Wednesday, February 27, 2008

Here's What Some Readers Are Saying

Here are some recent comments from fellow members of the "Sandwich Generation"...
    "My husband and I joke about his mother being a "professional patient". That seems to be ALL she ever talks about and ALL she ever does. I told her once two years ago - in a very loving way - that the reason most of her kids and grandkids don't come to visit is that when they do she tells them the same stories about her illnesses and doctor visits, and she got really mad at me. But I was to the point of having heard the same story day after day. I asked her, 'Mom, what do you talk about with your friends? '"
    "I have to chuckle every time I think of the name of the site, and of the name of your post, 'The Sandwich Generation'. It sounds as politically incorrect as my favorite word for sandwich, 'sammich'. I think it hits our generation perfectly though. Many of us are doing things we had no plans to do when we started full timing (fulltime RVing), things like spending the summer in one place other than where we really want to be just to take care of MOM. At least one other of my six siblings is involved and we don't have to do all the care. While it was not in our original plans, we are thankful we are in a position to care for her."

    " several posts ... makes me feel like maybe I am not alone in some things. Thanks again."

    "I attended a seminar regarding the 'Sandwich' generation twenty-one years ago. It was a 'heads-up' of what was to come. We were caught after retirement between the desire to travel - and caregiving my Mom. We made sure she lived to see her 100th birthday and consider the six years we devoted to her care to be six of the most 'growing' years in our lives."
Weigh in with YOUR thoughts/experiences - use the contact link on the left-hand sidebar! Share your story with us - we're all in this together!!!

Sunday, February 24, 2008

Some "Sandwiches" Are "Open-Faced"

My friend Dede has recently been thrust into an "open-faced sandwich situation." On February 5th, an EF-4 tornado hit the town of Clinton, Arkansas, where her mother and her 102-year-old grandmother reside. The tornado hit her mother's house. This is how my friend, who lives some 45 miles away in another town, described it:

"Mom was trapped by debris, but thankfully both came out with only a few bruises. The winds sucked Mom through the hall and to the back windows. Then the roof came down on top of her. She crawled out and to the front windows and started yelling for help. Almost every window in the house was blown out, and in some cases, the entired window is gone. There was glass everywhere, but neither Mom or Mammaw got cut, and didn't even have it [glass] in their clothes. God is Good!!!!!!!! Due to the weather, and no heat or lights, they had to put Mammaw in a nursing home (I don't think that she realizes it yet), but Mom is making it OK with that decision. One of the car dealerships in town gave Mom a car to drive - came to my aunt's house and handed over the keys for as long as she needs it.

I have never witnessed such and outpouring of kindess. I have heard from so many friends. They have called, come by and even left goodies at my door. The clean up is almost finished thanks to a lot of good folks. Angels I think. I am so blessed..we didn't lose a lot of things, but the devestation was something else. I will send pictures when I recover. It has been a long two days with atleast two more to go. Thank goodness that Jim is handling all the insurance stuff...I don't know what i would do if I didn't have a son that was so capable. Casey, my daughter-in-law, has kept me going. At times all I could do was just stand and be overwhelmed at the task at hand.

You just can't imagine how tough it is to see your home in shambles! Tornadoes do weird things. We have seen playing card drilled into the sheetrock. Sheetrock stuck between the brick and the house itself. I even found another card in one of the kitchen cabinets which were closed!!!!!! It is stuck in the wood at the top of the cabinet!

The first photo is of the living room - Dede said a table was sucked out the window, but the two chairs were not moved. The other photo is her mother's car, underneath debris... they have no idea where the carport is... it never was recovered.

In the weeks since, the house has been inventoried, Dede's mom and grandmother have moved in with an aunt, and the plan is to bulldoze the house, which was home to this family for more than 30 years. I don't know if they even know at this point whether Dede's mom will rebuild. I'm guessing she is about 80. So the challenge for my friend and her 28-year-old son is to help her mother AND grandmother with the recovery from this trauma and loss. Certainly this was something NO one could have anticipated. Our thoughts and prayers go out to this family and to the countless others across north-central Arkansas who suffered devastating losses and injuries in this killer storm.

Saturday, February 23, 2008

Home Again

My grandmother is finally at home again, after a 5-day stay in the hospital and a 2-week rehab visit to the nursing home. She met my husband and me at the front door yesterday, pretty well packed and ready to get out of the facility and back to her home. She was dreaming of a pot of brown beans, cornbread, and cooked cabbage! The therapy did its job - she is stronger now than she has been in months, and she looks fit as a fiddle - and probably closer to 85 than her actual 95 years!

In all, I would say this stay in the nursing home was relatively uneventful. The new ownership seems have made substantial improvements... the home seemed cleaner, more pleasantly decorated, and more accommodating. Of course, there were several employees there who knew my grandmother and loved her already, so I am sure she got lots of extra attention. One aide told me the day before my grandmother checked out, "the 'good' ones always leave." Several aides and nurses were genuinely sad to see her go, but they understood her desire to get home.

And home surely looked good to her! She went from room to room checking out her house and deemed it all good. She already had a date for the next day to play "Chicken Foot" dominoes at a friend's house with all of her contemporaries. I know they will be glad to see her, and it will be "game on" for her at the domino table!

Friday, February 8, 2008

"What Happened to Healing?"

Blogger Note: This information was related to me by a dear friend whose family has been a part of my life for all of my nearly 51 years. She gave me permission to share it here. Names have been removed.

Let me tell you the story of the tests Mother's been having. She discovered in the mid-90's that she had very low platelets. (In case you're unaware, that is what makes blood clot.) My sister (who is a nurse) tells me they should be 250,000--400,000; Mother's were about 50,000. She was preparing for cataract surgery and the pre-op blood work discovered this. The surgeon called off the surgery and insisted she see a hematologist. She did and they did a bone marrow test. At the time they thought it was likely a precursor to leukemia. They managed to get her platelets up and the surgeon finally did surgery on one cataract. Since then, he just doesn't want to do the other. (If you notice her having difficulty seeing, that is the reason.) He fears a slow bleed which would cause her to lose her vision.

In the following years, her platelet levels were checked and they just stayed low: 25,000 to 65,000. Her health, otherwise, was good. No signs of leukemia. She had surgery in 2000, I think. A local surgeon repaired 3 abdominal hernias. She received large doses of platelets before the surgery. Afterward, she had excessive internal bleeding and had to go back to the hospital for more platelets. The surgeon told her then that it was a good thing they had repaired all 3 hernias because he wouldn't be touching her with a scalpel again. So, time passed, her health remained stable, and her platelets stayed low. The doctor said she was not going to have leukemia. If that were the issue it would have manifested fairly soon after the original discovery. Mother's health has been so good, it was concluded that she could have been this way for many years and no one knew. There's no particular way to treat the condition. Platelets are rare and expensive. As long as she was healthy, it was just left alone.

My sister and I had always been concerned about a minor accident because of her "bleeding out." In early December, Mother fell outside her church and hit the concrete sidewalk. She suffered cuts, bruises, and two broken shoulders, among other things. The day she fell, once we were at the hospital, my sister, my niece (also a nurse) and I kept telling the nurses, "Her platelets are very low. Please check her blood. She could bleed to death, etc." That day they were 11,000. She was transported to a hospital in a nearby city, where they gave her platelets after she arrived. They gave her massive doses and got her up to 205,000 before the surgery. (One problem with platelets is that they only survive about 36 hours.) Mother came through fine and survived surgery to repair both shoulders (including a replacement of one!). She was transferred from the hospital to a nursing home, briefly, before we secured around-the-clock care for her at home, with lots of physical therapy.

During her recuperation, they have been checking her blood at least once a week. Last week I was in the family physician's office and he remarked that he wanted Mother to see a hematologist. The next thing I knew, my sister and the doctor had scheduled her for an ultra-sound on her spleen and liver and another bone marrow test. I was instantly against it. If there is no treatment, what is the point? An ultra-sound is not a bad experience, but a bone marrow test is quite painful and invasive. When I asked my sister why this was being done she said, "We just need to know where we are." Well, I thought that was stupid. We know where we are: Mother has low platelets, her health is fine and her energy level is as good as could be expected at 89. She could be checked for anemia and treat that if necessary. Why put her through all the rest?

Mother has 2 daughters telling her different things. I told her if she wanted to do this I was fine with it but I wouldn't do it for myself. I try very hard to respect the decision of a person regarding their own body even if I don't agree on the wisdom of the decision. Naturally, she listened to the daughter that was the nurse! On Sunday night Mother went to my niece's for a super-bowl party. Then on Monday, she went to the local hospital for the ultra-sound. Tuesday, she went to a nearby city for the bone marrow test. They didn't give her any anesthesia for whatever reasons. Probably relating to her age and/or body weight (very small lady). Don't know, I'm just guessing. At any rate, she told me it was the most painful experience of her life. She was literally crying by the time they finished. That, of course, pissed me off!

Yesterday, I had an appointment in another city and had planned to drop Mother off to visit our youngest sister. I asked her if she preferred to stay home. I knew she was tired and probably needed rest. She told me that if there was a car going to the town where my sister lives, she wanted to be in it. When I picked her up, I noticed her color was bad and she wasn't totally steady on her feet. She had declined noticeably since I last saw her 5 days ago. Once in the car, I looked over at her and she had a "droopy" look. Her head was down, shoulders slumped and eyes nearly closed. It worried me, but she was determined to see my sister. After we got home, I told her of my concern and suggested she get some serious rest.

Unfortunately, the rest of her week is busy, too. Today she is getting her hair done and has a conference with the hematologist at the hospital here to discuss the results of her tests. (Don't know what might come of that.) Then, tomorrow she has to go back to the city where she was hospitalized to see the orthopedist who did her surgery. That schedule would tire anyone. I don't think I could do all that in one week.

I'm irked because I feel all this decline is largely due to the tests they're doing. I still can see no reason for knowing "where we are." What are they going to do? The only thing I can see is to keep her from being anemic and that can be determined with a finger prick. I'm just angry with the whole medical community these days. I feel that doctors aren't so involved with healing as they are in doing procedures because they can. They have intellectual curiosity. Fine. I don't want my mother to be their guinea pig! The rest of their motivation for what they do is to avoid being sued. What happened to healing? I'm not saying there are no longer doctors who care about healing, but it often is secondary to other concerns.

I'm always cautious with "city" doctors because that's where the ones who go into medicine to make lots of money are to be found. Small town physicians are more likely concerned with the people they treat. There are fine, caring doctors in cities, but they look just like the greedy ones. It's not always easy to tell them apart. By the time you know, you've been "had." It's so sad to see medicine turned into a business. I think back to my grandfather, his brother and 3 sons (all physicians) and feel sad. They would be so unhappy to see where medicine has gone, yet they are the generation who let it happen. The medical profession wouldn't regulate itself and people reacted to poor treatment with law suits. It's bad enough to observe these things from a distance. Then when I see myself and the ones I love being the "victims" it stirs ire.

To finish my rant, I think doctors should learn how to let their patients die. They have gotten to the point that if a patient dies, they feel they have failed. Where did people get the notion that we're not supposed to die? That's part of our job. I understand treating illness and certainly see no problem with that. However, I told my physician that at this point in life, I don't want my life "saved." I just want to be treated to make life more pleasant and rewarding for as long as I'm here.

Wednesday, February 6, 2008

Nursing Home 101

My grandmother has been transferred to the nursing home for what will hopefully only be a few days of rehab. I never was able to connect with her doctor, so all of my information has come through a Patient Care liaison at the hospital. Apparently her doctor makes his rounds at 6:30 a.m., and the word at the nurses' desk is that if you aren't at the hospital by 7:30 a.m., you will not see him. I could call his office and try to talk with him, but at this point I am holding that in reserve. The Patient Care nurse has told me what he said via dictation, so I am not sure he would tell me more if we spoke. The bottom line is that he told my grandmother he wanted her to go to the nursing home for a few days and get therapy and do lots of walking and build her strength to go home again. I also needed to bring my grandmother's walker from home.

So, this morning the Patient Care nurse called me at 8:30 to tell me that today was the day to transfer to the nursing home... did I want a van to transport my grandmother? I told her that I did, and she phoned back almost immediately to say the van would pick Mam-ma up at the hospital at 11:00 a.m. I was at the nursing home around 10:30 a.m. to start filling out what I knew would be a mountain of paperwork. The admissions officer was very helpful and professional, and she made everything go smoothly. I left her office with a list of things she needed that I had not remembered (or realized) to bring - a copy of Mam-ma's Living Will, copies of her Medicare and Medicaid cards, a copy of my Durable Power of Attorney agreement, and a copy of her Social Security card.

For some reason my grandmother's van didn't arrive at the nursing home until 12:15 p.m., so by that time, we had inspected the room, I had ordered extra blankets for her bed, unpacked the clothing that my mom and I labeled and packed the day before in anticipation of this, and I had spoken with someone in maintenance about connecting her room television to the cable so it would work. The van driver assisted my grandmother in getting out of the van and wheeled her into the lobby with a "there you go," before returning to get another patient from the van. Since it was the lunch hour and most of the staff was busy in the cafeteria, I wheeled my grandmother to her room. She immediately needed to visit the bathroom, and I no sooner got her settled in bed (with a nurse's help) than she said she was sick. And sick she was! Apparently the van ride was too much for her. So nurses appeared from several directions with water, wet cloths, warm broth, and hugs, and by 2:30 p.m., she was resting. She does have a nasty rash that the doctor thinks resulted from the contrast dye they gave her for a CT-scan. She is taking Claritin and Benadryl for that, and hopefully it will work soon, because she is really scratching, and her face is very red and splotchy.

I know things are looking up because Mam-ma had me phone her hairdresser and ask her to come to the nursing home tomorrow and fix her hair! I teased her about wanting to look nice and told her that one of the forms I had to sign was to attest that she was not physically agressive and that she would not be sexually agressive. Her comment was, "Well darn!" Then she chuckled and said, "Oh well, most of the men I visited with when I was in the nursing home in 2004 are now dead anyway!" Somehow, I think she is going to be just fine in a few more days!!!

Sunday, February 3, 2008

Things Can Change in a Matter of Minutes!

Saturday my grandmother went to a women's ministry luncheon at her church. The day before, she had her hair done at the hairdresser's, and she had me go to the store and get her the ingredients to make a pie. Saturday night, she phoned several people and visited with them, and then at 9:30 p.m., she called my mother, too sick to even get to the front door to unlock it. She was vomiting and had diarrhea, and she said her left arm hurt. My mom called me and said, "I'm not sure what to do." I picked up Mom at her house and we went to my grandmother's to assess the situation. It was obvious she needed to go to the ER. She refused an ambulance - "they will want to put in an IV and they'll bruise my hands." Her veins are small, and she does have trouble if the IV is not inserted expertly. So we helped her put on sweat clothes on over her pajamas, zipped her into a coat, and I quickly made a "bed" in the back of my Jeep, folding down part of the back seat so she could lie down and Mom could sit beside her.

Blood work, a chest x-ray and 3 hours later, Mam-ma was still vomiting and having diahhrea, and the diagnosis was in... strep throat, extra fluid in one lung signalling the onset of pneumonia, a UTI (urinary tract infection) and gastroenteritis. She had no symptoms of the first three infections... several days ago her throat had been a little sore, and she often has a persistent cough, but nothing extraordinary... and she had no symptoms of the UTI. The doctor offered to do "whatever you wish," meaning he could send her home or ask her doctor to admit her. I told him we wanted her admitted. At 95 and living alone, she could not go home in that condition, and while we could stay with her, I felt she needed medical attention. He was more than agreeable to this scenario.

By 2:00 a.m., the nurses had Mam-ma settled into a room, all of the questions had been answered in triplicate, all of the forms were signed, and Mom and I left her to rest for what was left of the night.

Thankfully, after my post of a couple of days ago, I had taken my own advice and updated Mam-ma's lists of medications, important numbers, etc. After last night, I came home and updated again - adding a list of her surgeries; allergies; chronic problems like arthritis, a thyroid problem, some mini-strokes, frequent headaches, high blood pressure, etc.; and the fact that she has a pacemaker, takes an aspirin every day, and that her normal body temperature is 96.4 degrees. The nurses were impressed and thanked me for having that information on one concise sheet for them.

Once a few years ago when I had to take Mam-ma to the ER, she was not feeling well, of course, and the nurse had the typical litany of questions. When she got to the question "have you ever had any surgeries?" Mam-ma looked up and said, "Now honey, you've got all that S#*T in your computer, so just go look it up!" Last night, she had reminded me of this when we were waiting in the ER (although she conveniently left out her expletive!). So when the floor nurse asked Mam-ma if she had ever had any surgeries, Mom and I just looked at each other and started laughing. Then we had to explain to the nurse, who thought we were perturbed at so many questions. Once we shared the story, she understood and got a good laugh, too!

So now my grandmother is resting and getting rehydrated and treatedwith IV fluids and antibiotics. She seems to be over the nausea, but she still is having trouble with the diarrhea, so she is very weak. The nurse indicated she felt the doctor would keep Mam-ma there several days. I hope so.

Those of you who know me know that I am really "big" on having an advocate with you at the hospital. While I have felt really comfortable with the level of care Mam-ma is receiving, and each shift has brought us a nurse who had connections to our family and knew my grandmother well, there have been moments when an advocate was needed. After all of the vomiting, I was surprised to discover this morning that Mam-ma's breakfast tray was a "regular" tray with eggs and coffee and orange juice. She said the liquids tasted good, although I questioned the wisdom of such high-acid drinks for her at that stage. She got soup for lunch, but for dinner, her "regular, no-restrictions except salt" tray contained baked fish, broccoli/cauliflower/carrots, rice casserole, cole slaw, fruit cocktail and a roll! The nurse who delivered it said, "try to eat all you can." I questioned the wisdom of this menu for a woman who still has such severe diarrhea, and they showed me the orders on her chart... "regular" meal, with no restrictions other than "low-salt". I nicely but insistently asked if she could have something more bland, and the nurse did bring her more chicken-noodle soup, and she ate a few bites. The nurse agreed that a bland diet for a few days might be better, and she said she would pursue this, so I will check again when I return.

I left so that Mam-ma could rest, and hopefully she will sleep well tonight. I am still amazed at how she went from attending a luncheon at noon to being in the ER with three infections and such a serious "bug" less than 12 hours later. You just never know what will happen with a 95-year-old!

So my "lessons of the day" are:

  1. to reiterate the importance of having an up-to-date list of all medications and medical conditions, especially allergies, and to be familiar with medical history or have an accurate accounting of it on paper.
  2. to advocate for your loved one. You may feel like the "Queen B" but their well-being is the bottom line and the only thing that truly matters.
  3. remember to never let your guard down when dealing with seniors... things can change in a matter of minutes!

Monday Night Update
Mam-ma Polly is apparently better, because she is C-R-A-N-K-Y!!!! When I went in she had her finger in the air shaking it at this young blond girl with a fistful of papers saying, "What I really want is a piece of cornbread and a glass of buttermilk!" Turns out somehow Mam-ma got flagged as a "New" CHF (congestive heart failure) patient, and this girl was the dietician, there to go over a low-salt, low-fat diet for heart patients with her. The LPN came with Mam-ma's tray and she was distracted and the dietitian pointed to buttermilk on those pages and whispered, "let's not say this word out loud, but this is a no-no." I questioned why she was reviewing all of this and discovered the "flag" and I explained that Mam-ma was not a new CHF... that she has had CHF for years. We don't know how she got this on her chart. I told her Mam-ma has a cardiologist, a pacemaker, and the whole nine yards.

So, for supper they brought her a chicken breast on a bun with lettuce and purple onion rings, a tossed salad with cherry tomatoes and carrots, and french fries and more applesauce. The dietician immediately said, "don't eat those greasy french fries." Well, Mam-ma took one bite of the chicken and ate her applesauce, and that was that. The LPN brought her a Sprite. I went to the desk and talked to her RN and told her about the broccoli/cole slaw, and the ham at lunch, and that I had called the doctor's office, and the doctor's wife (who is the receptionist) was going to talk to the doctor about this, and I said, "Look, she has to have something to eat, and tonight she got blah, blah, blah (and named it all)," and her RN changed the orders to a bland diet. So Mam-ma will be mad at me tomorrow!*lol* Then the nurse showed me that they have not only got soups, but they also have peanut butter, crackers, puddings, and yogurt. Mam-ma agreed to some chocolate pudding, and she ate several bites but said she didn't want it. Did I mention she is cranky?!*lol*

The dietician was still at the desk, and I told her, "I don't mean to be rude, but she is 95, and I buy her a half-gallon of buttermilk nearly every week, and if she wants to drink buttermilk at this stage of the game, I am not telling her she can't!" She said she didn't blame me. She also told me her TV was "dark" and she couldn't see it. I tried to adjust it so that it would work for her and she could possibly watch "Wheel of Fortune." She said my cousins, Lori and Rick, had called and were coming back tonight, so that will give her some company.

Oh, and she said, after her pudding, "Now I have to go to the bathroom." I went to get a nurse, and when I got back, she was halfway out of bed. She said, "I didn't wait earlier today... that nurse came in and I told her I couldn't wait, so I just got myself up." I helped her up as the LPN appeared, and I told her Mam-ma couldn't wait, and she said, "That's fine... she's been moving around really well today, and as long as somebody is in here with her, that's fine." Well, I'm not sure somebody always IS in there, but I can't be there 24/7, so we will pray she doesn't fall. Maybe she will improve faster than we expect and avoid the whole nursing home scenario. Hey, I can dream, can't I?!

Saturday, February 2, 2008

Can You Relate?

Okay... show of hands... how many of you have a loved one who keeps their house so warm you feel like you will smother when you visit? As long as I can remember, my paternal grandparents have done this. My grandfather used to heat their home with a wood-burning stove. He filled it FULL of wood and cranked the thermostat up to full throttle. When Greg and I moved into that house, we would build a decent fire in the same stove, and we had to keep the thermostat at the lowest setting or we couldn't stay in the house - it would get too warm!

So, this is nothing new for my grandmother. But... her last two gas bills have been $191 and $204 respectively - for a 3BR/1BA house that is about 1200 square feet, if that! She told my mother that she "never touches the thermostat - it stays on 70 degrees." So yesterday when I ran errands for her, I said, "Let's look at the thermostat." It was set on 73 degrees, and the thermometer said it was fairly close to 73 degrees. I said, "Okay, so that's not right." She asked, "Do you think it's warmer in here than 73?" "Oh yes!" I replied, "I know it is warmer than that - the thermostat just isn't right." Mistake #1.

"Well, I need a new thermostat," my grandmother replied. "Actually," I told her, "you need a good thermometer so you can determine what the real temperature is." She agreed. I turned around to walk away and stared right into an indoor/outdoor thermometer on her living room wall. I pointed it out to her, and she said, "Well, what does it say?" It showed about 76 degrees, so I don't think that the thermometer was right either. My grandmother said, "Well, I never move that thermostat... except something is wrong... it won't come on at all unless I push it up to around 80 or a little higher, and then I put it back down on 73!" DUH!!! I told her, "Just keep doing what you are doing."

I pointed out that the bills will go back down in a month or so when it starts to warm into spring, and she can afford to keep her house as warm as she likes (although she has told at least two men in town she may not be able to pay her bills, and they have offered to help!). I long ago quit caring what she tells to who, so this neither surprised nor upset me. I have full confidence that many have heard how destitute she is and her family doesn't care ... neither claim could be farther from the truth.

I know I am not alone. My maternal grandmother used to pass the thermostat, and if she was hot, she turned on the AC. Later when she cooled off, she reset the heat and turned it up until she was warm again. She played "thermostat roulette" almost every day! I know that there are countless "hot houses" all over the country and people who are juggling high utility bills and loved ones who jiggle the thermostat. What about you? Have you checked your temperature today?