Sunday, May 17, 2015

Barbara, a friend from market, is a registered nurse and a nurse instructor. She is also a caregiver. Her father lives with her, but he’s currently in rehab, and she has been visiting him daily. During one visit, she was overheard talking loudly to him. The man won’t wear his hearing aid, and Barb was getting exasperated with him. So she repeated and repeated. Apparently, the social worker overheard her and reported her to the state. Barb is now considered “unfit for personal care.” So Barb looked up the charge and found that it was based upon speaking to a patient with “intent to belittle.” I am sure she and her dad have had go-rounds with some frequency. This was but one of them. And I am also sure she did not intend to belittle him. I have seen her with her dad, and he looked pretty contented and happy to me. Such reports, made so easily and so carelessly, can result in serious damage. The social worker suggested putting the man in a home, which Barb cannot afford. Besides, since she is a nurse, she prefers to and wants to care for him herself. When the state gets involved, things get dicey. Perhaps good is intended, but the consequences are often not very good. In this case, I worry.

Still, Barb’s predicament gives me pause. I am doing my best not to say anything to belittle my mother. It’s one thing to correct her as you would a child, but another to make her feel bad about something. And there are times you lose it—as you might with your own child, your spouse, other family members, your friends. But the difference in the case with the elderly relates to the short time they have left on earth. Make the most of the moments left. It will be easier and more pleasant for you, as it will be for the person for whom you provide care. The kindness you extend to another can be a balm for your own soul.

Thursday, May 14, 2015 

Worked till 7:00 pm and came home to find Rob in a foul mood. Mom wouldn’t eat, and he had gone out of his way to buy sweet potatoes and other veggies for her. He was mowing the grass when I came home and said he was “fed up with this house”! I found mom in the kitchen, warmed up her untouched plate and made her eat to protestation after protestation.

I already ate.

No you didn’t.

Yes, I did, and I can’t eat any more. I’m too full.

What did you eat?

I don’t remember.

That‘s because the last thing you ate was cereal at breakfast.

No. I swear.

Eat! 

I practically fed her and she ate. Afterward, mom decided to sit in the kitchen while I did the dishes.

Put that light out. Why do you need so many lights?

I like to see what I’m doing. That’s why I had all the lights installed.

Where’s Rob? I haven’t seen him.

Well, he just tried to give you supper?

No he didn’t.

Yes he did. 

Rob entered the room and spoke with mom, then he left to continue mowing the lawn.

Where’s Rob? I haven’t seen him all day.

He just left the room, mom. You just spoke with him.

Oh. 

Multiply these conversations by 10 or 20, particularly when you have had little sleep. Some days are just more difficult than others.

Wednesday, May 13, 2015 

Mom couldn’t find her way to the bathroom. So Valentino paced until I awoke. Rob was already with her. All are back in bed now, except me. Might as well stay up; it’s already 5:00 am. Can’t sleep. Too bad. Should be an otherwise lovely day. Always a little challenging when I begin the day exhausted. The brief heatwave is over and spring has returned. Pollen is still very high. Windowsills have been green with each wiping.

Mom is becoming more childlike as each day passes. She whimpers a lot. Can’t find her way back to her room. Refuses to do the simplest thing, such as pulling up her diaper. Well, why bother. It’s been a very long life for her. She’s worn out and this part of life isn’t much fun. She knows no one, remembers nothing, has little strength, can barely walk on her own, and has nothing to look forward to, except watching more of Family Feud. Still, I am brought back to the movie Quartet. There is always hope for something, if you can remember it long enough.

For me, I hope it will be music. I am enjoying listening to and playing some of the music I have always loved. Even bought some Music Minus One—Handel and Dvorak to start. The piano parts are missing on the CD, and I get to play with the invisible performers. If you can’t bring the musicians to the house, bring the music!

Monday, May 11, 2015 

Have not much felt like writing for a while. The routine is sometimes mind-numbing, but to make up for it, I have been spending more time in the garden and laid the last of the mulch just yesterday. After pulling out some shrubs that didn’t make it through the grueling winter, I decided to stick with hardier plants. So I ordered and planted 13 hosta varieties, some of which will grow quite large. Reluctantly going to replace my Little Henry Itea, which has not done too well in the past two years. The shrub was a tip to my Trenton garden, where I first planted one. Also thinking about cutting down the now too tall horse chestnut. But I am terribly reluctant and very sad even contemplating taking down a healthy tree. It was a designer’s mistake. Five years ago, the arborists hauled it in when they couldn’t find the sourwood tree I really wanted. Too sad to contemplate. I tried giving the tree to our current arborist, but he claimed it was too big to take. He had at one time intended to plant it on his own extensive property. Never happened. Sigh!

Went out Saturday evening with Deb and Rich for a nice meal nearby. Rob called to tell me that mom was “on the pot” and calling for me to wipe her—a first indeed. As I could not make it home lickety-split, Rob called Betty, the ever stalwart Betty. Betty ran down and took care of the problem. First time mom did not try cleaning herself on her own. You just never know what will happen. Your time is certainly never your own when you have an elderly person in the home.

Mom’s leg has finally healed; however, in playing nurse, I almost created another problem. When she complained of knee pain, I put one of my loose-fitting bamboo sleeves on her knee. She claimed the knee felt better and then would not allow me to take it off at night: “The doctor said I have to wear it all the time.” Of course, I was the doctor. Not long afterward, her feet became badly swollen. But as mom was scheduled for a trip to the podiatrist, I wasn’t too worried. Our podiatrist put a compression stocking on her foot, but by the time we got home, her foot was even worse. So I removed all compression and the problem disappeared. Think you’re fixing one area, but you might be creating a problem elsewhere on the aging body, particularly in one with very poor circulation to begin with. Lesson learned.

Today, we are off to the GP. Mom is spotting blood. Might have another bladder infection. So off we go. I was going to head down to Lancaster for some errands. Not today. Maybe I can find some solace later while watering the newly planted plants.

April 6, 2015 

I didn’t sleep well last night. Valentino is slated for the groomer at 0800 and I was worried about getting him to do his business before the police cited us for not having a license. I completely forgot to do this, and there was a piece in the newspaper warning that fines would amount to $300 per dog. After Val barked at the first passing truck—not many pass this way; must have been the UPS man—I decided to get him up and out. We walked hurriedly around the block. I then planned to feed him as soon as we got back, even though it was an hour earlier than usual. While I was preparing his breakfast, I knocked off the refrigerator trim at the bottom. So I decided to wash it and do a little cleaning.

As I got the trim back on, mom called. She is still in great pain. It’s usually worse in the morning and it seemed pretty bad this morning. We have been giving her Tylenol for what the PA says is “arthritis.” I told Rob that I think too many PAs and MDs go into medicine to pontificate because they can’t do anything else. I used to have a great deal more respect for those in the medical profession than I do now. This is a function, of course, of hearing the most ridiculous diagnoses in the world! And I will grant you that diagnosing is difficult. (I’ve seen enough “House” and read enough medical articles to know at least this much!) At this stage of the game, I would prefer to hear an “I don’t know!” Consider Nancy’s plight. One doctor seemed to think Eric’s problem stemmed from some sort of osteomalacia of the brain, a kind of pre-Alzheimer’s. He noted areas of heavy plaque. No other physician mentioned this or commented on the MRI images that prompted this statement. But from what I have read, osteomalacia of the brain is associated with a mesenchymal tumor (often confused with meningioma) that would secrete fibroblast growth factor, which I assume could be assayed. But then what do I know, except what I read. (Trust me, I have sent articles to doctors!)

As for mom, she remains in terrible pain mostly in the morning when she is most stiff. I still think she might have pulled something. Problem is: where do I find someone capable of telling me that mom’s new problem is something more than a long-existing arthritic condition. I hate to see my mother cry, and she has been doing it regularly. After I drop Val off at the groomer and pick up the dog license and dig for his rabies tag, I will take mom to the ER. I have work to do today, but it will have to take a backseat to getting to the bottom of mom’s pain.

April 5, 2015 

Lila is home and recuperating. Her son is ill though and has been sleeping quite a bit. I suspect the drama of last week and the tension was too much for him. But he will be fine.

Mom is now watching television in her new wheelchair. She likes sitting in the wheelchair because I purchased a thick gel cushion for it, which she finds very comfortable. Mom can still walk, but not without pain. I suspect she pulled a muscle, as she is fine while sitting and can even cross her legs. She cried several times this week, breaking my heart. The PA says it’s arthritis, but I think the PA is nuts! (A bit of a paraphrase from “Miracle on 34th Street”) Anyhow, it’s Easter Sunday. I just butterflied and grilled a wonderful chicken from Donna’s farm, and I am now heating up a blueberry pie from Simply Delicious. Mom is happy and full.

I am still exhausted from my extended hours at the winery this week and all that I have had to do since, including edit Jake’s book (10 years in the making and finally a publisher). Today being the first Sunday of the month, I held my monthly prayer service at Hearthstone. I didn’t expect many residents to be present, as I knew family would be visiting or have taken them home for the holiday. There are so many at Hearthstone who should be living with family still, but who am I to judge. Mom could not stay here without Rob’s blessed presence. We cannot leave her alone, ever. In fact, I think she might have hurt her leg when Rob went out to the yard and mom went looking for him. Mom had been agitated when she returned home from respite care and was probably afraid of being left alone. She was crying when he returned to the kitchen. Who can know what happened to her in that space of time?

Nancy and I have been talking about our parallel experiences: hers with Eric and his strokes and mine with mom and her problems and aging in general. We are both exhausted but so glad that we can tend to those whom we love. Fortunately, our circumstances allow us the latitude to keep our family members at home.

Mom’s feet are becoming more swollen and blue. Because of her serious reaction to the antibiotics, her skin is also peeling terribly. So I rubbed some coconut oil onto her feet and face. For the first time in her life, mom’s face was beginning to look wrinkled. She was delighted to see the dry skin disappear. Coconut oil to the rescue once again!

Well, off to clean the grill and see to the blueberry pie. End of a wonderful day, all in all. Church service, seeing Barb and Jerry and getting a big hug from Michele; the Hearthstone service and meeting a daughter of one resident (another Barb) who lives in NJ and chatting about the traffic there and our life out here in PA; our chicken dinner; my several phone calls to Nancy and finding her uplifted… We were all so uplifted, but then the Resurrection tends to have that effect on people! Our hearts are full! The Lord is Risen indeed, Alleluia!

Sunday, March 29, 2015 

Mom is watching television while sitting in her new wheelchair. We have been using it to give her leg time to heal. And I think it’s working quite well, except that we are creating a monster. A lazy monster, who seeks to be wheeled around wherever she goes. Still, pain is pain. I have wrapped her leg in a bamboo wrap. Bought it for myself some time ago, but it didn’t seem to do any good. Packed it away and lost it for a while, but fortunately found it again. And it seems to be doing mom some good. She won’t be without it.

And then there is Lila, my “other” patient. She is now suffering with abscesses on her gums and is feverish. Her teeth are in horrible shape. Last night, I was able to get a liquid antibiotic for her by calling her PA. But I fear it’s too little too late. The CNAs did not notice before this episode that her gums were swollen and red and blistery. As Lila is demented and cannot express herself normally, no one knew. It was the fever that served as notice. Our worry is also with her son, who would take her passing so very hard, even though she is nearly 98 years old. Our only recourse is prayer. Sooner or later, Lila—like the rest of us—will succumb. The overall feeling is one of imminent loss and grave sadness. The CNAs and I have all been with Lila for more than 3 years now. She is family, as is her son. This being Holy Week, I have no idea what will happen. The winery has us on for 3 days with extra hours, but I will do my best before then. I doubt, at any rate, whether her oral surgeons will take her now in her current condition and age. They last saw her 2 years ago, but she was in better shape then. The ER is the only other recourse, but then we face the probability of nosocomial infection or worse. If Lila dies in the hospital, her son will consider it the highest betrayal.

Mom, Lila, the CNAs, her son… Much to pray for this week and ever.

Thursday, March 5: Snow today. Green Hills nurse was slated to come visit and evaluate mom for her stay. Evaluation moved to Friday.

Friday, March 6: Visit to her doctor. The straight catheterization at the hospital resulted in a nosocomial infection. Mom was put on sulfamethoxazole. I grew worried that the sulfa drug was not strong enough and called the EMTs to bring mom back to the hospital. She was dismissed shortly after our arrival and the doctor assured me that she would be fine. I was hoping for an IV antibiotic to push her recovery.

Saturday, March 7: Rob and I dropped mom off at a local assisted-living facility.

Sunday, March 8: Rob dropped me off at Carol’s house, where her son and daughter-in-law drove us all to Newark Airport for a week in Kauai.

Thursday, March 13: Mom falls on her back and hits her head at the nursing home. No cuts, just abrasions and a sore back. They have her taken to St. Joe’s. I receive notification from mom’s hospital doctor. Barbara, my neighbor and an LPN, is horrified upon seeing mom, who has also had a horrible reaction to the sulfa drug. Her skin reportedly was bright red and swollen. The nursing home should have been more concerned about mom’s drug reaction than about her fall. I remained in touch with the doctor, nurses, Rob, and Barbara until I returned home.

Monday, March 16: Home at long last. Mom is thoroughly confused and exhausted. Rob and I agree that we provide the best care right here at home. No more respite care for mom or us any more.

Hospital orders tell us to be sure mom gets 6 to 8 glasses of water per day. We’re lucky if she sips 2 ounces per day. We try juices, but even then, she quickly has her fill. No way to flush the toxins from her system otherwise, but we try. But now, there is another problem. Mom has somehow hurt her right leg. We assume this is a result of the fall in the nursing home.

Tuesday, March 17: We let mom sleep until 1:00 pm. The experience exhausted her and us. She ate breakfast as usual and went back to bed early afternoon. At least at home, no one will awaken her to take her blood pressure.

Wednesday, March 18: Mom is up at a decent hour. I showered her and led her to the kitchen for breakfast, where she asked Rob repeatedly what time he got up and if I were up yet. I am particularly grateful for the shower seat that Deb gave me. Mom can at least sit while I bathe her—a blessing indeed. She looks better and smells better. She is slowly feeling better, all but for her right leg. Mom appears to be in great pain when she walks. Hairline fracture?

Thursday, March 19: Appointment with mom’s GP. The PA declares her fit and fine and just “having trouble with arthritis.” Meanwhile, mom moans and groans while we practically carry her to the kitchen, the bathroom, and back to her room. She cannot maneuver her leg onto the bed without help.

Monday, March 23: I have a script for an x-ray of mom’s hip. I am betting (hoping) now, however, that she has pulled something. Mom is fine and in no pain while she is sitting and even crosses her leg (left over right). The pain is not subsiding and mom cries when she walks. Unfortunately, the halls of this house are far too narrow to accommodate a wheelchair, but we can try a walker with a seat. I will pick one up this afternoon, if I can get a script.

Tuesday, March 3, 2015

 

On Sunday, mom complained of feeling ill, nauseated to be exact. She also indicated some chest pain, which is nothing to fool around with. So I called Barb, who came over immediately to minister to mom while I dealt with the EMTs. Mom becomes frightened easily when she is not feeling well and reacts rather dramatically. She did vomit and she did hold her chest, which I suspect was put to the test with her vomiting.

The EMTs were wonderful and adept at driving on ice and snow. I rode in front with the female driver who claimed to love snow so much, she wants to move to Alaska. I knew I would have to spend the night at the hospital as no one would go out on such a night to pick me up. I was prepared with a book (one of Jon Katz’s dog books), my filtered water, and my phone. Mom felt much better when we arrived at the hospital and demanded to go home. Nonetheless, we stayed in the ER until around 3:30 am, when we were finally given a room. Everyone was extremely solicitous, even at that hour. No sour face in the place. In the ER, I was offered a recliner, as I was in the room on the second floor. I decided, however, to sleep on a bench by the window and had a mild sense of how it might be to be homeless. The major difference being that I was sheltered and I was warm. (I slept in my parka.) I thought of my uncle who slept on the floor of a hotel in Tokyo among strangers during the last major earthquake. Now that must truly have been trying.

Mom was fine. She slept through most of the night, except when she was wheeled down to imaging for a CT scan or an ultrasound. All in all, she is fine. Mitral valve prolapse was the most significant finding, but not much can be done about that at her age. I understood from her exceptional nurse Kate that she was quite comfortable and was made to sit out by the nurses’ station, where she had company and where the nurses could keep an eye on her. Today, she was sitting out there, reading a magazine and talking to whoever walked by. Mom said she had a wonderful time and would be happy to come back.

Later in the car, she asked what I did during the holiday. When I asked which holiday, she responded as follows:

I know

You know what, mom?

Well, we did too.

Mom, what are you talking about? Which holiday?

It’s cold out.

Which holiday are you talking about, mom?

Did you go out? Be careful it’s cold.

Mom, you asked which holiday.

Oh

Which holiday? Christmas?

Oh yeah

Well, you were with me on Christmas Eve and Christmas Day.

Oh yeah. It’s so cold out.

 

Mom is back in the kitchen and fretting about the “cat.” He must be cold. I feel sorry for him.

Don’t worry about the cat, mom. He doesn’t even exist.

Who owns him?

This, I could truthfully answer: No one, mom.

Oh 

We are back in full swing. Mom is concerned about the cat (who doesn’t exit), her shoes (which she left at home), her cane (which she never uses), and the lights (which are too expensive to run and should be turned off—or “turned out” as she puts it).

Mom is back. Valentino is subdued. All is well with the world and mom had a wonderful time.

 

Thursday, February 26, 2015 

It’s 5:00 am. Just finished poop patrol. Have thrown the soiled diaper bag down the basement along with the soiled slipper socks. Been struggling with sending mom to an assisted-living facility while I am away. But I see clearly that I have no choice. No amount of daycare will spare Rob the morning mess or the morning calls. Mom has already called me at the top of her considerable lungs twice this morning. The first time to assist with her bowel movement, the second to find her toothbrush, which was on her night table all along. I gave mom a shower douche and cleaned the bathroom floor, toilet, sink, and tub. Will go down the basement is dispose of the diaper bag. Her slipper socks are already in the sink for washing.

I am sure Rob is awake, but I know he will fall back asleep again. He is late to going to bed and sometimes also a late riser. I hope he can get back to sleep.

As for me, I was impatient this morning. I have so little patience when mom delves into the diaper to inspect it with her usual How did that happen? Yesterday, I explained that because she is 98 years old, she no longer feels anything “down there.” Today, I lost my battle for patience. Dealing with poop and heavy detergents will do that at this hour. Well, perhaps that’s my excuse du matin. So be it. I am going back upstairs for an hour before I go off to work.