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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