On Caring and Caregiving: The Balancing Act
Caregiving is very central to human functioning and essential for all human societies. But it is easy to forgot how central and how essential. I have been a caregiver for many years now. I must note how much I was influenced by Beverly about caring and caregiving through our years together, long before her Alzheimer’s. This was learning by example; I cannot remember any instructions I ever heard about caregiving. Other instructions were plentiful in those years, e.g., changing diapers, cleaning the stove, driving. She showed me in many ways the importance of caregiving and how to be effective at it. Her life in family, neighborhood, and work always put caregiving as the focus. As a high-level administrator in a large home health company, she always made caring central in her messages to employees.
Among my favorite memories of caregiving: We visited her parents as often as possible; her Mother had Alzheimer’s and died of it. Beverly taught me lessons by example and in subtle ways. The incident I remember well was a time we visited her Mother who was then in a Nursing Home. Beverly’s sister was there when we arrived at her Mother’s room. After a little chatting, the two of them wanted to leave to get some food, but Beverly asked me to stay with her Mother. It seemed like I was the wrong person with the wrong assignment, but there it was. After they left, it was difficult to talk with her Mother, due to her advanced Alzheimer’s; she seemed lost and somewhat unhappy. There was a Bible on the night stand, so I picked it up, thumbed through the various Bible books, then finally settled on Psalms for reading. As I read to her, she seemed to come to life in a positive way. There was a spark in her face and behavior that I had not seen in recent times. Many of these passages were familiar to me too—and calming. Beverly had made the right assignment and I had learned.
Beverly’s caregiving stayed prominent in her journey through Alzheimer’s. Since she moved into the facility, she constantly works at trying to be helpful to others—residents and staff of the facility. Sometimes it was frustrating for me and for others. She often tries to help someone with a walker get down the hall; yet the coordination of moving herself and supporting him or her results in creating difficulty for their walking. The staff always knows that she wants to help in every way. So they have to create those “happy lies/redirections” to head off some of that helpfulness, even her wanting to help with giving medications to residents. She is also ready to pitch in when there are difficult situations, such as fighting or another person being very angry. These are occasions to find “happy lies” so as to redirect her to her room or another safe place.
Another noteworthy trait about her is that, because she always wanted to care for, and take care of, others, it was not easy for her to accept care from others. I heard comments to her from nurses and from nurse’s aides that she needs to accept help from them. She must have a feeling of loss of her own independence. In retrospect, there is no doubt that I did not often enough consider her feelings of loss of control. She was such an independent spirit; I, hoping to help situations, would direct or correct her and, as a result, make her upset or angry. “Happy lies” about allowing the person with dementia to have their own control of what they say and do.
Caregiving at home was my life with Beverly for at least 10 years. Early in the process it was relatively easy because the symptoms of Alzheimer’s were very mild. Soon I became the sole cook and dishwasher operator; not of any consequence. She continued to drive to work early on, though that was concerning. Lesser issues, like not being able to manage a mobile phone for anything, were fine. Indeed, setting up her phone calls to friends and relatives was routine, but it was very happy for us both. The actual diagnosis was more troubling than her condition. The diagnosis itself required mutual caregiving, as we both knew what would happen over time. Emotional support between us was essential.
As the disease progressed, there were changing components of caregiving. She occasionally wandered off in moments when something else distracted me. Since we were always together, wandering was preventable. Indeed, the one occasion in that time period that scared me was a Winter evening, already dark, snowy, and very cold, when she left without my knowing it. I was ready to contact the police when a woman called to say she was with Beverly on a street a mile or so away. The only other notable wandering was when I was doing an errand for our son. I quite a few miles to a store with her in the car; then she refused to go in the store with me. I believed her promise she would stay in the car; upon my return to the car in 10 – 15 minutes, she was gone. I spent an hour of walking around the shopping area, checking in every store, and finally found her a long distance away by driving around the whole area. Caregiving is being happy, not angry, to find her.
More common issues arose over her anger, usually traceable to not complying with her wishes or her misinterpretation of something I had said. Caring from me involved trying to calm her rather than being angry in response. A striking incident was when her sister from Arkansas was visiting. We had gone out to lunch, but Beverly was determined to not return home, so I complied and drove around, headed nowhere, for an hour or so. When I announced that we were now headed home, that produced anger and strong swearing directed personally at me, the “bastard” who was driving. Clearly, based on her sister’s facial expression, the sister was shocked. Again, the natural caregiving response overcame any need to be angry about that.
But the anger issues grew in frequency and they became less comprehensible. More than once she became angry with me, leaving the car (at least we were stopped) and walking away. So I could either park it and chase her on foot or drive alongside as allowable on the streets; I tried each on different occasions. Either way I continued talking to her, trying to get her calmed and back in the car. This too required continued calmness on my part.
There was the increasing reality that I could not leave her alone. Caregiving became a 24/7 activity. Fortunately we both really cared about each other and had always liked being together. But this “always” caregiving became a burden; sometimes she was willing to go for a walk with me, but it was increasingly risky for me to go alone, so I did not. Occasional relief by friends helped. I made contact with a company who sent women as requested for a few hours each time. They tried hard to be “friends” with her. But her social intelligence quickly let her know that they were just trying hard to look like they cared. Caregivers they were not, only employees paid to ask her what kind of music she liked, etc. There is no blame here; caregiving is based on love and generally cannot develop from two hours of contact. These visits by paid help were consistently a bust. She was always friendly and welcoming, but these visits were not caregiving.
And visits from people we knew were not always caregiving either. A woman from church came one day, allowing me to get out of the house for an hour to get groceries. Upon my return, though, Beverly was angry. After this woman left, Beverly, in a furious mode, told me all the woman wanted to talk about was death and dying. I doubt that was true, but something went wrong.
Still several others have been successful at caregiving; what is entailed in success is hard to say, but it clearly requires caring and love. That is an individual matter for most of us, except perhaps in the late stage of dementia. Caregiving is a complex interaction between the caregiver and the person receiving care. How it happens is more than a delivery problem; it involves two people interacting. As Kleinman* discusses it: “The literature on caregiving generally fails to consider the central role of the care recipient. The caregiving relationship involves the committed efforts of both.” (p. 168). For many years, Kleinman was a caregiver to his wife Joan, who had Alzheimer’s. Early on, she was warm and accepting, but late in the Alzheimer’s process, she became increasingly angry and difficult, so caregiving no longer was successful from him. This seems like a common experience, namely the caregiving from a spouse/child/friend is successful most of the time during much of the dementia process. But the disease ultimately disrupts the relationship between that intimately connected caregiver and the person receiving care. As for Kleinman, this resulted in the necessity of engaging others, as he did with a successful live-in woman and later with putting his wife in a facility.
For a long time, Beverly and I managed our caregiving relationship, as much due to her love and responsivity as to my love, patience, and caring. Why would someone like me want to manage with and succeed for those many years? Of course, it was driven by love and it was there to be done for her sake. Caregiving is central to humanity as we function socially. The intensity in the caregiving of someone with dementia results from more extreme and very prolonged demands than most other caregiving. Raising children has the intense and long-term components, but the change in the care receiver is growth in a positive direction. For dementia, the difficulties increase and the caregiver must continue to cope, adapting to losses in their loved one’s function only to have new losses follow.
As we discussed earlier about ambiguity, there are often mixed feelings. After she was in a facility did I want to go and be with her? Yes, I love her and enjoy being with her. No, it is stressful because of some of her behavior; and it is sad that we have to live this way. And being in the facility is itself a difficult circumstance to adjust to. I have talked to other caregivers who said that it was difficult to be in “this place.” Kleinman describes these reactions as a tug-of-war between bitterness feelings from the burden and the stronger feeling that this is enriching for us both. And, in the moment of some unpleasant circumstances, the joy and love may disappear momentarily as anger and sadness dominate one’s feelings, then give way to the joy of doing the job that makes a difference in her life and my own. Caregiving is complex, though mostly fulfilling.
I can also say, as did Kleinman about his wife, that a critical missing ingredient in my effectiveness as a caregiver was that I no longer had the amazing knowledge and intuition that Beverly possessed about giving care. I had others to consult and help me, of course, but she had a magical talent.
Why did the caregiving at home end? There had always been moments, but the events of one week became too much. She was angry every evening through those days, unjustifiably angry by normal standards. She no longer accepted efforts to discuss her reactions and feelings. One evening she wandered the neighborhood; as I followed for her safety, her anger and paranoia controlled her behavior toward me. We had the great fortune that she found a neighbor (who was a health care provider) and told the neighbor that she was angry with me and fearful that I would harm her. The neighbor simply told her: “Beverly, you are a nurse. You know about Sundowner’s and that is what you are experiencing.” That simple explanation from a neutral party satisfied her. On another night she was angry and left the house around midnight without my immediate awareness. When I became aware, I searched for an hour and a half with no results. I called 911 and the police found her immediately and not far away. And another night that week there the terrible fall down the stairs, as described in the first blog, again precipitated by anger over something I had said. Then she was in the hospital, followed by rehabilitation, for a cracked knee cap, injuries to her face, and some difficulties with stability. So it was time to concede that care at home was failing. My caregiving was transformed into my being with her in a memory care facility. Other people could support the care I continued to give, by dealing with toileting, changing clothes, providing regular meals, etc. Still I was normally with her 5 or 6 hours every day.
And now, in the months of separation with COVID, what is the next step in caregiving from me? The separation, combined with regular telephone and interaction and observation through windows or plexiglass, provided a realization that she is happy and well cared for. And, of course, since I know so many staff members well, I get information about how she is functioning. In pictures, she shows that too, though the circumstances of pictures are often during music, where she is always the happiest. I am still a primary caregiver, but now less directly. After life opens up again, she will continue to be cared for by excellent staff. She needs very little of my direct care. I will always be involved in many ways, staying informed about her functioning and about the care, the medical issues, and her needs (such as clothing). And the administrative staff continue to have a zoom like connection for a conference about her with me every few weeks.
This is a facility that has the right attitude and practice of caregiving. She receives a lot of excellent care, no doubt in part a result of the person she continues to be; those providing the care are also in a complex interaction with her. The place is generally happy, residents are getting care and are treated with respect. There is music and dancing, parties, games played. In two days’ time recently, they sent photos of her happily doing a “bowling” game, sitting happily with her birthday cards on her lap, and singing with a musician. This is a place where individuals are valued and the staff is very tuned in to the person and that person’s capabilities and limitations. Kleinman has an interesting way of characterizing great staff caregiving, referring to the facility his wife was in, but true here as well: “They acted as if empowered to make their own independent assessments of the level of care required..”(p. 226). As he found (and true for Beverly’s facility) that staff, including nurse’s aides, showed the great human ability and motivation to respond to the person at their level, a better assessment than testing (see the blog on testing).
Caregiving, whether provided by someone close or by supporting home visitors or by staff in a facility, can only succeed well for the care receiver if the caregivers are present to the receiver, listen with receptivity, and are truly loving. In this facility, those traits seem dominant most of the time.
Kleinman argues that caregiving is “…an invisible glue that holds society together.” (p.237). And he goes on to state that “The every-man-for-himself mentality, which reveres the rights and needs of individuals more than concern for the great societal good, is fundamentally wrong…”(p. 237). What a message in the time of COVID where individuals proclaim their right to NOT take appropriate actions for the sake of others!
Involved caregiving ultimately makes us different people; we are transformed by the commitment and the experience of entering the other’s world in a deep way. We can care for ourselves and nurture our souls through caring for others.
*Kleinman, Arthur. The Soul of Care: A Moral Education of a Husband and a Doctor.
Viking. Penguin Random House, 2019