Operation: Demystify Hospice

Thursday came without a fight. Everything about the first hospice visit seemed quite routine for the two nurses. One was new to the company, so she was in training with a more experienced nurse. They won’t continue to be our nurses, however. They were the “intake” nurses. We have not met our nurse yet.

Upon arrival, we were given a spiel about what hospice is and what hospice is not. Essentially, hospice is a six month program for patients with a terminal illness. If a patient is still alive at the end of the six months, they can graduate hospice if there has been an improvement or hospice can be renewed for another six months. The goal of hospice is to keep patients at home and out of the hospital. There reaches a point, which we are at, where the patient cannot easily leave the home, if at all. Therefore, everything we may need from the hospital comes to us. This includes anything from nurses to needed medical equipment such as a hospital bed or oxygen. They gave us books, files, and forms to read on what we can expect for the coming months.

Then, they moved on to a medical assessment. This was pretty basic of what you would expect from a typical visit to the doctor’s office. They checked his temperature, blood pressure, and vitals and got his height and weight measurements. This will be done at every nurse visit, they told us.

Next, and most importantly to us this visit, came assessing all of his medications. As I mentioned last week, my dad has to take medications so frequently that we do not sleep for more than two consecutive hours a night. The nurses added up his total daily dosage of each medication and consulted with his doctor on the phone (I assume palliative care, but I’m not positive) about possible ways to decrease middle-of-the-night medications. We don’t have a solution to this yet, but hopefully soon.

In total, this first appointment took about two hours. It was not an emotional experience because the nurses maintained matter-of-fact personalities, something I can appreciate. They left with informing us of the different people hospice can provide from a chaplain to a social worker to a volunteer. At this time, we do not need any of those resources because we have such a strong support network! However, the social worker visit is required monthly by our medical provider, so she paid us a visit on Friday.

I can see where a social worker may be needed in various hospice settings, but this is not something we need. Our family and friends are keeping us so well (thanks guys!) spiritually, emotionally, and physically. With that, we have everything we could possibly need in our own little network here. Regardless, the social worker still needed to come. This visit probably lasted forty-five minutes.

She asked each of us a range of emotionally based questions. Were you surprised to learn that hospice care would be taking over? Are you afraid of what is to come? Do you have sufficient resources to handle this time in your lives? And, directed at my dad, were questions about past treatments and diagnoses he has received. Ultimately, she conferred with us in agreement that we are well-situated and fortunate to have the family and friends near and far that we do. She will still be coming monthly. Maybe down the road this will be of good use for us! For now, and typically always, all three of us prefer to address any and all needs/concerns with trusted loved ones.

This week our assigned hospice nurse will be coming. She will come once or twice a week, or more if needed. It will be nice once we can establish a routine with all of this. Last week was very chaotic, and that throws everything off!

I hope that this post can help individuals and families in the future who are nervous about starting hospice like I was. I believe that simply knowing exactly what is going to happen is essential in being comfortable and accepting of the situation. For me, the mysterious dark cloud surrounding hospice left me feeling the most uneasy. As caregivers, it is important that we can predict what is to come. We need to be ready for anything and all things!

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