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Mutual Caregiving
By Camilla Hewson Flintermann

(Page 2 of 3)

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 Parkinson's, 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 hospice 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.


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