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Posted: May 26, 2005

Spousal Caregiving

The Economics of Becoming a Caregiver By Default

Bill Andrew

As with most of us, caregiving happens by default -- that is, you just happen to be there and the job falls to you.  That seems to be the case with Brendan as related by his sister Bridget.  While not a "spousal caregiver" question, what happened to Brendan and Bridget -- and their family -- may well have happened to you and your family.  Overcoming family denial and finding sources of assistance and information seems to be a problem facing the majority of spousal caregivers -- as well as family caregivers in general.

That's Bridget's dilemma.  She wonders what she and her brother, Brendan, can do to provide cost-effective in-home care for their father.  Let's check out my "ASKBill" e-mailbag to read their story and see if my personal experience can provide them with some assistance.

_____

Dear Bill:

My 28-year-old brother's main thing in life right now is caregiving for my invalid father with Parkinson's and Alzheimer's disease. It is a full-time job for him and very exhausting. The family wants to keep dad at home, but Brendan has to be able to make some extra money. They are reluctant to request public assistance because they don't want to be accused of "milking the system" or have people constantly checking up on them.

My ability to assist Brendan is limited since I have seven children under age seven and find it difficult to even get on the Internet.  Your assistance would provide both of us with peace of mind.  I will forward your suggestions to Brendan for his follow-up.

I heard there are government programs that pay the family caregiver, or reimburse them, for keeping elder invalids in their own home and providing care for them.  Am I correct, and can you guide me to the appropriate people to ask the questions?  My brother is too humble to seek most of this information on his own.  I think that your suggestions will make it easier for them to seek out the appropriate assistance. Thank you in advance.

Bridget M., Overland Park, Kansas

Dear Bridget:

I would suggest that you check out the Comprehensive Assessment Review and Evaluation (for long-term care) Services (CARES) program in your state.

CARES is a federally mandated nursing home pre-admission assessment program. Persons who are applying for Medicaid nursing home care are assessed by either a CARES nurse or social worker, with medical review by a physician prior to approval. Objectives of the CARES program include the following:

·         Prevention of unnecessary or premature admission to a nursing home;

·         More effective coordination of an individual's medical, social and psychological needs and resulting level of care;

·         Referral and assistance in obtaining in-home and community services to avoid nursing home care; and

·         Education of the public, particularly health care providers, about less costly alternatives to long term care.

You might also check if your state has a Consumer Directed Care program which might address your brother's financial needs.  This program may be more appropriate since it specifically addresses your brother's concerns over "payment for services rendered."

These programs may or may not be available in Kansas, but you should still check them out with the appropriate authorities.  I would check with the Alzheimer's Association office in your area, the County Department of Elder Affairs, and the State Department of Elder Affairs.  Another source would be the appropriate Area Agency on Aging in your area of your state.

Bridget -- I hope that this helps you.  Please let me know how you make out with your inquiries.  Thanks for writing and may God bless you, your brother, your father, and your family in this time of personal crisis.

A Response from Bridget

Dear Bill:

Thank you for your suggestions. I have forwarded your e-mail to Brendan to let him know where to start. I think that with your information, things will be easier for them to make the appropriate inquiries. I appreciate your willingness to share with us -- it will help us all a lot.

Bridget M., Overland Park, Kansas

_____

We are fortunate that the State of Florida has programs such as those suggested above; perhaps your state has them as well.  In any event, what Bridget and Brendan have encountered is all too often the typical situation.  There is a reluctance to seek out the information because they want to "protect" their loved one and family. 

 As I have indicated many times in this column, education and support are the two key ingredients that are often cited as the biggest needs identified by family caregivers in current national studies.  Hopefully, this column will help spousal caregivers, and their families, to recognize that need in their own caregiving environment.

If you would like to ask a question about your spousal caregiving "job," do not hesitate to send me an e-mail at ASKBill@caregivershome.com.  Remember, I can only share my personal experiences with you and cannot provide any advice that would require specific licensure.

WORDS TO CARE BY. . .

"Set your heart right and be steadfast,

and do not be hasty in time of calamity."

(Sirach 2:2)


Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at ASKBill@caregivershome.com.

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