I am not a doctor. I am providing information based on experiences that my mom has with natural remedies. The purpose of this blog is to help folks to educate themselves. Use this information with your own discernment.

05 March 2011


My Mom's Bathroom
... at least she didn't pee in the bucket!
I've been very tired lately, not getting enough sleep at night being the main culprit.  Sleeping with one ear open for my mom is beginning to wear me down, it's causing me bouts with insomnia.  It's horrible to be sleep deprived, ones entire day becomes a blur and the ability to think positive becomes more and more challenging.

Last night, I couldn't wait to go to sleep.  I had visited my cousin Maryann yesterday, we swam in her complexes indoor pool and soaked in the Jacuzzi.  It was nice.  Driving home, I felt like that Simpsons episode where Homer was sleepy while driving.  Every car that he passed on the road began to look like a bed... that's how I felt on my drive home.  I just wanted to sleep.

I didn't sleep, I kept control of my truck and made it home safely.

My mom arrived at 4:30 yesterday.  I had dinner in the oven.  I have noticed that when the house smells like a home cooked meal, my mom is less confused.  Getting her to climb the stairs to her room is easier when she smells food on the stove.   The smell of food being prepared sets the stage for a peaceful evening with my mom.

When I'm tired, I have less patience with my mom which triggers unwanted behaviors.  I'm aware of how my mood affects my mom; yesterday, I put extra effort into keeping my emotions in control.  It worked.

Mom was tired yesterday too.   Bedtime was a welcomed event for her and me.  I love my mom's bedtime.

1:30 am...  "HELLO?!"  Over and over again my mom called out in the dark of the night, waking me out of a sound sleep.  Rushing up the stairs, I heard my MIL calling my mom's name, she had panic in her voice.

I reached my MIL's room to see my mom climbing into her bed.  My mom was sleep walking, she didn't hear a thing, she saw the bed and was getting into it.

I grabbed my mom around the waist and pulled her off the bed.  I led her to her room.  My mom had removed her diaper; a nightly routine for her.  I went in to her bathroom to get a clean diaper to put on her before I tucked her in bed.  The diapers are kept in her bathroom.

I was groggy.  Walking into her bathroom, I noticed her dirty diaper on the floor.  I picked it up.  It was heavy... she peed.  I took one more step only to step in a huge puddle of urine... in my bare feet!  Ewwwwwwwwwwwwww!  I totally hate it when I step in urine in the middle of the night.  I was pissed (ha ha... ya, a play on words.)  At least it wasn't poo... stepping in her poo is way worse.  Yes, I have stepped in her shit in the wee hours of the morning.

My mom, her night gown was wet, she didn't pull it up once she reached the toilet.  God help me.

Getting a diaper back on her was nearly impossible.  She stood with her legs locked and stiff; she wasn't here.  She was sleeping as she stood.

"Ma, lift up your foot!"  I repeated over and over again.  Tapping the back of her calf, something that always seemed to get her to lift her foot in the past.  It didn't work.  I couldn't lift her foot, I couldn't move her.  Finally, I was able to put her diaper on, a clean night gown and tuck her into bed.

1:45am, I was cleaning my mom's huge pee puddle off the bathroom floor.  I didn't cry.

It's time for my mom to go to a home.  I pray that a bed opens up soon.  I need my rest.  My mom needs help 24 hours a day.  I worry that she's going to fall; slipping on her own urine that she sprinkles all over the floor or loss of balance when she walks.

I pray that she can hold out at her current Day Program.  The rule is, once she begins to wander, she will need to go to a different place that is locked down.   This week, the nurse told me that they keep the door shut in the room where the old folks sit; mom is starting to wander.  SHIT!

A change in her daily routine and the people she sees will create a huge setback for us.  Change is hard for my mom.  Routines make her calm.  She likes to know what's going on, even in her demented state of mind.

Please Universe... hear my pleas... please open a bed in one of the homes where my mom is on the wait list.  I can't care for her any longer.  I've done all that I can, even with help coming into our home.  Mom needs round the clock help, something that is increasingly more difficult for me to provide with each passing day.


  1. Your mother and Layla need to go to the same Day Program...
    I am exhausted also for some of the same reasons.

  2. Poor thing, this just sounds horrible, no wonder you're tired. Thanks so much for your lovely comments over my way, thought I"d check out what you had going on. You are a brave, good person-I never wanted to physically care for Dad and thank god I didn't have to. Take care of yourself.

  3. Susan

    My 89-year old mom had dementia. Yes, she died January 29th in her home. I've been taking care of her since 2002 and I was the lone family caregiver...it's a short journey compared to yours...I would assume you would relate to the movie "Ground Hog Day" where the day repeats over & over.

    I understand your pain and loneliness, I learned that I needed to let go of that anger and frustration...I would go outside in the middle of night and just yelled at the top of my lungs...I warned my neighbors nearby of my possible actions.

    If you can financially handle having a caregiver come in for a few hours or even better a whole day it will allow you to take a deep breath or just to take a shower or for me just have coffee at Starbucks with lots of people.

    Can I suggest www.care.com, it's an online resource for family caregivers...it can provide a caregiver based on your needs and they do provide a limited free background check...please check it out.

    You are on such a long journey and if I could I would give you a big hug. The death of my mom, did not end the caregiver inside of me...I haven't been able to sleep well and my "mommy ears" are still sensitive to any noise.

    If any friends, family or neighbors are reading your blog, here's a simple question you can ask her "Is there anything I can do for you"...and I hope you can say yes.

    God Bless You & step outside and YELL!

    Seek me on Twitter


  4. Thank you for your thoughtful comment, CareGiverGuy.

    My mom does go to day care 5 days a week, we also have home aides that come in to help every week day for an hour and on the weekends, 3 hours each weekend day.

    The Day Program helps a lot. My mom is enjoying socializing with her "work" friends. The nurses and aides are phenomenal with my mom, helping to give her more good days.

    The trouble for me is night time. It's when my mom becomes more confused and has incontinence; fecal and urine. The worst is when she steps in her mess and tracks it through the house at midnight, 1, 2 or 3 AM.

    Never did I want to wipe my mother's fanny. I always told her that when she couldn't wipe herself, she would need to go to a home. That day has come and gone... I am wiping her fanny every day.

    It's becoming increasingly more difficult for me because I don't want to do this job anymore. I am beyond burned out. Even the daily help is not enough for me; I need nights off. I need a weekend off to go away with my new husband.

    Friends and family don't ask "what can I do for you" and I can't expect them to ask this question.

    I have learned that my personal expectations of people lead to unhappiness and negative emotions. My emotions affect my mom; negative emotions bring more difficult behaviors.

    Initially, when I first began the hardcore caring for my mom, I wondered where my family was. I cried a lot. I got angry. I judged them and became more upset with the situation that I was in. My siblings and I were feuding. It sucked the life out of me and brought on depression.

    Care Giving is not glamorous. It's nasty to have to face ones own mortality. Fear seems to be what keeps people away. Maybe it's fear of getting "stuck" helping when they really don't want to help? I don't know, only friends and family can answer this question.

    I stopped looking to my family and friends for help; help rarely comes. Thinking about this fact causes me to have a pity party for myself. No one attends my party. No one wants to hear me cry or whine about being abandoned. Instead the advice extended has been, "just put her in a home." Not so easy when you are the one doing the heavy lifting.

    Before I put my mom in a home, I needed to try everything first. Home care is great but there does come a time when our loved one needs to be in a facility. I can't give my mom what she needs; constant 24 hour round the clock help.

    Lewy Bodies Dementia, the form of dementia that she has, is relentless; each phase coming on suddenly. Caring for her becomes increasingly more difficult with each change. Mom needs more and more help as she declines deeper into the grips of Lewy Bodies.

    Everyday I work on my personal happiness and focus on being the best person that I can be. Some days are a struggle; I am human.

    Fortunately my dad taught me when I was little that nothing ever stays the same, all troubles pass.

    This care giving time will pass and I will come through the experience wiser and happier with no regrets. I've made lots of friends because of care giving, many folks that I've never met face to face.

    My life is richer because of care giving; I am grateful.

    All I can ever do about anything in life is focus on myself and control my own actions and thoughts. I am responsible for my own happiness, no one can make me happy... just me.

    Thank you again CareGiverGuy. I have done all that I can and know in my heart that keeping my mom home with me until her last day on Earth, is not the right thing to do. She needs people around her, lots of people.

  5. Good Morning

    Thanks for your response. The one thing that I've learned as a caregiver there is no right or wrong way in taking care of your love one. I am very happy for you that you have found love...what a beautiful feeling.

    Sitting at a support group this lady next to me said "You are very lucky because you don't have any family...I have family and NOBODY helps me absolutely NOBODY...and they live so close!"

    I don't think you're physically isolated but you may be isolated by the task you conduct every night. I have to laugh about the "fanny" description because as "CareGiverGuy" I had to pretend that I was blindfolded when I gave her a sponge bath or when wiping her "fanny"...OMG she would get mad if she thought I was peeking.

    I assume you have considered having a caregiver come at night to help you out or even a weekend so you can spend time with your husband.

    Before my dad died, my brother and I promised our dad if anything happen to him that we would always take care of mom. The promise was kept...however, if it wasn't for our parents we would not be in the position of being college educated and with excellent careers...and MOM was always there for us when we were growing up...I needed to be there for her.

    Have a good day!


  6. Thank you for your comment - we do have care givers come on the weekend for 3 hours on each weekend day.

    From my observations with my mom, she does better when she has lots of people around her. She does well at the day program because they keep her stimulated and busy. She comes home exhausted.

    Night time is tough; I don't want to do night time care giving. It's way too costly to hire someone for weekend nighttime care giving.

    I will continue to care for my mom when she's in a home. I'll visit her and take her out. She'll have lots of people around her day and night.

    I am done with full-time care giving for my mom, it's way too hard even with help.

    I was like the woman from your support group, I whined and cried that no one would help. It put a big wedge between my siblings and me. I didn't want to chase my family away because after our mom does pass over, I will want to continue my relationship with all of them - I love everyone in my family. I have no right to judge them or anyone else.

    I realized that the only person that I can judge and control is myself. When I try to control other people, it gets me no where fast. I become more miserable and alone.

    Focusing on myself and working on being the best person that I can be, helps me to find peace and happiness.