Home Care

Thursday, February 13, 2011

Where to start?

There are a couple of articles I ran across in the last two weeks that stick to mind. One is on the hidden cost of caregiving. I relate! I am most fortunate that I work at home. I suspect I would be talking about at least part-time position if I held a job outside the home in order to care for Dave. As it is, I feel like my business goals take me twice as long to complete the to-do lists. Yet, some of what I experience in this part of my life journey absolutely wraps into my business. This experience has had me rethink additional ways to help others through their grief. The other article is written about the new stages of grief (in juxtaposition to the famous Kubler-Ross stages) in our changing way of dying. These are my academic thoughts for the moment. Add to my list of things to consider…

The real concern is Dave. He is not getting better. That’s the bottom line.

When we met with Dr. L. on February 4 I did bring up the question of longer care planning such as hospice. I wasn’t requesting hospice (i.e., we’re not interested in stopping treatment) but knowing what options we have for healthcare in the future. I’m a planner.

Because Dave has been housebound, she said that Palliative Home Care can be started. Doctor’s orders. That’s how it begins.

Palliative care is symptom management. Home care provides us the team of specialist doctors, nurses, health aides and other support coordinated in conjunction with our Group Health (insurance) medical team of family doctor, oncologists, specialists and technology.

On Wednesday, the assessment nurse arrived to start the process, determine Dave’s health level, challenges and care.  She took a history, vital signs, told us what to expect and listened to our concerns. I have to say that I was happy that this process was implemented. Dave’s biggest challenge is fatigue and nourishment. Wow, to write this is means we have really had to narrow the focus – his biggest challenge is lung cancer. But I can see we are reduced to looking at the everyday life challenges right this minute. That’s a bit disconcerting.

Since fatigue is a problem we wondered about Dave’s medications dropping his blood pressure too much. Yes, a distinct possibility. His fatigue and dizziness on standing could be low blood pressure. So a request to check his medicine via his family physician, Dr. Nevitt.

So here’s how it goes over the next three days:

Assessment nurse > Dr. Nevitt to review blood pressure meds > cuts two doses down (be sure to change the medicine list) > Did we know he’s been anemic since October? > No, that could explain some fatigue. > Does fatigue make him depressed or does depression cause fatigue? (likely fatigue first) > What are our emergency wishes? Have Power of Attorney? Health Directive? > Assigned Home Care nurse Laura visits. > Repeat history and meds and challenges. > Sleeping too much can create pressures sores. > Oh, yes, that’s happening. > Instruction and cream for treatment. > Change resting positions. > Listening to lungs there is diminished capacity in right side; likely fluid is building. > Instruction on breathing and coughing > Check weight daily – gain means fluid > Dr. Slack to come by next week for complete (as in 2 + hours appointment) discussion on health, palliative care and treatment plan.> Order oxygen for standby? > Not Group Health approved at this time> Laura can come by twice a week. > Do we need Physical therapy? Bath aide? Other assistance?

Suddenly  we are seeing Dave’s health in a different photo. What can we expect now?

Initially, Dr Slack couldn’t come out for a week until Friday, February 18, since Dave goes to urology on Tuesday (a dreaded appointment for him). So the Doctor generously called and made room to see him Wednesday. He was suitably impressed with Dave’s tenacity for living given all the medical history! He indicated that there are some things to do to help the quality of life, perhaps even get him back on his feet, and help navigate through this part of his illness. Dave seemed comforted by this call, yet, cognizant of the seriousness this disease now presents.

Our, Dave and mine, conversations have turned to more immediate worries about his current needs. I just want to yell at him to get up. It isn’t that he doesn’t want to get up. He just can’t make his body respond. I have “If I could just…” syndrome. Fill in the blank: If I could just feed him better, cajole his sense of humor, inspire him to read the newspaper, turn off the TV (that can depress anyone after a few days!), make him well. Make him well! This reminds me that I don’t have control over his disease.

I had a sense last Fall of how this diagnosis was suppose to play out. He’d teach until the end of this academic year. He’d have a choice about working over the summer, but not likely (This is my idea- he’d still teach if it was his idea!). We’d enjoy porch time in the warmth of the sun. I’d plan and hold a big-ass retirement party for him. We could spent the rest of the months, maybe into years, peacefully from then.

I think he has had a plan. First “he is not a statistic” therefore this cancer can’t get him just because the statistics are not favorable. Besides, he has beat the other two cancers. There was little question about teaching the full year in his mind. That’s a given. I’ve heard him say he can fight for ten years, and retire at age 75. That’s a good round age for retirement. That’s time for writing, teaching, contemplating, growing older. As long as he can get up the stairs.

Now the worry is getting up the stairs. When we take him out to Group Health on Tuesday, can he get back up the stairs to the safety and comfort of our bedroom and bath? Will we start needing help for this task? Somewhere we’ve lost a year in this plan.

Sometimes I hate writing. It forces me to see what I really think.

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