Life Care Planning: Back-up plans can fail and the disease will progress

What are Alzheimer’s care options?

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Fern’s mother, Frances, has familial dementia, a rare form of Alzheimer’s, with onset before the age of 60. Her symptoms began at 58, but fortunately Fern’s father, J. B., capably assumed her care until he died at age 82. Frances, now 80, had no serious physical limitations, but significant memory loss and was incapable of living alone.

Fern, her older siblings, Jean, and Jerry met to decide what to do with Mom. After their children had left home, Fern and her husband J.B had built a large house which included a wing designed specifically to accommodate an aging parent, if necessary. Jerry, who had been divorced, had recently remarried a woman with two young children by a previous marriage. Besides, his company was transferring him to Alaska, too isolated an environment for Mom. Jean, who was five years older than Fern, was juggling a demanding career and three teenagers. The consensus was that Frances would move in with Fern and J.B. Jean would act as back-up caregiver if for any reason, Fern and J.B. no longer could.

Frances had always had an easy-going, pleasant disposition and the dementia had not changed that. She was compliant with her medications and with any boundaries set for her safety. Fern and her mom had always been close and Fern adored J.B. Consequently, the plan of cohabitation worked out well for the next ten years.

For many years, Fern, Jean and Jerry had been aware the specific genes causing Frances’ dementia could have been passed on to them, especially since Fern’s mother’s mother had also had early onset Alzheimer’s. Determined not to let that possibility rule their lives, they refused to discuss or plan for its occurrence. Then the worst happened. At age 58 – the same year as Frances’ onset – began forgetting things at an alarming rate.

Within three years, Fern’s memory was seriously impaired. Additonally, she had become severely withdrawn and inattentive to Frances’ needs. The back-up plan for Jean to take over evaporated because she had been diagnosed with pancreatic cancer. Following chemo and radiation therapy she was clear of cancer but no longer had the strength or stamina to take on caregiving. And her life expectancy was shorter than Frances or Fern’s.

Fortunately, Frances had resources reserved for long-term care.  She had given J.B. power of attorney, which allowed him the authority to hire a fulltime caregiver to come into the home. But J.B. realized that at the rate Fern’s and Frances’ conditions were deteriorating, soon home health care would not adequately provide for their needs. Nor could they afford that fulltime care indefinitely. What was J.B. to do?

Options for Care Available at Advanced Stages of Alzheimer’s

The natural progression of Alzheimer’s had allowed utilizing home health care for Fern and Frances for a time but, as their disease advanced, J.B. was forced to explored the other options for care for them. He found a number available.

Adult Day Care

Adult day care centers in their area provided safe environments where Fern and Frances could socialize through structured activities and programs designed to help maintain as much function as possible. Many offered music and art therapy. Some even provided transportation and meals. These facilities also offered some relief to the budget, as they tended to be less expensive than hourly home health care.

J.B. was able to take advantage of day care facilities for a while. Eventually, however, Frances and Fern needed more assistance with dressing, bathing and personal care.

Assisted Living

Fern’s and Frances’ disease had progressed to the point that home health and day care weren’t sufficient but they didn’t yet need skilled nursing care. J.B. discovered assisted living facilities which offered graduated levels of support as needed. Not only did the assisted living facilities provide a 24-hour staff, they also included recreational activities, housekeeping, laundry and transportation services.

Frances and Fern could own separate apartments or they might share one apartment to help reduce costs. J.B. found a facility close enough to his and Fern’s residence that he could remain at home and visit daily, if he so desired. He could also opt to sell their residence, put Frances in one apartment and secure a larger apartment in the facility, which he and Fern might occupy.

When J.B. sought professional assistance to compare the cost of maintaining the separate household versus selling, he was advised that would depend upon various factors, including whether he owned outright or had a mortgage, the maintenance expense, the utility costs and taxes on the property. In J.B. and Fern’s case, selling seemed the more economical option.

Once he had made the decision to sell, J.B. explored moving to a planned village-type community where he might live independently on the same campus while Fern and Frances lived in a section of the community that provided the additional care they needed. Ultimately, he decided that option suited all their needs best.

Nursing Home

J.B knew that the time would come when either Frances or Fern – or both – would need skilled nursing care. He understood at that time he should consider nursing home care. Fortunately, their planned community offered a nursing home within the complex. When the time came that they needed round-the –clock medical care and supervisions, Frances and/or Fern could simply be moved from one structure to another while remaining in the same environment to which they were accustomed.

Whether faced with familial Alzheimer’s or not, families facing this diagnosis for a loved one should familiarize themselves with all the options for care available in their community. 

Sandra W. Reed is an attorney with Katten & Benson, an Elder Law in Fort Worth, Texas. She lives in beautiful Somervell County, near Chalk Mountain. If you have questions about this column or wish to suggest a topic of interest, Ms Reed may be contacted by phone at 254.797.0211 or by email at swreed2@yahoo.com.

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