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 December 2010

Tough Week

This last week has been a tough week for me personally.  Cleaning up human feces has taken it's toll on me, I just don't want to do it.  I never wanted to clean up shit, especially shit that wasn't my own.  But, I have been cleaning and gagging, not feeling much like eating.

I am not feeling too well.  I'm tired.  My stomach has been in knots.  The help I am now getting, seems to have arrived too late.  Too late in the sense that I have lost my will to continue to care for my mother.  I'm tired of her waking in the wee hours of the morning, greeting me at the top of the stairs, fully dressed with a coat on ready to go outside.  She always believes that I have left her, that she's been left alone somewhere and she needs to get to some past home that doesn't exist for her anymore.

I'm sad that I can't handle caring for her.  I'm burned out.  Everything bothers me, probably because I have been cleaning up fecal matter that is not my own... I vowed that when this happens, my care giving had to come to an end.  But... I'm still cleaning shit, ignoring my vow.  No wonder I'm so unhappy.

My mom believes that she can do things on her own.  She doesn't understand that everything that she was once able to do, she has difficulty doing now and needs help.  She needs help in the shower.  I can't wash my mother's ass.  I don't want to clean shit off my mother with a face cloth.  Seeing my mother's wrinkled old body, naked, is disturbing.  To clean her while she fights me, sucks.

Thursday, my mom was upset that she had a care attendant.  She didn't want our respite worker to help her.  She was a total bitch toward me and her.  I can't care for my mom without Belkis' help.

Lately, my mom can't swallow pills without coaching.  She forgets what to do.  She forgets how to sip water first and push the pill in her mouth like a bullet to swallow it down.  It takes 5 or more minutes for each pill to go down.  It is distressing.

It sucks.

It sucks when she gets paranoid, believing that I'm stealing her money.  How could this be?  She is costing us money!  Money we don't have, money that I can't earn because she sucks up so much of my time with caring and cleaning.

My mom has a wallet still.  I hold it in my purse for her but something always triggers suspicion, she doesn't trust anyone, not even me.  To avoid a big battle, I give her the wallet back.  She sticks the wallet down her pants to "hide" it and keep "them" from taking it.  I'm waiting for the day that the wallet falls in the toilet and she shits all over it.  I'm so done with this... I don't want to do this anymore.

Taking her wallet from her is akin to the arguments we had when I was taking her car away.  It's a battle.  It's her last thing that she feels she has control over; the wallet has to go.  I'm sick of looking for it.  I'm tired of her accusing me of stealing her wallet.

Lewy Bodies Dementia is a horrible disease.  I pray to God that I am not afflicted with this debilitating disease of the mind.  I apologize now to anyone stuck with caring for me.  I apologize for driving you insane and causing you to cry.  I'm sure I won't want to go to a nursing home too.  Who would?  But, I won't blame you for sticking me in a facility.  Please, make sure you find me a nice place, a place where the nurses and doctors understand Lewy Bodies Dementia.

I'm tired.  I'm saddened because I couldn't help my mom.  I was able to slow the progression but not stop it.  I'm sad because I missed out on so much of life over the last 3 years because I chose to be a Care Giver.  I'm angry because I feel trapped and in a hell on Earth.

Uncle Al, my mom's brother.  He is now in hospice.  He is in the final stages of this disease and it's awful.  He's in pain.  Grimacing faces that leave us feeling helpless.  My mom, she wants to see her brother.  I'm scared to let her see her fate.  I pray that she passes before she is unable to walk or talk, unable to live a quality life like Uncle Al.  Uncle Al even told Maryann, "I don't want to be like this."

The Crazy Gene is scary.  No wonder my mom talked about it my entire life, frightened for all of her off spring and the potential we all have for losing our minds, causing so much pain for loved ones who stand by and watch the cruel decline.

There's one thing that I hate in this life, Lewy Bodies Dementia... it stole my mom from us and has the potential of taking hold of the lives of others in my family that I love.

All I can do is pray, eat right, get plenty of exercise and make sure that I have lots of social interaction.  I will do all that I can to dodge the LBD bullet.  I hope that everyone in my family with the crazy gene heeds the warning, it's not too late for us, but it is too late for mom and Uncle Al.

This has been a very tough week, however I am grateful for one person in this world... Uncle Al's grand daughter, she brings laughter and happiness into my life.  She makes me laugh and feel happy.  I love Uncle Al's little Princess.  I love her imagination and her ability to learn.  Her smile and little voice are a gift to our world that is full of illness and sadness.


  1. Dear, I've been where you are and I'm tell you this from a completely compassionate spirit. You need to find another way. This is killing you, if not physically then spiritually and psychologically. No one will blame you of you put your mother in a home. No one will think of you as a loser, or a quitter, or as someone who doesn't love your mother.

    Please consider doing this, if not for you then for your mother. I had to. It was the hardest thing I've done, but it was the best decision I made for all concerned. Fortunately, my mother's illness wasn't dementia, but a stroke, and she was able to move back in with us. But for three months I got a break and she learned not to be so demanding and to not take me for granted. A different situation, I know, but I understand your angst.

    Keeping you in my prayers.

  2. Oh, Susan, I believe that SK is right. You did some remarkable things to care for your mother, but there comes a time when nothing will halt the progress of disease and age. You have shown an amazing love and caring nature, always doing your best for your mom. The price you have paid has become too high and it will only get higher as her illness will continue to take more and more of your mom. There is no value for either your mom or yourself by continuing to struggle with the decline. Your own health and sanity should not be sacrificed in a battle you cannot win.

    I am keeping you in my thoughts and hoping that the right path becomes clear very, very soon.

  3. {{{Sue}}}

    Oh the many times I have read your blog and thought to myself, WOW what diligent and meticulous care she gives. I stand in awe actually of what you have done in the care for your mother and your situation.

    How true you are. There is nothing we can do to stop Lewy, all we can do is slow him down. You have pushed, pulled and tugged it back for so long now. I know you are exhausted.

    My prayers are with you that you will receive the peace you need to make the decisions that are in the best interest of not only your mother, but for you and your husband also.

  4. It makes me so sad to read this post. I was so hopeful that once the help arrived for you that you would find some peace. I know how difficult it is and everyone has to reach their own timeline. I think your time has come. You should do this guilt free and with no regrets. You have done so much more for your Mom than many others would have done.