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Cynsiu Posted May 2013

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.

BonnieW May 2013
you are great daughter. Glad you are sensitive to your mom's needs.

Give her a hug from us cyber friends!

Cynsiu May 2013
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.

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BonnieW May 2013
Cynsui,
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.
bonnie

skinonna May 2013
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.

Cynsiu May 2013
BonnieW - I will be flying to CA to take care of my mom for 2 wks. I hope to connect with someone there.

BonnieW May 2013
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!

Cynsiu May 2013
Reverseroles - thank you for your insight.
Everyone's feedback has been great to have your input and support.

Reverseroles May 2013
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!!

ferris1 May 2013
Yes, Medicare will pay 80% for an MSW or LCSW (Licensed Clinical Social Worker. It is basically therapy.

Scared May 2013
BonnieW, you have a clever brother!

Cynsiu May 2013
BonnieW - I guess age has it's priviledges of what advise to follow. She's had OT/PT in home several times for her balance issues. Although the caregiver offers to work with her on the exercises, she "doesn't feel like it." She had an emotional breakdown over a ancephalic child in '64 died a few hours after birth. No family support was available - nor was our father empathetic. Ever since, the words counseling, social work, or any term which she might interpret as "crasy", triggers anger, fear and anxiety. However, I would like to ask someone with the counsel on aging how to approach her regarding her ideas about her step/ transitions toward her aging process. Any agency suggestions? Does medicare help pay for a social worker's counseling?

ferris1 May 2013
Yes, I realize the bond between master and pet as I have three pets, but her mother's well-being is most important at this time. Maybe you could pick a facility that has pet therapy visit several times a week. My cocker spaniel is a pet therapy dog and seems to know when people are hurting. Just stroking a pet can lower one's blood pressure. The pet would be better off going on long walks and seeing other dogs in the park/Petco/Petsmart. Do what is in the best interest of your mother and she will forget she had a dog soon. No, it is not an easy decision and I love my pets, but I value humans above animals.

BonnieW May 2013
Not sure if this is anything more than just a thought.
My mom needed to get exercise and lose weight. Mom is a child of the Depression and money means a great deal to her. Elder brother scotch taped a $100 bill on the wall and challenged her to get it by losing weight and exercising. She got a kick out of that challenge and did lose weight enough to get the $100 in her pocket!
For that sort of thing to work, one has to know what turns a person on the "go" switch. For some it may be an outing or special meal. anyway, just a thought.

Oh, same brother brought a 10 lb sack of potatoes over to the house for visual evidence of what 10 lbs looks like and feels like to carry. That was motivating, too.

BonnieW May 2013
Sounds like your mom is being a pill, for sure!
If she is falling, then she needs some PT for balance. Could her doctor be effective in getting some OT and PT assigned for her?
Very picky housekeeping background just lends itself to finding fault with a bit of dust balls or crumbs on the floor. It goes with the need to be compulsive over each and every little detail. Not much you can do about it except have a PT/OT teach her how to pick things up safely.
Sometimes a good talk with a Social Worker can help her see the writing on the wall. If she wants to stay where she is and even get stronger/more independent, she will have to do certain things...include being a great deal nicer to people who are trying to help her!
'them's the facts, madam" and see if that helps at all.
Good luck!

robert2629 May 2013
A healthy diet could reduce her weight problem; there are medications for vertigo. Can she get a small dog...and get used to it? The danger there is: she might trip over it.

Bonfire May 2013
Yes, both dog and parent are important but let's face it - this is one of these situations where the dog would be better off in a new home as well as the parent.

Labs4me May 2013
What is more important? Both! The bond between an owner and their pet is so strong. Separating that unconditional love is a gut wrenching decision to make. Cynsiu my heart goes out to you on that difficult decision.

ferris1 May 2013
Who is more important? Your mother or the dog? Put the dog in a good home, and put your mother is a facility. With dementia and balance issues your mother needs full-time care. These are hard decisions, but you need to make them.

Cynsiu May 2013
Scared - thanks for the suggestion of the grabber. She has one, but easily looses focus and forgets it next to her. Her hand strength isn't was it was before and even holding a fork and spoon to feed herself is a struggle. The caregiver uses a large "bib" to help keep the food off her and the floor. As to the idea of someone going in to take care of the dog to feed & walk - it's something to look into. Appreciate your input.

Scared May 2013
Try one of those grabber devices so Mom can sit in a chair and pick things off the floor or off a shelf without having to stand. That might help, too. If your Mom did go to a facility that let her have the dog, could you hire someone just to care for the dog...feed, walk, etc? Could you Mom get a power chair? Just some random thoughts.

Cynsiu May 2013
Thank you for your insight. The idea of giving paid time off to the caregiver is something which we will consider - and something she richly deserves. I also like the idea of the graduated/limited activities. It's a bit like letting kids help at safely @ their skill level.

jeannegibbs May 2013
You are being supportive of your husband, with PTSD issues, and worried about your mother half a continent away with a high fall risk. My heart goes out to you!

Do I understand correctly that your main worries about Mom are her frequent falls and her increasingly nasty behavior toward her saintly caregiver, and that you are wondering if a nursing home would be the next logical step?

It sounds like Mom's falls are a result of her risky behavior and not a result of being at home. She is likely to fall at a nursing home, too. The advantage at a nursing home is there is plenty of help there to get her back up, but the risk of a broken hip or other serious injury is not reduced at an NH. (Unless they use restraints, or keep her doped up, and that doesn't sound like a good option, does it?)

Until Mom really does break a bone, I wonder if keeping her where she is and where she can have her beloved dog might be the best plan after all.

Who takes care of Mom when the caregiver takes off? Is that person also an excellent caregiver? I wonder if the situation would be more palatable for the saintly caregiver if she had more time off, without reducing her pay. All of us can be more tolerant when we've been able to recharge our batteries. Or a raise might be an incentive to put up with difficult behavior. It is good to know we are appreciated!

I'm feeling sorry for Mom not being able to do the things she wants to do. Could she and the caregiver walk out to get the mail together, perhaps with Mom using a walker? Could Mom dust all the shelves she can reach from sitting on the rollator seat, and the caregiver do the very bottom shelf and the upper shelves? Could Mom sit at a table and fold all the laundry after the caregiver takes it out of the drier? Perhaps finding some things she could do more safely would reduce her risky behavior.

If/when Mom has a serious injury in a fall the matter will be taken out of her hands. She will need a hospital and rehab and maybe need an NH after that. For now, I'd try to reduce her risks if possible, and make life a little more tolerable for the caregiver.

I wish you well, with your mother and with your husband.

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