Diary Of A Mad Caregiver

by Sue M
(Hampstead, NC)

I'm a sibling who is filling in for the martyr, I mean main caregiver of my 90 year old mom. Big sis is taking a much needed vacay and I now realize how very draining, both physically and mentally, it is to care for someone with dementia around the clock. Day one- I arrive from a 5 hour drive somewhat tired but still excited about spending time with my mom and full of plans to Make Her Life Better. Sis shows me where the medicine is, throws me Moms credit card and pretty much sprints out the door which I find amazing since both her knees are shot and according to her she is "absolutely exhausted"." Hmmm", I think to myself, " she seems to be in a mad rush to leave.

I haven't seen her move that fast since Walmart had the Christmas sale on flat screens seven years ago."

Mom is somewhat lucid today, has a good appetite and acts like she is happy to see me even if she doesn't know who I am. She goes to bed and I spend a few minutes praising myself and planning the next day's activities.

We will eat healthy foods, go sit in the sun, watch a little educational TV , do some simple crafts and listen to part of the music for dementia patients that I thoughtfully saved on YouTube.

Day 2- I wake up in hell. It starts at 4am when I hear a tiny voice saying " Pleeeeeeese help me, can you help me can somebody come now I need help can you help me are you there can somebody come can you help me I need help"

I stagger to her room to find her virtually swimming in urine. All three blankets, the pillows, the mattress pad, sheets, nightgown...

It's like a big fat urine festival in there and I'm gagging but trying to stay calm and I say "Mom, why didn't you use the bedside toilet?" And she looks at me with her tiny sweet face and says " because that's where I keep the bread" AND ALL TWO THOUSAND WEBSITES ON DEMENTIA CLEARLY STATE THAT YOU ARE NOT TO ARGUE WITH A DELUSIONAL PERSON so I fall right into that demented hole that goes nowhere and say " why do you keep bread in your bedside toilet?" And people, it just goes downhill fast!

Apparently the bread is kept in readiness for the men that come to get the money that was once there but now is gone because the neighbors took it when they cut the big oak tree that was growing in the cave when it was raining. "DIVERT DIVERT! REDIRECT NOW screams the kind of smart part of my brain...and I do, until the next time and the next and the next and the next.

Note to self: no liquids after 4pm. The rest of the day is a blur. Sis said mom loved to bathe and have her hair washed but the tiny tyrant refused so we did a sloppy sponge bath.

Sis said mom had a great appetite and breakfast went well but the healthy lunch and 3 course dinner went pretty much untouched. The soothing music somehow got her agitated, she got as far as the door for our afternoon in the sun and no further, the educational TV was too scary so we ate cookies and watched Beat Bobby Flay for four hours (apparently he is a good friend of hers, sold her a set of encyclopedias in 1951).

Sis said mom went to bed around 6. 3:30 in the afternoon and I found her in bed so I thought it would be a short nap. Not so,
she was down for the count but much to my delight was up and raring to go at 1am.

Day3- I might start drinking again. Enough said.

Day 4-starting to hate my sis. How dare she not even call to check on us??? Why didn't she tell me the dog has dementia also? I hate that dog, it paces all night and its claws click click click on the floors and its incontinent and it throws itself against furniture and it stares at me all the time.why didn't she tell me where the plastic pans were for sponge baths so I had to use a punch bowl instead?

Why did she stack all her clothes in front of the linen closet so I had to throw them on the floor and accidentally walked on them with my pee stained bare feet? How dare she put me down all those years I didn't work a "real" job but stayed home with my kids?

Why did she call me a hippie the other day and make a smart ass comment about stringing beads just because I like cargo pants and t-shirts instead of twin sets and matching SLACKS? Why does she know it all and I know nothing ?

Day 5- spending too much time online.read article on cleansing negative energy from the home so I tried it, pretty sure it didn't take. Spent 2 hrs, okay 30 minutes in prayer. That did help. For a little while.

Have started stalking classmates from 1972 on Facebook. And spying on the neighbors. Seven more days to go. Very seriously thought about hitting the ATM with Mom's card and hiring someone to help me but that would be irresponsible and the whole family would say I can't handle being a caregiver.

But the irony is that I am a caregiver for 3 ladies when I'm back home. Of course I can walk away from them after a few hrs but in defense of siblings that Don't Help Out.

Let me close by saying this. Yes, you full time caregivers have the hardest jobs in the world, especially if you are dealing with abusive parents and siblings that really don't care but I am seeing a LOT of resentment and anger on these pages.

I think it's great that you can come here and vent but Please please don't take it out on your parents..they might be the most horrible people in the world or maybe you're just exhausted but sometimes you have to leave that pity party behind and just get on with what you've been dealt.

Most of us siblings do care very much and feel guilty for not being more help but we have to get on with our lives too.we might not live close by, we might have to work to pay mortgages or help our kids get through school or take care of husbands with health problems.

I used the word "hate" earlier but I was mostly trying to be funny. Don't let your resentment turn to hate because it will consume you and ruin your life and make you a bitter bitter person. And by the way, I love my sister but sometimes I don't like her and sometimes she doesn't like me but she's a huge part of my life.

Who else would make me pee my pants from laughing and remember with me how it felt to be a little kid and every once in a while we can both feel like Kids again, even at the ages of 65 and 63.And I don't hate the dog, I just kind of don't care for it.

And I didn't really walk on her clothes with my nasty feet..or did I?

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Reaching out to Sharon
by: sue

For Sharon that left a comment, reach me at msue406@gmail.com. Sounds like you need to talk about it. If not, best wishes and prayers to you!

by: Anonymous

Thanks so much for the laugh. Love your humor. The part about your sister throwing the credit card and running out the door struck home. I'm the full time caregiver for mom.

My brother is coming to give me a two week break. This is the second two week break in six years. Believe me, the car is already packed and running. Literally the day he shows up, I'm gone.

I've left the medications, the debit card and pages of lists. Oh yeah, and I have a special-needs 15 year old dog, too. I swear we could all just play musical chairs into each other's lives and never miss a beat.

We are the most informed generation on senior care that there has ever been. Too bad we ourselves will just be wasting into oblivion soon, taking all these skills and knowledge with us.

Thanks from all the full timers out here who are simply ecstatic when a sibling steps in and takes over. Please tell your sister you'd be happy to do it again soon, anytime, even if you don't really mean it. It gives us hope to carry on.

I want to be your friend!
by: Sharon

I like your style and your sense of humor.
I'm an only girl with 3 useless, invisible brothers. Mom, 93, lives with me. She has her mind and she does incredibly well for herself. But she is a personality horror show. Her and I are oil and water.

She has a very demanding personality, nothing is ever good enough, I can never do enough for her, she complains about EVERYTHING. There are days I wish I were dead and then someone else could deal with her. I feel like I'm using up the last good years of my life dealing with her nonsense every day.

I have absolutely no outside support. I'm divorced, and have one daughter, who, BTW, can't be bothered either. She's out enjoying her childless life.

Anyway, just wanted to reach out and let you know there are others like you who do care and want to show support. Best wishes!

(I can't wait for this to be over.)

Still laughing
by: Linda

Can I just say that you have a wonderful way of turning tragedy into comedy without the usual amount of recovery time.

I think the people who are willing (able) to achieve this are much better at living through the most difficult parts of life and still manage to be a really enjoyable, fun person to be with!

That's why you are a forever friend. I moved twice and still seek out your company!! Hang in there and I'll see you when you get back🙃

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