Since a medical crisis in June requiring hospitalization, I got my aunt back into her own home and familiar surroundings by arranging for 24-hour care, seven days a week. She has mid-stage Alzheimer's Disease. She recognizes me, but doesn't remember names of other people who she doesn't see as often. She recognizes her own home, but other environments (such as the hospital) were bewildering. She didn't know where she was, and was agitated and upset. We truly believe that if she were not able to return to her own home, she would have become so bewildered, she would have given up and died.
One would think, then, that by arranging for full-time care in her own home, my job was done, since she is never alone any more and someone is always there to help her with bathing, dressing, and making sure she eats nutritious foods and drinks liquids to avoid dehydration.
On the contrary, my job has transitioned to activities that I probably spend 40 hours each week doing:
- Visiting: having conversations and keeping my aunt's mind active. Since she speaks several languages, I communicate with her in English, Italian, and Spanish, and rely on a caregiver who speaks French to keep that going, too. It is so critical to help keep my aunt calm and reassured by having regular, meaningful, visits. Talking about family, her life history, as well as current events is helpful in keeping her focused on living.
- Grocery and supply shopping: through the summer, I was having to make almost daily visits to stores to get things that my aunt and her caregivers consumed. It was getting frustrating, to say the least. However, I developed a listing of supplies and foods that she regularly requires, and ask caregivers to note items on the list as supplies run low, so I can reduce my shopping trips to twice each week. That doesn't always work, but it's better than before.
- Supervising: caregivers are highly trained, but they're also human. They need direction, information, and ideas on how to interact with my aunt. From showing them how to operate the DVD player so my aunt can watch a movie, to a myriad of other activities -- I could write a book. No wait; I have. I wrote a "caregivers guide" that provides a thorough orientation to my aunt's needs, medication schedule (and the effects those meds may have), and where things are located in my aunt's small apartment.
- Arranging things: from doctor's appointments and getting her there (which is no easy feat!) to calling in favors for home visits by a friend who will cut her hair and clean her apartment, to twisting arms to arrange to get her a flu shot in her home (and not have to go to a clinic), to getting a Notary Public to witness her signing financial documents, there are a lot of personalized arrangements that only a designated "primary caregiver" (that's me) can make. I'm happy to do it, though some of these things take a lot of time and, as I said, "twisting arms." Thank goodness I know a lot of people in the community so I have a number of people to reach out to for assistance.
- Paying the bills and doing finances: I have been given financial power-of-attorney, so I can take care of my aunt's finances. I keep track of all of those transactions on the computer, and provide monthly reports to her sons who live out-of-state for full transparency. Not that they distrust me (the opposite is true), but I don't want anyone, anywhere, to question how I'm handling her finances.
Life is short: show those you love that you love them.
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