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Archive for the category “caregiving”

Preparing to Grieve

My mother is going to pass away in the next 24-48 hours. She stopped eating well over a week ago and has survived on water and whatever it is within herself that is keeping her alive. I fear that the breakdown of the body must be horribly painful but they are giving her morphine and sleep aids (which actually seems like over-medication) so hopefully she is comfortable.

My sister is spending any time she can at Mom’s side. She has tried to comfort her, ask what she needs. Mom maintains her stubbornness in saying she doesn’t need anything, doesn’t want to see or speak with anyone. Then she goes on complaining. It’s an old pattern that my sister and I both hoped would fall at the end. These sort of ingrained patterns only because stronger with age and weakness.

Her pattern of pushing people away, making sure no one gets too close is certainly stronger than ever. I hoped beyond all reason that she would make amends to her dearest friend, Patti, for trying to drive her away. Could she maybe manage to show a little gratitude toward my sister for all the care she has provided? Her niece, Linda has shown her unconditional love that amazes me.

While I feel at peace with her passing, I assume I won’t begin to grieve until she passes. I feel like I’m saying, “Die already! I’m ready to get on with it.” We’ve been in this limbo for over a month and I’m tired. When my sister called today, I assumed it was going to be that call saying Mom was gone. No. It was that call saying Mom was still alive.

That felt strange, as if that moment I’ve been preparing for got caught in my throat.

Preparing to grieve I’ve stacked up the memories, trying to find the pretty ones, paint a special picture. Our relationship was complicated and Mom did a pretty good job of pushing me away. But we had some times when it was easy to be with one another, when we laughed together. Nothing can change the challenging times but right now, as I brace myself for the finality of that fact, I am filling my arsenal of grief with memories that will nourish me.

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In Absentia

Just over a year ago, Mother broke her hip after straightening the downspout on the gutter at the back of the house. A routine moment followed by a life-changing moment.

Of all the people involved in her care over the last year, I am probably the very least engaged. I’m on the fringe mostly willingly and probably only because I live 5,000 away in Alaska. Alternately I feel guilty and relieved. If I lived nearby, my life would be consumed with taking care of Mom, fretting over her state of mind, trying to make everything okay. That’s just the relationship we had.

I struggle with my sense of responsibility, remember our jokes about sending her to “Shady Pines.” Neither of us ever thought this time would come: when she could no longer live alone and depended on others for her care. This situation is what I think of as her worst nightmare.

Suddenly it occurred to me that I’m wrong. I’m making assumptions. A year ago, Mom was independent, still doing everything for herself. In fact, insisting upon doing everything for herself. She refused to call my sister for so much as a ride for an appointment to have her cataracts removed. She had to do everything for herself, a behavior I inherited and battle daily.

She has lost that level of independence. She is dependent on others for her meals. She no longer has to take care of her home. She doesn’t drive down to the Post Office to pick up the mail. “How terrifying to lose so much,” I thought.

Her mind is intact. She remembers everyone and everything. She battles depression which is managed with medication, something she has probably needed for many many years but never had to face. Her body is weak. She has some symptoms from a minor stroke. She begrudgingly participates in physical therapy.

I had only considered what she lost. I only considered how I would feel in her situation. It never occurred to me that in all the loss, she might have gained something as well. Mom is 83 years old. Of course her perspective is different than mine.

Maybe over the last year she has gained the time to stop, reflect and be. Maybe she has learned to trust. Maybe she has come to accept that she doesn’t have to do everything herself.

I wonder and I hope that at least some of these ideas hold a smidgen of truth.

Experiencing Heathcare 1

Health care. Say those two words to any American and you’re likely to hear a horrifying story. It will be a story of care gone wrong or of care being absent or care givers not caring. It will be a story that will make your blood boil.

We cannot fix improve our health care system by complaining about it in terms of a system. Each instance of a problem, no matter how minor, is a demonstration of a process, a person, a policy, a methodology, a passively accepted culture that needs to change.

In a series of short blog posts I will write about some of the problems we encountered that, if changed would have an immediate positive impact on patient care.

1. UNDERSTAFFING

I have a few wonderful stories of doctors, nurses, social workers and others who have put in their all and really demonstrated their passion for their work as they tended to my mother’s care. However, most of the experiences in this journey involve a disheartening lack care, inaccessible services and even demonstrations of a complete lack of knowledge from doctors.

One particular problem has been consistent over the last six months since Mom broke her hip. There is a lack of quality care on the weekends.

Each facility Mom has utilized – hospital, rehab and nursing homes – have lacked weekend staff. One would reasonably expect that the administrative staff work Monday through Friday. The patients don’t leave on the weekends yet the ratio of direct care staff to patients is much lower and supervision is minimal.

How many times does a patient have to say, “I push the button and no one comes” before someone takes notice?

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