Tuesday, March 22, 2011
I haven’t gathered the thoughts on my daily routine lately. I think “care” comes to me rather naturally. It’s what I do. I prefer to put others before me most of the time. It’s easier.
Dave sleeps quite a bit, but is very alert and talkative especially for company and phone calls. He definitely turns it on with an audience! I’m trying to figure the number of hours he sleeps – maybe a couple of two hour naps, dozing off and on. I’d say he sleeps about 5-7 hours throughout the day, and most of the night. I actually don’t stay in the room most of the day. One, is I think we’d drive each other crazy or depressed or bored when we ran out of things to talk about, or trying to ignore the elephant in the room. Two, I have to continue on with my work, the household chores and the new ones of his care. And, third, he needs his rest; I assume Mother Nature knows best for his sleep time.
So, my day has changed. Yet, I feel fortunate to be here.
There are ongoing care issues He’s had a urinary tract infection from the catheter. There is the catheter care itself. (Fortunately, Dave is still quite capable of all his self care –shower, toilet, eating – right now) From the early weeks after he took the Tarceva that put him to bed, he developed pressure sores. We are still trying to heal them a month later (someday this will be a humorous story!). He takes several meds two times a day that require retrieval. He is still eating well, so I bring meals to him since he is basically room-bound from fatigue. The nurse drops in twice a week for updates, vital signs and solving any health concerns. Miscellaneous other healthcare folks check in, too. Calls and visitors are a regular part of several days each week. Small things can feel big for his care – it’s the call to the office, the call back, the explanations, the assessment, the problem solving, the choices and decisions, the pick-up of meds, the taking them, the follow-up. Lots of health issue dominoes can be knocked over easily at any time.
The level of care is similar to taking care of a four-year old. I don’t mean that in a derogatory sense, but just the amount of support the needs. He is independent but likes me nearby for security and help. (Me, too) He can dress himself but some assistance is appreciated. He is a picky eater because foods sometimes taste weird or just don’t sound very good, so I often make us different meals (although with his returning appetite this is not so much a problem) When he has cravings I am quick to run to the store. He likes comforting and attention throughout the day. So I take a time out each afternoon with him for watching TV and dozing. (OK, that’s for me, really.)
I’ve had this fantasy that I can keep our bedroom and bath not looking like a hospital! This idea plays into my retail therapy and nesting and control-my-environment instincts. So at least I have an excuse for this outlet.
When home care begins the supplies do too. We have gauze, saline, catheter supplies, pills, chucks underpads, gloves, lotions, gels, and I’m sure other stuff in there. Everything is sterile and disposable! There are also folders of what to expect, contracts and information, phone numbers, and paperwork. This is typical because I always see this in the homes I’ve attended as a hospice volunteer. There is a bright fluorescent sticker by the phone: Call Hospice First.
For the first week the supplies all fit neatly into a new cute little basket on the bathroom counter. Now it overflows and is taking over the counter. I’ve had to get a larger trash can for convenience; the one under the bathroom sink isn’t enough any longer. The new one fits perfectly under the counter.
I’ve dragged some of the padded dining room chairs upstairs for guests. One sits outside at the bedroom entrance so I don’t have to trip over it in the room. I have a little food station on the mantle within Dave’s reach that has Pop Tarts (eat!), power bars, Cheez-its, napkins, salt and pepper. An alcohol sanitizer sits here for a quick hand wash. I picked up a set of TV trays, so he and I can still enjoy meals together now in the bedroom, and to use when family arrives. Very helpful. I found a great bedside table for Dave I ordered on the internet. It can be adjusted for bed height, chair height, tilted, but most importantly folded down and shoved under the bed! Best buy ever. I’d be lost without our waiter’s tray (check restaurant supply stores) to bring up food from downstairs, plus the skills I learned long ago earning my way through youth (everyone should work in a restaurant once in their lives).
Our “suite” is now a multipurpose room that can change on a moment’s notice. But mostly it has become our sanctuary for making new memories, seeking hope, reliving life, finding comfort in ordinary daily events. This has become our own brand of care and feeding. I wouldn’t have it any other way.