Barrons, I feel this. My husband died of Pancreatic Cancer in January at age 64. He worked about 6 weeks after his diagnosis and then went on disability. He died after 10-11 months. His care was at Inova in the DC area with consults at Johns Hopkins.
We were married almost 40 years and we didn’t have a lot of “last” conversations. I made decisions on what I knew from 40 years of marriage.
Whenever conversations with medical staff were tough, I clearly stated that as long as DH could make a decision, the decision was his. He also had a concierge doc in the same medical system and I had several direct conversations with that doc parsing through the reports he had seen in the chart. While the decisions were his, I pushed for questions to be answered and I advocated constantly. At least, that’s my memory.
At one point, we pushed for a discharge when they wanted to do more tests. We had a bucket-list trip planned for the next week. We made it to the lake house, and one day drove to a pre-arranged hospital for an extra fluids infusion. (When we arranged the lake house, I found the closest network hospital 1.5 hours away and ask the oncology team months in advance to set this up for us). That little community hospital was a bright spot on our journey.
We had a horrible legal complication in that we had our will and trust updated in October, but the lawyer made enough spelling errors that I had no confidence in the document. We paid the lawyer and then retained another lawyer for a clean set of documents. Those were signed only two weeks before DH died. The new lawyer has been super helpful. DH had also always done our taxes and we also added a CPA to our list so I was able to get the taxes done shortly after he died. (My Fidelity advisor, CPA, and attorney have been helpful, especially as time has gone on).
Check all your banking and legal documents now. I was surprised to find out that my favorite credit card was only in his name and I lost use of that one after he died. If you read further up in my posts, I had problems with both Navy Federal and Fidelity accounts. In both instances, they had to change the social security number from his to mine after his death, even though we were joint on Navy Federal and Fidelity was in a trust.
My husband did not enjoy the hospital support group. I feel that he could have used more mental health support in the last 4-6 months. And that could have also been from our church.
We had a wonderful helper who I found on Care.com. She was an older widow and it was like having a great aunt we could rely on 2-3x per week. She could drive him on errands, indulge his grocery wishes (chocolate donuts). When he was hospitalized (several times!) she also came to visit and sit with him so I could run errands and put in a few hours of work.
Geographically, where are you? Do you have a good medical center? Adult children nearby? Are you dealing with the weather and leaves? Are your neighbors helpful?
Does your medical team have a palliative care doc/pain specialist? Also, when you are ready, ask for hospice. (Also find out how hospice works in your area — it seems it differs).
The church-based support group that I now attend has more men than women.
Let me know if there’s anything I can help with, in this group or via PM. And certainly feel free to vent here.
