The Caregiver Chronicles

Taking a break - regrouping for whatever comes next

Sometimes you need to press pause to let everything sink in.

Sebastian Vettel

 

watering flowers (Christopher Craig, flickr creative commons)

 

Tomorrow, I will have been home for two weeks. I spent the first week regrouping and resting. This week, I got more done, but always in the back of my head, I see Mom lying in her bed or eating her pureed food and I feel a twinge of panic about how long she'll still be here with us. I've been phoning Mom every other day. I planned to phone every day, but I couldn't handle it because when I phone she tells me she misses me in a soft plaintive voice and asks when I'm coming back. My son is scheduled to have his wisdom teeth pulled on August 17th, so I know I can't leave until at least the 20th. My cousin recommended waiting until September so she could join me: "strength in numbers," she said, and I definitely agree. And all the time, I'm trying to wrap my head around the fact that sometime - either soon or not so soon - my mother will be gone. I won't be able to phone her, hold her hand, kiss her cheek, hear her voice - all those things that I will so deeply miss. 

 

Cyclamen (Wikimedia Commons)

 

Today, was a non-calling day and I walked over to the Botanical Garden and bought a few plants for holes in the flower bed at the back of the patio and something to put in a pot I scrounged from the "free place," beside our townhouse's trash bins. I came home with a pot of chives - for my son who wants to put them in his scrambled eggs - two types of asters, a pot of salvia, and a small adorable cyclamen that should be perfect in the salvaged pot, which cleaned up nice and has a lovely patina.  

At home, I swept and scrubbed the kitchen floor. It was a peaceful task that gave me a sense of accomplishment. Then I cleaned the upstairs bathroom and heated up some leftover stew for dinner. A relaxed evening. Not relaxed enough, however, to completely quiet the not-so-little-voice in my head - the one that's saying, "Mom misses you, what are you doing here in Vancouver when she's dying?"  Then, I sat down at the computer and worked for a while cleaning the desktop. That's when I found some notes I jotted down one evening about a week into my visit with my parents. Below is an edited version.

 

June 23, 2013

Mom was in a good mood at dinner. She said she liked eating - unusual for her - and ate her mango sorbet with enthusiasm. Right now, about 9:15, she seems to be sleeping. I hate to peek in to see if she is, in case I wake her. Dad's still in the hospital with a nasty cough and will hopefully be going to the Rehab Center soon. The evening was a peaceful one. I watered the flowers and Dad's tomatoes and cucumbers that he's planted in an old children's pool left over from the days when the grandchildren were small. The birdseed that he planted around the oak in the front yard during one of his "confused" periods are flourishing amidst the usual begonias and impatiens that he must have planted on a less confused day I took out the trash and the recycling and even washed a load of clothes. These small gifts - the smell of water on dry ground, birdsong, Mom smiling, and the quiet bustle of Mom's caregiver - are what I'll remember of this day. 

Reading these notes over reminded me that my visit hadn't been all stress and sibling tensions. There were moments of pause and pleasure. Now, I need to allow myself to enjoy those same small gifts where I am now. Taking each moment as it comes is all I can do, all any of us can do. Mom might die tomorrow or six months from now. There is no way to tell and so, for now, I have to try and not panic and take whatever comes. Wish me luck. I'll end with one of my favorite poems by Galway Kinnell.

Prayer

Whatever happens. Whatever/what is is is what/I want. Only that. But that.

 A good mantra for a difficult time of waiting and worrying. 

Weeding Therapy: dealing with caregiver stress

There is peace in a garden. Peace and results.

Ruth Stout

after weeding (elaine faith, flickr creative commons)

 

 About two weeks into my visit, things fell apart. My sister, who holds the POA (power of attorney) for my parents decided to move my mother into a foster home - adult group home. She'd been talking about the move for a while and she thought she'd done her homework. I went with her to meet the potential caregivers and see the home. The home seemed nice enough, but I wasn't overly impressed with the caregivers. I couldn't really put a finger on anything specific, however, and wrote it off to the ambivalent feeling I had about moving Mom out of her home. I didn't say anything to my sister about it because she isn't inclined to listen to me even if I have hard facts, vague feelings of unease wouldn't cut it. 

The move was upsetting and exhausting for Mom. She was being moved out of her house and she WASN'T HAPPY. Well, that's an understatement. After telling Mom goodbye and leaving her at her new "home," I slept badly and felt sad and unsure about what "we'd" just done. The next morning, Mom's live-in caregiver and I were puttering around the house when my sister burst in visibly upset. Her face was splotched with anger and she told us that the caregiver at the new place, "didn't know what she was doing,"  "We're bringing Mom home!" she yelled and, as I remember, she also told the caregiver - let's call her C. - and I that "Everyone has to toe the line or I'm quitting!" I wasn't exactly sure what line my sister had in mind, but I knew her well enough to know that it was inevitable that she would be venting her frustration and anger on me.

Sure enough, later that afternoon my sister asked (well, ask is a kind way to put it) me to come downstairs to talk to her and C., presumably to get my marching orders about toeing the line. I've never liked bullies and so I told my sister that I didn't want to talk to her when she sounded so angry and shut the door to the upstairs bedroom where I'd been staying and told her to go away. Maybe that wasn't a mature thing to do, but I just wanted to be left alone. While I was sitting in my room, I thought more about C. and some of the concerns I'd had about her behavior and her standards of caregiving. Sadly, these weren't trivial concerns and I was very stressed at the idea of C. continuing to care for my parents. I phoned Hospice and talked to the social worker on call about my concerns who assured me that the regular social worker on my mother's team would phone me in the morning.

 

Anger (Wikimedia Commons)

 The morning arrived and there wasn't a phone call. I phoned Hospice more times than I should have and it was down hill from there. My sister was now hopping mad - okay maybe not as mad as the picture - and insisted, again, that I HAD to talk to her. Again, I refused and I ended up fleeing the house and checking back into the motel I'd left two weeks earlier. (More on sibling rivalry and POA's in a future post). The next few days were stressful. Hot too. I spent my days shuttling between the Rehab Center where my dad was and my  parent's house where my mom was - encountering my still angry sister in both places. For the next two or three evenings, I would drag myself back to the motel and flop down in bed, exhausted from the heat, stress, and the shlepping from bus to motel. Blessedly, my sister didn't know where I was, or if she did, she didn't know my room number. 

 

day lily (kayaker1204, flickr creative commons)

 

Every night on the way to my room, I passed a weed-choked flower bed. The weeds bothered me and one morning I encountered the motel's owner and asked if he minded if I weeded the flowers. "Mind," he said, "not at all!" In fact, he added, he'd be delighted. So that evening, at the end of another hot, sticky, icky day, I decided to have a go at the flower bed. Two nights in a row, I worked away for an hour or two and got gloriously dirty and sweaty. It was a magnificent stress reducer. The second night I brought along some gardening tools from my parent's house and finished the weeding. I already knew that the bed contained day lilies and hostas, but after I'd cleared away most of the weeds, I also discovered some marigolds and a daisy-like flower with deep orange blooms. I went to my room and got a drink and washed my hands and then came out and unrolled the motel's hose and watered the newly weeded flowers. It was immensely satisfying. A wave of relaxation rolled over me as I stood there in the dusk watering the flowers that had been weed-choked and yellowing in the heat. I might not be able to solve the deeper problems with my sister or heal my parents, I thought, but I could set one small flower bed to rights. And that was no small thing. 

What do you do when you're stressed out either from caregiving or dealing with siblings about caregiving?

Ways to reduce stress with routine chores

Sweep the floor

Clean the fridge

Clean a junk drawer or another small area of your house that's been bothering you

Go for a LONG walk

Play solitaire

Spend an hour or two (you can do it!) on Pinterest

The wonderful book, The Extraordinary Healing Power of Ordinary Things, is well worth reading on this topic. 

 

The beauty and joy of old friends

Hold a true friend with both hands.

African proverb

friendship, flickr creative commons

 

Today, is my mother's 79th birthday. It was also the day that her long-time friend, Lois, came to visit. Mom and Lois go back a long ways - a very long ways. By my reckoning, they've been friends for about 50 years. They met when we were living on Kansas Street in a new subdivision, with boxy houses set on nice big lots. Lois and her, then, husband had four children. The oldest was only a year younger than me and the second oldest was the same age as my second sister. I'm not exactly sure how the two women became friends, but after 50 years I understand more about the things that have held them together for so long.

 

Youth: the golden age of friendship, flickr creative commons

 

For one thing, they both value learning and treasure music. For another, they were the odd women out in our neighborhood. Most of the people who lived on our street worked in car factories. Lois's husband was finishing a Phd in Math and my father worked at a white collar job - although he was still in a union. Most people, including us, drove Fords and Chevvies; Lois and her husband drove a Volkswagen. Lois sang opera and played a harp; my mother wrote poetry and was a voracious reader. They met in the carefree days of the 60s and are still friends today, having weathered one divorce, several moves, sicknesses, bouts with depression, and, finally, old age. Their lifelong friendship is something worth celebrating. 

My mother is unwell. In fact, she's so unwell that she had a Hospice Intake about six weeks ago. When I found this out, I was still at home in Vancouver and called my mother's siblings to tell them the news and wrote Lois, Mom's oldest friend. When I got home a few weeks later, Mom had already invited Lois to come for her birthday. I was delighted at the news. My mother, however, waxed and waned on the topic. She has severe arthritis, dementia (or Parkinson's) and is on lots of meds. Her memory isn't the best and she is often in too much pain to enjoy things and, more than once, regretted inviting Lois. "I hate for her to see me this way," was her usual lament. Nonetheless, as the day came closer, Mom increasingly looked forward to Lois's visit. Then today, Mom was like a cat on a hot tin roof - for lack of a better simile. She couldn't settle. Lois and Bob's expected time of arrival was 2:30 and Mom was already getting antsy by 1. She needed her catheter bag emptied, she needed her water glass refilled, she needed her fingernails touched up - on and on it went. She was already worn out before 2:30 even rolled around. "They're not coming," Mom repeated at regular intervals between 2:30 and 3:20 when they finally arrived.

"They're here!" I announced with great relief when Bob and Lois's car pulled up in the driveway. "They're not," my mom said. "They are," I replied and then I went outside to greet them. Lois, like my mom, uses a walker and was slow getting out of the car. Bob, however, despite having a pacemaker, looked hale and hearty, as they say and was out of the car first. Inside, I have no idea what Mom was thinking as she waited in her chair. I couldn't catch what the two friends said to each other first, but I pulled a chair up for Lois to sit closer to Mom and, after a few minutes, I heard Mom ask Lois why her hands were so warm and looked over and the two old friends were holding hands. Meanwhile, I was jumping up to get ice water, iced gingerale, pieces of coconut cream pie - my sister's idea since it's hard for Mom to eat cake - and generally tending to the needs of three elderly people. Mom elected not to eat the coconut cream pie after all, but was content with her mango sorbet. Really, the two women weren't very interested in food. I could overhear them asking after each other's children, talking about grandchildren, and their health: the usual topics of old friends. 

Lois and Bob stayed about two hours and I could see Mom was getting exhausted. I was on the verge of suggesting that Mom needed to rest when Lois got up and said that after she used the bathroom, they needed to go. Mom looked both sad and relieved. After the bathroom visit, Mom asked Lois if she could hug her. "What?" Lois asked. "Can I hug you?" Mom repeated. This was no easy feat to accomplish with two women, both of whom used walkers and were unsteady on their feet. Somehow, though, the two managed an improvised hug and kissed each other good-bye. Without being too sentimental about it, it's safe to predict that they'll never see each other again. Lois's last visit was several years ago. The two women only live about 80 miles apart, but when you're frail and old, 80 miles might as well be 800. I'm pretty sure they'll speak again, but even that isn't certain. It might be a cliche but all I know for sure is that today Mom and her oldest friend got to spend time together and they were both happy about that.  (Tonight, is another story. Mom's anxiety about the visit, the excitement of the visit, and the sadness of saying goodbye are making it hard for her to sleep.)

 

old friends, Finland (Giovanni Variottnetti, flickr creative commons)

 

Research is increasingly showing the importance of friendship in old age. The more friends the better. And even if your old friends die, making new friends is essential, particularly for the many seniors who end up in one or another sort of nursing home setting. 

Next time: the other side of the coin, the epidemic of loneliness in old age.  

Daisies, Dentures & a Walk: a visit with my father

Each day provides its own gifts.

Marcus Aurelius

Fourth of July, fireworks  (Wikimedia Commons)

 

Today, was the 4th of July. In the morning, I thought I could hear the sounds of a marching band wafting over from the downtown parade. Last night, there were non-stop firecrackers being set off around the neighborhood and tonight they're still at it. For my parents, however, it was simply another day in a round of confusing and difficult days. I reminded my mother that it was the 4th of July and she nodded her head and asked for another glass of water and told me how much her legs hurt.  Later, I took a cab out to see my dad at the Rehab Center where he's been since leaving the hospital. 

"Hi, Dad," I said, waking him up from an afternoon nap, "happy 4th of July." The 4th has always been one of Dad's favorite holidays, partly because our hometown - Ypsilanti, Michigan - is known for its 4th of July parade (apparently the longest-running in the state.) "Oh," Dad said, with a bit of confusion. He remembered being wheeled out somewhere to see what he thought was the Thanksgiving Parade on television. "It was pretty good," Dad said, smiling. It was still about an hour until dinner, which I'd come to eat with him. When he'd been at the Rehab Center without visitors he hadn't been eating or sleeping well. Not surprising, really. Eating is a social activity and one that older people, who already have less of an appetite, particularly dislike doing alone.  So, eating dinner with Dad was my new job.

About an hour later, dinner came: sloppy joes, a few chips, some corn, a piece of chocolate cream pie, and lemonade. "You're not eating?" Dad said, as he began to tentatively take a few bites of his food, looking at me with alarm. "Of course," I said and went out into the hall and asked if they had any leftover trays. I offered to pay, but the aide handing out the trays refused, saying that the food would just have to be thrown out anyway. And so there we sat: me on one side of Dad's small room and Dad on the other, eating our institutional meals. It really wasn't that bad, I decided; in fact,  it was quite companionable sitting there eating with Dad. 

Dad finished everything, placed his silverware meticulously on his plate, folded his used napkin and sat drinking the coffee that came with the meal. After I thought enough time had passed, I suggested that Dad let me clean his dentures. He pulled them out of his mouth and began dipping them in his coffee. "Dad don't dip your teeth in your coffee!" I said in horror. "What?" he asked, looking down as if he had no idea what I meant. I cajoled him into putting the dentures in the denture cup and went into the bathroom and gave them a good scrub. Then, I returned, clean dentures in hand, and handed the toothpaste and toothbrush to Dad. "Why don't you brush your teeth now?" I asked. But no matter how much I pleaded, Dad wasn't having any of it. It was still light out and a nice day. "Gee," I said, "how about I take you outside for a ride and when we get back you can brush your teeth?" Dad liked that idea and so, we set out.

 

(photo Leo Reynolds, flickr creative commons)

 

 It was a pleasant evening with a slight breeze. We could hear redwing blackbirds calling and the odd firecracker going off in the distance. Dad wasn't strong enough to walk very far on his own, so getting out was a real treat. As we wheeled along the sidewalk, Dad commented on the trees we passed, any birds or butterflies, just about anything. His obvious joy at getting outside made me realize how much the able-bodied take for granted. As we followed the sidewalk, we could see another wheelchair couple ahead of us. When we got to the end of the sidewalk, the other pair had started back and, as they came toward us, I could see that it was a woman about my age and a thin elderly woman that seemed older than Dad. "Hi," the younger woman said, "would you like to come with us down this trail I found?"  We introduced ourselves and headed off. At first, the going was easy. Then, we were headed down a fairly steep slope. "There's a creek," the woman said. "Must be Geddes Creek," Dad said authoritatively. I think he was right. He might not have known it was the 4th of July, but he knew the lay of the land since he had lived his entire life within about a ten mile radius of where we stood. 

 

daisies, Wikimedia Commons

 

It took all my strength to navigate the trail to the creek with Dad and his wheelchair. I had visions of runaway wheelchairs and disastrous crashes and held on tight. When we got to the bridge over the creek, I caught my breath with relief, and we all stood for while and looked down into the small creek. It was a joyful moment. The two elderly people who spent so much time cooped up inside a drab facility were delighted to be outside on a lovely summer evening. And I and the other woman were delighted to share the moment with our parents. On the way back, I plucked a wild daisy and handed it to Dad. Back in Dad's room, I reminded him that he had to brush his teeth. He grumbled, but went into the bathroom, where he stayed for quite a while, hopefully brushing his teeth. "When are you coming back?" Dad asked, with none of the grumpiness that he'd shown a few hours before. "Tomorrow, Dad, tomorrow," I said, then filled a small glass with water and put the daisy in it and set the glass on the window ledge. Small moments can carry large gifts, I thought, as I took one last glance at the daisy and hugged Dad good-bye. 

Here's a great link on loneliness in old age and why it's so important to spend time with aging parents.

Loneliness and old age

Seniors in the Emergency Room - no place to be alone

Eighty percent of success is showing up.

Woody Allen

Emergency Room

Recently, I spent 11 hours with my dad in the hospital. Ironically, even though I'd come for my mother's birthday and because she was supposedly dying, my dad was the one who ended up being REALLY sick. On the first day, I could already tell that Dad was "off." My sister thought it was because he'd fallen on Father's Day and, initially, that explanation made sense. All I know is that Dad was grumpy and more confused than usual. One day, he decided to "go for a walk" outside.  "Where are you going Dad," I asked as he lurched around the yard. "Going," he echoed, as he walked unsteadily around the front yard. Then, he set off through bushes between his house and the house next door. "Wait, wait," I yelled, to no avail. We thrashed through the bushes into the backyard where Dad plopped down into a lawn chair. About an hour later, my mother's caregiver and I were finally able to convince him to come inside and - with a big effort both of our parts - we successfully got him inside without a fall. Dad had a cold and a cough that I didn't like the sound of. I mentioned it to my sister. "Oh, he's had that cough," she told me."Okay," I said, and left it at that.

The third day of my visit, I arrived at my parent's house around 11 a.m. Dad was sitting in his recliner in a daze. He had eaten breakfast, but he wouldn't eat lunch or take his medicines. Dad was confused, his cough was worse, and he WOULDN'T EAT. My father is a man who ALWAYS eats. Something was definitely very wrong.  I picked up the phone and shared the news with my sister and we both agreed that it was time to phone 9-1-1. The ambulance arrived in minutes and we were off to the ER.

What I learned there is that the ER is no place for an elderly parent to be alone. If they are as sick as my father was - or have any degree of cognitive decline - it is a recipe for disaster. Dad was confused and upset and, before long, became agitated too. "Let's go, let's go," he kept saying. When I pointed the medical staff out in the hall and reminded him that he was sick and in the hospital, he continued to say, "let's go, let's go."  "Do you know who I am?" I asked, at one point, to gauge his degree of confusion. "Yes, I know who you are. You're my god-dammed daughter!" Dad practically shouted. "Now, let's go." It was turning into a long afternoon/evening.

 

bungee jumper

 

By then, the nurse had put monitors on Dad: two on his upper chest, two on his lower chest, and a oxygen monitor on his finger. "Why don't you just put me in a god-dammed bungee suit," Dad shouted at one of the aides. Everyone laughed at that, including Dad. "Warren," one aid said, "it's only two feet to the floor. You'd be like a yo-yo." We all laughed again, but if Dad had been alone it wouldn't have been funny. Dad methodically pulled all of his monitors off and, no matter how many times they were reattached, off they came again. Finally, with my permission, they gave something to "take the edge off" his agitation and got a sitter. That gave me a breather to go get a sandwich and then, I was back in the ER. By this time, they'd done an x-ray, discovered that Dad had pneumonia, and found a room for him. I followed along as an aid and his "sitter" took Dad upstairs. By the time his nurse and the night attending doctor got around to doing an intake, Dad could barely form words. In fact, the only coherent answer the doctor got to her questions was when she asked Dad what year it was. "29," he answered with complete confidence. 

Meanwhile, I helped with the important information they needed: the medicine he takes, how long he'd been sick, his age, and other relevant details. I hope that they would have phoned my sister to find these things out but it was a very busy night and I can't be sure that's what would have happened. It might have been as likely that they would have made do with the information they had on him from previous visits and, perhaps, have assumed the worst about his mental status. Dad does have some degree of cognitive decline; however, he is normally able to converse quite well, certainly knows what year it is, and a lot more. The bottom line is that, much as we might wish otherwise, the hospital is no place for a sick elderly person to be alone. 

After 11 hours, I finally got back to my hotel room. Dad was sleeping and the doctors and nurses had the information they needed. Tired? Yes. Happy to have spent those 11 hours with my Dad? Again, yes.  I looked for some advice about how to handle this problem of long-distance caregiving and hospital visits and I didn't find any that I really liked. Below are several links that address some of the problems. More next time on the loneliness of old age.

Balancing care 

Emergency rooms for seniors

Finally, some final thoughts on the perennial dilemma: when should you move to be closer to my aging parents?

 

Adult bibs and sippy cups - parenting our parents

The afternoon knows what the morning never suspected.

Robert Frost 

 

Old woman, Niklas, flickr creative commons

 

 Today, I continued my preparations for my trip home to be with my dying mother. Just to write those words hurts. Even though she has been old and frail for quite a while now, in my mind, my mother is always young. Partly, that's because she was only 19 when I was born and so for much of my life, she was young. Now, I'm nearly 60 and she's nearly 80. The last five years, my mother has been in and out of the hospital so many times I've lost count, fractured her hip, had numerous stays in a rehab center and always, always, has pain. She's gone from that vibrant woman who once left one of my young friends standing gape-mouthed at our front door, saying, "Is that your mother?" in a tone of awe, to a woman who cannot get to the dining room table without help, has trouble eating, and had a hospice intake about a month ago. Even now, I resist writing dying and mother in the same sentence.  Yes, my plane ticket is booked even if I am in denial. When I booked the ticket, I was afraid I was going too soon. Now, I worry that I will be too late. 

I wasn't worried about that until my sister called tonight with her latest update on Mom's health. This is the sister, about four years younger than me, who is coordinating my mother's medical care.  Mom is having trouble swallowing properly, my sister told me. Actually, she used a technical term since she's an occupational therapist, but it translates into not getting your food down your throat properly, which means you are at risk of inhaling food, thus, raising the specter of aspiration pneumonia. And, indeed, my mother seems to have inhaled some of her food. She doesn't eat solid food anymore because her dentures have become too uncomfortable to wear. Instead, she subsists on a diet of smoothies, yogurt, pudding, Ensure, and mango sorbet. Sounds safe, but whatever is wrong with Mom is causing her swallowing reflex to deteriorate, hence, aspiration. My sister thinks Mom has final stage dementia, perhaps Lewy Body Dementia. She could also have Parkinson's disease. She definitely has severe osteoarthritis, multiple joint replacements, and is on too many pain meds, although Hospice is working with that. Whatever the reason, Mom is becoming increasingly confused and having trouble swallowing. 

 

Aspiration pneumonia is a frequent cause of death for people with dementia (or Parkinson's). My sister told me that Mom sounds like she has something in her lungs and Hospice is starting her on antibiotics. At one point in our conversation, I asked if Mom could use a straw. No, my sister told me, that would be dangerous and then she asked me when my son first used a straw. I couldn't remember, but almost immediately we both thought of - and said - sippy cup at the same time. Tomorrow my sister will go in search of an adult sippy cup and, at this end, I will go in search of adult bibs. 

After I hung up the phone, a happier thought popped into my head. "Do you know," I asked my son, "Grandma was the first person to make you laugh?" I pulled the blue baby journal that I maintained during the first two years of his life off the shelf and there, on the page labeled, "Baby Laughs," I had written , "first laughed at Grandma Wheelock" - my mother.  I didn't note the date, but I'm pretty sure it was in May of 1994, when our son was about two months old. Mom and Dad had come down to visit us in Bloomington, Indiana where we were living then, and we all went for a picnic. It was a beautiful day and Brendan was sitting in his baby seat on the picnic table and my mom was talking to him and getting him to smile at her and, then, he laughed. His first laugh. That day seems both a long time ago and only yesterday. It's like a friend said when I showed her a picture of my young beautiful mother, "life sucks." Yeah, it does sometimes. 

 

 

my mother, age 18

 

"oh antic God" by Lucille Clifton

Oh antic God

return to me

my mother in her thirties . . . 

I can barely recall her song the scent of her hands

though her wild hair scratches my dreams

at night. return to me, oh Lord of then

and now, my mother's calling,

her young voice humming my name.

Miscommunication: or how to avoid a tempest in a teapot

The single biggest problem in communication is the illusion that it has taken place.

George Bernard Shaw

Frustration (Wikimedia Commons)

I bet this has happened to you. You phone your aging parent(s) and they tell you something that concerns you, in fact it upsets you. Maybe, they say, your sister/brother who is visiting or lives closer than you do has done something that pushes your buttons, something inappropriate and annoying,  or at least that's what your parents say. Or, as with my parents, it might be the live-in caregiver who has said/done the upsetting thing. You hang up the phone and you're angry, annoyed, frustrated - choose one - and too far away to go and see what's happening. So, being the dutiful son/daughter that you are, you phone up the offending sibling/caregiver and ask - maybe not too kindly - "what's going on!" The next thing you know, World War III has broken out. Miscommunications are flying left and right and more than one person is caught in the crossfire.

I am intimately familiar with this scenario - having been both the one creating the "tempest in the teapot" and the one caught in the cross-fire of miscommunication. Last summer, for example, there was a misunderstanding that escalated into my father struggling to wrestle the phone out of my hands and yelling at me and, then, my siblings phoning asking me, "what's going on?" in a less than kind tone. What had happened was that the visiting nurse had stopped by and heard some wheezing in my mom's chest. I panicked. I admit it. And I decided that it would be good if Mom  had a blood test to make sure her white blood cell count wasn't elevated. I panicked because two years ago my mom had a very bad case of pneumonia that was only detected through her WBC count. Meanwhile, my father thought I was phoning 911 for an ambulance to take my mom to the local ER. Either he hadn't heard what I was saying properly - he's a bit hard of hearing - or he just got confused. So, right away he was on the phone to my other sister and brother telling them what he THOUGHT was happening. They took it as Gospel truth, even though they know my father has cognitive decline and hearing issues. To be blunt, they didn't cut me any slack and leapt into the fray without asking me what had really happened. Confusion and anger reigned.

 

Tempest in a teapot (google.com)

 

Several days ago, I was the one who almost created a tempest. I phoned my mother and she told me - to my great surprise - that her caregiver had said that if  I visited she (the caregiver) was going to quit. "You can't come," my mom told me. "Not even for two weeks or else, Mary (let's call her) is going to quit." Needless to say, I was surprised and outraged. I didn't stop to think that maybe my mom had misunderstood something Mary had told her - this despite the fact that I know that my mother's on lots of pain meds and and has her own cognitive issues. I tried to phone Mary on her cell and she didn't answer. This added fuel to the fire. Next thing you know, I'd shot off an upset email to my sister who holds the Power of Attorney for my mother. Then, thankfully, I was able to get through to Mary who clarified what was going on. My mom had  overheard her talking on her cell to a friend about maybe taking a few days off while I was visiting. My mom turned this into: "Mary will leave if you visit." I quickly emailed my sister: emergency over and sat back feeling a bit embarrassed, to say the least.

So, the next time your parents tell you something alarming - unless the something alarming sounds immediately life-threatening - stop. That's right, stop right where you are and do nothing. Take some deep breaths and calm down. Ideally, you should wait an hour or even longer before picking the phone back up to clarify what you think is happening. Above all: CUT YOUR SIBLING(S) OR THE CAREGIVER SOME SLACK.  Whether you're turning molehills into mountains or creating tempests in teapots, neither is going to help anyone, including you.

Here are some great links on communication. Notice that many emphasize in person communication, so communication via phone or email has to be even more careful.

How to communicate with someone with dementia

Dementia and Communication

 And if all else fails, this (paraphrased) advice from Buddhist monk Thich Nhat Hahn should help: "Smile, breathe and speak slowly." 

GOOD LUCK! 

 

Dementia: a journey

Every day is a journey and the journey itself is home.

Matsuo Basho

 

Older man, photo by Peppe Gaeta, flickr creative commons

(I've been away for awhile, as I imagine some readers have noticed. My personal problems are still looming, but I thought it was time to get back to my blog. Meanwhile, my parents have been lurching from crisis to crisis. My father, particularly, has had one mishap after another.)

 It began with a fall on an icy sidewalk in February. Dad had taken a cab to the barber shop and then, for reasons known only to himself, decided to walk home even though the sidewalks were icy. He stopped at a Subway on the way home to rest, he told me, but no - of course - he didn't eat or drink anything. Even though he was tired and hungry, he almost made it home. Then he spotted the friendly neigborhood mailman, waved, lost his balance, and fell. Bam! Luckily, he caught most of the fall with his right wrist, which was badly bruised but not broken. Less luckily, he fell on his head and got a mild concussion. Both events sent him to the Rehab Center for two weeks. Since then, Dad has fallen at least three more times. Falling on his head hasn't helped his cognition. The final crisis happened about two weeks ago. Dad spent the night pacing around the house and the next day didn't remember that he hadn't slept. During the day, he continued acting strangely. In a nutshell, he was delirious. Delirium is an often overlooked condition in older people that can worsen cognitive decline. Luckily for my father, my sister had met delirium before and suspected that Dad was sick, which indeed he was. When she took him to the doctor, he diagnosed a urinary infection or UTI. 

 After a few days on antibiotics Dad seemed much improved. At first, that is. Then it became obvious that he wasn't back to "normal."  When my sisters talked to him he was disoriented, yet not in a way that was easy for him to explain. Things were the same, but different, was all he could say.  Then, several days ago, my younger sister Val was visiting and looked out the window and saw my dad mowing down the beautiful flower bed in my parents front yard. "Dad, Dad," she yelled, as she rushed outside. "Stop, stop!" Her cries fell on deaf ears, literally, so she had to run back into the house to get the caregiver, a larger and stronger woman, to help. The two disengaged Dad from the lawn mower and brought him inside. He didn't seem unhappy Pam told me later. Actually, she said, even though he's disoriented, he seems pretty cheerful. 

 

Man, artisrams, flickr creative commons

That's what I discovered when I talked to him the day after the lawn mower episode. I listened as he told me his version of what had been going on. He'd been away, he told me. He thought maybe he'd been at a Rest Area - I guess he meant those places along the freeway where you stop on trips - and while he was there they'd moved the entire house they'd lived in before to the house where they live now, except, as far as I could follow his story, it looked the same. "When I came back," he told me, "it was a different house, but the same." "Hmm," I replied. "The good thing," he continued, "was that they gave me the same room. I know that's what happened, but I don't understand it. I'm getting used to things though," Dad continued. "I feel pretty good about it and some days I even feel like I've lived here all my life."

When I thought about what he'd said later, as I was writing down what I could remember of our conversation, I felt a chill go down my spine. His description of what had happened after he got sick was an unconscious, yet moving, metaphor of how his life was going these days. He had "gone away," been sick, and now that he was "back" things - i.e. his life and his body - were the same, yet not the same. And now he had to adjust to that. So far, I was impressed by the way he seemed to accept the changes - if I overlooked his attempt to  mow down the flower bed. 

 "There's so much to do in the yard," Dad told me, as we continued our conversation. "I'm still trying to decide where to put the strawberries." As far as I know, the last house we lived in where Dad grew strawberries, was our first house which we moved out of in 1967. Or, maybe Dad was even back in his childhood home where they'd had a huge garden with strawberries and asparagus. Who could say? Losing a sense of time happens to some extent with all older people. Those with Alzheimer's or Dementia have even more trouble tracking time, however. I like to think of it as being unmoored in time. Without being sure about what happened yesterday, it can be difficult to be sure WHEN today is. (got that?) Actually, it's not such a bad thing. You could say that people with dementias live in the Eternal Now - you know that place that others strive to achieve? Only they call it Enlightenment. Seriously, not knowing When it is can be distressing, but sometimes it's more distressing for the caregiver than for the person with dementia.

After I hung up the phone, I phoned my sister Pam. "Hey," I said, "I think I know why Dad was mowing down the flower bed." 

 

 

Tending my own nest

 

bird's nest (annahesser, flickr)

 

 After what I thought was a reasonably good visit to my parents in August, disaster struck. Not them; me. My husband has moved out and I am now living in our home with my 18-year-old son who has started university and our cat. Our "trial separation" is only supposed to last for three months, but it has been distressing, disruptive and - on top of everything else I'm dealing with - just too much to keep up here.

Now, it's time for me to tend to my own nest and take care of myself. If you want to follow those efforts you can visit me at my new blog Breathing Space.

I hope to return here soon, but we'll see how things go! For now, my parents are doing relatively well, their caregiver is still there, and my sister and I while not on the best of terms are at least speaking.

Take care and best wishes for a Happy 2013. 

 

The Art of Losing: Poems of Grief and Healing - a book review

The first day after a death, the new absence

Is always the same; we should be careful

Of each other, we should be kind

While there is still time.

Philip Larkin

After the funeral (Carol Browne, flickr creative commons)

Death has been on my mind lately. Two of my aunts have died this year, my sister's mother-in-law is at death's door, and my own mother isn't doing that well. Pneumonia season is on the way and my mother has had pneumonia at least once each of the past three years.  Pneumonia is so associated with aging that some people call it the "old person's friend," not because it's actually a friend, but because it's always around. Why are old people so susceptible to pneumonia? There are many reasons, which this article in Slate does a great job of explaining. Even though my mom is 78 and has multiple health problems, I'm not ready for her to go. Most caregivers for aging parents are aware - or should be aware - that each visit, each year, each hospitalization might be the last. That's where Kevin Young's wonderful book comes in.

Kevin Young, an accomplished poet himself, has put together a moving book of poetry about grief and loss. The selections in The Art of Losing include many well known poems, but just as many poems that I wasn't familiar with. All of the poems, whether they speak of the raw anguish of fresh grief or the memories of long-lost loved ones, are comforting. Quoting bits of poems seems pointless to me, so I'll include two shorter poems I loved that speak to different sorts of grief. 

 

Comfort (flickr creative commons)

 

 Mourners

Ted Kooser

 

After the funeral, the mourners gather

under the rustling churchyard maples

and talk softly, like clusters of leaves.

White shirt cuffs and collars flash in the shade:

highlights on deep green water.

They came this afternoon to say goodbye,

but now they keep saying hello and hello,

peering into each other's faces,

slow to let go of each other's hands. 

 

Clifton and Mom in their 30s (personal collection)

 

 "oh antic God"

Lucille Clifton

 

oh antic God

return to me

my mother in her thirties

leaned across the front porch

the huge pillow of her breasts

pressing against the rail

summoning me in for bed.

 

I am almost the dead woman's age times two.

 

I can barely recall her song

the scent of her hands

though her wild hair scratches my dreams

at night.     return to me, oh Lord of then

and now, my mother's calling,

her young voice humming my name.

 

The Art of Losing is the kind of book you should keep on your bedside table and dip into as you need to. The book is filled with solace and insight and, yes, joy - the joy of life that goes on and the joyous memories of those who have gone before. Many caregivers, including myself, also deal with grief for the loss of their parent(s) as they knew them. This is particularly true for those of us whose parents have dementia. There is a great deal of grieving that goes on around dementia.  I said that I wouldn't quote bits of poems, but "Alzheimer's" by Bob Hicok has some beautiful lines that are appropriate to the grief of caring for a parent with dementia. In this poem, Hicok documents the losses associated with dementia and ends on a joyful note, celebrating one of his mother's lucid moments. Reading these lines: "When she sometimes looks up and says my name, the sound arriving/like the trill of a bird so rare/it's rumored no longer to exist," made be cry - a good kind of crying. Then, there's anticipatory grief. It may not be our constant friend, but it is a frequent visitor: whenever a parent/spouse takes a turn for the worse. Young's book is a comfort for that kind of grief too. Obviously, I loved this book. If you like poetry and you're over 50 - or younger and facing caring for someone - you should buy this book. You won't regret it. 

 As usual, I'd like to leave you with a song. This one is a classic. Gloomy and sad - yes - but I think it's also a joyful kind of sad that allows us to grieve and we live in a culture that doesn't value grieving. This version features one of my favorite singers - Iris DeMent.