You Don't Get What You Pay For

One thing we’ve learned about Alzheimer’s care is that you don’t get what you pay for. Quality of care doesn’t correlate to cost of care.

For instance, my Mom was getting excellent care in the assisted living wing of the retirement village she lived in, a few buildings away from my Dad’s apartment. The facilities were lovely: she had a spacious, private room with an elegant seating area composed of Aunt Opal’s Queen Anne furniture. The staff was friendly and supportive, offering daily activities and keeping the place and residents clean and comfortable.

Despite the good care, in less than six months, Mom started falling. One of these falls happened when she was trying to stand up from a chair to her walker. She fell on her knee, fracturing her femur at the hip joint. From there, she went to the hospital, to surgery, and to the rehabilitation wing for physical therapy, costs mounting every roll of the wheelchair.

In physical therapy, she failed to make enough progress for the doctor to clear her for weight bearing activities, so in one of the great ironies of advanced modern medical care, the staff stopped exercising her, and the insurance company refused to pay for any more physical therapy.

Mom was left to lie in bed or lifted to sit in a chair. I don’t have photos from this hospital stay, but my sister’s report etched a vivid mental image of Mom slumping, bra-less in a loose shirt and stretch pants, her hair unwashed,  no makeup or jewelry, listless and incoherent. For my mother, who always cared so much about appearances, her unkempt state must have been viscerally disorienting. She could not have felt like herself. The physical inactivity further assaulted her cognitive functions, since, according to my friend and colleague Dr. Kristi Multhaup, an expert in the psychology of aging, the single most important thing you can to do improve cognitive functioning is to get aerobic exercise.

Fortunately, my watchdog Dad intervened and managed to get her more physical therapy. Eventually, she was approved to move back to the assisted living wing—provided that he hire a private caretaker to assist her 24/7, which would make the total cost of her care $20,000 a month. Obviously, this was untenable.

Never fear, the retirement facility assured us, we can offer a more affordable option: a quad room in the nursing wing could be had for a mere $12,000 a month. Even if we could afford this option, the idea of my Mom sharing a room with three strangers in a dreary facility whose halls smelled faintly of urine was appalling. Dad considered moving her back into his apartment. My sister and I pounced on that idea like two lionesses competing for the kill. No way.

10710561_4824328502323_3763052288889681166_n Then someone told Dad about another facility, Arden Courts, a  home for people with dementia in Hamden, Connecticut, about 20 minutes away and, coincidentally, across the street from Whitney Center, where my godmother Millie Reilly lived out her last days with Alzheimer’s. In this cheerful, clean, smaller facility, Mom could have a private room for $6000/month. For less than 1/2 the cost charged elsewhere, at Arden Courts, they dress her beautifully, do her hair, encourage physical activity, and make sure she participates in other activities. Even the food is better. You can see from this picture how lovely she looks, brightening with delight at a surprise visit from my brother and her youngest grandchildren.

Mom’s situation is not unusual. According to Jane Brody, the “quality and extent of services may still vary widely” among dementia wings in nursing homes. The price also varies, in no direct relation to the quality of the services.

As good as Arden Courts is, $6000 a month is hardly a bargain rate, and we are very lucky that Mom has long-term healthcare insurance. Others aren’t so lucky: my neighbor’s cousin just visited from New Hampshire. Her mother, who has Alzheimer’s, is being cared for by her 89-year-old father. She works full time and drives 1 1/2 hours round-trip to check on them every other day. New England winter weather only makes the drive more imperative, since she must shovel their driveway so that her father, who still drives, won’t slip and fall. They have no long-term health care insurance and can’t afford the kind of care my Mom enjoys. So the other lesson Alzheimer’s teaches us is: you don’t get what you can’t pay for.

AlzheimerscostofcareThere is a gaping hole in Alzheimer’s care, and at some point, we’re going to need to address this as a society. People are living longer, and people are living longer with Alzheimer’s. We need to find ways to make Arden Courts available to all families suffering from the ravages of this illness.


4 Responses to “You Don't Get What You Pay For”

  1. jean kirkham says:

    Dearest Suzie——so depressing and so expensive. We are so blessed to have OHIP here in Ontario and the cost Canadian for nursing home wards is about $2400.00 per month and about $3300.00 for a private room. This is a fixed rate and cannot be changed by the nursing homes.

    Great emphasis here now also on the care of those who have Alzheimers. Wonderful Alzheimers Societies and geriatricians—All free for consults. We would not change our health system and it is NOT Socialist!!–It is just Canadian.!!–started in Saskatchewan by Tommy Douglas of the NDP party–many years ago. Much emphasis also on how to keep people with dementia in their homes as long as possible.
    love to all of the family—-jean and brian xxoo

  2. Dina Ditacchio Wentworth says:

    Suzie, your words could not be more true, and I will share with you a similar story, the only difference being that this woman had suffered a stroke. At 73, Rose went into the hospital for what was certain to be just another routine hip replacement, according to her doctor. The surgery went well, but later that evening, while her family was visiting, they notice her speech was slurred, and the left corner of her mouth began to sag. She was having a stroke. In an instant, her life was forever changed. Gone was the plan to travel to Alaska again over the summer, and to Texas to see her son and his new home. Her new reality had become weeks in several nursing homes, disguised as rehabilitation centers. When her 120 days of Medicare coverage ran out fir her therapy stay, her family was advised that they had to take her home, or begin paying $8,000 a month for a semi private room. This did not include any therapy. That ship had sailed in the eyes of Medicare. For one month, her family scrambled to come up with the money for one monrh, while they desperately tried to come up with an alternative. No one was home who could care for her full time. She had suffered paralysis on her left side and required full assist. She spent most of her days and nights, lying in her bed, ignored by staff, alone, deprived of her gig not while waiting hours for someone to answer her call bell so that she could be transfered to the toilet. ” Just go in your Depends,” they said. She wanted to die. She felt helpless and at the mercy of uncaring staff. She could not move to an ALF, because she needed more care than what they could provide. It’s funny how chance meetings can take place, because her daughter was a regular blogger who I followed. One day she poured out the story, asking for advice on what to do. To jump ahead here, within 3 weeks she had moved from the nursing home, into my small Adult Family Care Home. Her husband, children and grandchildren were all just 10 minutes away now. Therapy resumed once she was discharged from the facilty. She had her dignity and self respect back again. It’s been a long and difficult year for her, and it’s heartbreaking to know that she will never take that trip to Alaska now, or even a plaNE to Texas. Our outings are less frequent now, because she is slowly declining, but she’s declining in style! She tells everyone that she is perfectly ” coiffed,” even when just sitting in her recliner, and her clothes have no wrinkles. It’s these things that she appreciates most now. It is simply a sad state of affairs, when you see an older couple who spent their entire lives, scrimping and saving for retirement, only to have it all go towards their care. The system is terribly broken. As a former state Ombudsman, families would always ask how it could be that Medicaid could pay $8,000 a month for a person to live in a nursing home, when it would have been possible for them to remain in their owe home, had funding just been available to help pay for a family member to be a caregiver. I had no answers. It’s just a sad state of affairs. When I read about your mother, I am reminded of my former residents who had Alzheimers, and it breaks my heart. You must know, that it is so much more difficult for the family, than it is for the patient. Your love and continued support truly will keep her going. I wish you and your family all the best.

  3. Dina Ditacchio Wentworth says:

    Please forgive my numerous typos!

    • Suzanne Churchill says:

      Who could bemoan, or even notice, a small typo in such a profoundly moving story. I had not heard of ALF before, but such services, when available, seem ideal. Smaller may be better in Alzheimer’s care, and closer to home is always good. Your work must be exhausting, but how valuable it is for the patients and their families. I have such admiration for you, and your story gives me hope for others.

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