Yes, it’s another chapter in the continuing saga of my wife’s health. For those of you joining us late, my wife is diabetic, legally blind, and was diagnosed with Parkinson’s Disease a little over a year ago. Last February, she had a little accident, but was recovering nicely and was starting to get back much of her mobility. Life was resuming some semblance of normalcy, and we were even planning a trip to Las Vegas for the end of October.
In late August she began having spells of disorientation; sometimes she would come out of the upstairs bathroom and turn the wrong way, then stand in the back storeroom trying to figure out why she couldn’t find the bed, and other times when I would bring her breakfast upstairs she would ask when she would be coming home from the hospital. Then she started spending more and more time in bed. She stopped doing her exercises and kept insisting she just wanted to be left alone. Her appetite decreased, and eventually she stopped eating almost entirely. A visit to the doctor and blood tests showed excess calcium in her system, and she spent a week in the hospital for tests and treatment. She was discharged even though there was no real improvement, because she wasn’t well enough to be moved to the rehab unit but didn’t need any further medical treatment. For the next three weeks she lay in bed, getting more and more lethargic. When I could get her to eat she would throw up, and she had coughing fits. I called our doctor, and she was re-admitted to the hospital. After a round of CT scans, X-rays, and other tests she had a feeding tube installed because she couldn’t swallow without food going into her lungs. Her blood chemistry was adjusted, she was getting nutrition, but there was no change in her mental status - in fact, if anything she was worse. There was excess fluid causing pressure on her brain, and it was decided to install a shunt to see if draining this would help. This was done the first week in November; while she was recovering I had to be at a local SF convention, and I kept telling our friends that we had drilled a hole in my wife’s head to let out the evil spirits. I called the hospital daily for updates on her status and was told she was “recovering well” and was “alert and responsive” which I took to mean that the treatment had worked.
On Monday I visited her and found out that “alert and responsive” is apparently ICU-speak for “she opens her eyes when you say her name and moves her head occasionally but does not talk or answer questions.” Her doctor said they were going to try giving her Ritalin or something to try and stimulate brain activity. He didn’t sound too hopeful, though.
On Wednesday I got a call from the hospital 's social services office to discuss home care options. Thursday morning our doctor called to let me know that it had been decided to move her to a hospice until arrangements could be made for home care. An appointment was set up for Friday afternoon for me to talk to someone from the hospice. At this meeting I found out that Blue Cross does not cover in-patient hospice care until 21 days after hospital discharge; this meant that she was going to have to be sent home. The hospice was able to arrange for delivery of a hospital bed and other necessary equipment, as well as training and some medical & day-care assistance, some of which may actually be covered by our insurance.
So I spent that weekend trying to rearrange our living room to make room for a hospital bed and associated equipment. Our doctor was able to delay her discharge until Tuesday (although our insurance company has decided that the extra days were not “medically necessary” and I may end up having to pay for them). My wife was still getting her nourishment exclusively through the feeding tube, and the hospice nurse explained how to do this, along with other aspects of home care such as emptying her catheter bag, turning her to prevent bedsores, etc.
In the three weeks she has been home she has shown some improvement. She laughs at things on TV, and she’s started talking again, although sometimes what she says doesn’t make sense. I’ve been told that she is most likely suffering from Parkinson’s-induced dementia, which will get worse as time goes on. Last night she kept talking about “what happened in Washington two days ago” and seemed very concerned about the children (we’ve never had children, unless she means our cats). This morning she was fine, and had no recollection of what she had said last night.
I’ve been advised that at some point the dementia will become permanent, and then I may want to consider whether to continue her feeding or just “let her go.” I keep hoping they’re wrong, that the dementia will go away and I won’t have to make that decision.
Sometimes I find myself coming downstairs in the morning almost hoping that sometime during the night her body had given up before her mind did.
And then I straighten out her nightgown, put the covers back on (she almost always throws them off overnight), kiss her forehead, and go to work.
