and gone

Yesterday night, just about an hour after my last post, my dad crossed over. I am sad, but glad that he is at peace now.

Nearer

Probably only a few more days now, if even that many. Or maybe only a few more hours. Can we learn about living from the dying?

Time passes

It feels like we are all in a holding pattern. Dad is still bedridden. I don't expect that to change. Some days he mostly sleeps, or naps, with short periods of wakefulness. Other days Dad has longer times of wakefulness, and we talk a bit and joke around. His sense of humor hasn't changed. Dad almost always recognizes us when we come to visit, but often later thinks we are somebody else from his life. Some days he eats and drinks a small amount and other days takes only the water he needs to swallow medications. The hospice nurses say Dad is "transitioning", a period before death that can last anywhere from hours to weeks. Nobody really knows what to expect.

Many changes

The last 2 weeks really got bonkers with my Dad. He slept only a few hours a night and would wake up believing strange things were happening. He threatened his caregivers, refused to take medication, tried to leave the house in the middle of the night, tried to call 911, sneaked medication he wasn't supposed to have. And then the hallucinations started. During all of this hospice would make changes in Dad's medications, trying to find something that would help him sleep during the night, and then also trying medications to reduce the delusions and hallucinations. I kept feeling like I was 2 steps behind.

Every time we, the family members, thought we had a good plan in place for dealing whatever the most recent craziness was, we'd just as quickly find out we were caught short. Again. Always hoping the next medication change would help. Wondering what might happen next. Wondering if the decisions we were making were the right ones.

We were all committed to keeping Dad in his home as long as practically possible, and keeping him as happy and comfortable as possible. Fortunately, Dad hasn't had issues with pain so far, ibuprofen has worked for any physical pain. The emotional pain is harder to deal with. Pain caused by delusions; of events he's imagined happening, or imagined happening in the past. No amount of discussion would convince Dad that those events weren't real. Much like while I'm dreaming, my dream seems real while I'm in it, and the emotions I feel in the dream and even when I wake from the dream are real. The events aren't really happening, but the emotions are. We finally stopped trying to convince Dad that those events didn't happen, and instead just let him know that we were sorry about how awful he was feeling. He doesn't like that so much either, because he feels we are patronizing him.

Throughout all of this, I've mostly felt unprepared and frequently felt inept and frustrated. With myself.  While I am, I think, ready to deal with my Dad's death, I see now that death is just an ending. Its the chapter leading up to the ending that is difficult and contains many surprising twists and turns. I've lumped it together with most of the rest of life, as in, there is no one right way to do this. We just do the best we can, seek advice from those who have traveled this way before, make mistakes, take our bruises and keep going.

The day before yesterday, because of Dad's unpredictable and sometimes aggressive behavior, we were wondering if we would have to move Dad to a facility instead of providing care in his home. Yesterday, things changed. Dad seemed okay in the morning, by our most recent standards, but then slowly started to sort of deflate. It started with difficulty in moving his left arm and leg, by afternoon he was in a bed, sleeping. We can rouse him to take his medications, talk a little bit, but then he just goes back to sleep. He seems very comfortable, and its like he's been waiting to take this nap for a long time. There is relief. For him, for me, for the rest of the family. We don't know what changes will happen next, even the hospice staff say Dad has surprised them at every turn. Right now, he is resting. We are resting.

The hardest parts

I feel very matter of fact about my dad having brain cancer, and knowing that he will die from it. The part that is driving me 'round the bend is how the disease seems to steal away parts of him first. Personality changes, forgetfulness, obsessions, unpredictability, making up a fantasy world. I wasn't around him all that much while I was growing up so I'm always asking my sister, "Has he always done this?" Whatever the this might be. Sometimes things seem pretty nutty, and we remind each other that it's the cancer, not him, and try to maintain perspective.

Dad doesn't walk so well anymore, and usually uses a cane. In truth, he should be using a walker, but he won't. He's tripped and fallen a few times, he's fallen asleep sitting on the edge of the bed and then tumbled over. Twice. He is sometime very forgetful. My sister and I decided he shouldn't live alone anymore. Hospice agreed. He didn't like that either, but conceded. So now my stepbrother stays with Dad a few days a week, and an in home healthcare aide stays a few days a week and the other days Dad spends with his girlfriend, either visiting her in her hometown or she staying a few days here. I go over and visit for several hours, twice a week. We still have some great conversations.

Hospice

The hospice people are wonderful, my sister is convinced that only the nicest possible people are allowed to work for hospice. I think so too.

Normally, I'm sure its very simple to get a hospice referral. The physician or someone in the office sets it up. My sister called the oncology office to request the referral for our dad. Whoever answered the phone refused to talk to her, even though she has power of attorney and Dad has signed forms for medical release and whatnot on file. She, and her husband both, called the office and left callback requests for the doctor, and he claims he never got those messages. Really, it shouldn't be this hard. I know there are patient confidentiality laws, but they wouldn't even talk to my sister.

My sister is persistent and resourceful, so she called Dad's regular physician's office for help. They were very helpful, explained what they required from her in order to process the request, and set up the referral. And we got to meet the nice hospice people. There is a nurse that right now stops by twice a week, a home healthcare aide who would stop by twice a week to help with light housekeeping and cooking if my dad would let her, and a volunteer who plans to stop by twice a week to keep company and help if Dad wants to make cookies or something. After a previous incident, Dad isn't supposed to do any unsupervised use of the oven or range top. Microwave is ok. Later, and as needed, the frequency of nurse visits may increase, and the hospice doctor can prescribe drugs to alleviate pain, anxiety, agitation, and other distresses.

All of the hospice visits, in addition to our own, are our way of keeping an eye on Dad. The hospice nurse is concerned about Dad living alone, and told us that sometimes things go bad suddenly, like waking up and not being able to get out of bed. Right now, Dad's girlfriend is staying with him. L is truly a gem of a person, but she lives about 2 hours away and can't stay with Dad all the time, she has responsibilities of her own. During the time she is here, Sister and I plan to cobble a plan together, ok, more like plan A, B, C and D, on how to increase supervision for Dad at home, and for when he might need to move into a care facility of some sort. We're seeing more an more changes in Dad's behavior, and we are concerned.

Besides the palliative care offered by hospice, we are very grateful for the insight and experience they offer. I suspect hospice has more direct contact with end stage glioblastoma patients than many doctors. The information the hospice nurse gives us is really helping us understand how Dad's brain is affected by the tumors, and gives us a general idea of what to expect in the future. 

Avastin

Unbelievably, at least to me, we had to wait 3 weeks to see the Oncologist about whether or not Dad was a good candidate for Avastin treatment. Yes, I am still feeling irritated about this. We had just been told that the tumor(s) were growing faster than expected, and that the Avastin might be a way to rein that in a bit. And we couldn't see the doctor for 3 weeks. I was fully ready to start making phone calls and pounding on waiting room doors to find a doctor to talk to sooner, but Dad didn't want me to do that.

So, we did online research, natch. Avastin works by inhibiting blood vessel formation, robbing tumors of the energy supply. Side effects are usually minimal, mostly involving blood leaking through thin tissue like mucus membranes. It can impede wound healing. Treatment must be stopped at least a month before any surgery. Its very expensive, and doesn't work for all types of tumors. But it has been used against Glioblastoma. With good results. What we couldn't find out online was whether Dad could be considered a good candidate for treatment, and would his health insurance pay for it. It is a very expensive treatment. I suggested at least calling the insurance company and asking, but again, that was nixed.

I don't consider myself a "do whatever it takes no matter the cost to save him" person. I understand that recovery isn't likely or expected in this case. But, damn, I want as much information as possible before making a decision. I felt frustrated, not a lot, but accepted these weren't my decisions anyway.

While we were waiting to see the oncologist, my sister and I discussed the future. Dad wants to stay in his own little place to the end, or as close to it as is safe and practical. We agree with him, we want him to be happy, and truthfully, no matter how horrible this might sound, neither of us want to move him into our homes. We did feel that getting hospice involved early was a good course of actions and wondered how to bring it up with Dad, but then he brought it up first.  More on that in the next post.

Finally appointment day arrived and 5, yup 5 of us crowded into an exam room. Dad, his girlfriend L, my sister, her very supportive husband, and me. Here is what we learned, in a rather large nutshell; Dad is a candidate for treatment, treatment means coming into the office once every 2 weeks for the rest of one's life and spending about 2 hours hooked up to an I.V. while the drug is administered. Health insurance will pay for the treatment. Effectiveness is tracked by periodic MRI scans and symptom severity. Possible extension of life expectancy, zero to a few months.  Dad declined treatment. He didn't say why.