Collectively Wise

Mommy Wars - Some new vocabulary

I just wrote a response to a blog post (that I liked) on the topic of the latest Mommy Wars.  I'm re-posting that content here:

Just thought I’d add an interpretation I’ve come up with. Some new vocabulary we could use.

being a mom is a job.
having a (paid) job is a job.
being a caregiver (like of mom or dad) is a job.

So, some women have multiple jobs. Its easier to do a good job at a job if you’re not over extended. To some extent we can compensate for having multiple jobs by outsourcing some of the less meaningful work. Depends on income, access, community, etc. When I’ve been overextended with more than one job, typically, I make hard choices and don’t do parts of it. (like my house is a pig sty, etc. or I don’t do my kid’s 4th grade mission model like other parents do, or perhaps I’m overqualified for my job… just perhaps) If I was committed to being a stay at home mom, I’d be a better one.

This brings me to the other vocabulary:

PRACTICE YOUR CRAFT

What did you study in college? Why did you pick your career path? To quit? Or because you’re good at it and like it?

We need to facilitate and enable women to practice their crafts. If it’s early childhood development, then fine, go for that 24/7. Otherwise, be a lawyer or an inventor or a EE for part of the day.

Otherwise, I’d like to propose that we stop educating girls. There’s no point in it. (Obviously bad idea, I hope you see.)

So there are a couple of my insights. It’s about new vocabulary. And policy to follow.

DOES YOUR CAREGIVING 'TALLY' UP?

DOES YOUR CAREGIVING 'TALLY' UP?

I have to admit, I love reminder acronyms, otherwise known as mnemonics. Here's a new one to help you engage in some active self-care while you're caring for another person.
Learn to ask yourself, what's my TALLY?
Take care of yourself;
Ask for help, for information, for training;
Leave room for caregiving;
Little things mean a lot;
Yes to hope!
Caregiver stress can be a killer. The problem is that many of you are locked in what I call Caregiver Mentality, in which you ignore that stress and its physical effects on your body.
One way to counter Caregiver Mentality is to learn to track your TALLY:
1) Take care of yourself. Engage in active self-care: exercise, eat well, make sure you get enough sleep, have a team of friends and family that support you in your caregiving.
2) Ask for what you need. If you need help, if you don't have the information or expertise that you need, speak up and ask for it! One of the hallmarks of Caregiver Mentality is a passive attitude in which you wait for someone to offer you what you need. If you need it in your caregiving, then ask!
3) Leave room in your schedule for caregiving. Your time is impacted by your caregiving duties. That means you need to release other voluntary obligations so that you have the time and space to devote to your loved one. Don't cram caregiving on top of an already-full schedule.
4) Little things mean a lot. Treat yourself, as well as your patient, with compassion in small acts of kindness. Little acts that mean a lot to both of you include a special meal, a fresh blossom from the market or your garden, time to just be with one another, actively listening to him or her, and finding someone who will do the same for you. These little acts will help reduce that big stress you are living with.
5) Yes! To hope. Hope is a great gift to you and your loved one. Actively seek it out, and make room for it by releasing your fear. Dr. Bernie Siegel has a wonderful line: "In the face of uncertainty, there's nothing wrong with hope."
Blessings, Joanne

CAREGIVING DURING THE HOLIDAYS

Thanksgiving is coming and will be followed by the December holidays. As a caregiver, will you look forward to a time of delight in family and friends, or a season of nearly unbearable stress?
Regardless of the holiday you’re celebrating, getting through each celebration can be like walking through a field of emotional land mines. Rather than risk disaster, why not find a new way through the season? You can do that by helping your loved one and the rest of the family re-set expectations as to how those celebrations will be lived out.

The first rule is to take into account the new reality of your circumstances. Trying to do the tried and true traditions as if nothing has changed is a recipe for disappointment and stress. Take honest stock of the circumstances—what can your loved do and not do? Structure a holiday plan that takes those circumstances into account.

For example, if your mom is suffering from Parkinson’s and has lost the ability to communicate clearly, then expecting her to read “The Night Before Christmas” as she always has is going to be a disaster. Instead, have other family members—how about the grandkids?-- take turns reading or reciting verses of the poem to your mom.

Having your lovd one help in the kitchen for holiday meals has to be assessed against her or his ability to do so. For example, you may be able to involve a dementia patient with a repetitive task, but one that keeps his or her safety as a priority. Perhaps they shouldn’t be chopping vegetables for the turkey stuffing, but maybe they can help folding napkins and setting the Thanksgiving table.
Someone who is ill, injured or suffering from a chronic condition doesn’t have a lot of stamina, so another way to do the holidays differently is to cut back on the number and duration of the parties. You did it when you had small children in order to keep your toddlers from becoming exhausted and susceptible to tantrums, or the first germs they encountered. Keep that same focus on the need for rest and healthful meals, and it will help you set limits that will support your loved one so they can enjoy the celebrations they attend.

If you are caring for a dementia patient, you are no doubt aware that crowds, even if they are familiar people, will cause anxiety and disorientation. Don’t forget that understanding during the holidays. Your loved one may not be able to handle more than two or three people at a time, so don’t invite the whole extended family to come all at one time.

You get the idea. Expand your traditions to make room for the new reality that all of you are living, and your holiday season will be joyful and enjoyable.

Blessings, Joanne

When 9-5 Just Doesn't Work: Finding Work Life Balance

This past week, I facilitated a webinar on flexible work options for people who also have caregiving responsibilities at home.  I invited professional women that I know to discuss their experiences with work and raising children, with a focus on flexible work.  Various work arrangements were presented, with some full-time and some part-time options.  Below you can find video excerpts of the conversation.  

In total there should be about 10 short videos.  As they are prepared and uploaded, this post will be updated to include them.

 

 

CONVERSATION AT THE THRESHOLD

Caregiving on the threshold between life and death has a different quality than when we’re in it for the long run, or even the short-term with the belief that our loved one will fully recover.

One of the great gifts of caregiving at the end of life is the opportunity for reconciliation of old wounds given and suffered by both the caregiver and the patient. I call this opportunity, “the goodbye conversation.” Here it is:

1) Here's how I'll always remember you...Another way to say this is "This is what I'll always remember about you..."

2) Thank you for...

3. I forgive you... This one doesn't need to be a list of wrongs. A general statement of forgiveness is really all that it needs to be. Sometimes, depending on the issues involved, it's better to put #4 ahead of this one.

4. Will you forgive me for...?

5) I love you

6) Good-bye.

Family Caregiver, Working Mom

Are you a working mom who plays a role in caring for aging parents?  If you have experience with this or a similar situation, please consider participating in a focus group.  

These groups will be conducted to learn more about the problems and concerns that people have.  No product or service will be solicited.

More information can be found by clicking here:

Please note that if you are not local, you're a guy or you do not work outside of the home, we are interested in your thoughts as well, please just let me know in the form.

Thanks!

Kirsten

GRIEVING ‘AMBIGUOUS LOSS’

[by Joanne Reynolds] If you are a caregiver to a loved one who is suffering from dementia, you are experiencing something psychologists call ambiguous loss. It’s a particular form of grief that centers on the fact that you’ve lost the person you know and love as their personalities, memories and ability to function are overtaken by their dementia. It is a particularly painful form of loss because they are still living and you are with them constantly, but they are increasingly gone from you.

 

When someone we love dies, we grieve their departure. We miss them. Their deaths become a dividing line in our lives. We date our personal calendars by the events that happened before their deaths and the things that occur after. “Mom was still alive, so I think that it must have been in 1974,” I might say.

In ambiguous loss, there is no dividing line, no clean break, just the on-going, day-to-day disappearance of your loved one as their brains function less and less. They are here and gone at the same time.

We Are the Care System

[By Joanne Reynolds] Suzanne Mintz, co-founder and president of the NFCA says 80 percent of long-term care in this country is done by family and friends. She puts it pretty bluntly: “We are the care system.”

No one knows for sure how many family (otherwise known as unpaid) caregivers there are in the U. S., but the educated guesses from organizations such as AARP, the National Family Caregivers Association (NFCA) or the U. S. Administration on Aging, range from 36 million to 60 million.

The need for an enormous army of unpaid caregivers is going to dramatically in the coming years as the Baby Boomer generation ages. Some diseases, such as Alzheimer’s and Parkinson’s have risk factors that are dependant on age. The older the person, the more likely he or she is to suffer from one of these chronic and debilitating conditions that require care.

Sleep Apnea

[by Adrienne] I am pleased to say I get to sleep in the same bed with my husband again. I realize it doesn’t sound like something to get up and shout about, but after more than two years of sleeping apart, I’m ecstatic! Why? My husband was tested and diagnosed with obstructive sleep apnea. Based on the information provided by the test, he was able to purchase a CPAP (Continuous Positive Airflow Pressure) machine that suited his breathing patterns.

His case is almost textbook. He fits many of the risk factors: male, over 40, overweight. As often happens, I had to tell him I thought he had sleep apnea. Many sufferers aren’t aware they stop breathing; it's a bedmate or roommate that lets them know there's a problem.

Getting Ready to Handle Disaster

[by Joanne Reynolds] The earthquake, tsunami and nuclear disaster unfolding in Japan have featured news coverage that must tug at the heartstrings of every caregiver—the elderly people in care facilities who are unable to leave because of the contamination and have run out of medications.

No one wants to see their loved one in a circumstance like that. As a caregiver, you need to be prepared for a disaster, whether your loved one is living independently, with you or in a care facility. The Red Cross has an excellent booklet on disaster planning for seniors (“Disaster Preparedness for Seniors by Seniors”) that was created in the wake of an enormous blizzard in upstate New York in 2003. I strongly recommend that you get and use this book, whether or not you’re caring for an elderly loved one. It’s full of good advice for all of us.

What to Do About Mom and Dad

[by Joanne Reynolds]

Recently, ABC World News with Diane Sawyer focused on caregiving issues as part of its on-going series “Families on the Brink.” Entitled “What to Do About Mom and Dad,” the segments looked briefly at a wide variety of issues facing caregivers of aging parents.

I’m sharing a summary of it here for those of you who may have missed it, and for those of you who are in other caregiving circumstances. Some of what was broadcast applies to all caregiving. If you’d like to see more, visit www.abcnews.com/wn .
The first segment featured a round table discussion between author Virginia Morris (How to Care for Aging Parents), geriatricians Dr. Marie Bernard and Dr. Neil Resnick, and Martha Stewart, the lifestyle maven who has founded the Martha Stewart Center for Living, a senior health care center within Mt. Sinai Medical Center in New York City.

They concluded that conversations with your parents about aging, care and end-of-life issues has to be started early, before there’s a crisis. Ask these types of questions and listen, carefully, to the answers:

• What are you concerned about?
• What are you afraid of?
• What do you hope for?

Normal Business Hours are not Traditional School Hours

[by Kirsten] Article first published as Normal Business Hours are not Traditional School Hours on Technorati.

As a working mom who is currently looking for work, I am reminded of the disconnect between the hours I readily have available to work, and the expectations of the business world.

I have three children. They are not old enough to care for themselves. In our area, the official after school program at the school, an afternoon sitter or an au pair all cost around the same, between $1500 and $2000 per month for a family like mine.

In addition to the daily schedule conflict, our public school calendar is completely unrelated to any normal business calendar. A typical company provides 10 federal holidays and 10 vacation days per year. In the Palo Alto Unified School District there are 28 non-instructional days in-between the first day of school and the last - NOT INCLUDING SUMMER or the two kick-her-when-she's-down days needed to round out the first and last instructional weeks. (Let's start on Tuesday and end on Thursday, ok?)

During the school year, a typical business worker will have 8 holidays and access to 10 vacation days, assuming that they do not take any summer vacation. In summary, that's 20 days of childcare that working families have to scramble to find each year, not including the summer! Is it safe to assume that working families will find safe, affordable and accessible summer care, and never go on a vacation? Is that how we want our system to function?

I understand that the public schools are not accountable for this discrepancy. But it is a real problem, and it places a real burden on working families. Where do you think coverage for these days come from in real life? From family members? Neighbors? Or are kids endangered by being inadequately supervised?

BEING GRATEFUL

[by Joanne Reynolds]

The exercise was pretty simple:

There were two concentric rings of individuals facing one another. The atmosphere in the room was subdued and sleepy. It was the first event of the morning at a conference of church musicians. Few people knew one another.

We were to look the person facing us in the eye and then say one sentence of gratitude. Uncomfortable shuffling followed the instruction.

“Oh come on now,” the instructor chided. “It’s simple. Just say one thing you’re grateful for and the person facing you will tell you what they’re grateful for.”

So we began. I spoke about the beautiful day. The person facing me was grateful for safe travel. We switched partners. I spoke of the joy of singing. The person opposite me mentioned having a job that he loved.

And so it went for ten very short minutes. At the end of the time, the atmosphere in the room had changed markedly. There was energy and laughter where there had been subdued quiet before.

I tell you this story as a reminder that we can easily shift into a positive attitude by recognizing the many blessings in our lives.

CREATE A 'HEALING GARDEN'

Look at the world through your loved one’s eyes, and you’re likely to see a lot of human-made surroundings—medical offices, pharmacies, or even the room or bed in a care institution that has become “home.”

If that’s the case, then you should make plans to provide a place where your patient can get in touch with natural surroundings in an outdoor space, or even trough a small touch of nature in a houseplant or two.

There is a well-developed movement in modern architecture that incorporates natural settings, especially in the design of medical institutions. Healing gardens, as these spaces are called, are places where patients and caregivers have the opportunity to see and interact with nature.
Hospitals across the country have made room for gardens where patients and their families can not only enjoy looking at or being in a serene environment, but can actually take part in limited gardening activities as well.

Study after study shows that measurable stress indicators drop when patients and caregivers have the opportunity to be in a garden and participate in its care.

As a caregiver, both for yourself and your patient, you need to think about how you can adopt this principle for your circumstances.

Obviously, if your patient lives at home and there is a yard or garden, then making time and creating a pathway for him or her to get into that space could be part of your daily routine together. Even a small balcony in an urban setting can provide enough space for bringing in plants that create that healing garden experience.

If your loved one is living in a care facility, find out what opportunities there are for them to be taken outdoors to see a natural setting or garden. In my hometown, where there’s ample natural beauty, there are also winters that last far too long, so indoor plants are needed to provide that touchstone with nature.

If appropriate, incorporate opportunities to interact with the plants—tending them, touching them, enjoying the sweet scent of a flower.

Our need for connection to the natural world is hard wired into every human being. Recognizing this, and then assessing where opportunities can be found to do that will help both you and your loved one to shed some of the effects of the stress of your shared medical journey.

Blessings, Joanne

Haitian Earthquake Anniversary & Heart of Haiti

[by Kirsten]

Today is the one year anniversary of the devastating Haitian earthquake.  I have been very fortunate to know a local physician who organized and raised money to send multiple medical teams and supplies to Haiti in the weeks and months afterwards.  (Check his work out here.)

Recently, and this is quite the departure for me, I came across an opportunity to spread the word about another way to help Haiti.  One one hand, I'm cautious about the commercial approach.  On the other hand, it's intriguing.

As a designer and a business person, I have to admit that this approach has it's merits, so let's take a look.  As has been shown in other studies, economic improvements are sometimes greater when the aid is not a direct donation.

KickStart , for example, is a foot pump for use in irrigating fields for crops in Africa (generally speaking).  I attended a presentation on this system, and the organization's philosophy regarding economic improvement.  Their idea, is that economic opportunity, as a small, personal business is more sustainable and successful than direct charity.  In the example of water pumps, even though community members value donated wells, over time, without any specific ownership, wells fall into dis-repair and become non functioning.  On the other hand, small businesses are sustaining, and add to general economic growth in the area.

This project is very much a direct retail project, but it is connecting Haitian artisans with Macy's (forgiving for a moment Marshall Fields) - as a sales channel for their work.  The art looks beautiful to me, and it is made out of locally available materials, such as steel drums.  It's interesting and worth a look:

http://bit.ly/HeartofHaiti-ShopforABetterWorld

I was selected for this very special “CleverHaiti” opportunity by Clever Girls Collective, which endorses Blog With Integrity. All opinions are my own.

Resolutions vs. Goals

[by Adrienne]

resolution |ˌrezəˈloō sh ən|
noun
1 a firm decision to do or not to do something : she kept her resolution not to see Anne any more | a New Year's resolution.

goal |gōl|
noun
2 the object of a person's ambition or effort; an aim or desired result : going to law school has become the most important goal in his life.
• the destination of a journey : the aircraft bumped toward our goal some 400 miles to the west.

 

Something I know about myself is that I can’t make New Year’s Resolutions. It’s too black-and-white. “To do or not to do”. Yes or no. Yes is success; no is failure. As someone who’s hard on myself, it’s simply too harsh.

Instead, I make goals. It helps me recognize that even incremental steps are positive. Rather than beating myself up for missing a workout, I can be pleased that my average number of workouts per week has increased. Instead of feeling I’ve failed by eating a cookie, I recognize that maybe I only had one or that I’ve increased the vegetable and whole grains in my diet for the last several days.

Some people prefer an all-or-nothing approach. Perhaps they’re more disciplined than I am. Perhaps they’re more comfortable with failure than I am. Certain personalities work best when there are specifics to a resolution, like a sales minimum. “I will eat 4 servings of fruit and vegetables a day,” or “I will run 5 miles every day.” Many set those goals and achieve them.

I’ve also seen friends and family who suffer the flip side of the all-or-nothing approach. If they’ve slipped slightly from the resolution, then they bag the whole thing. If they’re going to have a hamburger, they figure the diet is over, so they might as well get an extra large order of fries and a sundae for dessert.

Real life intervenes with my perfect schedule and I have to forgive myself for flexing. Cop out? Perhaps to some. For me, it’s a sanity saver and better for my emotional well-being. It’s easy for me to fall into a “coulda’, woulda’, shoulda’” frame of mind. Instead, I try to recognize that I don’t have complete control over everything and move on from there.

Example: I started writing this December 31^st, hoping to post by January 2^nd. Instead, my grandfather went into the hospital, then to ICU. Reality check: time, energy and focus need to change. This, and several other things, had to be rescheduled.

Hopefully you all know what methods work best for you to encourage you toward whatever you wish to achieve, whether it be a personal, financial, or career-related goal. If, like me, a resolution carries a negative taint, I encourage you to be proud of yourselves for moving in the right direction and be a bit kinder to yourself for any slips along the way. Success is not only in the final goal, but in each step along the way.

Wishing you a healthy, happy, and successful new year!

She no longer had regular doctor appointments, which angered me

[Anonymous Guest Post]

In 2001 my grandmother was diagnosed with breast cancer. After years of going thru chemotherapy, radiation, and relapses her body couldn’t take it anymore. In September of 2008 while sitting in a Milford, De hospital, my grandmother and all of her family were told that she only had two months to live, and the best thing to do was to just try to stay comfortable.

My family was unwilling to accept this and insisted on her continuing with chemotherapy, even though it would not help. My mother and her brothers felt my grandmother could pull thru, but just by looking in her eyes I knew she was tired of fighting this disease. I took up the challenge of caring for my ailing grandmother.

The last thing that most 23 year olds would want to do is be stuck taking care of a sick relative, but I didn’t mind. My grandmother was there for me whenever I needed, so I wanted to do the same. As the first month passed my grandmother’s health declined further and further. Her lungs were filling with fluid, which made it hard for her to breath, so she was on oxygen all day everyday.

She also was in a lot of pain, which was eased with pain patches, and percocet. She no longer had regular doctor appointments, which angered me because I felt like they had just given up on her, and I wasn’t ready to do the same. Hospice was now in charge of my grandmother’s health concerns, so a nurse was sent to check her blood pressure and oxygen level every day. The hardest part of taking care of my grandmother was seeing her in pain and not being able to do anything about it. She couldn’t eat so her diet consisted of soup, and ensure drinks. That’s all that she could get down. She also had trouble sleeping because laying back made it difficult for her to breath. Nothing I tried helped her get comfortable. I felt helpless and as if I was failing her. Bathing her was also a hard task, because I, at the time was 8 months pregnant. My grandmother was unable to walk, barely stand, so everything (bathing, feeding and changing her) was done on the hospital bed that was provided to us by hospice.

My grandmother lived in apartment building that housed the elderly, so luckily her disability checks covered her rent and other expenses. Medicare took care of the many medications she was taking and meals on wheels made deliveries to her home everyday. On November 24 2008, just two weeks before my daughter was born, my grandmother passed away in her sleep right next to me. That was the worst day of my life and I relive it every time I think about her.

The only thing that comforted me was knowing that she was a devout Christian and she always reassured me she was going to be with God. Taking care of my grandmother made me realize how important the people in my life are to me and now I make sure they know it everyday.

A Holiday Checklist

[by Joanne Reynolds]

One of the blessings of traveling home to aging relatives for the holidays is not just the chance to celebrate with family, but to have the time and opportunity to really observe what’s going on in your loved one’s life.

While you’re decorating, roasting chestnuts, or baking cookies, use the time to take stock of your loved one’s condition. Here are some things to check out, courtesy of a list published today in the Los Angeles Times’ Home section:

• What’s their mental state? Are they confused, depressed or forgetful more than normal?
• Are they under-nourished or dehydrated because they have trouble handling grocery shopping and meal preparation chores?
• Do they bathe and clean house regularly?
• How are they handling their medications? Do they remember what each is treating and do they take them in a regular routine?
• Are they consuming too much alcohol?
• Do they fall frequently?

Elder abuse is a serious problem, so here are some warning signs if you are relying on a paid caregiver while you live at a distance:

• Recent changes in banking or spending patterns;
• The paid caregiver isolates your loved one from family and friends;
• The caregiver exhibits some behavioral problems such as poor anger control or excessive drinking;
• Your loved one seems fearful of the caregiver, or, alternatively, views the caregiver as their new best friend. Spending money on the caregiver or because the caregiver suggests it should be a red flag.

If you suspect abuse, physical or financial, contact your local Adult Protective Services (usually county-based) or local senior services office. Go to www.eldercare.gov for a listing of local senior agencies in the area where your loved one lives.

If the problems you note involve increasing frailty, then consult with your loved one’s doctor about developing a case management plan. Leaving your loved one when you’ve noticed a decline is worrisome until you have a care plan in place. Be sure to get in touch with local family, friends and neighbors to share your concerns, and elicit their help in checking up on your loved one. Be sure to give them your contact information in case of an emergency.

Blessings, Joanne

Making Life Possible for Truly Independent Single Parents

[by Kirsten]

Initiative Mission Statement:

In the United States there are a number of cultural assumptions that form the basis of traditional family life that are typically unspoken.  Largely because of the acceptance of these assumptions, systems have been set up and maintained that are counter to the reality for many people.  It is assumed that people who do not fit these norms, are at fault and that they should change to fit the assumptions.

These assumptions include:

• Children are raised by families with 2 adults
• One or more of these adults has time available to take children to the doctor, dentist, teacher meetings and to help at the public schools during traditional business hours.
• If a family does not have time to contribute, it is assumed that they have money to compensate.

In reality, a large percentage of families do not have this luxury, flexibility or live in this manner.  The pressures of these assumptions contribute to un-employability of independent single parents, and to a dependency on welfare (or other people) in order to meet the (healthcare and educational) needs of themselves and their dependent children.

Definition: 
Independent:  without help, financially or via an informal village (ie childcare swaps).  For example, an independent person holds a job with sufficient income to pay all household expenses (rent, car, food, healthcare, insurance, fitness, enrichment, educational expenses, childcare, etc.), and with a schedule of hours and effort to allow for a healthy lifestyle and sufficient time and flexibility to accomplish necessary parenting and household tasks.

The mission of this initiative is to identify and work to change systemic and structural elements contributing to the impossibility of true independence for single parents.  These elements include, but are not limited to:  affordable daycare, irregular public school calendars, required mid-day parent teacher meetings, after-school care, medical appointment scheduling, the education of girls (and elements to support those same girls as they become working women and single mothers).

The US democratic system is based on a "survival of the fittest" philosophy, which is counter to this initiative.  These principles have a tendency to become socialistic in order to provide the support required.  Without it, the direct relationship between single mothers and poverty is reinforced, as is the need and tendency for women to rely on each other through informal social-emotional networks.

What do you think?

The Juggling Act: Holiday Style

[by Kirsten]

Oh, no, I'm not talking about interior decorating.  No, I'm talking about the juggling act that working, sandwich generation moms do around this time of year.

Today, I only forgot the appointment with the speech teacher.  I remembered everything else.  I think.  And 830pm on a school night, is a fine time to start a gingerbread house, is it not?  Not that I actually accomplished everything else, I just thought about it, at least once, today.  (Unless of course it's not on the calendar until tomorrow or later.  In that case, I did not think about it at all.)

Work is busy.  I have a project I'm managing that is really busy right now.  Problem is, half of my engineers are out of town.  Sure, I'll be ready for the design review in less than two days.  Sure.  (Can't say the design will be finished, but we can review it in great detail.)  So, it's busy for me.  I feel like I'm being pulled in at least four or five directions...  but that's ok.

Then it's time to pick up the girls and I race to the school to pick them up.  Luckily no one has a half arranged playdate to negotiate, so after only a few minutes, they pile themselves into the car.  We head home...  and just as I pull up to the house, the phone rings.  Do I recognize the number?  Of course not, but it looks like I'm in trouble.  I can just sense it.

Of course, I am.  I've forgotten the speech therapist's appointment to discuss two of my children.  Honestly, I can understand them fine so I guess the fire of need just hasn't burned a permanent action plan on my forehead, and I've forgotten.  I'm already 15 minutes late, and now at home.  I turn around and go back.  It's a lengthy discussion with the teachers.  Great content and stuff I need to be considering.

The phone rings and it's my daughter.  It's time for swim team practice, so I rush to get home and take her.  Later there's the 3rd grade musical.  Last night was the middle schooler's show and bake sale.  This evening, I'm hoping to pay some bills and buy a few gifts online.  I write a check and leave it on the counter, forgetting to bring it to the swim coach.  It's already a month late.  Two gifts get purchased...  It's not nearly enough.

The pile of old toys and furniture in my office is massive.  It had filled the living room, but we had to move it to accommodate a new soccer team meeting.  Now I can't walk in the office.  I guess I don't need to...  I post on facebook, looking for a place to donate it all.  My ads on craigslist have gone unanswered.

To make things even more exciting, I've decided to look into a private middle school.  It's a pipe dream, but sounds like it would be wonderful for my child.  I make a mental list of the deadlines and the application process, and nervously await her test scores...

Visits with relatives are only days away.  There's baking to do, cooking and more shopping.  Hopefully everyone will be satisfied and the pressing issues will hold off just long enough.

Because it is a juggle.  Sure is.

 

Lives and Jobs on Hold: After a Sister's Stroke

My older sister had a major hemorrhagic stroke on January 8, 2009 and was hospitalized for almost a month in intensive care and a rehabilitative hospital.

My daughter and I found her in her home and I did neurological checks and determined that she needed to go to the hospital emergency room immediately. She was reluctant to go but finally agreed when my daughter and I insisted. Within 20 minutes of arriving at the emergency room, the doctors diagnosed her stroke and placed her in the intensive care unit for about a week.

Because of her arterial bleed in the brain, she had intensive physical, occupational and speech therapy in the rehabilitation hospital and this care followed her home. My daughter and I initially felt relieved and blessed that my sister was alive when we found her in her home after not hearing from her for almost 3 days. We were also grateful that she was recovering when they upgraded her condition and she went to a telemetry unit and finally to a rehabilitation hospital.

But, from the time of the stroke and her hospitalization, my daughter and I had to put our lives and jobs on hold and attend to my sister’s personal and business affairs. I became her temporary power of attorney, we had to clear out and clean her townhouse apartment within the month of January in order to save her from additional rental charges.

New Directions in Advance Directives

[by Joanne Reynolds]

Caregiving is a complicated process. And no area of it is more complex than the subject of quality of life choices and advance directives, those documents that patients can use to determine who is going to make decisions about their care when they no longer can, and just what those decision can—and cannot—be.

Last week I was privileged to be part of a conference for caregivers hosted by the Cancer Center at Hoag Memorial Hospital, Presbyterian in Newport Beach, CA. In a terrific program offered through the hospital’s Palliative Care Services, I found out there’s some new material to share with caregivers on the subject of advance directives and what I’d call care management.

At this particular hospital, Palliative Care extends far beyond the limits of keeping dying patients comfortable. It has become what I consider care management. All patients-- every single person who checks into the hospital for in-patient care-- are offered these services. What that means is that the medical team who are treating the patient, the patient’s caregiver and other family members and the Palliative Care team meet to talk about the full spectrum of the patient’s needs. One of the services the team provides is to help the patient and medical team, along with the caregivers, put together a care plan.

Sex and Babies (and the Edwards Family)

[by Kirsten]

It's in the news today that Elizabeth Edwards has died.  In story after story, she is quickly described as a devoted mother, a champion for healthcare, fighter against cancer and as the estranged wife of a cheating, love-child creating man.

Although I know little about her, it sounds like everyone loves her.  She is good.  And I'm sure, for many who knew her well, or for those who supported her, this is a sad time, and legitimately so.

When I read the stories, what felt the most charged to me was how the news stories spoke of her estranged husband, his affairs and his love-child.

It bothers me that things are so simple, so black and white, with him labeled as an evil man and her as a saint.  To be honest, the public knows little about their relationship or what motivated either of them.

What do you do when your child's teacher tells that your little one might have a problem?

[Anonymous Personal Story]

It can be quite a startling experience, one that most mothers never expect to hear.

The reality is that teachers will often be the ones to first recognize some kind of trouble. For me it was my sons 6th grade teachers telling me that they think my son might have ADHD. This led to some discussion within the family, and then making a phone call to the local psychologist.

The appointment went well, with the psychologist being both informative and helpful. I think my son was a little bewildered by the whole thing, he knew that he often get in trouble for acting out in school, but he didn’t really understand why he had to go to this doctor.

The psychologist explained the symptoms of ADHD to my son, and he agreed that there was some type of problem or disorder. The psychologist recommendation was to continue having meetings every few weeks to try and discuss school and behavior, and to visit a psychiatrist to try and get prescribed some kind of ADHD medication that might help my son concentrate and stay on task more effectively.

Falling into Alzheimer's

[Anonymous Personal Story]

One of the hardest things my family ever had to do was watch my grandfather fall into Alzheimer's.

In some ways, we may never recover who we were.

My grandmother went through a period of enshrinement after he died, putting up pictures of him at his worst all over so she could sit and cry when she saw them. It's been almost a half a year since he passed away, but we lost him two years before that, for the last two years, he had not been himself. Not the grandfather we all knew.

Before the Alzheimer's, he was a retired physicist who went to a weekly singing group, helped tutor us and other local kids in math and science and donated more then forty hours a week at tax time to our local branch of the New York public library system. He never just did something for anyone, he made us work through how to do it while he helped and taught with other examples.

Early Childhood Education – The Best Time For Bilingual Learning

[Guest post Co-written by Emily Patterson and Kathleen Thomas]

There are many reasons for people to be interested in learning a second language.  Many may need it to work with a diverse group of people, some are learning it because of the career opportunities available with it, and others are learning it just so they can have a wide variety of communication. 

The ability to communicate articulately in a variety of ways with the widest possible audience is a unique skill that not many have.  This includes bilingual ability, especially with the culture that we are a part of now a days.

The Bilingual Future

One of the future trends that has become certain is the existence of a diverse, global society.

Family Caregiving in Egypt

[Anonymous Guest Post]

I would like to share my experience with my both grandmother and grandfather.

I live in Egypt ( male 32 years old)which is a nice country by the way. I live in a city that is on the sea shore directly. I find it dramatically that the weather here is almost fine all the year. About caring of my grand mother and my grand father, it was a hell of experience.

First of all lets talk about my grandmother. She had never went to a doctor in her early life, but later when she got older she began to suffer from diabeted milletus which is a disorder of glucose metabolism that lead to hyperglycemia due to lack or resistance of insulin in the body. This disease need treatment with either insulin or oral hypoglycemic to decrease the rising blood sugar. In our country we call is in or language "sugar", this name refers to the pathology of the disease.

Helping with Autistic Twin Girls

[Anonymous Guest Post]

When I was a sophomore in high school, I had the pleasure of babysitting a pair of eight year old twins. These girls were spunky, funny, sweet, and very strong for their age. Taking care of them meant coming home with bruises, scratches, and dirty clothes. What made these girls so difficult to take care of? Well, they were autistic twins.

At that time, I didn't understand autism very much. I did notice that the girls had slightly different facial structure, and they were very aggressive. There were popsicles in the fridge, and the girls knew this...so they would dangerously balance on a flimsy stool to reach the popsicles. When I arrived on the scene to stop them, they attacked me! They simply attacked me. And it's strange, because I knew that in their minds, they probably believed they were maybe two years old...or even younger.

Finding a Caregiver Support Group

[by Joanne Reynolds]

It’s November and we’re supposed to be celebrating and honoring caregivers. Sometimes that means that caregivers need to celebrate and honor themselves. One way that you caregivers can do that is to find a support group and attend it regularly. It’s one of the ways you can actively take care of yourselves by finding a safe place where you can share your strong feelings. At the same time you have the opportunity to give and receive advice and support from other caregivers.

Frustrated with the News

Today I'm a little frustrated with the news.  There's a lot of talk this year after the election, talk about the healthcare bill, talk about the invasiveness of the new body scanners at airport security and talk about limiting legal reproductive choice.

I can't say that I have my thoughts straight on all of this, so, at best this is a draft post.  But I can say that I am worried.  Am I the only one who sees a parallel between the Religious Right and the Taliban?

Isn't there substantial world history that points to right wing (violent and BAD) takeovers when the economy is bad?  Why do we continue to be susceptible to this?

My guess is that it's human nature to be protectionist when things are uncomfortable, meaning it's normal to protect ourselves and our families when we don't feel safe.  But at the same time, don't we all have much better visibility of the world's problems?  Of over-population, of poverty, of hunger, war and disease?  Why then, are we so stuck on whether a TSA agent can see the outline of our boobs? 

Get over it already.

Now, maybe there's an argument in the radiation.  And for that poor old guy with the pee bag, yeah, that sucks.  But still.  When I worked in women's health consumer products, it was common knowlege that American women stand out as prudish, it was for us that applicator tampons were invented and continue to be made, regardless of the landfill contribution.  Because - American women don't want to touch themselves "down there".  It's so embarassing.

Ok, now the Affordable Healthcare Act is targeted.  Not a big surprise, I guess, but isn't this the direction we are supposed to be going?  Away from old, sick, poor and unlucky folks dying in the street?  Towards civilization? 

I vote for a move towards civilization.

On a similar note, where do we think we are going with limiting legal access to safe abortion?  Back to unsafe abortion?  Towards Burkas, towards a validation of shame and repression?

Why do people gather in groups, brainstorm for a few minutes, thinking they've understood the statistics, the demographics and the circumstances and then decide to lay out their plan, in legal and morally righteous (and secular) terms and announce *their* perspective as rule of law?

I wish I was more articulate.  I wish I could write better and help people understand why things aren't so simple, help them understand why it's not reasonable to do these things.

For today, I'll just be frustrated.  And see if anyone is listening.

 

 

 

Hope and Alzheimer's Disease

[by Joanne Reynolds]

On January 1, the first Baby Boomers will turn 65, and in the process begin the first chapter of an enormous healthcare crisis.

No, it’s not about Medicare, it’s about Alzheimer’s disease, which is the only one of the top three diseases—cancer and HIV/AIDS being the other two—in which risk is heavily dependant on age. After 65, risk of Alzheimer’s climbs steeply. This disease is costing us $172 billion annually in lost income and treatment expenses. That number is expected to rise to more than $1 trillion by mid-century because the number of those afflicted will nearly triple in that time.

In addition, the number caregivers involved in the Alzheimer’s healthcare crisis will rise from approximately 11 million today to an estimated 26 million by 2050.

Sounds awful doesn’t it?

However, I want you to know there’s cause to be hopeful that the crisis may be assuaged if not outright averted.

It reminds me of another health crisis that affected us Boomers when we were children—polio. That disease took a terrible toll, but ultimately it was completely halted by the development of vaccines. The hope for Alzheimer’s patients now, and the patients of the future, is that medical science is close to breakthroughs on a couple of fronts.

Because this is National Alzheimer’s Awareness Month, the Pharmaceutical Researchers and Manufacturers of America (PhRMA) hosted a teleconference this week to which I was invited. The purpose was to discuss where American drug researchers and manufacturers are in the fight against Alzheimer’s.

While the representatives of Eli Lilly & Co., Merck and Pfizer stopped well short of announcing they had found the medication which would halt, cure or reverse Alzheimer’s, they did say that on a couple of different fronts they believe new, important medications would become available to the public in the next two years:

• Drugs that would inhibit or block the production of the protein that forms the plaque which causes the damage to brain function in Alzheimer’s patients;

• Use of a lightly irradiated molecule in brain scans to let doctors see far earlier when someone is developing Alzheimer’s. Early diagnosis means earlier treatment and better outcomes in the long-term.

While the conversation with these physicians and scientists did not include the announcement that Alzheimer’s patients, their caregivers, and the rest of us Boomers are hoping for, I believe it’s a clear indication that there’s genuine light at the end of this long and terribly dark tunnel.

Hold onto that hope. As Dr. Bernie Seigel says, “In the face of uncertainty, there’s nothing wrong with hope.”

Blessings, Joanne

She Had Alzheimer's, So They Say (Part 2 of 2)

[Anonymous Guest Post]

Since both our names were on my mother's banking stuff, we both had to sign for anything. But in order to do that, after my mother was admitted to the hospital, one of us had to have power of attorney. Reluctantly, since my sister had a car, I allowed her to be the one. We got the necessary paperwork from an attorney I knew; took it to the hospital, and convinced my mother, somehow, to sign it. We simply told her the truth - that we needed access to her money and the ability to sign for her since she no longer could.

My mother still couldn't remember how to write her name, so my sister "guided" her hand. We had it witnessed by a nurse. Done. It was then notarized, and taken back to the attorney. My sister now had power of attorney. Next step, the bank. If my mother had any money of her own, that would have gone first to her care at the assisted living center before medicare would kick in. So we did the only, according to my sister, that is, logical thing. We withdrew every cent and divided it among us. We each got about six thousand dollars. Or seven, I forget. My sister was estactic.

She Had Alzheimer's, So They Say (Part 1 of 2)

[Anonymous Guest Post]

Nine years ago it became obvious my mother could no longer care for herself. The signs had been coming for some time. She had alzheimer's, supposedly. At least that's what we thought, and what her doctor diagnosed her with.

A few years before she started taking medication for it we had taken her on vacation with us to Rehoboth Beach, Delaware. She went on the boardwalk to get some fries, and when she didn't return about fifteen minutes later I started to worry. From the beach I scanned the boardwalk. The Fry Place was right in front of our location. My mother stood there, looking around, as if she was not only lost, but unaware of where she was. That's when it started.

She moved into a senior apartment complex for those on limited incomes a few years after that. The apartment complex had security, a laundry room, and a community dining room and activity center. She was still functional at that time, able to shop, cook, and clean. But over time those abilities started to disappear. She would call me in the middle of the night and tell me she was sitting there alone, in the dark. And then silence.

OPINION

Velcro Parents? Following Kids to College?

Deliberate Choices, Directed Effort

Yoga, Surfing and Play as a Mini Vacation

Remembering Your Parents

Mommy Guilt:  The Epidemic

They all pick daisies. Learnings from coaching youth baseball and softball

Addiction, Illness and Cigarettes

[Anonymous Personal Story]

Everyone knows that quitting smoking greatly improves your health. They fail to inform the innocent bystanders of loved ones who smoke what sort of ordeals they will be put through.

This past year, my mother, whom was born in 1956, was diagnosed with COPD and emphysema. I am a twenty five year old, who is married and has a two-year old daughter. At the time, we were renting a large farmhouse in Maryland. Life happened as it always does, and I took my mother into my home because she needed a place to stay. I knew she was a pack a day smoker, but at my house she was only allowed to smoke outside.

Starting a Caregiver Support Group

[by Joanne Reynolds]

If you can’t find an existing caregiver support group, what then? Simple. Start one. It can be done institutionally, such as by an employer or a large workforce, or a church or other faith community. The basic requirement for “critical mass” is about a half-dozen people, though even three people can have a lively and effective support group. They need to be willing to meet regularly. Here are some ideas:

· Talk to your loved one’s doctor to see if that office would be willing to put out the word among other patients and their caregivers so you could gather.

Who's the caregiver?

[by Joanne Reynolds]

Do you know whether or not you’re a caregiver?

That seems like a ridiculous question, but sometimes you can be a caregiver without realizing it. For me, a caregiver is anyone who makes time on a regular basis to care for someone who’s ill, injured or suffering from a chronic condition.

The most clear example is the spouse of a dementia patient. That person is a caregiver 24 hours a day, seven days a week. It’s pretty obvious.

But sometimes the role of caregiver is less clear.

Velcro Parents? Following Kids to College?

Why this shift towards clinginess? According to Houston Dougharty, vice president of student affairs at Grinnell College, “A good deal of it has to do with the evolution of overinvolvement in our students’ lives. These are the baby-on-board parents, highly invested in their students’ success. They do a lot of living vicariously, and this is one manifestation of that.”

In response, many universities are developing “goodbye” ceremonies to help give a subtle, and sometimes not so subtle, hint that it’s time to go. Some have luncheons for parents, so students have a chance to meet their new roommates without interference. One college literally closed parents outside the gate. In the age of texting and Skype, parents can still have a lot of interaction in a student’s daily life, but colleges and universities are doing what they can to send the message to parents that it’s time for the students to start developing independence.

Health Care on the Ballot. Will you vote Yes, or No?

[By Kirsten]

Today is election day, November 2nd, 2010. 

In Santa Clara County, CA there are a variety of measures on the ballot, a Senate race, US House and State representatives, a gubernatorial race and contests for a number of other state positions.

For Democratic supporters, today is forcasted to be a difficult day, the depth of which will be measured by how deep the losses in Washington go.  It's not surprising, with the slow economic recovery continuing to impact countless people, in all aspects of life, from housing and education to jobs and healthcare. Many voters will not support the incumbent in hopes of bringing something better to bear.

On a national level, shifts in power in the house and/or Senate will mean less support for affordable healthcare through the 2009 Health Care Reform Act.  It will also mean less support for choice, through the continued erosion of public funding, support of abstinence only education, as well as non-secular legislation and shifts in supreme court confirmations.

Caring for a friend with Borderline Personality Disorder (BPD)

[Anonymous Personal Story]

The year was 2005. My longtime, close friend Evelyn had been committed to a mental institution in Northeast Iowa after having fallen on tough times and being evicted by her family. The story is a long-one, so I'll try and be concise.

Evelyn and I had a history together. We were raised inside a closely knit community where every family knew each other (and the friends we made were like our siblings). And from that close connection at an early age, she and I began cycling between friends and lovers throughout our teens.

DEMENTIA ACROSS THE GLOBE

[by Joanne Reynolds]

Sept. 21, was world Alzheimer's Day. My personal belief is that we should make this a day devoted to all forms of dementia, rather than singling out just this one form of it. All dementia is devastating on the patients and their families. All dementia is extremely stressful for the caregivers involved.

(A quick aside: October is Breast Cancer Awareness Month. Here, again, I think that’s too exclusive of the many other forms of cancer. This should be a month devoted to awareness of all forms of cancer.)

However, we are talking about Alzheimer’s Disease and the other forms of dementia. Here are some thoughts to ponder from World Alzheimer Report 2010 released by the Alzheimer's Disease International (ADI) through the U. S. Alzheimer's Association:

He promised he would never put them in a nursing home.

[Anonymous Personal Story]

I am originally from Long Island, New York but in 2002 I moved to Seattle, Washington. When I turned 36 I met a man and knew I had finally found the “ONE”. But first we shared something in 2006 that made our relationship stronger. I began caring his terminally Father.

I had the rewarding experience of taking care of him in his final months with his body so riddled with cancer the only option was to make him as comfortable as possible. I do regret however, that I never knew him before he got sick because the strength he showed even in his final days would put most healthy people to shame,but he never once complained, not even on his worst days.

Autistic Man Moves Back Home with Parents, with Positive Side-Effects

[Anonymous Personal Story]

My mom and dad are a study in selflessness when it comes to caring for my special needs brother. Now 21 years old, my brother was adopted at the age of 2 months. No one knew anything was wrong with him at the time, but at the age of 5, he was diagnosed with pervasive developmental disorder, a disorder on the autism spectrum.

John has been in group homes for the past 7 years, visiting his parents every weekend. Recently, however, it became obvious that his needs were not being met in this setting. The clients living with him were severely handicapped, but John craved conversation and interaction with "normal" people. At this point, my parents decided to have John move back home with them.

This miracle baby was not supposed to survive.

[Anonymous Personal Story]

I am a 31 year old woman living in central NY, but 5 years ago in Chicago, our son was born.

Unfortunately, for no known or predictable reason (I was even checked the day before I went into labor, and no one anticipated any problems!), he was born two months prematurely and with a blood disorder called hemolytic anemia further complicating the health issues of prematurity, so it was a few days before we could even reach into the little box keeping him alive, find some skin not covered with tubes, wires, cords, monitors, tape, splints and other apparatus, and touch what should still have been inside of me.

It was a week before we could hold him, a blanket tightly swaddled around him, trailing an umbilical cord of electronics that connected him to his new, acrylic womb. It was a solid month of time in the NICU before we could bring him home, even briefly, before his next inpatient stay at the hospital.

The Landmark Forum

[by Kirsten]

Last weekend I attended a self improvement seminar called "The Landmark Forum".  In their language, you might say that "I participated in the landmark forum."  Because of it, I honestly  feel changed for the better.  At the same time, I'm tired. Maybe from learning or from working hard or maybe because I feel energized and have been pouring my energy into my traditional work and into my primary relationships.  So, needless to say, I've been offline for a few days.

I'd like to describe the experience I had with the forum.  It's a funny organization in a number of ways.  Primarily, it is controversial because it's seen by some as a "cult".  I can't really speak to that since I don't know much about cults, but I find it hard to believe that this little program could be that.   I have read that the content has roots in the 70's "EST" movement, and I think I read that it's been outlawed in some countries.  Admittedly, there is a strong sales element to the workshop, and that it involves the recruitment of family and friends.

Keeping Your Caregiving On Track

[by Joanne Reynolds]

Elder caregiving is a complicated enterprise, as most of you already know. Just staying on top of the medical appointments and general care while you try to juggle your “regular” life is probably about as much as you can manage.

But caregiving to someone with on-going medical problems calls for you to move into a higher level of care, and that’s where tracking comes in.

One of the workbooks that I’ve created is The Medical Journal, which contains pages for everything from your loved one’s health history to calendar templates so you can track appointments, to lists on which you can track all of the prescription medications, over-the-counter (OTC) drugs and supplements that your loved one is taking.

A Motivated Mother Helps Her Medical Team Find Solutions

[Anonymous Personal Story]

 Born two months prematurely in a Chicago, IL Springtime, when I was 26 years old, our now five year old son grew well on my milk, and grew strong; I nursed him, and then bottle-fed him from pumped milk, until he was old enough that his body metabolized the milk too quickly to pull enough nutrition from it.

The trouble was that his prematurity left him neurologically disabled, and though his feeding issues were not considered severe enough that he was fitted for tube-feeding, they were severe enough that it might have been the only way to get enough nutrition into him without relying purely on artificial measures. He simply could not handle eating enough things, and in enough quantity, for a balanced diet whatsoever.

Stepping up to take responsibility, a young man helps his family

[Anonymous Personal Story]

I am living in India. I am 20 years old. I am the elder of my family with two brothers. So, i have the responsibilities to take care my house. In the last 4 years i had many experiences with my families that i took care.

In september 27th before the couple of weeks i had a heart breaking experience with my Grandfather. Already he had a Blood pressure and sugar problems and also he was very sick on that day. After We finished our dinner we slept in the night. In the mid-night there was a big sound I heard, suddenly we got up. Really I did not get up. My mother only called me because I have so tired on the day of my works in my company.

Caring for my Mother with Alzheimer’s Disease

[Anonymous Personal Story]

I am a 40 year old woman living in Chicago, Illinois. At the very young age of 65, my Mother began showing signs of dementia, which was ultimately diagnosed as Alzheimer’s disease.

I was her primary care-giver during her five year illness.

Once the diagnosis was confirmed, we had a lot of decisions to make, as you can imagine.  The best thing we did was to read a book about the disease and what to expect. The book I chose and felt was excellent was “The 36-Hour Day”, although I am sure there are many other excellent references out there. This book not only prepared me for what was to come, but gave me great advice about how to deal with things.

Affectionate Daughter In-Law Provides Proper Care

[Anonymous Personal Story]

This narration is about my mother who set up a unique example of sincere and dedicated care, she took of my grandmother; i.e. her mother-in-law.

There is a general notion about the adversities this relationship goes through. But my mother defied all the prejudiced sayings and wholeheartedly took proper care of my grandma. Our family is a nuclear kind, where I used to live with my young brother and mum and dad. Our grandmother use to live in the village at her native place. But after the demise of grandpa, she was left all alone.