Helping Family Members Understand Caregiving Cost of Alzheimer's Disease

Dorian Martin Health Guide
  • The Spokane Spokesman-Review published an interesting question in its Dear Annie section. The letter from Outcast Sister described how her four siblings were irate that she was being paid a salary by her mother for providing caregiving services. The mother lived alone in an apartment near Outcast Sister. The sister noted that she spent at least six hours a day every day assisting her widowed mother and the “salary” was her mother’s idea. The salary is comparable to what would be paid for in-home health services and Outcast Sister says she tries to be conservative with her hours. However, her siblings want to move the mother, even though Outcast Sister has her mother’s power of attorney and is the co-trustee and executor. While Outcast Sister’s mother isn’t described as having dementia, the letter definitely rings a bell for many of us as far as the issues that can arise in families when caring for an elder.

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    Fortunately, I’ve not had any problems with my brother. However, I have experienced some of the backlash that can come about in families where people don’t understand the day-to-day situation that the loved one and the caregiver face. My experience happened a few months after Mom was placed in the locked Alzheimer’s unit at the nursing home. I remember going mid-morning to visit her and finding her in a particularly bad mood. I thought that perhaps if I wheeled her into her room, I could calm her down and get her to talk to me. That’s when I found a single red rose in a small vase by her bedside. “Where did you get this, Mom?” I asked, but she didn’t have a clue. So I asked the nursing staff but they had just changed shifts and did not know where the rose came from. It took several days to unravel the mystery and the answer didn’t come in a straightforward way.

    That’s when I learned that my father (who at that time was living seven hours away from the area where I live and where Mom was in the nursing home) said he had gotten a call from a relative on Mom’s side of the family. It turns out that this relative and her daughter had visited Mom early that morning and the relative said she was very concerned about Mom’s agitated state, blaming the nursing home staff for Mom’s agitation. Although I wasn’t there when they visited, I do know that there was a major weather disturbance going on that day and have noticed that Mom’s most intense reactions happened during those periods of time (possibly due to her chronic obstructive pulmonary disease and dementia). And I found that I ended up being agitated with my relatives since they hadn’t contacted me with their concerns so I didn’t get a chance to research the situation in a timely manner.

    Based on this situation as well as my other experiences in caregiving, I agree with the newspaper’s suggestion of putting family members in a caregiving situation so they can understand what it’s really like instead of romanticizing about how easy it is. For instance, I would suggest asking a relative to provide caregiving to the loved one while you’re on a trip. Be sure to leave a detailed schedule (doctor’s appointments, etc.)  of what needs to happen while you’re gone and include a list of things that you regularly do for the loved one and when you do them. Being placed in this situation almost always will open a relative’s eyes to the reality of the loved one’s situation as well as the true amount of work it takes to provide care.

  • I also agree with the newspaper’s response about identifying the cost of caregiving. I’d suggest putting together the numbers for the entire spectrum of caregiving that the loved one could be using instead of your services -- hiring a home health care service, living in an assisted living facility, living in an Alzheimer’s specific facility, and living in a nursing home. Those figures probably will be eye-opening for relatives.

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    One other suggestion is looking at the actual salary or wages the caregiver may be losing by not being able to work those hours because he or she is assisting the loved one with Alzheimer’s. Chances are the market rate of what the person would be paid in his or her chosen industry is higher than what is being paid for caregiving. Again, it can be a good reality check for family members.

    What this all comes down to is open and honest communication. If you’re a caregiver, you need to communicate with family members about what you do (as opposed to just being quiet and “taking one for the team.”) Family members need to actually walk in the shoes of the caregiver to better understand Alzheimer’s disease as well as what it takes to assist someone with this condition. And everyone should be willing to ask questions and look at options, but also to put egos aside and do what’s best for the loved one who is dealing with cognitive decline.

    Primary Source for This Sharepost:

    The Spokesman-Review. (2013). Caregiving sister’s salary angers others.

Published On: May 31, 2013