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Posted: March 05, 2009

Spousal Caregiving

Successful Caregiver Advocacy

Bill Andrew

 I learned many lessons as the long-time caregiver for my wife, Carol, who dies this past summer after a 14-year battle with Alzheimer’s disease. Most of the lessons were learned the hard way, as no one told me what to expect and how to proceed with the myriad caregiving responsibilities that came my way. 

As Carol's family caregiver, I was also her healthcare advocate since, as the disease progressed, she could no longer function on her own.  I found that, while I could handle many of the daily caregiving activities without a problem, becoming her healthcare advocate was probably as challenging as anything that I had previously done.  I often found myself frustrated and challenged while trying to: 

  • Find out everything I could about Alzheimer's disease and related dementias
  • Find doctors and other clinicians who understood the nuances of Alzheimer's and related dementias
  • Search for and obtain a diagnosis for Carol (there are at least 150 various dementias of which Alzheimer's is the most prevalent) 

I also found difficulties in: 

  • Getting answers and complete information from her family doctor. Fortunately, the neurologist and psychologist helped "fill in the blanks"
  • Filtering through the many misunderstandings and complications that I ran into as I talked with various doctors and other sources
  • Being heard and understood by other members of her healthcare team
  • Finding and obtaining access to community-based and home-based support services
  • Making sense of multiple sources of information, which was often contradictory. 

A MetLife Mature Market Institute report provided a number of suggestions for becoming a healthcare advocate for loved ones who have a chronic illness or a disability.  I have adapted my own personal caregiver experiences into those suggestions, and I share them here: 

  • Form a healthcare team.  This would include doctors, nurses, social workers, and any other healthcare professional involved in your loved one's care.  I would also include family and friends who support your caregiving role. 
  • Identify the prime point of contact on the healthcare team.  While this could be any one of the above, I would choose the person most knowledgeable about the chronic illness or disability, about the healthcare system, and the inner workings of the healthcare team itself.  In my case, I chose Carol's neurologist upon whom I was most dependent for information and about the "next step."  
  • Assert yourself as a crucial part of the healthcare team.  In fact, I assumed the key position and found myself coordinating much of what was done for Carol.  However, not everyone would be able to do this.  Regardless, you should communicate openly and regularly with the healthcare team so that it is aware of any changes in your loved one's status.  Before any doctor appointments or any meetings with other members of the healthcare team, write down a list of pertinent questions noting the most important questions to ask first.  Stay calm and positive during your communication sessions -- even when you feel frustrated -- yet persistent if your questions are not being answered. 
  • If at all possible, include your loved one in the decision making.  While this may not be possible in some situations -- for example, if your loved one is in the late stages of Alzheimer's disease, as my wife was -- you should make every effort to include them.  Keep in mind that decision-making ability often varies from person to person.  Your loved one may not be able to make financial decisions any longer but may still be able to able to articulate their healthcare preferences. 
  • Write everything down.  Keep a record of key contacts, doctor and other appointments, healthcare information, and the outcomes of each and every appointment in a log book.  This would include the plan of care for your loved one which should be broken down into goals and specific tasks that you can manage yourself. 

Becoming a healthcare advocate for your loved one takes time.  It doesn't happen overnight; I can vouch for that.  But these tips, including my own personal experiences, may help you feel more confident and organized while working with your loved one's healthcare team.  It is also a good idea to ask for input and advice from other caregivers; for example, through a support group of caregiving peers who "have been there and done that."  I also personally suggest forming your own personal support team (more on that in a future column).   

I am sure that many readers of this column will benefit from the above suggestions.  If so, I would appreciate hearing from you. 

Please e-mail me at ASKBill@caregivershome.com with your comments and/or reactions.  I will include them in a future column, with your permission.  Please provide your full name and address.  In the column, I will only use your first name and the initial of your last name as well as your city and state.  Thank you. 

WORDS TO CARE BY . . . 

"Be silent as to services that you have rendered --

but speak of favors that you have received." 

Seneca (5BC-65AD)


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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