Mutual Caregiving
By  Camilla Hewson Flintermann

Having been a caregiver for twelve years for my husband, Peter, who died in June, 2001 of Parkinson's disease, I have been very aware of the role I filled, and the things I did for him, especially as his disease worsened. I have also at times encountered caregivers who resisted the use of that title, and said in their case they felt they were "care partners" with the ill person. I have been thinking about this differentiation since Peter's death, as I am mostly alone day-to-day, despite the loving attention of family and friends. The term which has come to have special meaning for me is "mutual caregiving ", for I realize now how he in so many ways , some of them obvious, others very subtle, also took care of me .

In the early years of Peter's illness, when he was only mildly affected, he developed a ritual of rising before me, and bringing me the morning paper and first cup of coffee in bed, where I was usually accompanied by our cat. He did this lovingly for several years, until getting up became harder for him, and his grip on the coffee mug was becoming unsure. When he could no longer do it all regularly, he would still do what he could manage, and I know that it comforted him to continue taking care of me, as he had always done in other ways throughout our more than fifty years of marriage.

His insistence that I learn how to handle the family finances, and become educated about investments , his endless--sometimes annoying-- cautions about the pitfalls of managing things, was in essence another way of caregiving, though at times I resisted it.

As time passed, the balance of care gradually shifted more to me and with each small erosion of his ability to self-care, my caregiving role increased. At times, he struggled to remain more independent, and when this was safe and realistic, I was glad to encourage it. He hated having to turn over more responsibility to me, worrying about my "being worn down" by his limitations. We simplified our lives by moving to a brand new retirement community, where help of many kinds was built into the setting, and he felt good to know that when he was no longer with me, I would be settled and have resources available for my changing needs. His willingness to do this, despite his belief that he would be in a nursing home before our unit was even built, was another way he was caring for me.

Often he spoke of how he worried that he would see me fading and worn down by his care, and that before this could happen he would rather move to a nursing home, so I could "have a life" again. Even when he was experiencing serious episodes of dementia, as happens with about a third of persons with Parkinsons, he still retained his loving concern for me, and accepted help from others so I could have respite. All of these things were evidence that he was still taking care of me, in the only ways remaining to him---the caregiving was still mutual !

After a crisis, when he fell repeatedly but refused my help, not knowing who I was, things came to a head. He was refusing to take his medications, or to let me come near him, nor would he let the Life Squad members whom I had finally called help him to bed. It happened that a mutual friend, who is also a therapist, came over to be with me, and Peter did allow her to give him the medicines, and then agreed to be helped to bed. As she sat with him for more than an hour, while the meds restored
his lucidity and he recognized me at last, he talked with her about his life, and expressed the belief that he was "ready to go". He had always insisted on a Durable Power of Attorney for Health Care which refused all but "comfort care" when his quality of life became unbearable for him. He told her how he feared that his Parkinson's was destroying me, knowing that I had recently been put on an antidepressant to help me cope with his increasing dementia. His greatest concern was that he could somehow still take care of me, even as his own life was ending.

The next morning, a Sunday, he insisted I call two local nursing homes we had visited, leaving messages for them to return the calls the next day. Within a week he had chosen one to move to, and things were under way. He never wavered in this, in spite of my questioning if it was really time. If it had not been for the increasing dementia, it might have worked, though the separation after so many years of togetherness would have still been terribly hard for both of us. However, with the sudden complete change in his life, the dementia accelerated , and he soon became so paranoid that he refused to stay in the nursing home, and was hospitalized in a geriatric psychiatric unit in a city about an hour away from home . After a week there, during which he often refused food and medicines and his weight dropped to 104 pounds, it was clear that hospicee was the next step. He agreed to moving to their inpatient unit in the hospital, where his condition continued to worsen, and this mildest and most peaceable of men even became combative at times, out of fear and disorientation.

One day when I visited he seemed lucid, and said things like, "I won't be here very long...remember what I told you?" I asked directly if he was telling me he was refusing food because he wanted to die, and he smiled, then softly said, "Thank you." At that moment, he was truly "there"--and I knew it was not depression nor dementia speaking, but his loving self I had known so long. Although I had hoped to take him home, with hospicee care, the recommendation was that I could not handle him, even with part-time aides. We were lucky to find a bed in a nursing home just outside our hometown, where I and other family members could see him frequently--a true blessing. He was there about a week, under hospicee care, being offered food but allowed to refuse it if he wished, and visited by daughters, sons-in-law and grandchildren as well as by me. It was clear he was gradually withdrawing, his body entering the natural shutting-down stage. One night, after we had all been there through the day, he simply went to sleep, and slipped painlessly away.

Our grief has been tempered by the realization that in so many ways he is with us still, and that he was as fully as possible "in charge" to the end, making his intended choices, and "doing it his way". In other words, given his loving understanding of things, he was still taking care of me , as he always did so well.

This is our personal story, of how I learned from Peter the importance of looking for the balance in a caregiving situation. Of course, no two relationships are alike, nor are all marriages happy. That said, it can still be helpful to the caregiver to become aware of ways in which there is reciprocity. Often the job of being a caregiver seems so endless and even at times thankless, as gradually the patient may slip into a more self-centered mode. Resentment, anger, and the accompanying guilt can be overwhelming for one who gets little rest, and may feel her/his own needs are not considered. It can be hard to identify ways in which there is some mutuality in the caring, but to understand that it can be present is both important and comforting for the "designated caregiver". It eases the daily burden we struggle, with as we realize we may not have to do it all, or all alone. Perhaps we can really find a partner in the person we care for, something which is a wonderful realization for both of us.

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