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Posted: December 21, 2006

Spousal Caregiving

Gifts I'd Like to Receive from Healthcare Providers

Bill Andrew

In my last column, We've Got the Gift That Keeps on Giving, I discussed various aspects of the practice of giving gifts during this Christmas season. Such gift giving is intended as a demonstration of our love and affection for the gift recipient. In that column, I specifically addressed a caregiver's gifts to their loved one and gifts for the caregiver from family members, friends, neighbors, or acquaintances.

In this column, I would like to address the gifts that a caregiver, and their loved one, should expect from their healthcare providers. Too often, those who provide healthcare services tend to do so in such a hurry that one has to wonder if everything important was addressed -- of more concern is what may have been missed. That has bothered me for the past 12 years as I provide 24/7 care for my wife, Carol, who has been diagnosed with late-stage Alzheimer's disease.

Does the doctor really understand the ramifications of the disease, the disease process, and the impact upon both the caregiver and their loved one? When I try to interject my concerns, does he/she listen and address those concerns? In addition to the doctors, who are the other healthcare providers -- nurses, nurse aides, home health aides, respite persons, family, friends, neighbors, etc. -- who may interact with my loved one and me throughout the year? Do they listen to me? How do I feel about them?

What are the "gifts that keep on giving" throughout the year that I would like to receive from Carol's healthcare providers? How should these healthcare providers interact with me and my spouse? What could they do better that would help me -- and my loved one? What Christmas gifts would I like from these healthcare providers that would be "gifts that keep on giving" now and throughout 2007? Here are a few suggestions for them to consider. You may want to make note of those that "ring a bell" and pass them on to your healthcare providers who might benefit from your advice.

Adequate contact time. How often have you gone for a doctor visit and waited and waited and waited before you got to see the doctor. Once in the exam room, you still waited. And then when the doctor did see you, he/she rushed through the exam and then was off to the next patient before you could ask all of your questions or get the information provided straight in your head. And you are the caregiver; think about the impression made on your loved one. This is not fair to your loved one, nor to you as the caregiver. Perhaps the same situation has been encountered in dealing with other healthcare providers as well.

What to do? I would suggest that you be prepared for the visit -- by any healthcare provider -- with all of your questions. I would also suggest that you tell them directly that you want your questions answered and that he/she should take the time to do so while you are there, not later. This can really be a "gift that keeps on giving," especially for you.

Respect from everyone. If the healthcare provider is always in a hurry, how can they have respect for you as a caregiver and your loved one? You and your loved one deserve the respect of every healthcare provider you encounter. By respect, I mean being treated as a person -- both loved one and caregiver -- and not as a number. Respect could be shown by reacting to your personal situation and obvious need: wheelchair assistance, moving you up in the queue, helping as needed, etc. Again, this is another "gift that keeps on giving" for both you and your loved one.

Compassion from everyone. Many times during an encounter with a healthcare provider, you find that the office staff, and perhaps even the clinician, is in such a hurry that they do not demonstrate any real compassion for you or your loved one. By compassion, I mean that they really understand your unique situation and they relate to it by being kind, considerate, and empathetic -- not sympathetic. This "gift that keeps on giving" should give you a warm and fuzzy feeling about the provider and staff.

Full disclosure from the provider. Too often, the primary care doctor is not totally familiar with the disease or disability of your loved one. They should be honest enough to admit to their lack of knowledge and refer you to someone that does. I frequently hear stories in my Alzheimer's Support Group about doctors prescribing medications for the loved one but not always have complete knowledge about the medication prescribed given the diagnosis of the loved one. Once again, this "gift that keeps on giving" creates better communications and dialog between you and the provider for the ultimate benefit of your loved one.

Acknowledgement of the caregiver role. While the role of the caregiver depends upon the progress of the loved one's disease or disability, it behooves the primary healthcare provider to acknowledge that the caregiver is acting on behalf of the loved one. If the loved one still has all of their mental capabilities, then they MUST be involved in the discussions, not talking around them. On the other hand, if the loved one is cognitively impaired, as is my wife, then the focus will be on making sure the caregiver understands what has to be done for the loved one to survive and thrive. To me, this is the ultimate "gift that keeps on giving" since the doctor understands the seriousness of the situation and acts accordingly.

These are only some of the possible suggestions that will improve the relationship between you, as caregiver, and your loved one's healthcare providers. While the above has focused on the doctor relationship, the suggestions apply to all pertinent healthcare providers as well as to family, friends, neighbors, and acquaintances who may interact with your loved one.

Perhaps you have some additional suggestions for the readers of this column. If so, drop me a line at ASKBill@caregivershome.com.

Carol and I wish you all a Blessed and Merry Christmas. May God continue to bless you and yours on your spousal caregiving journey.

WORDS TO CARE BY . . .

"I bring you glad tidings of great joy which shall be to all people . . ."

Luke 2:10


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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