Caregiver/Care Receiver

As I sit here on Thanksgiving day, waiting to leave to visit my mother and then to go to my cousin’s for dinner, I think about the fact that I am on both ends of the spectrum in care giving. For the last six plus years, I have been the main caregiver for my mother. My brother, who lives in California, has not been here except twice when I called him to say she may be dying. I am her only child here, and although my Aunt Marie and Uncle Sam visit her, as do my cousins sometimes, I am the one who bears the main brunt of care, even as I fight my battle against this cancer. My mother was hospitalized with pneumonia in March 2008, contracted sepsis in the hospital, and spent seven months battling the sepsis, going through rehab, and being devastated by the infection. During that time, at least three times her doctors said she was likely dying and we would have to call hospice, unless their new cocktail of drugs worked. The sepsis went into her brain, she had a stroke, she was physically devastated by it, but she survived. This was much to the surprise of her doctors, who to this day say her survival was unlikely. That bodes well for my survival, I believe. Before she contracted the sepsis, she was living in the home she had lived in with my dad (who died two years earlier), cooking and taking care of herself, going out with her sister, and doing fine, albeit a bit frail from adult onset asthma. After the sepsis, as she was in rehab, it was clear there was no chance she could go home. She could only walk with a walker, could not cook any more, and was very weak. While she desired to go home, her doctor’s advice to me was to get her into assisted living. I spent weeks researching many facilities and found one that I liked, on the east side near her family and friends, albeit about 25 minutes or so from me. After Thanksgiving in 2008, we moved her in, telling her that she needed to stay there until she became stronger, because she needed at that time to believe this was only temporary. All of us, including my aunt and uncle, knew this was permanent and that she was never going to be strong enough to go home. Plus, 24 hour care at home was cost prohibitive.

Since then, I have been her main caregiver, going through about ten more hospitalizations with her (the last being on New Year’s Eve last year as I was finishing cooking dinner), including for blood clots, for a fall where she broke her hip, for exploratory surgery of her bowel (where she had a malignant mass that was left alone and has since disappeared), and for various other problems. Many times I received calls in the middle of the night and had to either rush to her apartment to drive her to the hospital or meet her there. My aunt and uncle, bless their hearts, usually meet me at the hospital if it is not in the middle of the night, and stay with me until she gets a room. I worry that this will happen again soon, during my chemo days, when there is nothing I can do.

As my mother has gone through these hospitalizations, each time her abilities have gone done and she has become more and more frail and less lucid. The last one, she was close to dying and was put in hospice this past February. Within a week, she rallied enough that she was no longer eligible for hospice. For me, however, she is now very, very limited. She cannot really go out, unless I get a wheel chair van. She walks extremely slowly with her walker in her apartment but is taken by wheel chair by the medical team at her apartment, to her meals. She no longer participates in any activities at her apartment, and does not sit in the living room or coffee room visiting with “the girls” as she previously called her friends there. Her world is her apartment, where she mostly sits in front of the TV and dozes much of the day. She also is not always lucid about things, because she is often dehydrated and very weak, which leads to a type of dementia. She has lucid moments, but in my visits, I cannot really have a conversation with her any more. I talk away, I do her laundry, I clean her apartment, I bring her a bagel and cream cheese, and I tell her I love her. She is happy to see me. She has no idea I have cancer. While she noticed my hair looked different the first time I wore my wig to her apartment, her question to me was what did my hairdresser do to my hair, and that it looked good. Since then, it is the new normal for her. I feared that telling her I had cancer would kill her – she relies on me being there for her and has said more than once that she thanks god I am healthy and can care for her.

On the other hand, I am the receiver of care given by my family and my friends. I rely on their care, especially during chemo, but even after. During chemo, there is little I can do, because my whole effort is spent fighting nausea and the other symptom I experience, and trying to eat and drink. After chemo I am exhausted, short of breath, have neuropathy and other symptoms, which are getting worse and lasting longer as the chemo goes on. The chemo is also getting worse, and has been horrid the last two times. I expect that next week’s chemo will be horrid as well. My caregivers worry about me, check on me constantly, are there for me during chemo and afterwards, feed me, walk more slowly with me when I have shortness of breath, check on me through texts and calls, cheer me on, and generally do what caregivers do. Without them, I could not imagine how I would get through this fight. It is strange because on chemo weeks I go from being completely debilitated from Tuesday through Thursday, completely exhausted on Friday and the weekend, to getting into my caregiver mode when I visit my mom on the weekends. I leave her apartment physically and emotionally exhausted, but she does not see that, because I put on my caregiver hat and do what I need to do. Sadly, I am often relieved once I am done and can go home and rest.

While I never expected to be the one who needed care, and frankly, did not ask for it in the past, now I am grateful and not shy about needing the care. As a caregiver, I know what it takes to care for others. As a care receiver I am so thankful and lucky to have a large community behind me. I do not have to ask for care. I am simply given it. In fact, my kids, while we were away for a long weekend in the sun in South Beach this past Saturday to Wednesday, took it upon themselves to decorate our house completely, put up a tree and my collection of mostly folk art Santas. They did this to surprise me and because they knew I would be tired and unlikely to do so myself. (We do Christmas decorations although Alan is Jewish and the kids identify as non-religious but believe in a universal god, because Christmas was magical to me as a child.) My kids acted as my caregivers in doing this for me, and made me cry in the process. They said they wanted me to come home to this, and to know I did not have to do anything. That is what care giving entails – doing for the person to whom you are giving care what you know they may not be able to do themselves and helping them through whatever challenges they are facing.

To those of you who are caregivers you know what this means. To those of you receiving care, you also know. Today I give thanks to all of the caregivers in the world, who think of others, help them and do not ask for anything in return. Your hearts and your generous spirits give love and support to those of us needing care. You demonstrate the best side of humankind. Have a beautiful Thanksgiving.

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2 thoughts on “Caregiver/Care Receiver

  1. August211982 says:

    Marilyn, you are blessing your mom as you care for her, and that blessing is returned to you. I hope you have a wonderful Thanksgiving. Love, Dianne

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