Death and Dying Process from Caregiver Prospective

This is the first time I am dealing with the death and dying process as a caregiver. And it is much more trying than I imagined. As a caregiver, I have to make heart wrenching health and financial decisions all while being very emotional.

One thing I am learning is that death can take a long time. We were told by doctors that my aunt, whom I help care for and am the financial guardian, was close to death numerous times. She was moved to Hospice which takes patients who are expected to die within two weeks. She has been there almost a month.

This past month, my aunt was hospitalized for a gravely low blood count for the second time. She wasn’t eating or speaking. She was in a deep sleep that she couldn’t wake from. It was terribly frightening to see her like this.

After a few days at the hospital and blood transfusions, she wasn’t recovering. She was approved to move to Hospice. When I visit her, I pray for her to respond in some way. 99 percent of the time she doesn’t, but I rejoice for that 1 percent.

Her condition changes almost daily. One day she won’t wake up or eat. The next day, she’ll eat, but her breathing is labored. It’s a constant unknown and a merry-go-round of emotions. Hospice is paid for by Medicare and must abide by their rules. If a patient’s condition doesn’t worsen, she cannot stay. So this makes it even harder to cope.

Death and Dying Quote

I don’t want my aunt to return to the nursing home because I feel they won’t give her the care she needs and deserves, especially during the death and dying process. In Hospice, the patient to nurse ratio is much lower than in an SNF. The facility itself is much more inviting. There are no smells of urine. No patients crying out.

Therein lies the dilemma. I don’t want my aunt to get worse because that means she is closer to death. But, I don’t want her to leave the Hospice facility. How do I wrap my mind around this? How do I deal with the sorrow and the reality?

Hospice offers counseling to family. I have spent a lot of time speaking with their social worker and the nurses. The doctor understands how hard it is to grapple with all of this. I’ve cried and laughed with them. I am humbled by their ability to give loving care and to let go. They also allow a Hospice nurse and aide to visit patients in SNF’s so that eases my mind a bit.

I am grateful for the AARP Caregiving Resource Center  which provides information and resources about Hospice and death and dying. I am thankful that my aunt made her wishes known via a Living Will while she still could. I am blessed to have online friends who support me during this difficult time.

In the end, her death will be filled with grief. But knowing that I fought for her to die with dignity will lessen the pain.

I am part of AARP’s kitchen cabinet on caregiving. All opinions are my own. This is a series of posts on the topic of caregiving. This post and my social media involvement are compensated.

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Connie Roberts

Professional Blogger
Living in the Tampa Bay area, I'm lucky enough to see beautiful sunsets almost every day. Although life can be difficult at times, focusing on the positive and being with my family is what gets me through.

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  1. Death , even though it is expected (at some point) seems always to take us by surprise.
    I remember some of my friends choosing hospice to work in… I always though it would be so hard there, and realized early on it takes a special soul to be in hospice.
    I admire the folks working there- their strength, their faith, their mission to make death a celebration of life and a passing be as easy as possible.

    I will be thinking of you Connie and I hope youyr Aunts journey is a quiet and peaceful one….

  2. This is truly some difficult stuff. My dad was in the hospital for three weeks prior to being moved to a rehab nursing home and then passing away. I’m still dealing with everything. I hope you find some comfort in these times.
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  3. Connie, I’m so sorry you are having to walk through this difficult time. I’ve added you and your aunt to my prayer list.
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  4. I wish I could do something to help you out. I’ll pray for both you and your aunt.
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  5. You speak of the “sorrow and reality” with such powerful emotion and yet poignant clarity as well. I think we all wish for dignity at our journey’s end, and it’s so important for caregivers and those left to have resources to help with the grief, sorrow and just plain logistics. Thank you for this post…
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  6. Oh, Connie. Such a difficult dilemma. Perhaps you shouldn’t want for anything in particular, but just to let whatever needs to happen do its thing.
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  7. I can’t even imagine how difficult that must be for you, for her and everyone that is involved. Death is such a scary thing but I’m glad to hear you have support.
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  8. Connie, that was tough to read… my grandmother passed away in a nursing home and it wasn’t ideal so I understand you not wanting her to go back there. You’re doing everything you can to ensure that she stays in the best place so that she can be comfortable… I can’t imagine how hard this is on you, but I do know that your aunt is BLESSED to have you taking care of her and making sure that everything is done as much as you are able according to her best interests! You are amazing.
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  9. This must be so difficult for you. I feel for you and your family.

  10. This post brought me to tears Connie. My Dad was home to be cared for by my Mom, me and my aunt. He got worse with his brain cancer and was sent to a facility where he was not taken care of as he should have been (not saying that to scare or horrify you). The nurses at his facility didn’t care and maybe he was going to die anyways but their negligence brought it on quicker than it could have been. Good for you for fighting for your aunt. My thoughts are with you and your family during this difficult time.

  11. Oh I’m so sorry to hear all of this. Heart wrenching and I have you in my thoughts & prayers.
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