A Week in the Life of an Elder Caretaker

To say the last 15 months have been difficult for my mother and the rest of the family is a gross understatement. I can’t think of anything more difficult than having to watch someone you love suffer in tremendous pain. It’s like being in one of those war movies where you are forced to watch the enemy torture and kill your best bud right in front of you.

Since August 2014, my mother has suffered with a fall, a concussion, a slashed forehead requiring stiches, a broken 5th metacarpal bone in her right hand, a partial cast that pained hand arthritis, worsening arthritis in her back, psoariatic arthritis, tooth infections that were escalated by an autoimmune drug she had been taking, dental surgery, nausea to the point where she can’t eat, physical therapy, MRIs, cat scans, XRAYS, multiple bouts of sciatica, and finally spasms that rocked her entire left leg, leaving her in excruciating pain.

We took her to the ER. That was a fucking nightmare. What she went through deserves mountains of expletives for the simple reason that a trauma occupied every single doctor for hours while my mother screamed in pain. For hours. Multiple times, I was a sobbing mess. At one point, I lost my cool and screamed into the ER for someone to please help my mother. Nope. No doctor. No pain management. All you other non-life threatening people problems can just sit and suffer. I’ve never heard of anything so atrocious. Last night, I felt an anxiety attack coming on so I took half a pill I got from my primary care. Five minutes later, I was sobbing.

Once my mom was admitted, the care was a billion times better. Four days on, she’s doing much better. My mom’s taking antispasmatics and pain meds. PT has come by and done some stretching. She’s had two MRIs, a sonogram, and an echocardiogram. From what we know so far, tightness in her hip and pelvic area is at a max and throwing her body out of alignment. She looks better even though she still has some pain. Tomorrow, she’ll probably be discharged with meds, an RX for PT, and a plan to get her out of pain. None of us know whether some of the back pains she’s been having were because of the tightening in the hip and groin that seem to have her body in a grip. We’ll see.

I moved back to my hometown a couple of years ago so we could be there for my mom when she needs us. I haven’t regretted the move for a second. I only wish she could be in less pain. Here’s to hoping that she’ll have a future with a lot less pain and more mobility.

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The #1 Lie I Like To Tell Myself

As a professional procrastinator, I like to put everything off until the last minute. My experience with myself is that, if I begin working, I don’t know when to stop. I have tried to compensate by telling myself that I’ll do this thing for myself now and get to the work later. As long as I’m the only one I have to worry about, this is a fine plan.

The problem is that I am not the only one that I have to worry about. We don’t have kids so this is usually the case. However, I do have an elderly parent with pain issues that seemingly Will. Not. Go. Away. My mother has spent the last 14 months in and out of an excrucating amount of pain. My family and I have dropped everything at the last minute to see that she gets the care and medication that she needs almost every single month, sometimes for a week at a time.

Due to complications from an autoimmune medication that my mother was taking, she discontinued an otherwise effective medication. We didn’t really know how effective until she had to stop taking it a month ago. The medication continued to work for a few weeks. Into our fourth week, we now clearly see that it had been working more than we realized when a highly intense form of sciatica hit.

I called her doctors and picked up a prescription. My husband worked from home today so I could take a memoir writing class this afternoon. In my place, he called 911 to advise on my mother, had the prescription filled at their instruction, made lunch for my mother, and ensured my mom took her medication that thankfully worked within the hour. I felt better that she seemed to be in less pain.

After I came home from class, I checked on mom: sleeping. I had my own dinner and then got her up to take her medication again. My husband stayed with me, helping mom with dinner, clean up, and getting around. I set up a commode on the toilet my Dad used to use because it means she doesn’t have to bend down as far.

I wrote a medication diary so I can keep track of the pain meds that she’s now taking. She had mentioned she was chilly so I took her temperature, which was raised. I gave her an additional Tylenol only. We will check her temperature as well as ensure that she eats and takes her medication on an alternating basis.

I put a lamp in her room so she doesn’t need the bright overhead light. I set her up with throat drops, her phone, and water. She drowsed and I came up upstairs to our apartment to have some lemon ginger tea and write. As I sat down, I asked myself, “When are you ever going to learn? When in doubt, write.”

Great Doc Award: Dr. Lewis B. Lane

My mother sees Dr. Lewis B. Lane in Great Neck for her arthritis. Dr. Lane is the Chief of Hand Surgery at North Shore LIJ University Hospital. I accompanied Mom last month to a checkup appointment with Dr. Lane for the arthritis in her hand. 

So after Mom broke her hand, I took her Mom to an appointment with Dr. Lane who wrapped her arm up with a half cast. Unfortunately, the half cast and the arthritis do not mix.

With arthritis, moving your hand helps diffuse the inflammation. With a break, moving your hand can delay or prevent the healing. The half cast caused severe arthritic inflammation and swelling throughout the hand while also sending her pain through the roof. She has been battling the battle of the hand problems ever since she fell on the 6th. 

By Saturday the 23rd, the pain had gotten particularly bad. I called and spoke to the on-call doctor, reiterating the unfortunate situation to Mom about how to treat her hand: take the Percocet that she got from the hospital, use ice, take off the cast as long as she doesn’t use the hand too much. 

On Monday, I called the office and got a morning appointment for Tuesday morning. Mom got a cortisone shot in her hand. The pain of it surprised her as she had no pain with previous cortisone shots in her lower back and knee. Dr. Lane said it would take at minimum a few days to take effect and as long as one to two weeks. She might get some improvement by this weekend. 

Unfortunately, my mom has continued to have severe pain in her hand since Tuesday. I called Dr. Lane’s office and left a message. I wanted to know if there was any better medication that my mother could take instead of the Percocet since she still has pain even when she takes it. The staff person said she would get a message to him because he was out of the office and that he would call me back. 

Within a couple of hours, Dr. Lane called me back and we spoke at length. Dr. Lane and I talked about a range of things: whether or not the Percocet had Tylenol in it (it does), the problem my mother is facing with her dual hand issues, and the limitations and problems of pain management for elderly patients.

I have explained the challenges of a break in her arthritic hand many times to my Mom. But it’s hard when she suffers, wants relief desperately, and I am unable to do that. All I can do is offer sympathy, support, and be there for her. 

But back to Dr. Lane. He asked about whether or not she was depressed, suggested I talk to her doc about meds or therapy, and spoke empathetically about her predicament. He talked about his experience dealing with his own elderly mother and even complimented me on being there for my mom, saying there was a special place in heaven for people like me. I said I hoped there was.

I can’t say enough good things about Dr. Lewis B. Lane. Not only is he an incredible doctor, he has a calm demeanor, treats his staff and his patients with respect, explains things clearly, possesses a great bedside manner, is caring and empathetic, and is very funny!

I adore this man as a doctor, and I told him I thought he was a doll.

Because he is. 

Family + Accidents = Stress! Whee!

The last nine months have brought death and destruction to my family.

No. Seriously.

My third grade teacher and close friend of my parents died in November, my father died in December, and my father’s brother died in July.

The August icing on the accident-cake? Yesterday, I received a call from my mother, shakily telling me that she fell. I was able to get an approximate location, and my hubbie and I went to pick her up. She fell, hurt her arm, received a huge gash above her right brow, got a concussion and knocked herself out, and got extremely nauseous and vomited.

I called an ambulance who gave her a neck brace and tried to lay her down, but she was incredibly nauseous and had to sit up. The ambulance and police were all great, even cracking jokes. One said he hadn’t lost anyone that day. I told him to go lose someone else’s mother. Even my mom laughed.

While mom was taken to the hospital, we popped on by home to pick up her ID and insurance info. We waited outside the trauma unit for about an hour until we could go in and see her. The CAT scan for internal bleeding from the concussion came back negative, and X-rays showed a wrist fracture. She was wheeled into a bed stall in the ER while she waited for a bed.

My sister M went to the hospital at 11am to find that my mother was still in the same spot. A hospital bed never opened up. Machinery beeped all night long, and my mother didn’t get any sleep. My mother wanted to go home, so they discharged her.

Unfortunately, the broken wrist is on her preferred arm, which makes a whole lot of things difficult. Since I’m home, I will be helping my mom with meals, shopping, getting dressed, etc. In fact, anything that involves using your hand. It might get a bit tricky. At the very least, a cleaning lady is going to be involved while Mom recovers; I barely like cleaning my own place!

But it’s all good because this is the reason I wanted to move back home: So I could help my aging parents when they need it the most.

On a positive note, my mother pulled two, 2 lb. tomatoes from the garden just the other day. Here’s a photo of my mom with the meaty toms!

Mom's 2 lb. toms

Mom’s 2 lb. toms

Mother’s Day Presents

For four days ending yesterday on Mother’s Day, my husband, my mother, and I drove to and from Massachusetts to visit family, friends, and take care of house stuff. This was the first trip my 83 year-old mom since my dad died in December. The last time they went anywhere together was 2008 before my dad had a stroke.

Thursday, we made it into our Plainville, MA hotel after a 6 hour drive including stops and lunch in Mystic, CT. With all of us so tired, we all vegged out for the night reading and/or writing.

On Friday, we treated my husband’s 92 year old aunt to lunch for her birthday that day. Afterwards, my husband went home to nap while we ladies went to the mall to walk and shop at J.C. Penney’s. My mother said that this was the first time she had fun since my dad died.

Later that night, we picked up our aunt and went over to my brother- and sister-in-law’s house. For the first time, my 16-year old niece and 10 year-old nephew hung out with the adults. We were all joking, laughing, and teasing other over coffee, homemade vanilla cream pie that our aunt made, and a platter of cookies. I cannot remember the last time I laughed so much with my husband’s family. Great, great day filled with fantastic memories.

On Saturday, we drove into Cambridge, MA. We met a couple of dear friends for lunch. My mom had a stomachache, so I walked her back to the hotel and then met up with our friends again. We chatted, laughed, and ate ice cream from Toscanini’s.  My husband and I met with a painter to discuss painting the exterior of our home that we are renting out, and we talked to our current property manager about transitioning to new tenants. Because it was getting late and my mother was still not feeling well, my husband and I went for a snack and drink in the hotel restaurant.

The bed in that hotel was not comfortable, and I was up in pain at 4am. After checking out, we met a dear friend at Veggie Galaxy for morning breakfast. I had been dying to take my mom there, and she enjoyed the stuffed french toast. We had to drive to and from West Roxbury, MA in order to pick up a rental truck to transport some items that we left at the house. After packing the truck and getting food supplies at Starbucks, we headed home for New York.

On the way home, I played the Leonard Cohen channel on Pandora. After a while my mom asked, “You like listening to this kind of music? It’s going to put you to sleep.” I said, “Yeah, sometimes. I’ll play something peppier for you.” So I changed the channel to Beborn Beton, and my mom was tapping along to the songs.

Last week, Massachusetts began a campaign to get drivers to use their blinkers when changing lanes. On the electronic signs along the highway, the signs asked “Changing lanes?” followed by this message:

Blinkah

For those of you who do not knot, the New England accent tends to drop the ending ‘r’ sound and turns it into an ‘AH’ sound, the kind of ‘AH’ sound that you might make when the doctor is holding your tongue with a depressor. For a while, my mom kept saying ‘blinkah’ when she saw a driver not use their blinkers. That’s pretty darn cute when you consider that my mother is an 83 year-old Italian with an accent. While driving in MA, I noticed an incredible amount of blinker usage that I can only attribute to the increased awareness that the electronic boards brought about.

At another point, I was explaining something to my mom. She said to me, “You know, I’m not trying to tell you what to do. You can drive however you want.” I reached over to touch her arm gently and said, “I know that, mom. I know you’re not trying to tell me what to do. I was just sharing information.” My mom turned to me and said, “You know, we really get along great.”

On Mother’s Day, we give presents to our mothers. This time, I got some of my own.

On My Dad’s Birthday

Dad ProfileIf my father were alive, he would have celebrated his 89th birthday with his wife of 65 years, two of his daughters, one son-in-law, and his only grandson. Dad would have eaten cheese ravioli with meatballs. For dessert, he would have tasted fresh baked coffee cake ridged with white icing and walnut pieces. He would chased the cake with sips of Starbucks Gold Coast coffee served in a white china teacup with blue decorations all around it and on its plate.

Today my Dad would have laughed when my mom told the story of an excerpt from the book Lady from the Longboat Key by Edith Barr Dunn. Ms. Dunn successfully bought and sold real estate in Longboat Key, Florida. One of her businesses was a beauty salon wherein she employed two gay men and a female impersonator. One day, she came into the office to find the office refrigerator filled with different kinds of fruit. Frustrated, she asked the employees:

“What are all these fruit doing here?”
One of the men replied: “What do you mean? There’s only three of us here.”

My Dad would have been there when we used Facetime to talk to my sister M, her husband J, and their son J2  who are currently in Southern California to celebrate my brother-in-laws’ 50th birthday during J2’s winter school break. I can imagine his face lighting up like a shining star, mouth in a wide open smile, cheeks bunching up, and laughing just to be able to see his grandson on the screen and wish him a great vacation. My Dad would have wished them all a great time despite feeling nauseous and in pain from a growing, too-large spleen.

After the meal, my Dad would have turned slowly around in this chair to grab his walker, pull himself up, and take slow, steady steps. He would have retreated to the empillowed chair and selected a classic movie while he napped there. My family and I would have sat around, laughed, and talked.

We would ask my Dad how he felt, but the answer was the same as the answer the last time you asked. He was feeling, more or less, chronically nauseous and often unable to keep food down. He was in pain when he needed to bend or move because the spleen had grown so large that it was pushing on other organs. If it was a particularly bad day, my Dad would tell you that he prayed for God to take him. My mother would beg him to stay.

“I need you, Joe.”

The last four years after my Dad’s stroke were extremely hard on him. A robust, healthy, hard-working, construction manager who spent his days outdoors became a man too ill to enjoy his life, bathe by himself, or walk steadily unaided.  He often had difficulty swallowing and would choke on food. Whatever was happening to his body, his mind remained clear. He was a chronic insomniac who could never escape his body, the ultimate prison.

My father remembered living a happy life.

“When I was on the farm and worked outdoors, I was happy.”
“When I had no shoes because we were too poor, I was happy.”
“When all I had to eat was honey on a piece of bread, I was happy.”

I have seen pictures of my Dad when he was younger. My Dad was a man with a big smile, glistening teeth, and a hearty laugh. The man I see in those pictures is not the man I remember. I remember the old, sick man who wished to die because his body’s ailments took away his life’s pleasures. He stopped eating ice cream because it made him too cold. When that happens, life has gotten pretty bad.

My wish for you is that, whatever happens, you relish your desire to eat ice cream.

Spending Time with Mom

Before we moved to NY to be near my elderly parents and ailing father, the only time I spent with my family was too-brief visits that invariably involved a lot of stress, fighting, and then retreating back to Massachusetts. Moving to NY to be closer to my parents and to be a resource for them improved my feelings towards them because I got to see my mom and dad under rather ordinary, non-holiday circumstances on a regular basis.

Since my dad died in December and my sister A returned home to Tennessee, I have made the effort to spend some time with my mother every day. This is easier for me than it sounds because I live in the apartment upstairs with my husband and three cats. We have our own space with its own entrance, shared foyer, a privacy door to our apartment, and we pay rent. Since I am working from home, I have the latitude to visit my mother several times a day and/or spend awhile with her.

The best thing about this arrangement is that I am laughing a lot more because my mom is a very funny lady. When I used to come home for visits, I might be around during a time when she was complaining a lot. I would find it hard to want to spend time with her because I might be staying with them in a nearby room. Now, because I spend a lot of time with her, the percent of time I spend with her where she is in complaining mode is less than it used to be.

My mother is a good storyteller. She will share with me memories of my father, growing up in dire poverty in Italy, or good times with friends she had. Her high-pitched, rapid-giggling style of laughing is enough to get you laughing so hard that you have tears streaming down your face without even having a reason to laugh.

I get to pop on downstairs and give her a hug. I get to offer to get things for her when I am out running errands on my own. In return, she feeds me. Oh, does she feed me! Even though my Italian-born excellent cook mother does not cook as much, she often shares what she cooks with me, or she will buy food and give us half. I fill her car with gas when it needs it. I call her doctor’s office or Medicare or Social Security or her various insurance and pension companies so she does not have to deal with talking over the phone with a thick accent and her hearing aid removed.

Just tonight, I came away with the some fresh baked coffee cake with drizzled icing and walnut bits. If a better relationship with my mother who makes me laugh isn’t the icing on the coffee cafe, then I don’t know what is.