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.
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.
Nobody has ever before asked the nuclear family to live all by itself in a box the way we do. With no relatives, no support, we've put it in an impossible situation.
Margaret Mead
Family, Kansas City, 2008 (photo, Kevin Cawley, flickr creative commons)
"I wish things were the way they used to be," my mother said to me the other day. Because of what we'd been talking about, I knew what she meant: she wished things were like they were when she was growing up, when she had plenty of relatives living nearby. Parents, siblings, grandparents, cousins, aunts, uncles - by the dozens. When her father's mother was the age my mother is now, she had so many grandchildren that, after her husband died, she never had to spend the night alone. I doubt that the lovely family shown above will be living under similar circumstances 50 years from now. The children might be living near their aging parents, however, the more education they get, the less likely this will be.
Flash forward 60 years. My mother lives in Michigan 500+ miles away from most of her relatives. She hears occasionally from her nieces and remaining siblings and, just this past weekend, her widowed brother-in-law and his two daughters visited - a rare occasion these days as everyone ages. Meanwhile, the only relatives she has living nearby are a daughter who doesn't own a car and is a working single mother, an older sister, who doesn't drive anymore, and a widowed sister-in-law she rarely sees. My father has several nieces living in the area who he only sees at funerals or weddings. Not much of a family support network that can pop in and check on things or send a child/grandchild to spend time with the grandparents.
Then there are the rest of the children:
Myself (the oldest), living 2,000 away on the West Coast
Second daughter, living 200 miles away, outside Chicago (main caregiver)
Third daughter, living about 5 miles away, with many responsiblities, no car, and health concerns
Only son, living in Colorado with four children at home and a demanding job
My parents have a live-in caregiver, but she can't replace an entire community of family, no matter how capable she is. My mother has a good friend who lives about 100 miles away, but she is also aging and her husband isn't well enough to drive far - so the 100 miles might as well be a thousand. What can children do? For starters, adult children of aging parents need to recognize that there's a problem. A shocking number of Baby Boomers Don't Have Time to Visit Aging Parents, according to a British study. Presumably, that's also true of Baby Boomers in North America, which means a lot of lonely old people. China, Japan, Europe - they're all experiencing care crises because so many seniors have children who are living far away. This problem is so big in China that there are suggestions that caring for aging parents become law. This article on legislating "filial piety," makes for interesting reading - and thinking.
Aunt Verdie (personal photo)
I'm not telling you this to guilt you out. I'm in the same boat myself - living far away from parents who are often lonely and bored. I can remember when things were different. We used to visit my grandparents every summer and living across the road was someone we all called Aunt Verdie. I don't know if Aunt Verdie was my grandfather's aunt or a cousin; all I know is that she was related through marriage to grandpa's mother and that we called her aunt. Aunt Verdie was a tiny little woman with white hair and I can remember going there alone or with my mom to visit her and eating biscuits with jam. I can also remember that her house had a large porch and she often sat out there watching people pass, either on foot or by car, and, since many of those people were related to her, they sometimes stopped in to visit or see if she needed anything from the store. It was easy enough to do, since she wasn't off the beaten track of family life. I can tell from the picture here, that this visiting was going on for a long time because it shows my grandmother when she was younger visiting Aunt Verdie. There are at least three - maybe four - generations in this photo: Aunt Verdie, my grandmother, several of her younger children, and (being held) her oldest grandchild. I envy that ability to just stroll over to see your parents or elderly relatives. However, I also realize that living down the street or across the road from relatives doesn't go along with the mobile, highly-educated lifestyle my husband and I have led.
Next time: solutions to this problem and more.
I also wanted to share a new interest I've taken up. I'm now on Pinterest. For those of you who know about Pinterest, I don't need to say more. For those of you who don't, I encourage you to get involved. I've got a Board on Old is Beautiful that you might enjoy if you already "do" Pinterest or would like to try it out. Happy viewing/pinning.
I'd love to hear from you:
How far do you live away from your elderly parents and how does that impact your life and caregiving issues?
It is a rare and difficult attainment to grow old gracefully and happily.
Lydia Maria Francis Child
Old couple on the beach (Flickr creative commons)
Part 1: How can you tell if it's really dementia?
My parents were happy when my mother came home from the rehab center in July. My dad had been lonely at home alone and my mother was unhappy with the food and boredom at the rehab center and imagined that she'd be happier at home. Sadly, there are significant issues that make happiness difficult to achieve and even harder to sustain. Both of my parents have some type of cognitive decline/dementia. What this means is that neither of our parents are highly functioning enough to be the caregiver. Both have short term memory loss, behavioral issues related to cognitive decline, and emotional issues. Sometimes, these symptoms are minimal and sometimes they're more troublesome. What it boils down to, is two people who love each other and want to live together, but often find that they annoy each other. What to do?
My dad's situation is less medically complicated than my mom's, so I'll start with it. My father has been experiencing memory loss, confusion, and inappropriate behavior since about 2009. It only became really obvious in December, 2009, when he was completely confused and exhausted at Christmas. My sister dealt with the immediate crisis and I came home in late December and took over caregiving, while my dad began to recuperate. At first, he was so exhausted and confused that he didn't really want to be involved with Mom's care. In 2011, his condition was discovered to be complicated by internal bleeding, vitamin deficiency, and exhaustion. Once his bleeding ulcer was treated and he began taking Vitamin D and Vitamin B, he stabilized. He still had memory loss and confusion issues; however, he was more able to function on a day-to-day basis and slowly became able - with help - to continue his caregiving role with Mom. However, he still experiences frustrations from confusion that can lead to angry outbursts and poor judgment.
Hands of Alzheimer's patient (flickr creative commons)
Mom and Dementia
Mom's possible dementia is a much trickier situation. Officially, I believe that she's been diagnosed with dementia. However, she's on a potent mixture of medications for chronic pain, high blood pressure and depression. Furthermore, Mom was recently diagnosed with hypothyroidism and has had low sodium levels. Any one of these things could lead to a false diagnosis of dementia. Taken together, I believe that a "true" diagnosis would be difficult to make. (Of course, I could be wrong.) Read the links below, to see information on the different sources of my mother's confusion.
The ultimate problem is that my mom has a number of conditions that could either mimic dementia or make already existing dementia worse. As my doctor would say, "it's multi-factorial." In other words, it may be six of one and half a dozen of the other. This makes it even harder to decide what to do.
Next time: Should my parents get a diagnosis and use preventative medication or not?
August 10 was a very long day. That was the day we left Michigan to return home to Vancouver. We had a three hour layover in Minneapolis. Back on the plane, my son had a window seat and watched the night sky out his window. Somewhere between Minnesota and British Columbia, he spotted seven meteors, part of the annual Perseid meteor shower. I was happy for him, and as he watched for meteors and enjoyed his view of the night sky, I thought about some of the things that had happened during our visit. "It is of great importance to note these meteors, even the small ones," William John Wills said about the Perseids. "Every observation, if carefully made, will some day help to show what they are." I wasn't watching meteors at my parents, but I observed many important things during our short visit. I'm still digesting that visit;beginning with the next post, I'll share what I learned.
My mother and her caregiver
A few of the things we did during our visit
Took my aunt to a doctor's appointment and to buy a new shrub for her yard
Went with my parents to a doctor's appointment for my mother
Purchased supplies for my mother's care that my father had forgotten to get or couldn't find
Cooked about half a dozen meals, including homemade cherry pie (made by my husband)
Went walking with my parent's caregiver most evenings
Signed my parent's caregiver (who is learning to read and write) up for a literacy program.
Helped set up WiFi network (my son)
Helped my mother with many aspects of her daily care
Followed up on requests from my sister who is the main care coordinator for my parents
Coped with angry outbursts from my father, who is in the early stage of dementia
Some of the smallest moments ended up being the most important. For example, purchasing a measuring cup to measure my mother's urine output persuaded her doctor to take her habitual drinking (of water) and sodium levels seriously. Spending time to rub lavender cream on my mother's feet, helped soothe and relax her. Encouraging my husband to take my father out to breakfast and to the local farmer's market, lifted his spirits. Not all moments were good ones. And, really, how could they be? But most moments had a kernel of learning.
What I will share in future posts
Why kindness is so important to elderly people.
The problems that caregivers and children face when a parent has dementia.
The problems of sharing the care of elderly parents with siblings.
Why eating well is one of the most important things elderly parents can do.
Why supporting paid caregivers is essential.
How boredom and loneliness affect elderly peoples' health.
How to cope with saying good-bye. (Well, okay, I still don't know what to do about this!)
My parents' caregiver, my son, and husband on the last day of our visit (personal photo)
Finally a classic song about saying good-bye. The truth is that as our parent(s) age, each time we say good-bye may be the last good-bye. On another August day thirteen years ago or so, we said good-bye to my father-in-law. We suspected that it might be the last good-bye, but we didn't know that it was until a year later. But sensing that we might never see him alive again, we cried as we drove down the road between fields of corn, our hearts full of aching because we live so far away from our families.
What do you do to stay connected to your elderly parents if they live far away?
Whenever there is a human being, there is an opportunity for kindness.
Seneca
Woman reading (flickr creative commons)
Today, I spent a lot of time with my mother. Below are just a few of the things I've done with her today.
Eaten lunch with her
Did leg exercises with her
Helped her get up to go to the bathroom at least 3 times
Changed CDs for her at least 5 times
Read to her from the Bible
Talked to her
Changed her clothes after her catheter leaked
Got her a glass of ice water
Put muscle rub on her knees
Put anti-itch cream on her back and shoulders, to help with a rash she picked up at the nursing home
And probably a dozen other things I've forgotten. The important thing is that, along the way, I learned a lot about what she likes and doesn't like and what sorts of things I might be able to do from a distance that would help her and what I can't. In the end, there is no substitute for being with our aging parents at least several weeks a year, to keep track of how they are and what their likes and dislikes are. Unlike the more stable period of adulthood, old age is a bit like childhood, when things can change quickly and only seeing with your own eyes, will help you know for sure how your parents are now. Touching base, can help in understanding their wants and needs.
I don't have time to share what I've learned so far because I've got to do some more things for my parents. So, I may miss quite a few days here, but I'll share what I've learned when I return home.
What happens to a person is less significant than what happens within him [her].
Louis Mann
Shut in (flickr creative commons)
When I left Michigan in March, my mother was in a rehab center and my parent's caregiver was away. I arrived back in Michigan on July 31st with my husband and 18-year-old son to visit my parents who are now living on the ground floor of their home because my mother can't climb the stairs. Their bedroom has been relocated to the family room. Their large bed and television fill a good deal of the room and once their two reclining chairs are added to the mix, there's little room left for anyone other than my parents. To some extent, this is unavoidable unless they get a new bed. It feels sad to me though. Their room has become a bit larger version of the ubiquitous set-up at a nicer nursing home. It's great that they're still in their own home, but my mother's increasingly limited scope of movement makes me sad. It also makes me sad that my parent's live-in caregiver now lives upstairs and the physical separation seems to have led to a sort of emotional separation.
Flower gone to seed (flickr creative commons)
I don't know how to describe my parent's changed existence other than to think of it as a kind of diminishment. My mother has diminished physically, cognitively, and now spatially. Her life has gone from being bound by an entire house, to three rooms of that house. Much of the restrictions my mother has, she has chosen herself. She has chosen to participate less and less in the world. I'm not sure why, although I suspect it's a combination of fear, anxiety, and depression. Whatever the cause, it feels as though she has a foot in the other world. My father, on the other hand, can still drive, still walk and gets out into "the world" on a regular basis: going to church, grocery shopping, or just out to water the yard.
Glass of water (flickr creative commons)
My mother still reads, looks forward to watching the ABC Nightly News with Diane Sawyer and Jeopardy (when the Olympics aren't on), and loves to listen to music. On the other hand, she has become obsessed with her bodily functions, drinks too much water, and anxiously awaits each item in the days routine. Today, I asked her if she gets bored. "Of course!" she said, looking at me as though I were an idiot to ask such a question. But when I proposed several things she might do, she wasn't interested. And, three days into my visit home, I'm stumped. I know how to buy her supplies for her catheter, talk to the visiting physical therapist about whether she should get a four-point-cane, and buy her the juice she likes: but I don't have any good ideas about what to do about her isolation and boredom. Below are two takes on the subject.
After two days spent rushing around shopping, picking up my aunt to go to a doctor's appointment, meeting visiting nurses, physical and occupational therapists, I finally got to spend some quiet time this afternoon visiting with my mother. "I was looking forward to your visit," my mother said, "but I'm not enjoying it that much. You're so busy and don't even have time to visit." I listened to what she said and looked at her sad face and I knew she was right. I slowed down and spent most of the afternoon and evening taking the time to visit. During the time I spent with her and my dad, I learned some important things:
My mother is often lonely, even though she lives with two people and my sister visits often.
Her live-in caregiver does a great job of attending to her physical needs and a not-as-good job of attending to her emotional and spiritual needs. (But is that her job?)
She doesn't enjoy many of the things she used to do or can't do them now.
Except for reading and listening to music, she's never enjoyed hobbies like crossword puzzles, playing cards, or other things that are good for a sedentary life style.
Her best friend lives over 100 miles away.
The only family member who lives nearby is a sister that she has little in common with.
She's still grieving for her sisters, two of whom died earlier this year.
She needs someone to take the time be present with her on a regular basis.
I haven't thought out what I can do about the list of things I learned, at least not yet. What I do know is that tonight - after an afternoon spent just being with my mother - she kissed me good night and told me she loved me. It's a start.
What kinds of things have you done to deal with a bored or isolated parent?
Tomorrow morning at around 7 a.m. we leave for the airport, get on a plane and fly to Detroit, where we'll get into a rental car and drive to my parent's house. My husband, my 18-year-old son and I will be visiting for ten days. I've already got a long to-do list: doctor's appointments, arranging for various services for my mom, filling the freezer with healthy nutritious food, etc. It's only fair that I spend a working vacation because my younger sister is the main caregiver, since she only lives 200 miles away from my parents, while I live 2,000 miles away. She has her hands more than full and my husband and I will try our best to get to things she doesn't have time for.
I'll be happy to see my parents. However, it won't be a relaxing, stress-free holiday - or at least I don't expect it to be. There will be work to be done, not just for my parents, but for my 82-year-old aunt. I don't know whether or not I'll be seeing my daughter, who I've been estranged from for two years, and that adds to my stress. That's why I'll be painting my toenails purple later tonight - well actually my husband will be doing the painting, but you get the idea. I chose purple because it's a bold color that will (hopefully) remind me that I'm a strong, capable woman and I'll be okay, no matter what happens.
I'll also be taking three books of poetry with me - one in my carry-on and two in my suitcase. The one going into my carry-on is a small book bound in Japanese paper where I have copied down poems and sayings I come across that I know will provide mental support, if things get tough. The quote above from St. John of the Cross is in this book. I love this quote because it reminds me that we won't be here forever and to value the time we have left, even if my parents are sometimes cranky. The other two books of poetry I'm packing are small: Poetry to Calm Your Soul and A Book of Psalms: Selected & Adapted from the Hebrew by Stephen Mitchell. Reading poetry helps center me and keeps me rooted when things are stressful. Several of the poems that I've written down are by American poet Naomi Shihab Nye. Her poem, Kindness, is one that I turn to often.
The last essential in my of toolbox is my ipod. It's one of those tiny ipod Shuffles. I can't choose the songs that come up, but that's okay with me. I almost prefer it because I don't have to think about what to listen to, it just comes along. The key, however, is to never, never put any music on your shuffle that you don't want to hear because that will be the song it chooses to play over and over. I think my playlist's fine-tuned now and I look forward to sitting back on the plane tomorrow and listening to music and putting my ipod on at the end of a long day. It helps me go to sleep. There are so many songs that I love that it's hard to choose one to share, but I'll try. Carrie Newcomer's song, Bare to the Bone, has a special place in my heart because I saw her in Bloomington, Indiana in 2000 and this was one of the beautiful songs she performed.
What essential things do you take when you visit your elderly parents? How do you look after yourself during visits? I'd love to hear your story.
Look at beauty's gift to us - her power is so great she enlivens the earth, the sky, our soul.
Mirabai
Bouquet (photo: Tim Sackton, flickr creative commons)
We're never too old for beauty. No matter how old we are, we can enjoy a bouquet of flowers. The more informal the better, particularly in the summer. Early last summer, I stayed at my parent's house while they were both at a rehab center. It was one of those unusual occurrences that has never happened before and may never happen again, when they were both in the hospital at the same time. My mother had an unexplained bleeding episode that left her weak and barely able to walk. My father had fallen off a chair and fractured a vertebrae in his back and, then, while my mom was still in the hospital threw up a frightening quantity of blood. My sister was there at the time or he might not have survived. After my parents were ready to leave the hospital, they both needed a few weeks at rehab and so I stayed on - I had already flown out when my mom went into the hospital - and took care of the house and visited them every day in rehab.
Bouquet (photo: Ernst Vikne, flickr creative commons)
It was late April, then early May, and there were many things blooming in my parent's yard. So every day or two I would pick a small bouquet and bring it to the rehab center. My mother particularly enjoyed the flowers. My dad was too grumpy to enjoy them - he'd never been in a rehab center and rarely in the hospital before despite the fact that he was 78 at the time. Bringing flowers cheered my mother up, slightly cheered up my father, and even cheered me up. It was one small thing that I could do to brighten up their stay in rehab. The care is good at the rehab center where they stayed, but the decor is, to be generous, drab. Flowers are one of summer's greatest gifts and, since my parents weren't able to go to see their flowers, I brought the flowers to them.
If you (or your parent(s)) don't have any flowers, buying some at a local farmer's market or shop is always fun. Local flowers are not only "greener," they are often fresher and less expensive. If you are a long distance caregiver, there are many options for ordering flowers online. Here are a few listed below.
Research has shown that flowers can provide health benefits, particularly to the elderly. One article makes big claims for the power of flowers. I don't know if I'm completely convinced, however, it makes for interesting reading. Besides, my own experience tells me that there's something to it. Yesterday, I was having a tough day for various reasons. My husband picked a beautiful bouquet of zinnias from our garden and, as I write this, I look at them from time-to-time and I have to admit that they do lift my spirits, just as they did when my husband brought them in yesterday and put them into a charming pottery pitcher and set them on the dining room table. That was a nice surprise.
To sit in the shade on a fine day and look upon verdure is the most perfect refreshment.
Jane Austen
Fig tree, Australia (photo: Ralph Bestic, flickr creative commons)
Sitting in the shade is one of my favorite things to do in the summer. Walking in the shade is great too. About ten years ago, we lived in Bloomington, Indiana a town blessed with shade trees. There was a park near the end of our street and I spent many summer evenings there with our son, who enjoyed the parks playgrounds and its basketball court. Sometimes, I would get the chance to walk along the path that circled the park, winding into and out of sun and shade, enjoying the difference between the heat of the sun and the cool of the shade. Shade makes summer bearable. If you, or your parents, are blessed with a yard with some shade trees, take some time to sit under one of them and sip some iced tea - or another cool beverage - it can make a wonderful pause in a hot day.
Park scene (flickr creative commons)
You may have heard about the benefits of shade trees, particularly in urban areas. I was quite amazed, however, to read about what a difference shade can make in lessening the urban heat island effect you may have been hearing about during this particularly hot summer. Perhaps, your parent(s) live in one of those heated urban centers. If so, don't worry. There's probably a park somewhere nearby, where you can enjoy some free shade. North American and European cities are particularly generous with park space, but countries around the world also have their shady nooks. If your parent(s) is able to walk comfortably for a block or two, you can walk there during the early morning or evening and enjoy the benefits of exercise and relief from the heat. Otherwise, you may need to drive. Either way, spend some time enjoying fresh air and green space. Both can lift the spirits. If you're really lucky, you or your parent(s) will live near a park with water, like the one in this picture. Nothing beats a cool breeze off the water.
Iced tea (photo: Andy Melton, flickr creative commons)
As far as the iced tea, make it however you usually do. Making sun tea can be fun, if you have the time and the inclination. My mother-in-law used to enjoy doing this in the summer and it was delicious iced tea - never bitter. In some parts of America, people live on iced tea in the summer. In the South, they call it sweet tea or cold tea. My mother grew up in Kentucky and I've enjoyed many a glass of cold tea. In fact, I was 16 before I realized that you could drink tea hot. Seriously.
The point of all of these tips, is to take the time to pause in the middle of a busy day and find time to relax, enjoy the simple pleasures of summer, and spend "quality" time with your parent(s). These will be the memories you'll be happy to have when your parent(s) are gone. Many of these tips are aimed at building memories for the future, kind of the way that squirrels bury nuts or a bride builds a hope chest (do brides still do that?) Here is a thoughtful article about Quality Time with Elderly Parents. And, even though it may seem that you simply don't have the time or the energy to pause long enough for sitting on a park bench or sipping iced tea, it will be time well spent.
Recent Comments