Tuesday, June 23, 2009

A Mile in Her Shoes

I'm sitting here trying to devise a short version of what I'm thinking. I don't know if you, my fine blogees, get tired of reading about my mom, but I know sometimes I get tired of writing about her. Not the woman herself, for she's a wonderful woman with a lot of stories in her, but about her situation for the last 18 or so months.

So let's see if I can get out what's in without rambling for paragraphs on end.

See, Mom had a welcome doctor's appointment yesterday at Bowman Gray Hospital in North Carolina. It's a fine establishment, and we'd been trying to get her referred there by her local doctor, Dr ITalkJustLikeHuckleberryHound, for some time. There's a dermatologist on staff there who's one of the leading men in the southeast US on the subject of psoriasis. When Dr ITJLHH called on Friday, they said they could take her sometime in July unless she could come at 8:45 Monday morning. We grabbed that and growled.

OK. Let's go through my mom's current list of health woes. I'll try to get them all in while also giving you a picture of what my once vibrant, optimistic, happy, funny, and on-the-go mom has become.

1. She has psoriasis so bad she looks like a leper. Her hands and feet are the worst, but she has it everywhere except her face.
2. She has heart problems. Two blocked arteries, one fixed, but one unfixable. She was also diagnosed with congestive heart failure.
3. She has had since childhood scoliosis. Never bothered her till this past year, when she was diagnosed with small stress fractures in her lower back. She was fitted with a fancy back brace to wear during the day, and at night if she wants, because of this.
4. About 9 months to a year ago, she had a blood clot in her lower leg. It was dissolved by cumadin, which, if you're familiar with the drug, you must take for years after it's worked its particular magic on your clot. Because of this, her blood is so thin she bleeds at the drop of a hat. I mean, really, the breeze from a dropped hat makes her bleed. If she'd ever suffer a cut or fall, she'd probably bleed to death.
5. Because of the psoriasis and the cracks and openings it makes in the skin, she finds herself in the hospital every three weeks because of skin infections, or cellulitis. This takes up residence in the lower leg, because the blood clot has weakened the vein there and that's where the infection finds its way each time it sets up.
6. For any or all of the above reasons, probably the cumadin, Mom is always cold. When I was there Sunday their house was approximately 95 degrees, and she was covered up and wearing a sweatshirt and fleece sweatpants.
7. Because of the heart problem and possibly exacerbated by the psoriasis, she retains fluid quite badly. She's supposed to keep her legs elevated as much as possible.
8. She suffers a fair amount of incontinence, which I'm sure she'd be mortified if I told you about, but there's nothing to be ashamed of. She's in her mid-70s and sick.
9. She is very depressed and can focus on nothing positive at all. She talks only about what is wrong with her and often says she just doesn't know what she's "going to do."
10. She has a world-class enabler in my dad, who in a strange turn of events has done a 180 degree personality turn as well and lost his balls, and does everything she wants him to. If she doesn't feel like reaching out to get a glass of water, he will drop everything and go to her to get it and hand it the two inches to her.

I love my mom. Really, I do. And I know she's sick. But here's what I'm also dealing with in regards to the top ten above.

1. She's been given a prescription for the most current psoriasis medication there is, one with real hope behind it. She's been given it by one prior specialist, and told by two others she should take it. She won't, because some friends at the beauty shop filled her head full of the side effects she might encounter.
2. She still smokes (not as much, or so I thought, till I looked in her trash can today and saw around 90 cigarette butts) and eats lots of fried foods.
3. She has worn, in the 3 months she's owned it, her back brace approximately five times. She doesn't like it. She doesn't like it even though she was told she has to work her way into it by wearing it two hours, then three, then four, until she gets used to the feeling of wearing it all the time. She says it pushes her breasts out.
4. She has a list of foods she can eat that will help to some extent to stave off the bleeding. Certain greens, condiments, etc. She doesn't eat them.
5. She continues to slather Vaseline out of a tub onto her skin at about 30 minute intervals. Her two daughters and at least one doctor are convinced this is not hygenic, that Vaseline is in effect a drying agent and it holds in the germs on her skin and harbors germs from her hands in the goo in the tub. She was asked to, if she must use the stuff, use it from tubes. She will not, because the tubes are too small and she doesn't like that.
6. Nothing much you can do about this one, if you're cold you're cold, I guess. As a forty-something woman, I guess I just can't imagine being cold all the time, so I included it.
7. She will not sit with her legs elevated for more than fifteen or so minutes. She says it makes her back, her unbraced back, hurt. She instead sits hunched in a chair all day, but with her feet usually floor-bound.
8. We've bought her those discreet adult care panties, but she won't wear them. She doesn't think she needs them. Until, of course, it's too late.
9. I guess I'd be depressed too, but my take on depression is to just act like I'm not depressed when other people are around, because people would like to have pleasant conversation. I guess not everyone feels that way.
10. She complains about my dad mother henning her.

So, there you go.

Monday's appointment, which was manned by my sister, I get next Monday's follow-up, was apparently quick and thorough. They took biopsies of all the different spots on her body to make sure some of the smaller spots were also psoriasis or something else. She was prescribed (again) and told to take the fancy medication. She started to protest and was told by the assistant "Dr SuperSkin is the leading dermatologist in the southeast United States and was there when they were developing the drug. If he says you can take it, I suggest you take it." End of story.

They also told her she has to, every day, do what are called "wet wraps," where a salve is spread on the skin, then your body is wrapped in wet towels or wet pajamas. This has proven very effective for the itching, which is a godsend because with the thin blood the itching is normally the main cause of the bleeding, Mom-wise.

I found myself today after work at the folks' house. Dad had said at her latest bloodletting this afternoon at the hospital (you have to have constant blood tests to diagnose how much cumadin you need on any given day), she was told she was very deficient in protein. He asked if I could come up with something, and I told him I seldom do Orange Crapius anymore and Mom was welcome to all I had. I took it, along with some Crystal Light to mix it up in, and got there and showed Mom how to do it. The Crapius is pre-measured in a little packets, so it's really nothing more than mixing it in a liquid and drinking. I stayed there till she'd had a whole one. She said it tasted fairly decent. I'll be interested to see if that's the only one she'll ever drink.

They had not taken the medication, which they'd gotten today, nor done the wet wraps. They decided that because Mom's skin had bled today they shouldn't do the wet wraps. They were going to call the new doctor tomorrow and ask. I don't know what they're going to ask about the medication she didn't take, because they have no excuse for that one.

And that's really what all this is about, and what I can stop thinking about tonight. The fact that my mom, enabled by my dad, will not do anything she's supposed to do. I've said probably 500 times in the last 18 months, "Well, if it was me...."

But what if it was me? Would I do what I was supposed to?

I've been having quite the clash lately with my vitamins. I go in phases where I don't take any of the seven or eight different vitamins I'm supposed to take daily. I get tired of doling them out. I say I'm too busy. I forget. I know I feel better when I take them regularly, but I don't. Then I let it get to be a big deal and focus on it way too much and turn it into some herculean task like climbing a mountain. They're just vitamins. But I find myself fighting to take them.

Vitamins make me feel better, but they're certainly not central to my survival. If I was in Mom's position, would I find a way to make all that just as huge a task?

I don't know. All I know is that I want to scream at my mother not to complain if she won't do what she's supposed to, that I won't listen to her anymore.

But I'm her daughter. I can't do that. I'll listen anyway.

Betland's Olympic Update:
* Acrowinners, we have acrowinners! So, what did the butler see?
- Honorable Mention goes to LilyG, with her "Long operas and theatrical revues. Exciting!" Well, exciting's in the eye of the beholder, Lily.
- Runner-Up goes to Marla (marlamarlamarla), with her "Lisa Over At The Restaurant, Eating." I don't know why I kept giggling at that, but imagining it in a view machine was all it took.
- And this week's winner - it's winners! We have a tie, two I loved equally. They are Kellie (with an ie), with her "Last Oboeing Alligator Trilling Rather Effortlessly," (I want to know how an alligator can play the oboe without breaking the reed with his teeth - I guess that's why he was the last one), and the DeepFatFriar, with his "Leonard ogling a tasty raspberry eclair." Leonard, meet Lisa. Lisa, Leonard.
- Thanks to all who played, you've all done very well!!

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7 Comments:

Blogger Lily said...

Yes, you should take your vitamins, but you're right, it's not the same.

I don't know what to tell you -- it's not an easy situation. You can't control what other people do, you can only control what you do. The best I can think of is to inform them that you and your sister will stop being enablers yourself. I'd start with "My sister and I love you and worry about you. But we are done with taking time off work to take you to the best specialist in the country so you can ignore everything they tell you to do. If you don't start doing x an y [I'd start with taking the medicine and doing the wraps -- don't fight her on the smoking and some of the other stuff just yet] the next time you need to go to the hospital, you will do it in a public ambulance, Dad will have to take a taxi to get there, and we will not come to fix things. We won't come visit you in the hospital, fix dad his dinner, and [fill in all the stuff you do during these hospital spells]".

And then here's the hard part. When it happens, follow through with what you said. You'll either scare the crap out of them, or they just won't change. You'll have to get your sister on board though, because one thing that people in this position do is play one person off the other. We went through this with my grandmother.

One thing though -- the refusal to do a lot of this stuff also sounds like it could be related to the depression. Is she on meds for that? I suspect if she got treated for that, she may be more cooperative on the other. When you take her this week try to get a word in with Dr. SuperSkin (or call Dr. ITJLHH) on the side. If they're doctors worth their salt, they'll listen and try to treat her for that. I don't know how HIPAA affects this, but the doctors need to know and treat her for it. My grandmother also had the depression which caused her to be uncooperative and a cuss, but when she got on the anti-depressant meds she did a lot more for herself. Untreated, all they focus on is the anger and the "I can'ts" and "I won'ts".

I thought with coumadin, though, there were food restrictions, not food adds. I remembered greens as being off the table -- a vegetarian colleague of mine was on coumadin a few years back after he had a blood clot in his leg after flying, and I remember him not being able to eat a lot of certain kinds of vegetables (I'm pretty sure it was was greens) and he was PISSED.

Crappy times indeed.

3:02 AM  
Anonymous Anonymous said...

Hi Bet,
Take care of yourself, like the oxygen masks in the airplane. Put yours on first before helping the child with hers. Take your vitamins.

My in-laws have outside help. Can you and your sister enlist the help of someone to give you a break? Your Mom's back brace sounds like Nellie's. It's like a turtle shell.

Hang in there.
Mary

6:48 AM  
Blogger Marla Bronstein said...

First of all I agree with Mary. Take your vitamins (said the woman with the full pack in her purse that hasn't been touched in two weeks) and Second, I agree with Lily. Depression is a bitch.
And getting outside (read NOT famlly) to come in and help with compliance (does her insurance cover home health care, it's like a visiting LPN prescribed by the doc)
I so know exactly what you are going through, and I am so sorry for the pain you all are in. Our parents teach us by example don't they?
It's sort of comforting to me to know that my family is not unique. And frustrating at the same time that someone else hasn't figured it out so that I can swoop down and be the hero of my own family.
Hugs. Breathe. Take your vitamins and I'll take mine.

M

9:36 AM  
Blogger The Calico Quilter said...

I was wondering if the fancy psoriasis medication was the one you take by injection. My doctor suggested I try it and I was a little intimidated by the prospect (wimp that I am). I can imagine a sick 70-something might be too. There are other, more established methods for treating psoriasis that she might tolerate better. I know the docs like the latest-and-greatest, but you might talk to them. I take an oral medication once a week for psoriasis that's been around forever, and is well understood and safe if you do what you're told - primarily, not drink alcohol while you're taking it and get a blood test every two months or so to check your liver. Taking the little bitty pills is easy, and unless your mom is a phlebotomist's nightmare, I imagine that the liver monitoring tests wouldn't be a problem for her. Just a suggestion.

Definitely try to get a private minute with the doc and discuss the depression. If her outlook in general was brightened, she may be more compliant.

As for enabling, I got nothin'. It's hard to watch someone you love and not do as she wants, even if it isn't necessarily the best thing. I feel for you.

First thing of all, take care of yourself. You can't help others if you're all dragged down. Sorry everything is so awful.

Calico Quilter (Mrs. Duke)

1:31 PM  
Blogger Quantum Mechanic said...

I feel for you.

Thought on vitamins: when I was taking like 9 pills 3 times a day I got totally sick of them-one day, I smashed 'em up in a plastic bag and dumped them in my morning oatmeal. A little extra honey, and, hey! Not bad! Then I went to Edmund Scientific and bought myself a mortar and pestle and ground everything up and put it in a shake from Dairy Queen. Even better! I started crushing them up in daily doses, about two days at a time, and putting them in little poly bags so I could dump them in shakes at work.

I did much better at taking them, when they were married to a tasty treat!

Lily's advice is very cogent and wise. Everyone's advice has been good; remember we your friends are sending you positive energy as much as we can! Stay strong my sister!

7:28 PM  
Blogger stennie said...

Maybe it's time to get a home health care nurse for granny. Someone to just stop by once a day, make her take her pill, do her wet wrap, maybe take her vitals, etc. My mom used to do that kind of thing part time. I have no idea what it costs, but I don't think my Mom was paid much for it.

And I'm with Lily: you and your sister should join forces, sit your folks down for a "this is how it's gonna be" talk (what my ex-boss used to call the "Come to Jesus" talk), and the most important thing is, mean it.

One other suggestion: have you and your sister met privately with the doctor (either Dr. Superskin, or Dr. Italkjustlikehuckleberryhound) and asked them for advice? Just print out this blog and hand it to them, and ask "Look, what do we do?" They might be able to give you some pointers.

9:49 PM  
Anonymous Patrick said...

No advice, there's plenty up above. Just good thoughts.

4:37 PM  

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