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funknjunque Asked July 2013

I'm an only child diagnosed with a terminal disease. Where do I begin to find someone to care for my Mother if I can no longer do so?

I was diagnosed with CLL (Chronic Lymphocytic Leukemia) some years ago. Went through 3 rounds of chemo and my blood has been doing well for about 3 years now. The latest tests show that it is inching its way back into my body. My mother, 91 years old, lives in a retirement-assisted living facility. I do her bill paying, shopping, prescription management, laundry and whatever comes up. With the CLL lurking around again, I am at a loss as to where to start. I am an only child with no children of my own (65 years old). The facility she lives in now is expensive and I have very limited funds myself.

desert192 Jul 2013
Thanks to Echomom for the hug. In answer - I have all of my assets in a Revocable Living Trust - I had my Mom put all of her assets into a Revocable Living Trust. I am her co-trustee on her trust - I am the trustee of my trust.
In both cases I have a professional fiduciary as the successor trustee. She would step in to handle my Mom's affairs if I were no longer able and she needed assistance. (This takes care of things if you predecease your Mom or just are not able to perform necessary duties - whether mentally or physically - you just allow fiduciary to become trustee). PFAC in California is where I found trustee I have named - in case we outlive her - contingency allows for another member of PFAC to take her place. She is licensed and bonded to handle financials and will see that Mom or you receive care you need according to terms of trust. You just need to get trust done and fiduciary named.
Much more reliable than family members - not to mention more trustworthy.
Also, you will want to name caregiver of choice (whether AL or NH or private care). Hopefully you will outlive Mom, but I don't want to leave my Mom without care - you never know when your time will be up - even if you aren't sick it's better to be prepared. - Or worse yet - if you don't make arrangements and then the courts have to decide what should be done.
I prefer to take care of my own.

Dustien Jul 2013
You are so wise to start thinking about it now. That is a tough one since you've no one to pass the torch along to that you know will do as good a job as you do. Her assisted living facility should be able to guide you as to what steps to take to see to it your mom is taken care of should anything happen to you, but I'd also say one stop you should make is to your local area on aging. They are non profit and I would think that they will have your mother's (and not her incomes) best interests at heart.

Hopefully you'll have many years ahead of you yet and you will outlive your mom, but you're doing the right thing by planning ahead in case the worse should happen. Your mom is lucky to have you! Best of success to your endeavors.

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desert192 Jul 2013
Try a professional fiduciary. (In California PFAC - Professional Fiduciaries Assn of California). You can get list of fiduciaries and talk to the ones in your area. I have this in place in case I go before my mother (while not likely, better safe than sorry). The fees vary, but they are licensed and bonded so no worry about family or firends taking advantage of Mom. Everything is in trust with fiduciary successor trustee to me.

Stafford Jul 2013
From what I've heard, making a financial institution or attorney executor of your Mom's estate is very expensive. They charge high fees and say no to requests from a nursing home for additional care for the patient. They try to claim as much of the estate for themselves as possible. If you can possibly enlist a trusted friend or relative to manage her affairs and yours too if that becomes necessary. Thank God, I always handled our financial affairs, so that was one thing I didn't have to learn when my husband developed demenetia and lost his job. I have somehow managed to keep us still standing for three years after losing that income. I wish I were there to help you. That's one thing I'm good at is paying bills and saving wherever possible. Try Alzheimers Assoc. or your Aging assoc. I believe with limited income they offer free legal advice. Wish you the best of luck in resolving your end of life decisions.

orangeblossom Jul 2013
Dear Funk, I commend you for seeking to arrange your Mom's care when you are no longer able to manage it. Since she is currently OK in the facility, I think the first thing I would do is seek guidance from an Elder Law attorney (check if YOU are financially or medically eligible for free counseling from your county's legal aide services). I would review her medical and facility care, and go over all her assets (personal property, house, insurance, investments, bank accounts, etc.) The attorney will be able to help you liquidate and preserve assets (as in a Trust), for her future care and burial that Medicaid shouldn't be able to touch. It is imortant to do this ASAP since Medicaid has a 5-yr look-back on transfers of assets, Since you are an only child, you will also need to discuss appointing someone younger than yourself, such as a younger cousin or trusted friend, that would be willing to manage her affairs should you predecease your Mom, or become physically unable to do so. My prayers and best wishes are with you.

I am no expert by any means - these are just the basics I would start with. There is a lot of excellent reference material on this site under the Money & Legal tab, so you should check that out also.

Mary11 Jul 2013
God Bless You do seek a social worker at the AL they can help.

ferris1 Jul 2013
My best to you that you live longer than your mom, but do start looking for another facility or file for Medicaid for your mother. You don't state what insurances you may have, but the first place to start is getting a younger attorney or very, very best friend to help as a guardian for your mother should you predecease her. As a nurse, I know leukemias rob the body and I wish you the best!

noahbb Jul 2013
God Bless U and Your Mom. I hope everything turns out well.

Jaye Jul 2013
I am sorry this is happening to you. Caregiving is hard with the an illness such as CLL it would be an even bigger challenge. Does your Mom qualify for elderly waiver? That is a program for seniors with a limited income and little or no assets. That program will provide help with finances and also a homemaker and homecare aid. take care...

1tired Jul 2013
Funky, very sorry to hear of your illness! Right now the best you can do is to take care of yourself. I am hoping that there is some way for you to arrange for POA for your mom to be transferred to some other relative or close family friend. My mom's NH has levels of care as well and will do the laundry etc for a fee of course. If your mom's assets are running out or will do so shortly try sitting down with a social worker in the facility to see what the next steps are for Medicaid application and if there are no other family members if she can recommend a professional advocate for your mother. My suggestion would be to try to take as much off of your plate as you can so you are able to have peace and deal with your own illness. Hugs! and Prayers!

Chicago1954 Jul 2013
I am so sorry that you are ill. Also, this post didn't post in my e-mail until, now. At my Mother's AL, they do the laundry and pick up the prescriptions. Would it help you to have the AL do more of the daily routine, for you?

Perhaps your Mother has an estate that can be liquidated? I know 2 different families that have hired auctioneers to do that, recently.

I hope that you get some more answers from the others, on this site, soon.

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