Loving Those Who Are Sick

I spent some time yesterday at the bedside of a lady who has suffered a stroke. She is bright, and congnizant, but unable to talk. Her family has supplied her with a markerboard upon which to scribble notes. They have stayed with her and have honed the ability to understand and communicate with her.

To my discomfort, almost as soon as I entered the room, they left to run a thirty-minute errand. So she and I were alone, with the challenge of conversation. I observed her worn and tattered Bible at her side, and family portraits scattered about the room. For a bit I conducted a monologue about family and church and God, and we had prayer. Then she wanted to write a note, so I handed her the markerboard. With her one good hand, slowly and painstakingly she printed the words with shaky block letters. The words mostly made sense, but resultant sentences were puzzling. She would look at me begging for understanding. I would try to guess her intent, but she would shake her head "no", erase a few words and complete another mixed-up sentence. I've not been good with Wheel Of Fortune, or charades, nor was I successful with her word puzzles. It was doubly frustrating, because I knew the lady had a bright mind. The best I could do was to hold her hand and smile.

I know very little about physiology or psychology, but I know the brain is a complex organ. And with this dear lady, somehow there is a disconnect between her thoughts and her words. I've read about neurons and synapses, and I know that complex proteins serve to facilitate connections. Because of a stroke, and the ravages of ALS, such connections are now haywire for my friend. She does not understand, or even is aware of what is happening. However, she is frustrated.

And I consider my teenage daughter, whose behavior has been quite mysterious, unpredictable, and unhealthy. For many years we attended counseling with her. And I remember a very bright and capable psychologist asking me to consider that K has a condition for which she may not be responsible. Both of our primary cousellors have talked about how our daughter views the world from a very different perspective; that her understanding of right, wrong, and resultant actions are determined by her thought processes. But I never bought into this idea of what I will now crudely describe as a "lack of brain health".

Now I think about this lady at the hospice. Her thinking was ernest. And she just knew she was writing something that was sensible, that expressed what she intended. I could see that she was communicating poorly. I knew the verbs, nouns, and adjectives were jumbled. She did not, and she was frustrated and hurt because of the lack of connection. And somewhere inside her head, the neurons and proteins and electrical impulses were not working as they should.

I think about my K. I know there is a wonderful person there. I love her and she loves me. She does crazy things that make so very little sense. And she makes decisions that burn her, time and again. I'm pretty sure she considers her behavior, even when it is obviously unwise, to be sensible.  She is very unhappy that life seems to treat her so unfairly.  And she is unhappy that I don't seem to understand or appreciate her.  I want to help her, and it seems I can't.

For so long I've been insistant that hers is a moral and spiritual problem. But....maybe not.

Maybe counselling, medication, maturity, and just plain survival will all work to bring her to a place in life much better than now.

Maybe I just need to be her dad.  Not blame her.  But, be her number one fan. 

I notice that Jesus was not in the habit of condemning, or further injuring those who were sick.  He loved them.



posted by: bawdy (reply)
post date: 12.01.06 (11:53 am)

I can imagine the poor woman's frustration. As for your daughter, it's possible she has Asperger syndrome or some other condition that might explain erratic behaviour.



posted by: doeeyed (reply)
post date: 12.01.06 (12:18 pm)

What you are describing is expressive aphasia (the opposite of receptive aphasia). I worked for years with head injury and stroke patients. It was very rewarding and at the same time heart breaking. I have to pat myself on the back a bit and say I was very good at my job. People used to tease me and say it was because I was on the same wave length..they may have been on to something. haha.

My oldest daughter has always been a challenge. When I got sick, she got worse. She's 23 now and sometimes, still seems lost at times. It breaks my heart. Like you, we've been to many counselors, therapist, etc..
The good news is, she's a lot better. At one point in time, I didn't think she'd ever hold a job for any length of time but, she does and has.

She pays her bills, makes better decisions and is all 'round more pleasant to be with. I still wonder if she'll ever have a lasting relationship. Only time will tell.

"Maybe I just need to be her dad. Not blame her. But, be her number one fan."

Give it a try Dad. It sounds like a good plan to me.

Blessings to you and yours,
Doe





posted by: doeeyed (reply)
post date: 12.01.06 (12:20 pm)

"She's 23 now and sometimes, still seems lost at times."
I should really proof read before I hit submit.




posted by: PastorDave (reply)
post date: 12.01.06 (12:44 pm)

Reply to: bawdy
I did a check on Asperger Syndrome. I do not observe the specific symptoms in her. But, who knows? I've spent the better part of 6 years trying to understand, and am still clueless.

A point I've made is that she is most likely as frustrated with me not understanding as is the lady with a stroke. My K has a serious challenge, and needs help bigtime- sympathy, empathy, etc.




posted by: PastorDave (reply)
post date: 12.01.06 (12:48 pm)

Is there a social/moral version of receptive aphasia? It sure sounds like what my daughter has. She will go along for a month or so doing just fine, and then all-of-a-sudden do something totally stupid, except it makes absolute sense to her. She will burn everybody out, come back to us for rescue, do just fine for awhile, and then the pattern repeats. It's got to be a miserable life, although she most often appears to be quite happy. Oh well, I'm going to try simply loving and supporting her, and hope/pray the behavior changes.

Your work sounds very rewarding. Helping other is the best of work.



posted by: akelso (reply)
post date: 12.01.06 (6:35 pm)

PastorDave, I'm so very touched by this post.

The play between the lady with stroke and your own "K" (daughter,) is particularly effective for leading us all through a wilderness that is so human - frustration with another's genuine failings that can look deceptively as if they are volitional.

Clearly the lady with stroke is understood by us all as an illness event (never mind the minutiae of neurons and synapses.) Folks who suffer with more subtle issues of mental illness are less fortunate, absent a discrete event that makes the marked distinction between now brilliant and articulate - and now incoherent.

Your dear daughter struggles, every bit as much as the lady with stroke. She however doesn't have the same benefit of the doubt. It sounds, though, as if your own crossing a threshhold in her direction will make all the difference.

Amen! - ak



posted by: sudeshpoojari (reply)
post date: 12.01.06 (7:33 pm)

well i heard scientist are developing something for it as of using stem cell, so i hope in few years we will see cure for stroke, and stem cell is seems to wonder medicine if it worked it is told to cure many things, like even spinal cord injury can treated.

So hope for the best, and for tht women smile is the best medicine available of now



posted by: graceshaker (reply)
post date: 12.02.06 (10:26 am)

my dad had a stroke when he was 59. for a while it was hard to communicate but he re-learned how to write and talk and walk etc. his thinking was never quite the same. his ability to reason thru things was impaired. it was an interesting thing bc before his stroke he and i never got along. often violently so. but after the stroke we developed a relationship. i finally loved him. and he finally loved me.

5 years later he had another stroke and laid in a coma for 9 months beand how fore passing. his eyes were open and he would look around - but he couldnt move or communicate. he was completely dependent. we always think things like that must be the worst but as i reflect on my recent week in the hospital i can honestly say i appreciate being struck down. god used that time to get my attention and to show me how needy i was and how many others are lonely and in need. i drew close to him in a way i simply couldnt when i was "well". and for reasons i wont go into - i think maybe my dad had an experience with god while laying immobile on that hospital bed for 9 months.

we are so blinded by what we see that we fail to understand that there is no problem that is not spiritual. and we suck at trusting god - so we rely on this earthly shit. it works sometimes. but not always. and ultimately we all hurt and die anyway. and the silver lining? tomorrow is one step closer to pain and death.

part of what ive learned is that communication with god is far more valuable than communication with anyone else and that ultimately he is the only one able to really invade our situation and make it right. and that he rarely does so in the way we would have.

im thankful for my dads stroke bc without it i might never have known or loved him. im thankful for my week in the hospital bc its drawn me closer to my heavenly father. surely suffering that produces such things is not evil.



posted by: graceshaker (reply)
post date: 12.02.06 (10:28 am)

please excuse the glitch that produced:

beand how fore passing.

it was only supposed to read: before passing.



posted by: bawdy (reply)
post date: 12.02.06 (11:49 am)

I wish all the best for your daughter, and her relationship with you.



posted by: babe4jesus55 (reply)
post date: 12.02.06 (2:26 pm)

Your daughter sounds something like my sister. She can be totally cool for a while, and then *boom!* Like in preparation for the winter blast earlier this week, we told her to go buy a big jacket because she didn't have one. She came home with a big vest with no arms and had to borrow one of mine instead. Made sense enough to her. She said she didn't think it would be that cold-- 20 degrees. Or maybe she's just hard headed. *shrugs*



posted by: lorischuster (reply)
post date: 12.02.06 (3:49 pm)

Being a parent is the most difficult job in the world--perhaps not in physical terms but, certainly the emotional aspect is sometimes overwhelming. Love and pain seem to be inseparable but we do it because the joys are ultimately worth the heartache. Feeling accepted for who you are--despite your imperfections--is a gift. This is especially important in the relationship between a girl and her father. Sounds like a good plan.



posted by: lorischuster (reply)
post date: 12.02.06 (3:49 pm)

Reply to: akelso
Alas we agree! :)




posted by: akelso (reply)
post date: 12.02.06 (5:02 pm)

Reply to: lorischuster

Oh NO! (We'll have to tweak that ...) I'm truly not surprised, Lori. - ak




posted by: PastorDave (reply)
post date: 12.02.06 (7:10 pm)

Reply to: doeeyed
Is there a social/moral version of receptive aphasia? It sure sounds like what my daughter has. She will go along for a month or so doing just fine, and then all-of-a-sudden do something totally stupid, except it makes absolute sense to her. She will burn everybody out, come back to us for rescue, do just fine for awhile, and then the pattern repeats. It's got to be a miserable life, although she most often appears to be quite happy. Oh well, I'm going to try simply loving and supporting her, and hope/pray the behavior changes.

Your work sounds very rewarding. Helping other is the best of work.




posted by: PastorDave (reply)
post date: 12.02.06 (7:19 pm)

Reply to: carmencc
This dear lady will soon pass away. Her condition of aphasia is just one of several critical challenges she faces. I went to see her today; her breathing was shallow, and while she would acknowledge my presence, she was basically sleeping with her eyes opened. I prayed with her and encouraged her family- they are turning upon one another with anger, which is not the proper way to deal with such crisis.

I do believe my daughter has a disconnect when it comes to her mind processing social issues. She takes Zoloft(so?). She functions quite well with many things- works full-time, attends College, cares for an infant. Maybe being so busy and focused is good for her. And, maybe me not knowing the details of her life is good for me. She's independent, but chooses to stay in contact with me regularly.

I do appreciate your thoughtful comments. I intend to give your blog and visit and see what I can learn.




posted by: PastorDave (reply)
post date: 12.02.06 (7:22 pm)

Reply to: bawdy
Thanks. I'm rather sure the future hold much promise for our relationship. And, I'm afraid, much adventure.




posted by: PastorDave (reply)
post date: 12.02.06 (7:25 pm)

Reply to: babe4jesus55
She's a little sister. A synonym is "sometimes a stupid person". I don't think there is a pathological disconnect with your sister's thinking. She's just doing what sisters do- periodic stupid behavior. I'm picturing her, right now, walking around in snowy weather and 20 degree temps in a sleeveless vest. It does seem stupid. Aren't you glad you were not like her, when her age?




posted by: PastorDave (reply)
post date: 12.02.06 (7:29 pm)

Reply to: lorischuster
A big question I have: Why does my child, and indeed the children of many, make such an ongoing and all-out effort to press beyond the limit of my love for her? She has done some amazingly hurful things seemingly aimed toward me. They have hit me hard. My initial reactions have not been picture-perfect, but I've never given up on her and I've never closed the door. But, what a relationship!




posted by: mimi (reply)
post date: 12.02.06 (8:02 pm)

dave, i always love when you show us your "human side"..you never, ever act pretentious and like you have all of the answers because you are a "preacher"...first you are a man and a husband and father...your daughter is a very lucky young woman...her daddy keeps trying to find ways to help her and to love her...and sometimes our children do things that we would never put up with from strangers...you keep being human and loving and i know, in time, she surely will find her way, no matter if she is challenged in some way or just a crazy kid. you make me proud to call you friend. xoxoxo



posted by: lorischuster (reply)
post date: 12.02.06 (8:29 pm)

Reply to: PastorDave
I think that some children, for whatever reason, need to continually test the bounds of your love for them. Some kids--especially those who are non-compliant and challenge our parenting skills--know that they are 'different' and while they may relish it, they also want to know that you love them for who they are. I think that this is especially difficult when her father is a Pastor--there are incredible expectations (it is like living in a glass house) and for someone who doesn't fit in the box--it makes you want to rebel even more. I spent a lot of years working with kids and I think that when she treats you poorly she is actually asking "is it really unconditional dad?" Show me.



posted by: surrogate (reply)
post date: 12.04.06 (6:57 am)

I'm glad I read through the comments before I wrote mine. What Lori said was right along the lines of what I'd hoped to say.

Great post. Your own change in attitude will go a long way toward helping your relationship with K, even if it doesn't directly help her with her problems. She'll feel the difference in non-judgemental love from you easily, I'd guess.



posted by: fractalmom (reply)
post date: 12.05.06 (5:24 am)

I, like you, wonder about my daughter. Sometimes, she can be the smartest, funniest, most wonderful person in the world. Others, she is totally clueless. The oldest grandaughter (her firstborn) was diagnosed with mild ADHD. I read up on it. Turns out that undiagnosed children usually grow up to be spontaneous, non sensible adults who make really bad decisions and do not see 'long term' as we do. For instance, getting into bad relationships, quitting their job without realizing their paychex pay for food, rent, etc. These undiagnosed ones are at a much greater risk (we're talking 75% here) of abusing drugs or alcohol to 'self medicate'. At least in my daughters life, this seems to ring true. Of course, now that she is a heroin user, she is not really eligible to receive the medication that can treat her undiagnosed ADHD, since that medication can be abused. Sigh.

Who knew 27 years ago? Does it really matter? I am not sure. I have come to the realization that what happened can not be my fault, although I most certainly contributed to her upbringing. She was loved, taught morals, values and manners. She was schooled well, was intelligent. What happened to her, what is happening to your K?

The only safe place for me is detached. Not totally, but away from the insanity. Away from the constant crises's that fill her life. Away from the whining about how she doesn't understand why nothing works out for her and she is a good person. All of which are true, but all of which really wear me out.

Good luck and I will continue to pray for your family.

dawn

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