My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

343623215_008a03ff09My mom is currently residing at a geriatric psychiatric unit. She is wearing diapers. She is pleading with everyone to get out, and she is running for every open door. What led to her “commitment” (it’s a temporary deal until her meds are properly adjusted) at the psych ward was a series of disturbing events that even I wasn’t prepared for. I continue learning that it can always get worse.

Mom had only been at the home for a little over a week, but during that time she was banging on doors, becoming aggressive with the other residents, breaking her picture frames, and she even tried to make her great escape. Despite being demented, she was clever enough to walk out the secured door with a family who was on their way out after visiting a family member. This little Ecuadorian broad made it out into the lobby before she was apprehended and returned to the confines of her memory care unit. Dammit. I went to her. I went before work and after work. I tried to calm her down. I tried to reason with (yes, I know). I hoped my visits would put her at ease—just knowing that I was there, that I was coming by, that I was near—I hoped would give her some comfort. My efforts did absolutely nothing. She stuck her hand down her diaper. She tried to wash out her butt with water, next she sat on the toilet and showed me her poop. And in a moment of lucidity, she said: “You did this to me. You put me here. Why did you put me here?”

The woman got to me. I thought I was detached enough… in fact, I was scared that I was too detached. I didn’t cry when we placed her. I went home and watered the dirt in my garden. I rarely weep for my mom. When she pleads with me for something, I won’t budge. I won’t cave. I just do the job that has to be done and try to get on with the everyday bullshit of life… you know, the one where I get up, go to work, and pretend to be normal.

And so it goes…

The nurse and owner of the home had wanted to send her to the psych unit in hopes stabilizing her mood… specifically her anxiety and aggression. I knew it had to be done if she was ever going to adjust and settle into her new home. I hated the idea of it. Still, I want her to be as content as she can be… even if it means forgetting about me, my dad, and the life we had—for better or worse—together.

314004290_de2b818096“I am crazy, I am crazy… I wanna drink. I am crazy, I am crazy…” The skinny old lady sitting down singing I am crazy over and over and over and over again had a giant needle inserted into her arm while clear fluid dripped down a tube and into her vein. She wore brown socks.

Susan had no hair, but a generous amount of chin hair. She was a’ight. Wearing bright pink PJ’s and with her blinged out shades on, Susan wheeled herself over to my mom and told her that she loved her. “I love you. I love you.” My mom hugged her. “God bless you. Is that the door?”

When I arrived earlier, I found my mom walking around with a hospital sheet covering her shoulders. She knew who I was. “Mihijta, I am going home with you. OK. Let’s go.” The nurses wanted me to stay to talk to the doctor. Mom isn’t exactly the most coherent person on the planet these days. She mixes up English and Spanish with random words that make no sense. For the most part, I can understand some of her nonsensical language, but other times, I nod my head in agreement—“atiyunoue thedrfiop ewpombnc da’peuld aseftghing?”

I’ve never been inside a looney bin. Seeing my mom there, laughing at nothing. Waving at some invisible being and insisting we hold the door open for this friend of hers was just plain weird. The doctor had a heck of a time with her. When we walked out of the tiny room where he evaluated her, I asked him if he thought she was demented. I don’t know why… sometimes, I don’t know what’s normal anymore. He said she is severely demented. Late stage.

His diagnosis made me feel better. Gave me some strange comfort because it means I did the right thing in placing her at the home and consenting to her going into the bin. I think you just reach a point where you lose your internal compass, like you just don’t know what’s up and down, north or south. You think certain behaviors aren’t that bad. You think, “well, she’s not that far along.” You think, “oh, she’s always been like this.”

She’ll be inside the bin for about a week. I hope we can get her stabilized. I hope she can participate more fully in this final chapter of her life.

My mom is slowly destroying me. I don’t sleep well. I am getting a talking to at work about expectations next week. I am tired. I can’t focus. I can’t think. I moved out her to make things better. I could not fully participate in or heal my relationship with my ex-fiance. My demented mother is taking down the entire ship. How do you care for someone who you don’t even recognize? How do you show love or compassion to this woman who is really a stranger. I vaguely recall what she was like before becoming demented. How do you willingly walk into a psych unit when you know she is draining you of energy? She has the power to destroy me. She gave me life, a life I should appreciate and participate in more fully… yet when I think about death and dying, it doesn’t scare me. Instead, I think peace and quiet.

~Photos taken by Meredith Farmer, http://www.flickr.com/photos/meredithfarmer/

13 thoughts on “Inside the Bin

  1. Colby says:

    I felt like I was just reading my own story – in particular the self-doubt that seems to creep up. Did we move too fast? Maybe she’s not that far gone, yet? I ask those questions so often. And there are times where she’s so far gone, I know we didn’t make a mistake. Doesn’t change the emotions, though. I’m glad you wrote this, though. I’m glad that you blog about it. I know that when I write about my mom, it is carthactic in a way.

  2. Thank you for the photo credit!

    - Meredith

  3. Oh my!! My heart turns over for you. I too am just beginning to know that fuzzy hazy feeling of the brain fog where it’s hard to think, make decisions, spell etc. You have done the right and only thing you could do. Have you had a health check recently, blood tests etc? Look after yourself and I send you a big hug.

  4. 1eyedmonkee says:

    I wish I could fast forward your life to when some of this pain was dulled and you could move through a day without it eating you alive.

  5. Lori La Bey says:

    My heart breaks for you and your family, and I have been where you are. The feelings of desperation and loss of hope can be overwhelming. My Mother has been dealing with memory loss 30years. The last 15 formally with Alzheimer’s.

    I am no psychologist just a daughter who has been there. My conclusions and tips to deal with your situation after reading your story, though you may not want to hear them or accept them, are as follows:

    Your Mother is not killing you; you are doing that all on your own. My guess is through your loss and burden of guilt you have, we all have had it, felt like we were drowning when dealing with Alzheimer’s. Emotions like guilt and jealousy torment us, and don’t help us move on. It’s that negative inner critic in each of us saying we are to control and have the answers for everything all the time. Nothing is further from the truth. Realizing just this was a true gift to me in my life and that is coming from the “fix it lady.” Wow, what a relief to not to carry that burden.

    I am a full believer one must feel the pain to move through the healing process. It sounds like you are definitely to the point of no more denial and willing to feeling the pain. “Kudos to you”. This is not an easy place to get or a fun place to be. Your writing is exceptionally honest and free flowing. I hope it felt healing for you to put into words. If it were me, I would have probably collapsed after getting it all out and have gone through a box of Kleenex or two.

    The next step I see, is realizing you can’t control your Mother’s progress or reactions, but to acknowledge the woman who was, as well as the woman she is now, and will become in the future. This person will change like the wind, and it is ok and you can learn to love her and appreciate her in this new child like state, if you want to.

    You can create remarkable moments, even if others tell you it is not possible. I know, I do it all the time with my Mother who is in her final stages. I laugh more with my Mother now than most anyone else. I choose to be silly and make her smile. That brings me hope, sanity, and a love so deep I can’t even explain it.

    If you can get here, the guilt and pain slide away as you know in your heart things are what they are. They are not here to punish you or hurt you because you did something wrong or don’t deserve a good life. I’m assuming you have had these thoughts, most of us do. They just are what they are. Pushing our ego aside is no easy task. Making it about them and not us, our pain, our loss… is a difficult thing to do.

    You may say it’s always been about your Mom and for her. I ask you to look deeper, as I’ve been there… justifying all I’ve done on my Mother’s behalf. The checklist of tasks to do, the sleepless nights, the doctor appt, the shopping, and cooking…. well you know the list is endless; and in my eyes at the time, it was all for my Mother. Don’t get me wrong the things on the list were for her, but I made a list of what these tasks made me feel. If you do this too, you will probably find a list not about her but your pain, loss, and exhaustion…frustration…resentment… This is what our minds hold onto and these negative emotions spin us downward in a cycle that feels it could swallow us whole and maybe already did and we just don’t know it yet.

    Realizing “Done is better than perfect”, and perfect really does not exist in a repeatable fashion, but only in one particular second in time, because nothing stays the same. This was huge for me. As a perfectionist, again, not an easy thing to let go of the control, but looking back most of my fears of perfection did not really matter. No one would care or notice other than me and it usually did not affect the outcome. What a time saver that lesson was! Letting others do things that might be different from the way you do them but still gets the job done. Whew… I feel lighter just thinking about that.

    If we can let go of our ego and play in their playground, as strange as it may seem at times, we will find the peacefulness returns not only to us but also to the patient. Seeing an Alzheimer’s patient through the eyes of small child, one that doesn’t judge but is out to enjoy and explore and have fun. One that is not driven by responsibility, duty, and guilt. One that just loves unconditionally. This step is amazing.

    You had asked how do you visit a woman who does not know you. I ask you this. When did a name become so important? We all have such deeper connections to one another, but we are all so busy, we like short cuts… like names. We need to look at the eyes, and the smiles, and the wrinkles, and the dimples… and the gestures. We need to look for what makes them calm. Just sit and be still, knowing just being with your Mom even if you aren’t saying a word can bring her peace. REMEMBER, it is much easier to have that outcome if we walk into their world with a calm and peacefulness within ourselves.

    We know negative energy can be spread easily. Positive, happy energy can spread like wildfire too. Put on her favorite music. Tell a favorite story; pull out old photos, which might help her reclaim a memory. Hold her hand, lotion your arms… be soft and gentle and calm yourself. Do all of this with a smile on your face and you will see a change! If you can get here, to this place, you are now visiting out of unconditional love with no expectations, guilt, and duty of the “good daughter. She has disappeared and you will free a freedom and depth of love you may never have experienced before.”

    Below is a story, which will be in my book on Alzheimer’s, which I hope to have completed by the end of August 09. I have found in a very strange way that my Mother’s disease has actually been a gift to me and how I now look and the world. She has taught me a new life philosophy I call PLLAFULL – which stands for the powerful last lessons of acceptance, forgiveness, unconditional love and letting go. I hope you find these comments helpful. You sound like a wonderful daughter. One that deserves to enjoy her Mother, all she has been, and all she will continue to be. My thoughts and prayers are with you and your family.

    As The Cookie Crumbles –

    On a warm July morning in 2008, the wind blew softly but the clouds told a different story. The bright blue sky overhead was in direct conflict with the heavy grey clouds to the northwest. The humidity was low. People were buzzing around as my daughter Danielle, her Father Tom, and myself all approached the waterfall. I so love that waterfall. It holds a part of my soul but that is another story all on its own. A huge circular patio cradles the waterfall. Beautiful plantings are nestled in the rock. Benches dedicated in honor of loved ones, a wheelchair glider, and many tables and chairs make this location comfortable and accessible to family and residents. It is a rare occasion weather permitting, that someone is not taking advantage of the setting.
    Today the stage is set with tables lined with plastic table clothes. The grill sizzles and smokes with fresh brats and burgers. Coolers are in place, packages of buns line the serving table. Staff hustled to prepare for the picnic.
    Second floor residents are being escorted out in a stream as wheel chairs are pushed one after another onto the patio. You can feel the energy level rise as each person approaches the waterfall. Staff scurry back into the nursing home for the next batch of partygoers. The elevator hums until everyone is out, enjoying the fresh air and the beautiful setting. Straw sun hats are passed out. One man is moved as his eyes are sensitive not only to the sun but to the smoke from the grill. Like most of us though, the smoke seems to follow him wherever he goes. A staff person runs to get the man’s protective glasses. He comes back with thick, snug fitting glasses, which block the sun and smoke from his eyes. A large smile settles on his face, as he is finally able to enjoy the environment and picnic with his peers.
    Juice and pop are being delivered with large oversized bibs. Grandma is doing well. She loves being outdoors. Danielle and Tom are visiting with her as I put bibs on residents and start taking photos of everyone. Danielle and Tom talk to Grandma, as a staff person approaches asking Mom which she would prefer to eat a hamburger or brat. My Mother replies, “Not hungry.” “Boy that’s a change”, screams from my daughters face. She hadn’t heard that one before. Usually, Grandma would forget she had eaten and wanted another plate, at picnics. Danielle restates the question to Grandma but the answer is still the same. “No, I’m not hungry,” Grandma, states sternly.
    Tom and Danielle ask for a burger anyways thinking they would try to get Grandma to eat. When the food arrives, Grandma stands firm. She isn’t hungry, but Danielle persists and reminds Grandma she likes fresh grilled burgers. Grandma purses her lips but Danielle gets her to try one bite. Grandma just did not want a burger. Next, potato salad. “No.”
    Danielle asks, “How about watermelon Grandma? You love watermelon.” This time, Grandma Nibbles on a few pieces.
    I could tell Danielle was disappointed in Grandma’s lack of appetite and was probably wondering what this change would bring next. Then the cookies came out. I haven’t seen Grandma pass up a cookie yet, and she didn’t this time either. Grandma nibbles on the cookie, holding Danielle’s hand, and talking. Than a piece of the cookie crumbles and falls onto my Mother’s chest. Danielle’s goes to pick up the fallen chunk and my Mother blows up at her. She loses it. Danielle is upset and confused. She and Grandma have always been close and this was a new behavior for Danielle to see. Grandma’s comments were flying and not nice. Grandma told Danielle, “I hate you!” as she tried to pick up the cookie.
    Danielle rushes over to me where I am visiting with another resident. Tears fill her eyes, and her lips are quivering and she is visibly upset. “Mom, I didn’t do anything Mom. Grandma just blew up at me. She hates me Mom. She said she hates me! Really Mom, I didn’t do anything,” and tears begin to stream down Danielle’s face.
    I wrap my arms around my daughter and ask, “What happened honey? I’m sure it wasn’t you, but tell me what happened.”
    “Mom,” Danielle said as she took a deep breath. “We were just talking and laughing having a good time. We were holding hands. She was eating a cookie and a chunk fell on her chest.” Danielle paused briefly, “I just went to pick it up Mom. That was all I did. She started yelling at me. She just blew. I’ve never seen her like that Mom. She scared me Mom. “
    “Danielle, I’m sure it wasn’t your fault honey. Grandma did the same thing to me a few weeks ago. I was massaging her arms, legs, and hands. She was so relaxed, smiling, and singing along with the music as I rubbed lotion on her. I asked her if she wanted me to do her shoulders. She looked at me like I was nuts, and said with a big smile, “of course.” I stopped massaging her legs, got up off the floor and went around to her backside. I rubbed the lotion in my hands to warm it before I touched her shoulders. Grandma instantly stiffened up as soon as I touched her. She began yelling, “Damn men. Leave me alone!” And she went on screaming. I leaned over her shoulder, looked directly into her eyes and with a big smile said, “Hey Grandma, it’s just me massaging your shoulders. You told me you wanted your shoulders done. That’s still ok isn’t it?” She looked into my eyes, smiled back at me calmly, and said”Sure.” I could see the change in her eyes, as if someone flicked a switch. Angry… now content.

    “So tell me Danielle when you went to pick up the cookie were you still holding Grandma’s hand?” I asked. “No” Danielle said, “I had to move around the wheelchair.” “So Danielle were you still talking to Grandma when you picked up the cookie?” I asked. “No, there was a break in our conversation, so I thought it would be a good time to pick up the cookie, Mom,” Danielle responded. “And when you went to get the cookie Danielle, were you still looking in Grandma’s eyes?” I asked. “No Mom. I was looking at the cookie,” Danielle said in a frustrated tone.
    I told Danielle, “That is the same thing that happened to me honey. Grandma lost connection with both of us. When I was massaging Grandma, we were talking, touching, and we had eye contact. Our connection was strong. Then I stopped massaging her, I got up not looking her in the eye anymore, and I stopped talking to her to boot. In that millisecond, Grandma forgot I was there and what I was doing. Let’s go back over by Grandma Honey,” I said.
    Danielle and I walk arm in arm back over to see Grandma. Mom’s face was still red from being angry and she sat with her arms crossed. I said in a low gruff voice, staggering my words, “Hey Grandma, I here you told Danielle you don’t like her?”
    Grandma looks up at me still mad and says in a low gruff voice, staggering her words, “That’s right! I don’t like Danielle!”
    I said in the same tone, “I know you don’t like Danielle, you love Danielle!”
    Grandma responds with that big smile of hers, a glint in her eyes, yet her voice still low and gruff as she staggers her words imitating me, “I know, I don’t like Danielle, I love that Danielle!” I could see my daughter’s heart melt as her face lost its tenseness. I could almost hear Danielle’s mind scream, “Thank you God.”
    Danielle now understands Grandma still loves her. It was not what Danielle and I did, but rather how we did it, and that, can be changed. Once we understand where and why the anger comes from, we can than change our approach. It is actually very simple once we open our minds, letting go of our egos, realizing things can be accomplished in several different manners. Remember, it is not what we do, but how we do it. Multi sensory connections are critical as the disease progresses.

  6. Maritza says:

    Hola! Where do I begin? I feel for you. I came across your blog at another site. No one can understand all the ups and downs, physical, emotional, spiritual, and mental! that we go through unless they have experienced it themselves step by step. Hang in there! My Mom is in the late stage (i call it the infant stage). Everything has to be done for her. Fortunately, we have a home health aide. Just continue to be your mom’s advocate as best you can. Eventually your mom will accept her new surroundings. Peace

  7. sue says:

    Thank you all for the insight. My mother has been getting worse over the years and moved in with me about a year ago. It’s hard being single and trying to work and juggle her. She is confused most of the time..still looking for my deceased dad of 5 years. They were married since 18 yrs of age. It bothers me that I don’t feel I can keep up with her care as someone else can. I am starting a new job at the nursing home near me and am hoping she might be happy there. She could do assisted living because she is independent in her dressing and eating. Although she gets confused about when she is hungry and when not. Her appetite is good. She’s diabetic and it’s hard to get her to comply. She helps herself to sweets. She also drinks alot of coffee.
    I can leave her for a few hours and she will watch tv and play with her poodle, maybe swing on the porch. She doesn’t wander yet. My yard is large, fenced and does lock. I am suppose to be enjoying my senior years…how can I enjoy them..it seems like a nightmare. Sorry, but I am having a hard time with it. I don’t want my children to experience this at all. God bless you all. I pray everyday for the best thing for us.

  8. Kathy Ritchie says:

    thank you sue. i am so sorry for what you’re dealing with this. it’s not fair. i hope you are taking care of yourself when you have those precious moments, please try. kathy

  9. Spot on with this write-up, I truly feel this site needs a lot more attention.
    I’ll probably be back again to read more, thanks for the info!

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