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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 1/20/15


Greetings from a (Willing) Caregiver:
My sister and I are both providing care for our 90-year-old mother, who is still wanting to live in her own home. While we see, hear and know many of our seniors want to do this; in reality, this idea of living "independently" serves largely the wishes of the elderly parent.
What I am seeing and experiencing with my sister (who currently lives with me and my 88-year-old husband) is that we are running two households. I'm witnessing our mother living very comfortably with the "arrangement" of being cared for by her two daughters in the fullest sense, taking care of all the details of her needs including meals, shopping and transportation.
While we love each other deeply in our family, I'm also witnessing the unfolding "lopsided" aspect of caring for what one family member needs at the expense of multiple others. Our mother is doing well financially, meeting her home's monthly expenses and building specific investments, while I'm seeing my sister's and my own financial future looking more bleak and our ability to secure employment and build our own futures while still "young" (70 and 67) becoming more out of reach. My sister is a widow and she's serving our mother's needs without pay, since we've come to understand that you care for your parents with no thought of income for yourself.
Something seems out of balance here, and yet I feel guilty if I talk about our futures "out loud." All this to ask your input, advice, or some level of wisdom to help me and my sister move forward, still honoring our seniors, yet also begin to see a better future for our own lives.
Thank you for your help.


Shared by: Vicki
Las Vegas

I cared for my late husband for 4 years until he finally passed last month. Whatever we managed to save is gone because no one would actually do anything for him. I ended up with all those expenses out of pocket. I am left with nothing now that he is gone. To make things worse, even though I am only 58, no one will even try to offer me an interview to find a job. Anyway, all I am saying is don't let it get to the point that it wipes you out totally. I would NEVER change a thing about how I cared for my husband, but I am totally lost about what to do for myself now.

Shared by: Amy
South Florida

I don't know the details, but I've seen reference to legislation on taxing that would affect family caregivers. Caregivers would pay themselves (or be paid out of the cared one's funds) for some number of hours up to the area's prevailing wage. With proper bookkeeping, it would also be possible to file forms that would apply pay to Social Security withholding and eventual benefits. I don't know how to track this down, but a letter to "Dear Abby" might rate an answer that would be beneficial to a lot of caregivers.

Shared by: Donna

I cared for my husband with Parkinson's disease for over 20 years. However, I did not do it alone. When he was still ambulatory and fairly mobile, I managed by myself. As the disease progressed, I had to hire help. I was fortunate to have a long-term-care policy for him, so only a portion of the cost (40%) was out of pocket. When I first discussed it with him, he was not in favor, but I still invited interviewees to come to the house and meet us. After a short while, he rather enjoyed that experience, always telling a potential caregiver, "We may have disagreements, but I'm always right."

Since your mother is doing OK financially, I would recommend hiring help and letting her stay in her home as long as she's able. If all of her needs can't be managed with help in the home, then you should have her moved to a nursing home. She won't like it, but she'll be safer there. At your ages, you should not be burdened with your mother's caregiving. And there should be no guilt about it. In addition, you need trained backup in the event that something should happen to you.

Best of luck to you!

Shared by: Hallie

Hi Linda: first, you are honoring your parent by taking care of her. Well done!

 That said, you teach people how to treat you. There is nothing wrong for asking and expecting a contribution from your mom for her care, whatever that looks like. I have been the primary caregiver for my 86 yr old mom for more than a year and a half after a devastating car accident left her with a broken foot and ongoing mobility issues. She cannot take all her meds, cook, do laundry etc so now she lives with us and makes a monthly contribution to the household and depends on me to do a lot for her. Your mom would have to pay someone dearly for the type of care you are providing for free at your own expense so it sounds like there needs to be a conversation about her contributing to her care.

Ideally a family will take much better care of their loved one than a stranger doing it for pay. Family care is usually the first choice for elders and you deserve to be compe nsated, maybe not by the local standard of hourly wage but certainly not for free, unless there are no funds available which doesn't sound like your situation. Blessings to you for your kind and gentle heart. I pray that you can make this a more equitable situation for you and your parent.

Shared by: Marge
North Carolina

My mother is renting an apartment in my basement. She is 92 and in fair health, Dad just passed away. I do all the cleaning, cooking, shopping. She pays rent and helps pay for the groceries. If she should ever have to go into assisted living or nursing home, any income/savings she has at the time would go to them before she qualifies for Medicaid. She would rather give it to me. So I pay taxes on her rent and let her pay for anything else she needs. It keeps her "independent" and helps me stay on the plus side financially.


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