Dealing With HIPAA - Some Great Comments!

Folks, I am posting a compilation of comments I have received on HIPAA. What is HIPAA? I went to http://www.hipaa.state.ar.us/ and found some interesting information. This site explains that "In August of 1996, the Health Insurance Portability and Accountability Act (HIPAA) was enacted. HIPAA requires the development and implementation of standards for the exchange, storage and handling of certain health care administrative data, security measures and privacy protections."

Personally, I have not encountered any problems with this yet... possibly because I am on "the list" for my grandmother and can be given medical information. But a reader of this blog mentioned that she had several family members who assist her with caregiving when her mother has to be hospitalized, and she has found an easy way to ensure that these family members are all on "the list" of authorized persons for release of medical information. She writes: Do you get tired of adding names & numbers of all the family members that can get info on the "patient"? Thought I'd let you know what we have done. We chose a password. Something easy to remember. In our case we used the name of a family dog. When we are asked to list who medical information can be released to, we indicate that those with the password "??????" can get information. This has worked very well at the hospital and various doctors offices.

Another contributor added: "I'm not sure about the details of HIPPA when it comes to hospitalization but at my annual checkup the nurse did ask if they could leave information with whoever answered the phone or leave a message. HIPPA is a federal law, though how it is applied by various physicians and institutions could vary somewhat."

So, if you are experiencing challenges with this privacy act, perhaps the suggestion of a password will work for your situation.

While I am doing some "housekeeping and comment sharing," I would like to add the following... with a caveat that a reader has reminded me that some folks are actually a JOY to care for... ALL THE TIME, apparently. I know these situations exist, because I have met a few people who tell me, genuinely, that their loved ones are agreeable, always appreciative, and truly delightful to be around most, if not all of the time. This reader suggested: "This is an opportunity to learn much from your grandmother. Please take the time to learn some history from her and her stories (if she is willing to share them). Can you spare an hour when it isn't all about you and what you have to do for her but rather say "Grandma...I'd like to learn more about you." I'm suggesting this to temper any bitterness." I do this, and more. As a writer, I have chronicled stories. As a geneaologist, I have collected sayings, recipes, memories, photos and more over hours and days. I do still drop in on a "non-Thursday" for an occasional visit. We drive 30 miles to visit the cardiologist, and on the ride there and back, I get her to tell me about the places she lived and things she did as we pass by her "old stomping grounds."

Did this person strike a nerve? Maybe... and everything about my situation - and probably yours - is not all bad. But "everyone's shoes are different!" And I never know what the day will bring when I visit my grandmother. It's probably in part due to her advanced age, but some days talking about the past can be pleasant... others it stirs sad or angry memories and bitterness, and I'm sorry I even asked. My mother recalls a roommate of HER mother's in the nursing home whose daughter removed her, saying, "I could never leave my mother in a nursing home." Mom said it was akin to this woman stomping her with a high heel and grinding it in! Did this make my mom the "bad guy" for making the decision that the nursing home was the best place for my grandmother? (It did not, but some days you feel like the world is against you, wouldn't you agree?!)

So, here goes... reader responses... read 'em and see where you fit into this story!

"In our case, my wife and I, and my older brother and his wife do all that is done for my Mom, not just medical, but any help she needs. There are seven children in our family, but unless we call one and specifically ask them to do a certain thing, we get no help. Three of them will not even contribute money to help with the over 3 grand a year for her Medicare Supplement policy, and the others have to be reminded. Those three say they can not afford to help, but they all seem to have money to do what they want, and all can come eat up the food in Mom's house. One sister lives 2 states away so obviously can not be there to help, but the other four could be if they really wanted to.

I imagine their philosophy is that my older brother and I are retired, so we have nothing else to do. *LOL* I would bet money when Mom passes away all of them will be here very quickly with their hand out for anything they can get, and complain they did not get enough, and/or their share."

And this... "I really enjoy this blog. It is not only a place to educate, but an area to let off steam and complain if necessary, and to gather new ideas on how to handle problems. This area also makes you aware that you are not the only person going through stressful and difficult times with loved ones. There are no easy answers in situations such as we are going through, and one never knows if the decisions we make are the right ones are not. All we can do is our best. And I totally agree with what was written (above) about "family". They will complain that things should be handled in a different way, but they never are involved enough to see the real situation."

Have a great week, everybody... and hang in there!

Same Story - Different Chapters for This "Deli" Member

Jim, a fulltime RVer, shares his experiences. It's a good bet your experience is similar. Does your loved one tell you one thing and others another?! Please read on...

It is both refreshing and sad to know we are not alone in this. Our original plans for full timing were South in the winter, North in the summer, with a couple of months each year (spring and fall) with family to keep up on what was happening all around. Our "North for the summer" has now became Northern Arkansas for the last two summers, where we are playing parent to my almost 84-year-old Mom after a heart attack. She still lives by herself, but my older brother and his wife need a break, so we take the summers.

How much longer she will be able to live alone is anyone's guess, because she refuses to exercise. All her doctors say is get out and walk, it will relieve much of your back pain from arthritis and probably will make you feel much better all over. She says she does not like exercising, and is not going to do it. No less than two doctors have told her she will become an invalid if she continues to sit in her recliner and do nothing. She even hired a woman to come in once a month to clean her house from top to bottom, instead of doing a little each day and letting that be some exercise for her. We understand there are some tasks she needs help with, but she just doesn't want to do anything, except sit in a chair.

My brother is three and a half years my elder, and we are quite different in a lot of ways. I enjoy opening doors for ladies, and always do so for my darling wife, and Mom when she is with us. He does not, unless everyone is at the door at the same time, then he does the gentlemanly thing and holds the door. Because I open doors, and insist Mom wait for me to help her out of our one-ton four-wheel-drive truck, she thinks he also should do the same thing. Just this week, he took her to Wal-Mart. Her back was hurting so bad she could hardly walk, but she beat him to the door at Wal-Mart by a considerable distance, stood just outside the range or the automatic doors, waited until he caught up, and when he asked if something was wrong, she said "Well I waited for you, because I am so short these doors don't usually open right for me." My brother, being the card he is, told her to just walk on up to them, because what she lacked in height she had in width, which did not set well, even though it was said in fun. Mom is about four foot nothing, and weighs only about 130 lbs, but being that short she is by no means skinny. She also likes to hand us her check book and wants us to go pick something out for her and buy it, so she can sit on the bench up front and gab. We make her go get what she needs, of course we go with her, but it is exercise whether she wants it or not. *LOL*

She has complained to her doctors for about five or six years that she thinks she is getting diabetes, because as she puts it, my Dad had it before he died. My brother, doctors and Pnut and I have told her diabetes is a blood related disease, not something you get from being married to someone for 47 years. Well, now after five years of wanting diabetes, she has very mild diabetes, and is now taking pills for it. We have all explained it is mostly about carbs, not sugar, but she insists she only eats sugar free cookies and pies, so she can have all she wants. It is a never ending battle.

Her big deal for the last few years has been to tell her kids all different stories, trying to see which one gets the most attention and sympathy for her. Of course she still does not realize what she has told whom, and has no idea we all talk to each other. Her preference is for someone to come over daily and take her somewhere. She sees no problem with the price of gas - of course she has never driven a car nor bought a gallon of gas. She has one neighbor lady who has a car, and says she regularly gives her a dollar for gas when they go somewhere. WOW! - a whole dollar! She complains about having to pay 75 cents to ride the Seniors bus to Wal-Mart or any other place in town she desires to go.

I learned several years ago to listen, sort everything quickly and dump the impertinent info quickly out the other side. I smile and nod a lot when she is expounding on something for the umpteenth time, and remember that I too will be old and crabby some day (probably), if I live long enough. Six to eight months each year is still wonderful and we are seeing may places we have wanted to see for a long time. I never do, nor will I ever begrudge helping out with my Mom, and only wish my Hero and Father were still here to be with us also. He is not since he passed away from lung cancer and pneumonia in 1988, and that ship will never again be docking in this world.

For all of you out there that are giving assistance to family members, there is a special place in HEAVEN for you, because from looking around this world at present, there are very few who will take care of family, but simply farm them out to some nursing home and could care less how they are treated and who is looking after them, as long as they die quickly and leave everything for them to divide up and squander.

Response from a Fellow "Deli" Member

Hi Debbie,

What I would like to know is "are you following me?" I just finished reading your blog and it's something I could have written myself. I can relate from the toilet paper to the medication. We have been caregivers for Gary's folks until they passed, my best friend until she passed and my father until his passing. I've learned more medical information than I ever thought I would, including how to give shots, change IV's and take care of people that have had strokes.

Now we are assisting my Mom, who is 82, blind, going through heart failure, and has hypertrophic cardiomyopathy. When/if we hit the highway, our children and grandchildren each have a "chore" with Mom's care. We so want to get away but it's not an easy decision.

On top of that, we have a grandson that just turned 18. At age 16, he had to have part of a lung removed (middle right lobe) due to disease. And now, we've just learned it's back and in both lungs. Does it ever end?

Carol & Gary

Why I Dislike Thursdays!

Thursday is my day to do errands for my grandmother - she gets her hair done at the beauty salon. I pick up her prescriptions and get her groceries and anything else she needs done. Except for the times when she is under the weather, as she has been lately, I have pretty well reduced my time spent with her to this one day a week. A couple of years ago I was talking to her by phone every day and visiting her a couple to three times a week, and it was just not pleasant. It had gotten to the point where my husband voiced concern that I was going to end up with bitter feelings toward my grandmother... and that would, sadly, be how I remembered her.

I could say, "It's a beautiful day today," and she would wind the conversation around to a complaint or a comment that would escalate into an argument. I consulted my pastor as to how to regain my sanity and keep the peace, and his suggestion was to limit my time to one day a week. His contention was that there were plenty of people seeing after my grandmother - Home Health nurses and aides, neighbors and friends who visited often, and other family members. "Don't call every day," he said. "Limit your visits to the errand day and phone calls to once or twice a week. She will fill in the gaps if she wants or needs to talk to you."

So, I limit my visits to Thursdays, when possible, knowing full well that my grandmother tells everyone who will listen that "Debbie doesn't call or come by much, and she almost never has time to just sit and visit." Occasionally I will sit and visit on errand day, and lately, I have spent lots of extra time with my grandmother, taking care of many of her needs while she has been ill, dispensing her medications into the little daily pill boxes, filling out forms so she can get the check from the government to boost our economy! Until recently, the arguments - and opportunities for them - had greatly diminished.

Today, I spent my morning rushing from one task to another. I wanted to get some paperwork done at my desk. I needed to bake a meatloaf so we would have something to eat this weekend, as we are going to be busy, and meal prep time will be short. I wanted to make brownies to take to an old neighbor whose mother passed away. I needed to load several items into the car in preparation for my afternoon of errands in town. I needed to sneak in a walk for my health and sanity. Then it was time for lunch and a quick shower. Since my afternoon activities included attending a funeral, the shower/dressing took a little extra time. I still managed to make it all fit and be out the door by 1:10 p.m. My grandmother's hair appointment was 1:30, and I knew it would take about 10 minutes to get to her house, and another 5 or so to get her to the hairdresser's. There is no sense being early to a hairdresser, especially when you have been sick and are weak and tire easily. I figured 1:30 on the dot made perfect sense, especially today!

I arrived at my grandmother's house and opened the door, and there she stood. "Well," she said. "I wasn't sure you were coming." I asked why she thought that, and she looked at the clock, "It's 1:20," she announced. I told her that I always came about 1:20, and we were right on time. I gathered her grocery list and garage door opener, helped her down the steps and got her on her walker and out into my vehicle. We got in and started to buckle up, and she said, "Are you like my friend, Ruby... do you watch a story (soap opera)?" I told her no, and she said, "Well, I just wondered if that was why you don't like to come early - if maybe you were a watchin' a story." I told her I didn't have time for a "story," and I showed her my list. I said, "This is what I have to do this afternoon, and my list for this morning was just as long." That didn't faze her.

I got her to the hairdresser, who insisted we were NOT late... although I am not sure that registered with my grandmother either. On my grandmother's grocery list were "minute steaks." She had raved yesterday about some wonderful "minute steaks" she had put in the skillet and slo-cooked - they were delicious, she said. She told me my mother got them for her at Wal-Mart, and she described tenderized meat... a staple of my mother's table when I was a child. She said, "I want more of that!" So, I perused the meat counter at Wal-Mart and found two packages on sale and bought them both. As I drove her home from the beauty shop, I told her about the steaks. "They are pork, aren't they?" she asked. "Nooooooooo..." I answered, thinking that omigosh, here comes a bomb! "Minute steaks are beef!" Here it comes... "I don't eat beef!" she yelled. "I can't eat beef!" I told her it never occurred to me that her minute steaks were pork, and yes, I knew she doesn't eat beef, but she DOES eat a hamburger occasionally, and I just thought she must eat a very tender minute steak occasionally, too! Besides, I mistakenly perused the pork case first, and there weren't any minute steaks, and that's when I realized that - DUH - minute steaks were BEEF - and I found them in the beef case!

My grandmother said, "Well, minute steaks ARE pork. That's what I eat. I don't eat beef!" I told her I knew that, and I realized now that she meant pork. But honestly, they didn't have any pork steaks. "Yes they do!" she retorted. "No, I promise... I looked!" I told her. "Well I know they do!" she argued. I told her, "Mam-ma, they just might have been OUT of pork steaks today!" "Well, whatever," she said. "Just take those beef steaks home with you and eat them. They're paid for." I told her I would. "Just take 'em home. They're paid for!" I told her that was fine... I would take them. "Well, they're paid for!" she said again..."you may as well take 'em!" I said, "Okay, Mam-ma, I will take the steaks home." Later she said, "Now if you don't want to take those steaks today, just put them in my freezer!" I told her "No... I am taking the steaks!"

So, I got my grandmother home from the hairdresser and returned to the pharmacy for her medicine, and to another grocery store for PORK minute steaks! I finished my errands and attended the funeral, and then returned to her house yet again to dispense her medications into the little boxes. She "helped" me by watching me and talking while I was trying to dole out the pills. Instead of halving the heart medication, I halved one of her blood pressure pills and had to go back and put two halves in each compartment! She never will understand that one... and I finally had to tell her, "I messed up." I wanted to add... "because you were talking to me and watching over my shoulder!" But I held my tongue - for once!

I don't want it to be this way. Each Thursday, I pray that God will give me peace of mind and kindness of heart and tongue... and that we will have a good time together. So far, I am batting pretty poorly. I know there are lessons to be learned here... I'm just not sure what they are! I know I am not the only one going through this...and if you are on the same path... welcome! If there is truly safety in numbers, we oughta be just fine!

We're All in the Same Boat - and I Think It's Leaking!

My cousin and I have been trying to get together for a one-hour lunch for about 3 weeks now. Something always comes up. We had rescheduled again for yesterday morning at 11:00 - her lunch break from teaching kindergarten at the local elementary school. I was having coffee and catching up on my morning writing assignments when the phone range. It was the local health department, relaying a message that my grandmother was having an "episode" and the aide was concerned and thought I should call her doctor.

To make a very long story short, she had what the doctor called a "vagal response" while using the bathroom, meaning she got weak, sweaty, short of breath, and felt faint. It subsided as soon as she got back into bed. His ultimate prescription was for her to take FiberCon twice a day. She had a terrible time understanding how a laxative was going to help with diarrhea, but I was finally able to talk to a nurse and get an explanation we both understood. Apparently this is a "bulk fiber" that will absorb excess liquid and hopefully correct her situation.

Determined not to miss my lunch date, I threw on clothes and hurried to the store to try and find the prescribed fiber. I couldn't find FiberCon in a form my grandmother could handle - she doesn't do well with tablets, but I consulted with the on-duty pharmacists and selected a suitable substitute. With the bulk laxative purchased, and my grandmother settled, I told her I had a lunch appointment with my cousin and that I had to leave - I could return later, but for now, I had to go. Her response was a very snippy, "Go on... don't keep Natalie waiting!" The good news is that she seems better today and the bulk fiber must be working... her attitude was better and she seems to genuinely be improving.

Meanwhile, my cousin, who is 33 years young, has her own little "Deli" going. She is the mother to 4½-year-old Olivia. She has a great aunt who is 86 or 87 and very much like a grandmother figure to her. This aunt, whom the family calls Eazey, loves to walk around her yard, but for a variety of reasons, she doesn't get outdoors much any more without accompaniment. Natalie and Olivia go every Wednesday afternoon after school to see Eazey.

Recently, Natalie and Olivia were visiting Eazey one Wednesday, and they were walking in the yard, looking at flowers. Eazey lives adjacent to the local Wal-Mart parking lot, so Natalie said, "I'm going to run over and get a rotisserie chicken for dinner. You two stay in the yard and I will be right back." When she returned, Olivia immediately said, "Eazey fell!" Eazey tried to downplay the event, but did say she tripped over a tree branch that had fallen in the yard. She acted very irritated and embarrassed, and she insisted she was not hurt. When Natalie and Olivia got into the car to go home, Natalie said, "Olivia, what happened?" Olivia replied, "Well, Eazey tripped over a tree branch and fell, and I said, 'do you want me to call the police?' and she said, 'No! And don't you tell your mother, either!'"

How many of us have been there? How many times do you suppose those in our care have fallen or had a mishap and told others "not to tell"! I told Natalie that she was "smack dab in the middle of the Deli" and "welcome to the club!" Needless to say, we had plenty to discuss over lunch, and the hour flew much too quickly!

Adventures in Shopping

The last two weeks have not been good ones for my grandmother. She has not felt well at all since her trip to the ER on Easter Sunday. Her blood pressure continues to be all over the map, with first the top number, and then the bottom one well above normal range. Her stomach has been upset, she hasn't eaten well, and she is down a couple of pounds, which is a lot on her small frame. We have been back to see her doctor, but he really hasn't told us much, other than what turned out to be a very costly jug of urine was clear of any infection or unusual activity. He drew blood and gave her an extra vitamin B-12 shot to help boost her energy level, and we are to return in three weeks. That is probably a waste of time, but it makes my grandmother happy for the doctor to pat her hand, and at this stage, it is easier to take her than to argue.

So... about the shopping. For Christmas, my family gave my grandmother toilet tissue - bags and bags of it. What started as a gag a few Christmases ago when my grandmother announced that all she wanted was toilet tissue has turned into an annual tradition of showering her with Charmin - specifically the 2-ply! Last year, she didn't run out of T.P. until sometime in late September, so we vowed to get her through a whole year this time. Yesterday, she told me she needed toilet paper from the store! I questioned her, and she insisted that all of her stomach troubles of late have exhausted her supply already. I looked in one closet, but not all of them, but I have to believe she has forgotten a "stash" somewhere. However, I bought more toilet paper for her!

Coffee was also on the list. A 13-oz. container was over $5. The 26-oz. container was just over $8, so I bought the larger container. She had a fit and a half! "Why on earth did you buy this big container?" I explained the savings of $2 to one of the most frugal persons on the planet, and she said, "But you just don't understand that I can't handle that big container." I calmly explained to her that it was no problem - I could fill her little container with coffee and freeze the rest - and the next time I am at her house I can refill the small container. That seemed to satisfy her for the moment. However, I did NOT make a special trip to another grocery store to buy "Cold Water Wash" for $1. She told me Woolite is a whopping $1.80, and she will send her friend to another store to buy "Cold Water Wash" and save the eighty cents. She says it works just as well as Woolite. And she wonders why I as trying to save her $2 on coffee!

It has been almost a month since I began dispensing my grandmother's medications into little daily boxes according to her morning, noon, and night dosages. We will run out of ONE medication late next week. For several years now, I have made a weekly trip to the pharmacy for at least one of my grandmother's prescriptions. For the life of me, I can't figure out where all of the medicine has been going, because I have not been to the pharmacy in three or four weeks now! Did she take too much? Was she stockpiling it? Was she sharing with someone else? We will never know, but for now, I'm monitoring the medication, dispensing the daily doses, and ordering the refills. Hopefully she is not adding or subtracting from the daily dosages too much.

I feel like I am seeing the beginning of a true decline in my grandmother. For now, she is not experiencing a quality life. She doesn't feel like cooking - a good thing from a safety standpoint, but a real disappointment for a woman who loves to cook. She has hobbled out into her yard a couple of times with the aid of her walker, but she can't do anything with her flowers, fill a bird feeder, or even pick up a stray limb, and for her, this is maddening. She doesn't feel like reading or spending time with friends. I bought fabric for her to make baby blankets for two new twin nieces, but it is still in the drawer. She is often confused and forgetful, and she spends a lot of time lying on the couch. I am hoping this improves, but I have reserved optimism. She is, after all, 95 years old, and the stress and strain of the viruses and hospital/nursing home stay in February may be taking their toll. Meanwhile, I'm on the lookout for a closet full of Charmin 2-ply!