—my graduation ceremony.
After mom moved in with me my sister said I was a caretaker. I’d respond with “not really, because I’m not doing anything for mom other than most of the shopping.” That was then. That was before February 22nd. A Monday. A day I took off from work to take mom to the doctor to see if we could determine the cause of swelling in her feet. She did not keep the doctor’s appointment. She refused to go. She was in too much pain. She had fallen when I had gone to the store at her request. She also refused any help from the emergency medical technicians (EMTs) that came when I called 911. This is a typical response with my mom. Refusal of medical care. Non-compliance and combativeness—all normal behavior for my mom. After a day or so, I suspected she may have fractured a bone, but she still refused medical attention.
Her life changed that day, as did mine. I witnessed my mom’s severe and steady decline from that day forward and I did not know what to do or how to get her help. Our story will continue and it is constantly evolving, but now?
Now I am a caretaker.