"I Ordered You Up Some Body of Christ"

D's sister and I took the kids up to the old folks home (as my dad calls it) yesterday. I was way tired. And keeping two kids occupied in a very small space while keeping them from grabbing about three hundred hanging tubes that were precariously connected to D's body is not a restful undertaking. My paxil flu is definitely improving. It comes and goes still, but will stay away for hours and almost days at a time. Yesterday and today, however, it seemed to be relapsing a bit.

As I was walking in the nursing home with the kids, I had this whole series of thoughts that zipped through my head in about 2 minutes and led me to a conclusion of sorts about parenting these kids. When I walked in, I said, "Well, kids...another day another hospital." I was amused that they've visited almost every hospital in town in their young lives. I do think about that. The kids spending their lives dealing with sick parents. Tons of people say to me, and I don't know if every parent hears this as much as I do, they say "Well, when they get older, they'll be able to take care of you and D." Do people say this to you all? I feel like they think we had them to be our personal slaves and to drive me around and take care of D's catheter and what-not. Or like we expect them to spend their lives taking care of us when we are no longer able. This is never how I thought of them at all.

I don't think it will ruin their lives to have disabled parents per se. I think there is value in having them experience a different side of life than most people do. Both kids walked, WALKED! (with us holding their hands) all the way down the hallway with a bunch of elderly ladies and nurses cheering them on. Aaron stopped and peeked in every room as the inmates-I mean patients-would smile and wave. He just ate it up when some women in the dining area went all googly on him. A man watching the Superbowl taught Naim how to put both hands straight up as he said, "Touchdown!" I don't think they were hurting by having to spend a Sunday afternoon in a nursing home.

On the other hand, as someone whose made countless personal sacrifices with my youth in order to care for disabled people, I don't think I could have done it if it was obligatory rather than a choice. The runs on the beach I missed, the vacations, the hiking, the adventure I never got to do because I was always with a disabled person who couldn't participate was a choice I made. I sacrificed grades, jobs, friendships, and romances to spend most of my 20's doing my best working with, living with, and loving people with disabilities. Sometimes I regret lost opportunities, but they are my regrets, no one else is responsible for them.

So, I do not want my kids to ever feel obligated like they have to take care of us. I think when they get older, they will have household chores, such as keeping their room cleaned, doing their laundry, perhaps mowing the lawn or cooking, etc. that are required because they are members of the household. These things will be divvied up evenly with consideration of each person's strengths and interests. There will be no allowance for these things. Then, I think there will be a list of optional stuff. Some of these things may be directed towards our disabilities and some may not. These things they may choose and get compensated for. But I don't plan on raising little personal care attendants.

If D and I end up needing major home health or even living in a nursing home when the kids are grown up, I want them to not feel obligated towards our care. I almost wish they won't even choose to participate in much of our care. There was a brief period in time a couple of years ago where D and his father (with good intentions) had me convinced that families should always stick together and help each other out and its the way it should be and you shouldn't feel guilty for recieving help from your family because that is what families are obligated to do. Then I discovered it was really just kind of a lie. I told them I was pregnant and I recieved a proverbial past due notice and itemized bill on everything they've ever done for me and my credit was no longer good at their store. I wish they would have told me I was racking up a bill when I thought I was working with a nonprofit. (And also that MY deposits weren't good at their bank, thus provoking in me the unfortunate "over my dead body" kneejerk at the mere suggestions of getting any help from them ever again.) I learned how important it is for families to be dead honest with each other on what they can and can't do to help and also what they WANT and DON"T WANT to do to help. Because what happened to me when I was slapped a tab I never knew I started was one of the most humiliating experiences in my life. I will make damned sure that my kids know that they have choices. And know that they don't have to show their love for me and D by giving up their dreams and sacrificing what they want. In this way, you are clear that when they do offer to help you, they really want to do it. I don't want it any other way. My only caveat would be that they share their lives with us and keep in touch. I don't want my kids to sacrifice their 20s and 30s taking care of very needy mom and dad. I want them to backpack through Europe, join the peace corps, go away to college, meet someone and have babies, do crazy things, whatever they are going to do. But I want to hear about them! I should rather want to live vicariously through my kids adventures than hold them back and watch them sacrifice it all for my care. I think that if you can take that guilt away, then they will feel more comfortable coming around and visiting, because they know you support the choices they made.

Anyway, that's what I decided while walking down the nursing home hall.

D seemed tired and grumpy yesterday when we were there. The kids were just so wiggly and excited and in to everything that it was hard for him to really spend time one on one with them in the bed. I think he liked watching them, though. I think it wore him out!

I worry about him because he said several times when we went through all this a few years ago that if it ever happened again he was just going to say, "forget it" and let himself die. Now, with the foot thing just a few months ago and then this so soon and then basically deciding that our only option was the nursing home, I worry that he will crash and burn. He is not in any imminent danger of death right now, but this whole thing could go downhill very fast and that is not lost on any of us. I have to stop and brace myself at least once a day and say, "You know, Lisa, he could die very soon."

So I can't do his IV and wound care, but I can do something. Today I called him this morning and asked him if I could make some calls and see if I could get him some help and find him something to do. He gave his permission. (I do not talk to medical/social work professionals without his permission unless he is unconscious or something. Ahem.) Anyway, I spend part of the afternoon making some phone calls. My feeling about people with chronic illnesses and long-term hospitalization is that life does not have to stop, it just needs readjustment. There is absolutely no reason for him to lay in that room for a month doing nothing and wasting away.

So first, some visitors for his spirit. I arranged for him to receive communion once a week. Also arranged for a nondenominational chaplain to come see him. I'm working with our church to see if one of our Covenant group (small group ministry) leaders could give him a reading once a week and then come by and discuss it with him and maybe one or two other covenant group members. He likes to talk philosophy and science with religious types, so this may help keep his brain active.

Next, a watchful eye on his mental health. I arranged for a psychologist to come in and help him set some mental health goals and help him along with keeping the depression manageable. Also, it is good to have someone to talk to who isn't your damned family (and yes, that includes me.)

Finally, a project or two. I'm still doing some thinking on this one. It depends on how well we can set up his computer and his stamina level and whatnot. One thing I already talked to our church about is having him do some accessibility consulting on a new religious education building they are in the process of planning to build. They have called and asked us several times to come to meetings and give input, but we have never been able to go. I said to them today, you know, if you take the mountain to Mohammad, you might have your consultant and he might have a project. So we are possibly looking at getting someone to come down with the plans and get some input from D about them. But this is going to depend on how his days go. They are having PT and OT work with him, and then with bandage changes and whatnot, it is hard to say how much time or energy he will have for a project. I'm trying to find something interesting, but with no stress or deadlines.

So, there's that. The phone thing is just crap. There is a phone jack in his room but it is dead. The social worker blew some bullshit up my ass about how they are "trying" to get phone service in the rooms. Um, its a couple of phone calls, and a line item in your budget, no? Just fess up and tell me that your corporate overlords don't want it to eat into their ridiculous profit margins. So we can have phone service and dial-up, but we have to call the phone company ourselves and get them to install it and then bill us directly. Is it worth it? Haven't decided yet. So, I'm seeing a lot of corner cutting at the place. They feed D small portions for meals and things like white bread and bologna sandwiches. Who the hell feeds white bread and bologna to elderly chronically ill heart patients and such? I haven't eaten that kind of shit since the 70's when we were po'. But maybe I'm a food snob.

Comments

[phoenix]

You have so much on your plate. I wish I could help you out somehow, or that more people where you are were available to support you and babysit for you. I admire you for how much you're doing. And your babies are beautiful! Don't ever let anyone convince you that you should settle for less than what you want in any way, for any reason.

[shannon]

1. The phone thing? Criminal!

2. Bologna on white bread???!!!

Okay, so I've been reading Andrew Weil's book on healthy aging and according to it, bologna on white bread is like a slow murder weapon for older people (well, for anyone, but especially older people). And that's what they're serving in a nursing home full of older people?!

I know it's not refusing to change the sheets of the incontinent, but it's bad enough. Bad enough!

Poor D. Poor you.

Hope he heals soon and you all get back to happy life as parents of the world's cutest twins.

I'm going to set up a little "Get Well D" altar, 'kay?

[JB]

Your comments on children's seeming obligation to care for their parents really made me think - thanks. As far as the food thing goes, it always amazes me, when I'm in the hospital, how they serve such unnutritious and constipating food. What's with healthcare facilities serving up such crap???