JoAnn Aguirre and her partner Duke Ogden were together for 20 years, up until his death at Pohai Malama. Duke, a former Marine and Navy SEAL, and JoAnn were on a trip to Oregon last year when he had a medical event that required an ER visit. He was advised to see his medical care provider upon return to Hilo. JoAnn describes the experience of those last months with Duke.
“Surprisingly we were able to see a VA doctor the week we returned. You hear so much in the news about the problems with the Veterans Administration, but from the day I contacted the Hilo VA until the last day we saw them, they were incredibly helpful and supportive.
“Duke was diagnosed with late stage metastatic prostate cancer and Alzheimer’s. He was very clear on what he wanted to do. When we saw the oncologist, Duke said, ‘You know, at my age, I think that I should just forego any kind of treatment because there is no cure for this and it’s just a matter of time. There are younger Veterans and their families that need help compared to what I am going through and so, just tell me what to do.’ The doctor accepted his decision and advised him to come in every two months for a check-up unless he started to experience pain. That was the plan and in the meantime, we were going through the process of getting him into the Veterans State Home.”
JoAnn recalls, “The hard part about not doing anything in terms of medical therapies is when I would ask ‘What hurts?’ and he would say, ‘Oh no, I’m okay. It’s a little uncomfortable, but I’m okay. I’m fine.’ I don’t think I paid really close attention to his pain level, because even though he must have been suffering silently, he was very active until the very end and he always put up the military bravado front about not being in pain. So I was just thinking, ‘Well, he’s older, he’s getting tired, and he’s ill.’ It was at his third check-up when the doctor said to us, ‘I think it’s time to look at hospice.’ Duke’s doctors were in disbelief as to how much pain he was able to withstand without medication, but they saw other obvious signs of decline.”
When the doctor said it was time for hospice, JoAnn took that as direction. “I’ll never forget, it was a
Friday afternoon and I thought, ‘Okay, I’ll call Monday.’ Well, interestingly enough, I got a call from hospice early Monday morning. We agreed for a hospice team to come to our home on Wednesday.”
JoAnn recalls feeling anxious about the home visit. “We set up a time and I was nervous about them coming over. I don’t know what I was nervous about to tell you the truth. I think a lot of it was maybe this feeling that someone was going to judge, you know. We have two dogs inside the house, just things like that.”
She smiled as she talked about the first hospice visit. “It was like a party in our living room. Duke was still lucid at the time. It was Duke, the dogs, the hospice nurse, the spiritual counselor, the social worker, and myself. We were all there and they were asking him quite a few questions and he was able to answer them pretty much without any problem. We all talked and they explained what was going to happen and immediately we felt a tremendous amount of support and relief.”
The acceptance of a volunteer was difficult for JoAnn. Yet, it was also one of her most precious memories. “They called to ask me if they could send over a volunteer and I was really reluctant. I said, ‘Why?’ And she asked, ‘Do you need to go to the store or do you need to run errands?’ And I thought ‘Yes, I usually do that every day.’ But I felt so guilty about asking someone to come and do my job.
She said, ‘No. no. That’s what they do. What time of day would you like? What day of the week would you like? What is good for you?’ So I agreed and that’s when they sent David who was just a godsend. He was amazing. He was only with Duke for one afternoon. And what happened was such a gift. All this time, Duke was mostly surrounded by women and here shows up David. As David was leaving, he, a girlfriend of mine, and I were talking in the living room and all of a sudden we heard some commotion in the bedroom. Duke had gotten out of bed and couldn’t get back on. Thank God David was able to help him. When David left, and then that night, Duke was restless again and he just kept calling, ‘David, David, please David. Thank you. Thank you.’ And he didn’t know a David other than the one he just met. What a gift!
“A few days later, the hospice nurse told us Duke needed to be admitted to Pohai Malama for four to five days for medication adjustment. I felt guilty and I felt bad that he had to leave home. By the time all of that happened, he wasn’t lucid. And yet, when he came here, I don’t even know how to describe it. It just seemed like a complete turnaround. The night he was admitted he was joking with one of the nurses and talking as if everything was normal. I thought that was really bizarre, or maybe it was just the presence of medical experts that was calming him or making him feel soothed.
“The night we got him to Pohai the staff offered me a bed, a chair that transforms into a bed, blankets, pillows, and I said, ‘As much as I want to stay, I left our dogs alone so I think I need to go and do something with them. I’ll come back first thing in the morning.’
“The next day I’ll never forget when I asked one of the nurses about needing to make arrangements for Duke’s care after the five days at Pohai, she looked at me and said very compassionately, ‘Oh honey, he’s not going home.’ I thought she meant, not today, but maybe after the four or five day adjustment period.
“Later in the day I went home to shower and feed our dogs. On my way back to Pohai, Duke’s nurse called to ask if I was coming back and I told her I was right around the corner. When I arrived she explained he was nearing the end. In my head I knew that their knowledge and experience enabled them to foretell the things we can’t see or we don’t want to see; that our loved one is already at the end. And it’s not like they were real clinical about it. Every hospice staff member was very sensitive to our needs and compassionate. “His nurse described signs I should be looking for while I sat with him. So I was there all day long, and everything she described happened: his eating patterns, his sleeping, the medication, his breathing, all of that and she did it in such a way that really calmed my anxiety. Had no one told me, I would have probably been in there hysterical. Duke passed peacefully later in the evening, and I also felt at peace that I was able to be at his side. It was such comfort to know we had hospice.
Even with all of the support, JoAnn honestly describes her deep feelings. “I do have regrets though. I wonder why I didn’t think about hospice earlier as we had in-home hospice for only a week and a half and Duke was at Pohai Malama for less than 48 hours. Could he have been in less pain and more comfortable in his last days had I contacted them 6 months earlier? I even had a friend whose husband was on hospice. He was one of Duke’s best friends, and I still didn’t think about initiating hospice. I’d say to anyone who may be in a situation like ours, ‘Don’t wait, trust your instincts’! You know what I think it is? We don’t have a medical background so we are waiting for someone to tell us, but we are the ones that are there with them every single day. I was with this man for 20 years. I know him. I should’ve acted on my knowledge of him and both of his illnesses. That’s my big regret."
“I think the most touching thing about hospice was just the love. It was just beautiful. I would say to anyone who may be waiting and unsure about hospice, ask your medical provider, your friends, and your family. Go to the website. Take that first step. It is kind of scary, but once you are there it’s like ‘What was I thinking?’ One of the biggest gifts of this whole experience was how every person affiliated with hospice - from the person answering the phone, the aides, the nurses, the social workers, the doctors, everyone - is just completely nuanced to families’ cultural backgrounds and their needs, and the fact that they didn’t judge us. My beloved was not my husband. No one came in and said, ‘You can’t speak on his behalf.’ They were so understanding, compassionate, and nonjudgmental; so much that it just really moves you. I loved it. Thank you. I can’t thank you enough.”