Posts filed under 'In Home Care'
By CK Wilde for 3GenFamily Blog
Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
* * * * *
“Are you coming to bed, hon?” whispered my sleepy husband.
“In a minute . . . this is such a good book!” I said as I glanced up.
From the first paragraph, Carol O’Dell’s book, Mothering Mother, had me spellbound. I just could not put this book down.
Sleep is my most precious commodity. It is rare for me to stretch the time before I turn out the lights. Yet, this engrossing story made me willingly break my own rule.
Most resources about caregiving focus on cold, factual advice to the reader. While how-to books can be very helpful, they don’t deliver an insider view of the physical and emotional impact of caring for someone daily for an extended period of time.
Mothering Mother propels you into O’Dell’s non-stop whirl of caring for a parent with Parkinson’s disease while caring for teenage daughters with their own needs and trying to sustain her relationship with her husband. Oh, she is also working to keep her sanity.
Alzheimer’s, Too
Through twists and turns in all of their lives, I found myself laughing out loud at some of the crazy-making outbursts from O’Dell’s mother, Noveline. But, I wasn’t laughing at O’Dell or her mother. I was laughing because my Dad or another elder said something totally off the wall just like it.
Then, it hit me. At this point in the story, Noveline has symptoms of Alzheimer’s disease in addition to Parkinson’s, but O’Dell doesn’t know what it is yet. I remember being baffled by things my Dad said. I remember my frustration with Dad’s paranoia and his unwarranted fears.
Dancing As Fast As She Can
Carol O’Dell is startlingly honest in describing her hectic life, her thoughts and her feelings - amused, angry, stressed, exasperated, determined, perplexed, overwhelmed and inspired by events as they occur. If you have never dealt on a daily basis with a baby’s dirty diapers or tried to lift a grown adult who has no strength, some of her descriptions may shock you.
Like most caregivers for aging parents, O’Dell didn’t take classes in geriatric nursing. She’s learning “on the job.” Insurance won’t cover nursing care in the home. Medicare only covers it for a short time after a hospitalization. Hospice help only arrives at the end, long after O’Dell has won the major battles.
Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir is an important book for caregivers and other family members to read. Certainly, Carol O’Dell’s experience is her own. Yet, the book describes common issues that anyone caring for a parent, or considering it, needs to think carefully about.
Thank you, Carol O’Dell, for sharing your innermost thoughts and feelings with us! This book rates five stars.
Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
© 2008 CK Wilde. All Rights Reserved. Please feel free to link to this post but you must have prior written permission to reproduce this post either whole or in part. Please use the comments to request permission.
June 19th, 2008
By CK Wilde for 3GenFamily Blog
http://www.pbs.org/caringforyourparents
I received an email from my cousin about the PBS documentary, Caring for Your Parents, a few days after it aired on April 2, 2008. He wanted to know if I was going to talk about it here. He thought it was a dynamite show.
I missed it the first time it aired. Fortunately, the entire show is available at the PBS website. So I was able to watch it today.
Wow!
The Caring for Your Parents website has divided the show into small sections. I was only going to sample a few sections to get a sense of what the show was about. That turned out to be nearly impossible. I had to watch the entire show.
The show’s producer, writer and director, Michael Kirk tread a fine line between respecting the private aspects of each of these five families from Rhode Island while having them describe the unvarnished truth of their lives as caregivers for their aging parents. We follow them over the course of a year. From well-to-do to working class, each family is coping with their parents evolving lives. Several of these families were dealing with parents with dementia.
It’s funny how we sometimes think our own situation is different or unique. I was struck by how eerily similar many of the conversations between adult child and parent and health care provider were to my conversations with my father.
Early in the show, one of the parents was being reminded by his doctor that he needed to give up driving a car because his memory has started to fail. The conversation was so similar to ones I had with my Dad that I was stunned!
The families and situations were varied but the major themes were the same as those I had encountered. Here are a few highlights:
1. Many of our parents believe in being self-sufficient. They will not mention problems they are having because they don’t want to be a burden. So, it is important to have conversations about finances and medical care and to continue having conversations as your parents’ health changes. Their choices and decisions and wishes need to be written down. It’s not one conversation–it’s many over time.
2. Your interactions with your adult siblings regarding your parents will mirror the interactions you had when you were younger. If your fought as kids, you will likely fight about your parents’ wellbeing. You can break out of the old pattern. You need to toss your expectations away about what your siblings ought to be doing. Inter-family anger is likely when one sibling does all the caregiving. It needs to be dealt with in a positive way.
3. The family members providing care often deal with highly technical medical information in order to provide a parent with informed care. It practically takes a Masters degree to deliver medication, understand what the issues are, speak for the patient when she/he can speak for themselves and make the excruciating decision on when to stop a treatment that isn’t working.
4. All of this work takes a huge toll on the caregiver whose health may be in jeopardy from the stress and self-denial. Of the five families, the caregivers who took time to take care of themselves fared significantly better than those that didn’t.
Director, Michael Kirk, tries to end on an upbeat note by talking about “Transformative Moments”. My own experience bears out that there are often funny, happy and special moments shared with your parents as you care for them. The more you focus on those moments of joy the easier it is to get through the difficult moments.
Caring for Your Parents forces us to confront the idyllic myth that we and our parents may have of their independently living out their days in happy retirement until their “time is up.” Our elders are living longer, often in poorer health. They need more and more of our help as time goes on.
This documentary is a real eye opener. Please do watch it.
It is available for viewing on the PBS website and the DVD is available for purchase.
Caring for Your Parents
© 2008 CK Wilde. All Rights Reserved. Please feel free to link to this post but you must have prior written permission to reproduce this post either whole or in part. Please use the comments to request permission.
May 4th, 2008
The mood was relaxed and happy on the five hour flight from California to New Jersey. It was Thanksgiving Day. The sun was just beginning to set on what must have been an unseasonably warm day on the East Coast. I smiled to myself. The plane had arrived ahead of schedule. I would be at my father’s home in time for dinner with him.
The airport shuttle driver let me off outside the patio of my Dad’s place. I could see Dad was sitting motionless in his recliner in the corner of the room. Only the kitchen light was on, but I could easily peer into this tiny garden apartment in an independent senior living community. It had been my father’s comfortable home for the past year.
The TV was off. Dad must have fallen asleep, again.
I knocked on the glass patio door and eventually woke him from his nap. He was overjoyed to see me. But, his mood went from gleeful to glum in only a minute. “I’m sorry. I’m afraid I don’t have dinner for you,” he said.
In our phone conversations over the past few days, my father had chatted cheerfully about preparing his favorite dish, baked turkey legs, for us for Thanksgiving. He had discovered a great recipe by accident and wanted to share it with me.
“I guess I fell asleep and didn’t hear the timer,” he continued. “ The turkey legs were totally burnt even though I had them in a low, 250 degree oven.”
“How long do you think you overslept?” I asked.
“Oh, it might have been six hours,” Dad said sheepishly.
“That’s ok. You have some hamburgers in the freezer that we can make, right?” I said trying to sound upbeat. (Did I hear that right, six hours?)
I walked into the kitchen to start preparing the hamburgers. The stove was dirty. Pots had boiled over and burnt remains littered the trays under the burners. I peered into the oven. It was just as dirty. The entire apartment smelled like burnt food. This was a major change since my last visit.
I tried to hide my uneasiness as the realization began dawning on me that Dad was not able to safely cook for himself anymore.
“Gee, Dad, it looks like you had a few pots spill over,” I said.
“Yeah, pots boil over from time to time. It’s no big deal,” he growled.
“Looks like you could use some help with the cleaning, Dad. ”
“I’m doing fine by myself! I don’t have extra money pay for cleaners. I have barely enough to live on! ” Dad’s growl had turned into a shout.
Lowering my voice, I turned to him with a big smile, “I know you have done a really great job managing your money. It is looking like you could use a little help here, that’s all.”
That was the beginning of a weekend-long argument. I gave my father all sorts of suggestions for ways he could get help. He rejected every one.
We met with a non-medical in home care provider. Dad turned pale when he heard the hourly rate. I got out the rate sheet for the additional cleaning services that the senior apartment complex offered.
“That’s too much! Dad shouted.
Finally, I hit upon the idea of Dad purchasing the meal plan from the dining room. Together, we figured out how much he spent on food. It looked like buying dinner on the meal plan would not cost much more than he was already spending.
I reasoned and cajoled. Dad finally agreed that he would enjoy getting his evening meal from the dining room. All that was left to do was for my father to sign up for the plan on Monday. He said he would do it.
I left for the airport on Sunday evening with a light heart.
On Monday, I phoned to remind him to sign up for the meal plan. He began to waffle. Maybe he would wait until December. Maybe he would wait until he finished the food in the freezer. Maybe he would wait until . . .
Of course, I knew these were just excuses. For each one, I countered with a reasonable argument. Dad thought up another. He wasn’t going to do it and I was too far away to exert the same kind of influence I had when I was physically there.
A November 2007 study by the National Alliance for Caregiving and Evercare found that the long distance caregivers spend an average of $8728 per year out of their own pockets to help an elderly family member. Local caregivers spend somewhat less — approximately $5000 annually.
And, it is no surprise to me that the largest percentage of this expense is going to provide care attendants, followed closely by medical expenses and long distance travel. I had already been spending money for travel to see my Dad. Once your parent needs care, but cannot or will not pay for help, the family may need to provide it. Those of us who work are forced to rely on paid helpers to to assist with eldercare. Bu, this can have a negative financial impact on the family members paying for care.
Fate took a different turn with my father. Later that week, he developed a nose bleed that the nurses at the retirement community could not stop. His trip to the hospital ended up lasting over three months.
The nurses also reported to the managers that Dad was having trouble keeping up the apartment. The managers said they would refuse to allow him back into his apartment when he was released from the hospital for his own safety.
Now instead of convincing him to eat in the dining room, I had to convince him to move to the next level of care. To be continued . . .
November 26th, 2007
In my last post Will An “Elder Monitor” Keep Mom At Home Longer?, I mentioned that my Dad chose to move to senior independent living rather than stay in the home he owned. Still mentally alert and generally capable of taking care of himself, he was having difficulty climbing the stairs to the second floor of the house.
But that was only part of the reason to move. It was the ongoing maintenance of a modest three bedroom Cape Cod that he wanted to eliminate. He had never been a supervisor in his career. Managing the gardener was not something he liked doing.
Those traits that made Dad outstanding as an aircraft quality control representative, paying attention to tiny details and holding fast to specific procedures to complete a job, made for immense frustration with a “mow and blow” gardener. The gardener was trying to accomodate this 82 year old man while juggling the demands of other customers. There was only so much time allocated to each house.
The gardener understood very well that “Time is Money.” If my father didn’t get to the door rapidly (which was hard for him) when the gardener ran the bell, the gardener would take off for the next house.
Dad and I discussed getting more help in the home for him. He just didn’t want to manage more people. ”They all try to cut corners,” he emphatically told me.
As a long distance caregiver, I was at a serious disadvantage. Some people management issues can be resolved by phone, but most of the time, face to face talks are the best way to get things done. “Let me show you exactly which weeds didn’t get pulled.”
Dad was clear that he didn’t want to manage workers. I was too far away. We didn’t have a local family member who could act as “manager” of the service providers. More service providers, like house cleaners and in home care providers, would make his life more complicated rather than easier. So, moving to retirement community where all of the maintenance was handled seemed like the perfect solution.
The concept of living in a secure, resort-like community with meals, house cleaning, and laundry services like a four star hotel had captured Dad’s imagination. Free local transportation, regular pinochle games, planned activities (Miko the Magician!) and weekly excursions added to the allure.
His cute little house, which had no sentimental value, was in a nice middle class suburban community where the overwhelming majority of residents worked during the day. His grey striped tabby and the newscasters on CNN were his only companions.
Shops and senior services (lunch at the community center was just $1.25!) were only short drives from the house, but I could already see that his driving days were numbered. Diabetes had taken its toll on the circulation in his legs. He tried to compensate for his slower reaction time when he drove which was becoming less and less frequently. So when a a vacancy came up (after 3 months on the waiting list) in the lowest cost retirement community in the area, he made the move.
Other family members have made different choices. I have two aunts who chose to stay in the homes they have each lived in for half a century. In each case, one of their children moved in to manage care for the parent. One has daily in home care so that her son can work during the day.
My cousin tells me that he has fired more in home providers than anyone else he knows. He shrugs , “I’m tough to work for. She’s my mom and I want her treated right.” He has tried agencies; he has hired directly. One woman has cared for my aunt for seven years. Other have lasted just weeks or months. Because she need around the clock care, several providers are needed.
Still, in home care has been the right choice for my aunt. She had gotten very personalized care in familiar, comfortable surroundings. Nursing homes just can’t provide that. But in home care hasn’t been inexpensive. The largest cost has been my cousin’s time to hire and manage the care providers and take care of my aunt in the evenings. He has put his own life on temporary hold.
For those families who can’t provide this type of caregiving, there are geriatric care managers who help elders and their families find the right solution and even manage providers. A geriatric care manager typically has a nursing or social work background and is very familiar with all of the services available in a local area. Some companies are even offering these services as part of employee benefits.
When I first became a long distance caregiver, I had the help of a free service provided by a local hospital where I lived. The care manager was a tremendous help in finding information I needed.
Unfortunately, the assistance the care manager could provide was limited by distance. She lived in California. My father lived in New Jersey. I tried to discuss the idea of hiring a local care manager to help him when I couldn’t be there. Dad rejected the idea of hiring anyone. Loudly!
Much later, I would discover the hidden reason why. (to be continued in next post)
June 24th, 2007
