Ten Percent of the World’s Population Live with an Ongoing Disability

The memes are all over social media.

They compare to the year 2020 to the plaques of the Bible. They show people unfazed by possible news that an asteroid is set to heat the planet later this month. They joke about students and teachers entering the school year dressed head to toe in hazmat wear. And while the challenges you have faced since mid March last spring have not been easy, the phone call that you received last week was more than you could handle.

The nurse from a hospital in Kansas City called to say that your aunt has suffered an episode. Later in the week the failed dementia tests would show the root of the situation, but at the time the nurse simply explained that your aunt said she had fallen in her home and had made her way outside and asked a neighbor to take her to the hospital. Dressed in filthy pajamas that were not meant to be outside of the home, the neighbor obliged and within the day you received the call as the next of kin. The nurse wanted to know if you had any preferences about the kind of rehabilitation center your aunt would be moved to once she was discharged from the hospital. Just a couple of hours away, you talked to your boss, went home and packed a bag, and drove to be with your aunt.

The months of lining up care for your mom in your home and a later move to a dementia wing of a nursing home had not prepared you for how you would find your aunt. The discussions with your mom’s caregivers about the right kind of shower chair for rehab patients did not compare to the sadness you felt when you entered your aunt’s room. You were masked as per protocol and it took your aunt a moment to recognize you. When you were able to catch your breathe, however, the nurse took you into the hall and explained the results of the testing that had performed so far. When you left the hospital that first night you planned to stay at your aunt’s home, but found it so filthy that you, instead, checked into a hotel. Shortly after falling asleep, the hospital called and explained that your aunt had just used her cane to take some swings at the nurse and the police had to be called. Assuring you that a good night’s rest was your best course of action, the nurse also explained that they felt as if your aunt was sedated enough that she, too, would rest until morning.

The next day, of course, was even worse, your memory of the conversations about a shower chair for rehabilitation and titanium wheelchair alterations were a walk in the park compared to the conversations the doctors and nurses had with you about your aunt. At least with your mom, you had been able to see the progression on a weekly basis with the regular family visits and dinners. The current situation with your aunt was made even more frightening by the fact that when you saw her tow months ago everything seemed fine. With no children of her own, however, your aunt was going to be relying on you not just for the authorization of a shower chair for rehab purposes, but for decisions about long term care.

Long Term Care Decisions Are Rarely Easy

From the simplest of choices like what kind of shower chair for rehab to more complicated plans for making a home accessible to a wheelchair, families who are in the process of helping parents or grandparents deal with the agin process, aging can be a challenge. And while the news stories of a smattering of men and women across the nation celebrating their century birthdays may seem uplifting on the surface, few of these celebrations do not have a back story. For while more and more Americans are living longer, the process of aging is not always kind.

And the fact of the matter is that just when you think that you have a handle on the physical limitations your loved one is facing, the realization that slipping mental awareness can being is often far more frightening.

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