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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 07/16/13


I fully understand the complexity of caregiving. I still work as a health educator/advocate. This spring my husband, who is "retired", and I chose to bring his mother into our home to live. She has end stage Alzheimer's disease and suffered two strokes. She needs full-time care. We do have minimal respite care. Our area is great about covering elder needs for those who remain active and independent. However, in our county, transportation and homecare remain major issues for everyone.

We don't qualify for Medicaid, yet have to pay private agencies huge amounts of money for personal care. My mother-in-law does not have enough financial resources to qualify for a nursing facility. We are stuck in the middle. Her primary physician won't qualify my mother-in-law for hospice because she doesn't know the length of the disease process. Yet, after talking with our hospital's palliative care team, we may qualify for some services, especially comfort care.

My husband and I take staycations. We rent or purchase DVDs, buy some dark chocolate and a bottle of wine, and enjoy the evening after Mother is in bed. We have a swimming pool and invite family and friends to enjoy BBQs. I have a patio garden. We live in the country and have a lot of song birds and wildlife. Both of us enjoy reading and puzzles. My grandchildren visit.

But we still need emotional support as we watch her slow decline. We are suffering grief long before her passing. She is no longer the mother we remember.

I would appreciate any advice you may share with us.



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Name: Jane
Location: Kansas City
Date: 07/17/2013
Time: 08:38 AM


The name for what you are experiencing is anticipatory grief. All of us who have watched a loved one slowly decline from Alzheimer's and other diseases have been through it. I used to think about my husband's death every morning as I put my hand on the doorknob to go in an wake him. It is miserable. What I found that helped is a support group where there were others who had been through or were going through what I was experiencing. Call the Alzheimer's Association closest to you to see where there is a support group convenient to you. If there is not one, call the local Area Agency on Aging to find a general caregiver support group. Check into getting your mother-in-law on Medicaid if she has no resources. She would then qualify for in-home services that would relieve you of some of the burden. Lastly, most of what we do with persons who have Alzheimer's is mundane. I looked for opportunities where I could help my husband have what one author called "moments of joy." Those moments are now what I remember when I think of him. He died of his disease almost 2 years ago and even tho it was a struggle for both of us, I can remember when he laughed like his old self even while sinking into disorientation and aphasia. Hold those times close.

Name: Carolyn
Location: Rockville, MD
Date: 07/16/2013
Time: 12:17 PM


You say your mother-in-law does not have the resources for a nursing facility. That suggests that she may qualify for Medicaid, whether to pay for long-term care in a nursing home or maybe in your home under a waiver. See what the rules in your state are regarding eligibility. You could contact your Area Agency on Aging or state Dept. of Health and Human Services.



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