Overriding a parent's desire to remain at home: Caretaking for a difficult person to please.


Mom’s 80 yrs old and lived through a lot in her life and has fought to overcome each challenge. However, after a couple rounds of Bell’s Palsy and then shingles, she never regained her vitality. Depression and the constant, but reduced pain of shingles, deters movement and 100 lbs more than her frame or her heart should carry. She has allergies, emphysema, COPD, and hypertension. She is angry that she can no longer be independent, control her finances, be mobile on foot or car, and is incontinent and cannot take care of her personal hygiene nor revive her health. In her frustration, she attempts to get the mail, do laundry, clean the house, and constantly falls without knowing why… or so she says. Mom cannot roll over or pull herself upon a chair, or push to stand up from a squat to help others to get her back up. We have a live-in, 24 hr caregiver who is a saint for trying to tolerate mom’s increasingly angry tongue and failing body functions. The caretaker helps with meals, light cleaning, bathing, laundry & personal hygiene. She is impatient – and wants what she wants, when she wants it. As soon as the caregiver takes a break for a meal or brief 15 min walk, Mom will sneak to try and do some kind of household chore (put laundry in the dryer – or pick up a piece of lint on the floor) and falls. The lack of balance leaves little for a formerly fastidious housekeeper to do without falling. She has no hobbies, no friends, is paranoid about others intentions, and is more easily confused as she gets older. She had 10 siblings. Now, only an older brother, a ward of the state with advanced Alzheimer’s, and she are alive. She can’t go to assisted care because she falls without warning and they won’t let her have her 12 lb dog unless she can take care of walking and cleaning up after the pet. The dog is her only unconditionally loving companion. When previously hospitalized, she hates the fact that she must wait on others to help her get up to the bathroom, or sit in her own waste until they have time or desire to help her. It seems like Mom is regressing and secretly takes pleasure at being babied – ie washed, fed, etc like a young child – especially when she is incontinent or falls. Mom has frayed the emotional rope of care and concern with my brother and myself…. And the caregiver is almost at wits end as well. Any perspectives or suggestions as what we should consider for next steps would be appreciated. Mom tugs at our guilt strings, but we want our own lives too! My brother lives 1-1/2 drive from her home due to cost of living in CA, and I live in the upper midwest since my husband needs his family to overcome some military related PTSD issues.

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you are great daughter. Glad you are sensitive to your mom's needs.

Give her a hug from us cyber friends!

BonnieW - thank you for sharing your insights and perspectives - and the poem. You are right, it is the control in her life that she is missing. I'll work to see what we can to return some form of it.

In your initial posting, you described your mom as a pretty independent person who is now getting more cranky and difficult for even the Saintly care giver.

When you are down visiting your mom, look to see what your mum can do. Losing one's independence is a terrible blow particularly if the brain is still functioning. All this "care giving" can mean negativity to the person in need, like your mom.
If your mom is usually/historically a pretty nice, reasonable person and only getting cranky as her body is failing, then it may make sense to HER to meet with a group of significant people to discuss options for her. Reassure her you are there to be on her side just as she was when you had to go to school and learn new things. (or something like that or you'll think of something else). If you can get her primary care doctor to sit with Mom, caregiver and yourself, maybe that would provide a forum to discuss upcoming issues.
On the other hand, none of that may help. Seems like your mom just isn't ready to give up some of the things she just wishes she could do. So many serious "issues" are boiled down to "control". People never want to give up control over themselves.
Here's a poem by my mother that you may (or may not) find appropriate for your mom. BTW, my mom is 94 and is healing from a broken hip and back at home living alone in a 3 story house. she wrote this poem last Fall.2012

For my Loved Ones

My neighbor leaned across the garden gate
and watched me working.
I was on my knees among the peonies.

"There's so much left to do," I said.
"The garden's nowhere nearly ready yet
for killing frost."

"These golden days," she murmured, "why not
just enjoy them? Your garden's never looked
so beautiful. There's lots of time---"

"But not for me," I said, and looked at her.
She gazed into my eyes, where all my secrets are;
She saw, and caught her breath.

I said, "I do not dread the winter;
just want it not to come
before I'm ready."

So in my waning years of life
I've gathered up my little songs
to have them ready,
and I've brought them here, for you.

I'm hoping your mom can grasp the notion that she, too, has things she needs to do before the "killing frost".
Remember, each and every person needs three things for happiness:
Some reason to get up in the morning/some kind of work to do/to be valued
Some hope, something to look forward to, some dream out there a reason to live
Some one to love and be loved by (even your 12 lb. dog may be that love) for love is necessary for the human heart.

Hugs to you and your efforts to help your Mom find her happiness.
Hope my bits about my mom will help your mom.

Sounds like maybe your Mom would benefit from visits to a nutritionist who could help her adjust her food intake. Love the idea of rewarding them for losing weight. Wish I had an offer like that! I agree she would benefit from some PT and/or OT. A good physical might make her eligible for some reconditioning rehab. And if in a group setting get her a little socialization. Mommy Daycare might bring everyone a needed change. One book I read said just think "2 yr old" or "teenager" and all their behaviors are explained.

BonnieW - I will be flying to CA to take care of my mom for 2 wks. I hope to connect with someone there.

What are your contact plans for this coming week? Can you get some support with professionals that might be able to help your Mom?
Happy Mother's Day!

Reverseroles - thank you for your insight.
Everyone's feedback has been great to have your input and support.

If it were my Mom, I would keep the 24 hour care and get your Mom medicated when needed, they will do that in a NH anyway. I went through that stage and it lasted a year but once they stop the aggitation, stubborn behavior and wandering they are much better. We are all going to be in their position some day and I would prefer 24 hour care at home myself. Ive had my Mom over 5 years in my home now and wouldnt ever let her go. Good luck with your decision, sounds like you are lucky to get a 24 hour caregiver, thats great!!

Yes, Medicare will pay 80% for an MSW or LCSW (Licensed Clinical Social Worker. It is basically therapy.

BonnieW, you have a clever brother!

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