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Questions & Answers - June 2004

Mary C. Fridley, RN,C is a registered nurse certified in gerontology with more than twenty years in the geriatric health field. She is the owner of Gero-Resources specializing in caregiver, eldercare, and successful aging education and advocacy. Mary is also an author of two caregiver advice columns and contributes articles to various websites. She is available for speaking engagements and would be happy to answer your questions or concerns while maintaining your anonymity.

About Mary
Mary's Column Archives: Caregivers'
Questions & Answers

Dear Mary,

My husband, young son and I cared for my mother who had Alzheimer's disease for 12 years. Ten of those years she lived with us, but during the last two she was in a nursing home. Since her death we have endured unfair judgment by family and neighbors about the care we gave her. These are the same people who stood on the outside all those years and never offered to help. We may not have done everything right, but at least we did something rather than nothing.

My family and I are just now beginning to come out from under the fog of caring for someone with such a terrible disease. We finally starting to like and love ourselves again - setting aside all the 'hindsight guilt' that is associated with caring for a parent. We are most thankful that we survived those years, because some days we just wanted to pull the covers over our heads and stay in bed. We are working on rebuilding our emotional and physical health as well as our financial well-being.

Thank you for your support and all the work you do on behalf of caregivers everywhere.

Dear Reader,

Thank you for having the courage to persevere and come out hopeful and optimistic. You and your family should be very proud of what you were able to do. As I've said before, caregivers do a remarkable job that, given the choice, most people would never undertake. Those that criticize and weren't there to help have no right to comment on your caregiving efforts. Next time, respond with "I'm sorry you feel that way" and don't argue or defend, just walk away - It will leave them speechless.

Recovery is the final stage of caregiving - keep up the good work.

* * *

Dear Mary,

My wife was diagnosed with early onset Alzheimer's disease six years ago. This past spring she started to have seizures and is rapidly declining. She now is being fed through a tube in her stomach, can no longer walk, and needs to be transferred from bed to wheelchair and back. I do the feedings as well as medications, bathing, and all the rest, and receive respite help from family, friends, and community resources.

We have been married 40 years and wonder how I will handle the additional emotional, physical, and personal challenges this journey will soon bring. Most of the people I talk to tell me I will know when it's time to put her in a nursing home or, whether I'll be able to see it through at home till the end. Is it that simple? I am adjusted and comfortable with the journey for now. Do you have any advice for this retired teacher turned caregiver?

Dear Reader,

Your wife is blessed to have you and such loving friends and family caring for her. I commend you for accessing and utilizing community resources for respite. As you know, time off is most important to maintain your health.

Whether or not she can remain at home is dependent on two things: your ability to provide her with the level of care she needs; and the state of your physical, emotional, and spiritual health.

I encourage you to talk to someone from Hospice. They can guide you about end of life concerns and provide emotional and spiritual support. Your wife may not be ready for this level of care yet, but it's never too soon to plan ahead.

* * *

Dear Mary,

My 70-year-old father has severe dementia and was hospitalized recently with kidney failure. He had surgery that requires him to have a catheter until he heals and his wrists are restrained to prevent him from pulling it out. The hospital wants to discharge him as soon as possible, preferably to a rehabilitation center, but no one will take him because of the wrist restraints. My mother would not be able to handle him or his care at home so that is out of the question. I can't imagine that they haven't run into this problem before with male Alzheimer's patients. Is there anyone you can refer me that could help me negotiate this mess and maybe keep him in the hospital a little longer, at least until the effects of all the drugs wear off.

What you are describing is not an uncommon scenario with insurance mandates to discharge patients quickly. Please call your local Area Agency on Aging and ask to speak to someone in the Senior Health Insurance Program (SHIP). They will be able to explain insurance regulations and guide you through the appeal process. Good luck.

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