For those who don't know me, my husband and I live with my mom who is 91 and has Alzheimer's and a weak heart. I take medication for depression but it still gets a hold of me. We rarely get out together as my mom can't be alone. My brother and sister live far away...brother gives us breaks maybe once or twice a year. Sister doesn't lift a finger. I've been doing this for almost 5 years and making other arrangements is not an option for me. My husband says I'll feel better in the spring. I don't know... Guilt goes along with the depression. If I don't do anything I feel guilty, but I some days don't feel up to doing a thing.
Sometimes I just want to screen! To make matters worse my L/O resents my so called taking over her life, and feels she can handle herself. Unfortunately 2 doctors, 2 social workers, 1 elder care counselor and family members say otherwise.
So yes, I’m fighting hard to keep me balanced.
stress related illnesses now. And he's always behaving passive aggressively
to force me to do more. He's angry I don't spend more on him (he has plenty of funds for his own care, but wants mine too) . And he's enabled by a small army of hangers on that hope to avail themselves of his money, which he has apparently misrepresented to be in the millions. *Sigh* . Trying very hard
to gain a sense of humor about it. As we all know talking about anything other
than weather with narcissists just adds fuel to the fire. Caregiving can be depressing enough as it is.
She apologizes for asking for a drink of water but that is the least of my problems!
I want her to move around. I want her to get up and go to the bathroom before she’s busting at the seams! I want her to stand up and sit down often enuf that her legs will support her.
She has her mental faculties and no life threatening ailments, but she sits so long she can’t walk to bed.
It’s bad enough that I’m in charge of all repairs with no experience and little money but now I’m wondering why bother? Why worry about the yard? Why should I fix the sprinklers if she doesn’t care enough to take care of herself?
I find myself berating her for killing herself when I want her to be comfortable. Now it seems I’m up all night every night dwelling on her deterioration and staying in my room all day so as not to yell at her.
It’s not helpful to bite my tongue because I’m still angry inside.
She’s had pt often enough she knows she has to use it or lose it but she refuses to do it!
Yes I’m depressed. I hate watching her becoming infirm and feeble just because she’s lazy!
As well as several ailments, both of them have dementia and both of them have decided they cannot move around at all.
However I know my husband has depression which he says makes him feel as though he is trying to move through 'silly putty'.
The not moving to help themselves may also be the frustrating part of mental issues.
I get angry because my husband says 'he can't' take a shower. But he can get up and ask me what I am cooking for supper or watch Netflix.
I don't think we can make sense of these things.
The Rest of My Possible World
I dreamt of grace and wisdom.
My mother’s virtues, surpassed.
Yet now I face each troubled day.
And cannot find the heart.
Not refined, knowing, good.
I failed to reach the best I could.
I am not one who rose above
I’ve rarely touched the best I can.
Dreamers live for what should be
And toil to make it real.
True hybrid breeds improve growth
Spreading forests in moral soil.
I wasted time believing ours
Would thrive from our Great Love
I never braced my own two feet
To stand in my own earth
The concealed weeds, parasites
Have sundered spine from limbs
And mortified our spirits through
till life is sand in open hands
And health is our despair.
Would-be grace succumbs to pain
Lost memory hobbles wit
And virtue has no tread where vigor’s grip is lost
Hope for joy now passed to offspring’s eyes.
May they persist in strength, and wisdom reach;
and health and courage keep their road ahead.
I know this was posted 8 years ago but I just read the phrase "Screaming Into the Night" and I must say I Laughed Out Loud.
Sometimes I wish I could run away but Mom needs me.
My life is basically over. This is just reality. I'm coming to think that caregivers don't have lives.
I’ll take your word on the promise that if you write a book I can count on a copy, hopefully autographed!
My agenda with contact names has become one where the “U” (as in Useless, to your very well made point) includes uncountable pages..!! I completely empathize.
But your story about the bed being wet, your sister not grasping WHY you were crying, her not caring to to a thing about the bed or your mom AND!!!..leaving to get dinner..not bringing you any and going to her bedroom to eat...!!! Lord Almighty, It’s hard to believe things like this actually happen in life. I’m so, so sorry Mojorox from my heart!
All of the sudden you completely made me realize I am actually lucky to not have anybody that I “should” be able to rely on. What I mean is I know that there are plenty of people that if they had a conscience and a heart and know my situation, I’d imagine and hope would be willing to help..but I’m an only child, all of that would be a ‘great to have’, not a ‘should have’...because that simply opens widely the door for deep disappointment...as if the situation of being a caregiver wasn’t enough reason for a heartbreak!
Hope that makes sense.
My mom’s birthday was yesterday, I worked SO hard, honestly, to make the day shine a little for her. She literally had spent at least two weeks literally in bed, not seeing the sun light, feeling bad. So finally got her in decent physical shape enough to get up, get dressed, and have a couple of her friends over to break her sickness routine for a day. I realized once again how lonely I’m in more than a thousand ways. People simply don’t realize what my world, our world is, and I also realized that I cannot hope for an ounce of understanding.
It’s a lonely life Mojorox, but at least we know there are others that are living what I like to call different shades of the same story. At least a little consolation!
I don’t keep writing because I’m so tired I need to close my eyes. Hope your week is going better. Take care!
If I ever had the gumption to write one I'd send you a signed copy promise.
Continuing from where I dozed off.....of others took an interest then heaven forbid, they might have to participate and contribute. Much easier to tell themselves everything is fine when they see nothing. If and when they find out how hard it's been and how hurt you are, then they can whip out the "well, I didn't know" defense.
I am very familiar with the token effort as well. People have offered to help and if I don't have a specific task right then or distractions get in the way, later when I say something, I get attitude with "well, I asked you".
There are days where I am desperate for help and other days where I believe it's better for my sanity that they stay away.
Being invisible is an awful, lonely feeling bit it was better when I could tell myself that they just didn't know what I was going through. Now, that they've seen first hand all the work and effort, along with all the stress and sickness, liberally coated with cries for help, and they CHOOSE to ignore it, I feel worse than ever.
At first, they gave me props. Thanked me. I felt i had a support system. I dont know what happened. But as I grew weary and began to ask for help, the props lessened. As I began to get frustrated and react, I was abandoned. Unless, they need something of course.
Here's an example from last summer's fiasco when I needed to purge mom of her hoarding ways....at this point I had spent 2 weeks holidays working at home. Every day, every waking moment, never left the house except to walk the dogs (and one was my sister's). I had returned to work on week 3 and was 4 days in still having to do EVERYTHING while sister did ???????
At this time mom was very wobbly and was having troubles getting around, dressed etc. The incontinence was ridiculous. A constant stream of accidents and a wet bed working me to death.
Thursday night, after a full week of work, doing sister chores, mom chores, my stuff, maybe eat at 2am, I'm exhausted and one frayed nerve is all I have left. I've done the priority tasks and that's good enough for the evening. I just can’t do one.more.thing. I just need to make it through one more day of work and then I can breathe.
Before I make my great escape downstairs, mom takes a little spill in her bedroom. Mojorox to the rescue! While helping mom up and off to the washroom, sis emerges from her room (staying with us at the time) and surveys the scene. Mom has wet the bed I had just finished changing…….I can feel the emotion rising like Vesuvius and tell mom I’ll be back in 15 minutes to clean the bed. I go downstairs and begin to shake. I pour myself a giant shot from the liquor cabinet and begin to cry and can’t stop. Trying to count to 10 and remember to breathe. Sis walks in and looks at me in surprise “Why are you crying?”.
I have no words. I can only look at her in dismay…She exits. I finish my shot and pull it together. I go up thinking sis has started to change the bed and it’s always easier with 2 people.
Wrong. So very wrong.
She is nowhere to be found. She actually left the house without telling me after mom just had a fall and there’s a wet bed to contend with!!!!
I change the bedding and throw all the wet stuff out in the hall. Done. That’s when my sis walks in with food in hand. Now she has the room across from mom’s so she has to step over all the sheets, blankets, pillows etc to get to the door. “Do you need a hand changing the bed?”
Ummmm. No, I’m already done. Duh.
Does she follow through her offer to help by taking the soiled down to the laundry room and start a wash while I get mom back to bed?
She goes into her room to eat her dinner or whatever. Since I’m starving and was not offered any, I proceed to cook my own damn dinner.
It’s 2am on a work night.
This is when her name changed to useless.
This was also the night before I found out that she was leaving and would not look after mom for my last week of holidays.
That was when I told her she was no longer my sister.
It would be too easy to say that I feel invisible. Instead, I feel painfully visible and entirely ignored. In my moments of greatest need.
I know that I said I would try to not dwell on the negative but I am having a hard time.
We are experiencing a minor crises with mom’s legs and my sister who has been too crazy busy at work to help me has gone up to visit useless these past 2 weeks and help her instead. She’s supposed to be my back-up with mom and couldn’t even bother to tell me she was leaving out of town. Wow.
With a very heavy heart I say “People Suck”
Depressed? Doesn’t even begin to cover it…..
And don’t worry because I literally fell sleep as I typed the last few sentences of my previous message. Next day I didn’t know if I had finished my thought and sent it...just part of the madness and tiredness of our life!
If you do write a book please make sure it can be shipped overseas or bought online! ;-)
Hahaha haha. .....fell asleep and didn't finish the message. Must have hit send by accident. Late for work too today.
Just another day in the life......
Will try to come back and finish the thought later.
What a cool compliment, thank you. Wow, I forgot what it felt like to be noted on something that doesn't involve mom. Like I'm actually a real person.
"A Wrinkle in Time: A Caregiver''s Descent into Madness"
Written dear diary style and saying all the things that caregivers don't say aloud.
People have selective attention. They see and hear what they want. If they paid attention to you and your mom's situation (existence? )