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Real-Life Story: ‘If Your Loved One Has Alzheimer’s Disease, Don’t Let His/Her ‘Good Days’; Lead to Denial About Appropriate Care.’

I had to chuckle because a national advice columnist was asked the following question about a senior who was in apparent need of assisted living services: “My mother-in-law was diagnosed with dementia over a year ago. She can no longer do anything for herself. She can no longer climb the stairs, get to her bed, shower or do laundry. She does nothing all day but watch TV and eat sweets. What can be done for an elderly person who obviously can’t take care of herself but “fakes” it so her kids won’t put her in a home?” The columnist’s answer was basically, “You have my sympathy. Convene a family meeting, and call the Alzheimer’s Association.” Frankly, I found the response to be an oversimplification and glib. While the associations for specific diseases will provide you with excellent sources to begin your research, they will not help you analyze and identify the appropriate option for your loved one. You will still have to complete all the legwork that comes with identifying the appropriate option for your loved one.

Since I’ve already completed the research, why not let me streamline this time-consuming and emotionally draining task for you?

My father had Alzheimer’s disease and was a master at “faking otherwise” when his baby daughter was there to visit, in order to keep her from worrying about him. He was so good at acting that at times I was in denial that anything was wrong with him. However, sometimes the person who has Alzheimer’s becomes so good at “faking it” that the results are detrimental. .

Read what happened to one family in the following Real Life Story:

My clients were three children of a woman in her 70’s with mid-stage Alzheimer’s. Upon meeting her and a daughter, I found her to be totally ambulatory, social, and anxious to share stories and show me personal artifacts from her native country. The daughter who was the primary caregiver reported that I was seeing her mother on a good day. But she also confessed to me that her mother was “putting on a show” for company, and that she feared her mom was “faking it” in front of her kids so they wouldn’t move her. On bad days she did not recognize her daughter or her voice if she called on the phone, and was prone to bad moods.

The mother was living alone in her own home. The adult children were taking turns checking on her in the morning, making her meals, checking on her mid-day and returning in the evening until she went to bed. She could handle her activities of daily living but needed help with her medications and had never wandered.

An assessment by a neuropsychiatrist indicated that she needed 24 hour supervision and should not remain at home alone. However, the daughter remarked, “But we don’t have to do what he says because she just doesn’t need that sometimes.” The daughter said she had contacted a home care agency to stay with her mother at night. I suggested that while I was completing my consultation, they should visit an adult day care center less than a mile from the mother’s home that would send a bus for her in the morning, prepare her lunch, engage her in appropriate activities and bring her home. The staff was also trained to deal with individuals who have Alzheimer’s. This would eliminate the need for the mid-day checks that the kids were completing every day. Several weeks later, they visited the center and gave the visit a favorable report.

The kids gave me several stipulations for their mother’s placement: The community needed to be Catholic. She had about enough money to pay privately in an assisted living community for about three years, but they wanted her to be able to stay there for life.

I found a community that fit those stipulations as it had a benevolence fund that was available to residents who paid privately for three years. The community had assisted living and an assisted living unit with memory care. The level of care in the memory unit was very high, with the care almost bordering on intermediate level nursing care (i.e., they were helping some residents in and out of bed, and giving total assistance with some activities of daily living). There would be no need to move a person to skilled nursing unless they developed a serious medical problem. If a move to a skilled nursing were needed, the community had an agreement with a fabulous Catholic nursing home within 5 miles where the resident could be transferred. As my clients’ mother is still relatively young, she could conceivably stay there in assisted living for life unless she developed a serious problem. To me, avoiding a second move with a person who has Alzheimer’s is critical. The administration also required that the resident stay for one week so the staff could assess individual needs and place the senior appropriately.

Since my job is to show my clients all of the options available, I showed the daughter the costs and descriptions of the care for several of the assisted living communities that specialized in memory care. But unlike my primary recommendation, these options required that she would have to move to a nursing home that accepted Medicaid once her funds were exhausted and before she was ready for that level of care.

So here’s what happened. After visiting my primary recommendation, my clients liked it but made no commitment to move their mother. After meeting with all three siblings, there was extreme denial, argument, and hesitation with regard to their mother’s care because “at times she does so well.” They took their mom to Mass at the community once a week, but never made a commitment to place her there. In addition, they didn’t take her to the day care community as suggested, nor did they hire the home care agency to watch her at night. The daughter frequently called me in a panic because her mom was getting worse, but the adult children failed to act. When they made a decision to move her, the community was full with a waiting list.

Subsequently, the daughter called me and said the family is moving their mother to one of the memory care assisted living communities I recommended. The daughter asked if they should move their mom there on a temporary basis until a place at the other community opened up. I said it was unfair to subject her to a second move and to be prepared to move her permanently. As it stood, my clients’ mother was on the borderline of qualifying for the benevolence fund at the primary recommendation. The expenditures she’d have to make to move to the other community would likely disqualify her.

So here’s the bottom line. She is now moving to a community that’s not Catholic. She will run out of money in three years, and potentially move to a Medicaid nursing home before she’s ready. Unfortunately, the children’s procrastination–prompted in part by their mother’s ability to “fake it” and to fool them with “good days”–shut her out of the better deal.

Contact Andrea Donovan if you need to determine what type of living arrangement is appropriate for your loved one with Alzheimer’s Disease.

andrea-donovan100Andrea Donovan Senior Living Advisors
361 Nuttall Road Riverside, IL 60546 708-442-7174 708-415-2934 (cell)