Caveats for Caregivers (4)

This is my fourth essay on caregiving, first published on another website on May 4, 2012.

You know you are getting old when you hang a pendant around your neck with a button on it. Now, I know you have seen that commercial where the woman falls in the bathtub and lies there, unable to move, until her daughter shows up four hours later.  As horrible as that prospect sounds, there are two reassuring features about that commercial:  first, it was not her son that found her in that situation; and second, at least there was someone, daughter or otherwise, who had the key to her house and came over to see her that same day.  If I fell in the bathtub and broke my hip, no one would find me until the landlord decided to evict me for not paying the rent.  And so, around my neck the pendant hangs.

On the one hand, a medical alert system allows us to keep our independence, in the sense that it allows us to continue living alone instead of moving in with our children (if we have children, that is).  But on the other hand, it is an acknowledgement that we need some kind of assistance, even if it is only from the operators who are ready to help us should we fall, something that never crossed our minds when we were young.  By hanging that pendant around your neck, you are made aware of the fact that you are losing your independence in the very act of trying to preserve it.

But that we can joke about.  The real loss of independence begins when we give up the keys to the car, knowing we will never drive again.  Then what? Setting aside the question of cost, a not insignificant consideration, the next logical step in trying to preserve some degree of independence is having people come to our home to provide us with various goods and services, such as transportation to the store, help with bathing, and Meals on Wheels.  Or, we can move into an independent living community, which is essentially an apartment complex replete with all sorts of amenities for the elderly, such as a shuttle to take people to various stores, bathrooms that have grab bars, and a cafeteria on the premises.  When it is no longer safe for us to be around an oven, or when we cannot remember to take our medicine, we can move into an assisted living facility.  And finally, when our mental or physical limitations become severe, we give up the last vestige of independence and move into a nursing home.

I once imagined that my mother would proceed through each of these stages in just that sequence, in what might be thought of as a natural progression. However, because she had me to help her, she never needed to be in an independent living facility, and then, all of a sudden, she went to the hospital, and from there to the nursing home.  For the next two months, a nursing home was exactly what she needed.  But then she got better, at which point, putting her in assisted living became a genuine possibility.  Not only would the cost be less, but also she would have a private room.  And, inasmuch as my plan met with the approval of the nurse practitioner and other professionals in the nursing home, I decided this was the thing to do. What may be critical to what follows, however, is that this was the reverse of the natural progression.

I cannot, of course, speak for all assisted living facilities.  I can only relate my limited experience in this matter, which you may regard not as laying down a set of absolute truths about all such facilities, but as something to be aware of as a possibility.  First, there was a fee to “enter the community,” which was a thousand dollars at one place and two thousand dollars at another I considered. Second, they required thirty-days notice in case my mother should need to move out.  To put these two items in context, it must be borne in mind that at this stage of life, a lot can happen in thirty days.  In other words, I might have paid the fee and moved my mother in, only for her to undergo a sudden decline in health two days later, necessitating a move back to the skilled nursing section, forgoing the fee and a month’s rent in the process.

Then I found out that the rooms were not furnished.  Maybe I should have known better, but I thought the rooms would come with a hospital bed, a dresser, a chair, a lamp, and so forth, just like the rooms in a nursing home. They did not. Fortunately, the manager had a lot of donated furniture in storage that he let me borrow at no charge, or else I would have had to spend a lot of money setting it up.  The bed could have been a real problem.  My mother needed more than just a twin bed; she needed a hospital bed. Fortunately, again, the administrator was able to get Medicare to pay for a rental.

Then I had to buy sheets, towels, wash cloths, and the like.  In other words, stuff that was supplied automatically in the skilled nursing section would have to be supplied by the tenant in an assisted living unit.  At the department store, as I was about to buy three sets of sheets for my mother’s bed, I had the good fortune to be waited on by a woman with experience in such matters (she had been a caregiver for her father).  She informed me that a hospital bed needed extra long sheets, since hospital beds are slightly longer than twin beds.

As for the towels and wash cloths, you may be wondering why I didn’t just use the towels and wash cloths that my mother had had in her apartment. The answer is that I had already let go of her apartment, and had found it necessary to throw away a lot of good stuff that was simply impossible for me to stash in my own place.  So now I was going to have to replace much of what I had just thrown away.  One of the CNAs (certified nursing assistants) told me that I would need towels not only for my mother to dry with after bathing, but also for the CNA to wipe up the water on the floor that would inevitably be there when she used the handheld showerhead to wash my mother.  Without giving it a second thought, I bought a bunch of white towels.  When she saw them, the CNA announced, in a manner that would brook no exception, that I would have to buy colored towels, because white towels must never be put on the floor.  I was so awed by the gravity of her demeanor that I accepted this pronouncement without question.  As I had already put my mother’s name on the towels with a marking pen so that the laundress would know to whom they belonged, it was too late to return them.  So I bought a bunch of colored towels, and put them in the cabinet next to the white ones.  Three days later, I saw another CNA, who had just bathed my mother, wiping up the water on the floor with one of the white towels.

Then there is the toilet paper.  Even that had to be supplied by my mother, which is to say, by me.  Now, I was not worried about the cost of the toilet paper or other sundry items (facial tissues, soap, toothpaste, etc.).  The problem was that even with the availability of a shuttle to go to the drugstore, my mother was not really capable of handling money or remembering what to buy.  And while I visited her every day, and would normally be able to buy the items myself, I do get sick from time to time.  A mere cold can incapacitate me for a week.  What would happen if I got sick just when my mother needed more toilet paper?  In fact, I had surgery scheduled for myself the next month, and I could not be sure how long I would be convalescing.  In other words, when my mother was in the skilled nursing section, the room was furnished and supplied automatically, and even should I be sick for a month, I would know that she would be completely taken care of.  In the assisted living section, the situation was somewhat more precarious.

After about six weeks in assisted living, my mother fell twice, each time in the middle of the night.  Since the assisted living section is less staffed at night, I was told I would have to hire a sitter for her during the nighttime. This additional cost would have completely defeated the purpose of having my mother in assisted living, and so I moved her back to the skilled nursing unit, where, with hindsight, I guess she really belonged.

I hope that I will not be misunderstood.  Assisted living is perfect for many people, and the one where my mother briefly stayed was excellent.  I simply was not prepared for all that was involved in placing my mother in an assisted living facility, the result, no doubt, of backing into it from a nursing home, instead of following the natural progression.