It hasn’t been that long since the last update, but it has been a bit of a wild ride. One could argue that if you are going to ride this life, you might as well make it a wild one. Get a lot out of every bit of your experiences.
How do I spell relief: H-O-S-P-I-C-E. Yes, we signed up for hospice on Friday, a huge relief to me. I am so glad to have someone to call for help any time of day or night. Expert advice on how to manage pain and discomfort. No trips to the ER and waiting for hours on end. The first time we entered hospice it was overwhelming to me. I was so not ready for this diagnosis of death coming so soon. The nurses, social workers, hospital beds, wheel chairs, and walkers were like an alien invasion interrupting the natural rhythm of what was our life together before. The pile of medications for all kinds of different symptoms was overwhelming. Back then daughter-in-law, Hope, helped me navigate the craziness and gave me some sort of organization.
This time I am ready, familiar with most of the medications from the past. I have created separate, well labeled containers, one for PAIN MEDS, one for AS NEEDED and one for REGULAR DAILY MEDS.
So, some background about the change to hospice: After I last wrote, on Sunday, 11/17/24 Michael got the shakes followed by a fever of 101.6. This happens when he feels so cold and cannot warm himself. He shook pretty violently for almost an hour. This would normally mean a blood infection and trip to the ER for IV antibiotics. He said no to the ER, and I agreed. But it was like a sign that it was time to enter hospice. Fortunately, the fever broke and with the help of prayer, the next morning he felt better than he had for almost 2 months. We even drove downtown and got sushi and sat in the restaurant together! The next day he had enough energy to do dishes. But by Wednesday that little rush of life was over and it was back to pain, discomfort and loss of appetite.
He has lost even more weight and is officially frail. Hospice is giving us a walker since he has some serious dizziness at times likely due to low blood pressure and possibly some meds.
Hospice has also assured us that he can continue getting paracentesis for comfort and possibly a biliary drain exchange, which has been really essential to keep his bilirubin low and digestion working better.
However, even when we were not on hospice, we were having a hard time scheduling a drain exchange because the local Interventional Radiology company has gone out of business. If needs be we can sign off hospice, go to the ER and request a drain exchange, which could include another hospital stay. Then we can go right back on hospice. They assure us it is just some paperwork that can happen quickly. My hope is that the hospice doc can get us an outpatient appointment, even though we may have to exit hospice for a day. So, I am praying and believing for an easy flow for this procedure to happen soon!
Through all of this I feel an anticipation of light filling in all around us, sending both of us forward on our paths. The hospice nurses that visited us first were kind of like balls of light, excited about life, excited about the process of death. It is all good, it is all well.
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