Wednesday, September 10, 2008

Spilling my guts...

Kurt is more mobile, but his balance is terrible...which is normal. The case manager nurse thinks it may be an exacerbation of his SOPCA (sporadic olivoponticerebellar ataxia) There's one for your word files.

Well, sadly, the nurse knows less than we do. We just don't know. He is weaker because he's been laying around. I left him to go run some errands and he took a nap; when I got back he was back in his wheelchair, had his fanny pack on, and almost made it to the door to greet me. He is being careful not to hurt himself because he knows that will be really, really bad. I spent a bit of time tracking down the doctor who ordered the MRI, and we don't have those results back. I turned that search over to our family doc. I'll be surprised (pleasantly) if he didn't suffer a teeny TIA. I've done a little searching and actually found that some with similar disorders have had improvement with traditional Chinese medicine. Not's helped me. I may take him to my Chinese doc. It may give him a positive feeling. That cannot hurt a bit, and may make all the difference. Anyway, he got into his scooter and joined his "under the stairway" apartment friends for a bit of a chat.

Otherwise, I think he may do better with physical therapy; perhaps it will buy him independence for a bit longer. Or, maybe that's the 1/2 oz of wine I'm ingesting right now talking. I figure grapes are natural, and it seems to be taking the edge off the freaking anxiety I'm having. Don't worry. No plans to become an alcoholic. My tolerance lasts for about that 1/2 oz. I'm done, but I feel better.

The case nurse found out I have lupus, and suggested that I don't need this stress. Well, no, this kind of stress is just for other folks, certainly not ME! Heck, NO ONE needs this kind of stress! My dad lives this 24/7. Kansas Bob lives this 24/7. The big difference, though, is, this is not my husband, nor my child. This is my brother, who I think is really a good person at heart, but has chosen to be pissy to me most of my life.

I'm admitting right here. I'm scared, I'm tired, and I really don't want to deal with this. Some Christian gal, huh? I am seeing the road down the way. I should be grateful that I'm on the delivery end, not the receiving end. Shame on me. Truly.

I tended my grandparents. I tended my mom. I tended my in-laws. This is different. Not a parent, nor a child. Of course, I feel compassion for him...let me tell you, it's a cruel disease; but my compassion is mixed with irritation and I am ashamed. I get flashbacks about my childhood, growing up with him. When he was able he beat on me every chance he got. My mother and father enabled him by not making him live on his own when it would have been optimum timing to do so. When I had kids, he says he loves them, I'm sure he does, but he has been jealous of their "normalcy" and has picked on them. He couldn't drive, so it was easier to have him live at home for convenience. He didn't live on his own til my mom died when he was 42. My dad remarried and set him out on his own in an apartment. I moved him closer to us when my stepmom became ill with supranuclear progressive palsy, so he could be independent, but not a 25 mile drive for me. Dad's pretty well tied up.
Supranuclear progressive palsy.
There's another one for your word file.

Thank you for your prayers. I guess I need them for my hard heart. This may be one of those I delete in a couple of minutes, because you'll surely think I'm mean.
Thanks to my Kentucky blog friend for the call. Blogworld truly rocks. Thanks, Connie, for the encouraging calls and strong Words. Thanks, Kyle, for stepping up to help your ol' mom. You make me proud.
Thank you all for your support. It means the world to me.


codepoke said...

I wish there were words, and I wish I could make a difference. I have nothing but admiration for your reaction.

May the Lord Who knows your every thought and Who thinks more of you than you can imagine make a way for you.

Missy said...

I feel the same way as Kevin. And I really admire your openness.

I also understand (and recognize all too well, myself!) some of those feelings you are not so proud of. Brothers can be buttheads. I had a bruise for 5 years where my oldest bro would frog me in the arm every day. He's a minister now. :)

I can only encourage you that you are human, and as such have as much, if not more, propensity for weakness than strength. But you are cleansed, pure and white before God, and He has your back.

Love ya, Kiki!

Julie said...

I realize that I don't know you, nor do you know me... Hopefully what follows will provide encouragement rather than irritation.

It's normal to be scared, tired, and not wanting to deal with a stressful situation. Jesus was scared, tired, and didn't want to deal with a stressful situation. You're human.

What matters is how you choose to respond to a situation... when you keep doing the hard thing because it's the right thing, that's grace. I think you're gonna be okay. :)

Lynne said...

No, I've never been where you are (other problems, but not those ones) When I hear stuff like that I have this niggling fear that were it me, I would be tempted to cut and run .. I have seen into the limits of my endurance on other issues, and it's not a pretty place. So first, I admire you just for hanging in there; don't ever underestimate how much love, how much sheer guts it takes just to do that.
Second, I'm long past the point, and so are you, where we believe that faith gives simplistic answers. the only thing I know, that I can say with transcendent certainty is that God is still there, and still doing something, even in the silence and the darkness and the fear.
So all i can do is pray that you and your brother, and whoever else is caught up into this is held in His love .. His transforming, all powerful love.

Don said...

My troubles pale in comparison. I admire you. Thanking God for peace for you.

Kansas Bob said...

The thought that I had after reading your wonderful transparent and vulnerable post was - love perseveres.. and, because it endures, love never fails.

I am giving thanks for you Karen.. your life is an expression of that persevering love.. on display for the all to see.

Blessings to you as you hang in there with Kurt.. I sense that he may be one of those Jesus spoke of when he talked about the least of these.

Maggie said...
This comment has been removed by the author.
Maggie said...


I have never experienced the care-giving situations that you have, but when I talk to others who provide care for an elderly parent or a disabled child, I hear them speak of how exhausting and overwhelming it can be.

Of course they love the child or parent, but they have needs too, which oftentimes are ignored because there is no down time and no way to get away if you are the primary caregiver.

We have a program in our county in which people volunteer to go stay with a loved one while the primary caregiver takes some time for him or herself, but the bottom line is that you can never be too far away, and there are rarely others who will stay overnight or for a week so the caregiver can take a break.

I know your brother is not living with you, but in so many ways, you are the only one to be sure he is receiving the help he needs. That can be very demanding and draining in the best of situations (for close siblings), but when there is an estrangement, it is particularly hard.

I have one sister and three brothers. I speak with my sister often, but I would not say we are "close." My youngest brother lives in town, but I have not seen him in several months. I have a brother in NYC and one in Louisville. If I don't do the calling or make the contact, then it never happens. I still send birthday cards to them all, but only receive one from my sister.

I have finally stopped calling them. I figure they know how to reach me if they want to talk. It makes my heart sad, but you can't make people be who you want them to be, and what we find out is that family is far more than just a biological connection. We just aren't a close family, but I am very close to my nieces and my children are close to their cousins, even though they don't live anywhere near here. It's hard to just pretend things didn't happen when you were growing up, and I applaud you for being so open and honest with your feelings. I have written about mine many times on my blog but not recently.

I think a good 2-4 ounces of a nice Shiraz or Cab/Merlot blend or Pinot Noir would not hurt you one bit, and is supposed to be very heart-healthy. And I don't think you're going to become an alcoholic if you have an occasional glass of wine, so don't be hard on yourself about that.

I can't know the difficulties Kurt's situation has created for you; I can only ask you to be sure you take care of you and know that others are thinking about you and yours.

karen said...

CP...thank you. Your words uplift.
Missy, I know you know what I'm talking about.
Julie, thanks for coming by and for the encouragement.
Lynne, I just don't see you cutting and running but it's nice to hear someone else might have that thought!
Don, thanks. You have your own plate-ful!
KB, good reminder. Thanks.
Maggie, thank you for your words-and affirmations :-)

Becky said...

you teach/model good stuff.....the vulnerability here is ....just thanks always for your honesty.

Abby said...


I think it's normal to feel a bit more frustrated about caring for an adult sibling than for your kids or for your parents. With your kids, it''re the parent, that's what parents do is take care of their kids. And when it's your parents (or your parents-in-law), it's kind of like you're paying them back for taking care of you. When it's a sibling, it doesn't feel like you're doing what you're supposed to do or like you're repaying something, so it gets pretty frustrating. And...yeah, I feel ya.

I think we should do lunch when I get there, if you have time. Would be fun, just us girls :)

karen said...

I know you know, Abby Rose. I hope you're taking notes here.
And, lunch if I have time? I'll always have time for you.

Abby said...

Oh, definitely am. I'll have to tell you the fun details when I get down there...both the good and the bad.

Awesome! I'm looking forward to it, a lot.

Pat said...

I think you are being a bit hard on yourself. I think that because I know if it were me that I would find a way out of it.

I had responsibility for my mom, aunts on both sides and now my mother-in-law, Mildred. I helped but never took them into my home or had full responsibility of their physical care. All were in care facilities.

With mom and Mildred we started with assisted living and then nursing homes. I visited nearly every day but I didn't have to do meals or care or even be completely tied down. I still have Mildred, but when evacuation came for Hurricane Ike, the facility took her out of harm's way.

I don't feel guilty. Maybe I should. But I have watched friends nearly kill themselves caring for relatives who would probably have received better care from professionals.

I have told me kids that I do not want to live with them, nor do I want them to give up their lives to take care of me. I mean it!!! I want them to have whatever God puts on them but not a bunch of guilt from me. I expect respect and care, but not their lives. They don't even need to visit as much as I have done. Only what is needed to be sure that I'm being properly treated--that's a good bit in my experience.

So, don't take on what God doesn't give you. He knows what is needed for the family relationships and for His purposes. You know how to listen better than most. I have faith that you'll do it and that His purposes will be accomplished. Just remember who's in charge and who you need to please.

Love you much and will continue to pray for you and for Kurt.

karen said...

Thank you, Pat. I appreciate your perspective.
Kyle and I delivered groceries to him last night because we didn't want to get caught up in a lot of rain if it got bad today.
He was up and around, fully dressed and enjoying a salad and sub sandwich that he had delivered. Praise God he's better. He walked over to the table to write me a check for groceries and for his repaired glasses that I knocked myself out to get for him before the eye doc office closed for the weekend.
Not even a thanks. God brings the truth out. He can afford care-either at home or someplace else.
I'm glad you're all safe down there! Praising God for that.

Pat said...

I left one thing out. If GOD is saying do the care, that's different. However for most of us it is a guilt issue--either our own or something put on us by the person needing care or other people.

It's also different to do stuff that needs doing while being careful not to get caught up in putting down God's desire for your life

karen said...

Good stuff to think about, Pat.

I surely think God had a hand in me checking on him that morning. My dad wasn't concerned when he didn't return his call. But, I knew as I got in the car that something was up. I had also known as I picked up that prescription for Baclofen that Friday evening that it wasn't the right stuff...but of course, we sometimes brush those feelings off as silly.

Does God want me to give up the stuff that He wants me to do for Kurt, when Kurt can well afford good care? No, I don't think so. I got so distracted this week that I didn't do the stuff I was truly led to do.

Kurt didn't want home health care, nor private pay care. Why should he when he can get care for free? This has made me realize I need to press him to get on the files with a private pay service for future needs.
Thanks, Pat.

Robert said...

karen forgive me for getting here late wow I have to echo so much of what everyone has already said. Love is action and you show TONS of love to your brother my dear friend, regardless your feelings. You display such courage and resolve even more aso by sharing your human limits. Hugs and warmth and prayers for you and him sweet karen!!! Thank you for being a true inspiration!!