Every caregiver takes the same path I did — from denial . . . to acceptance . . . to overcoming whatever the unique caregiving challenges are.

I have walked in your shoes. You are not alone!

Here are some of my favorite quotes to help you on each part of this journey.

DENIAL

It’s not denial. I’m just selective about the reality I accept.

~  Bill Watterson

You will find peace not by trying to escape your problems, but by confronting them courageously. You will find peace not in denial, but in victory.

~ J. Donald Walters

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ACCEPTANCE

Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.

~  William James

A wise man adapts himself to circumstances as water shapes itself to the vessel that contains it.

~ Chinese Proverb

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OVERCOMING CHALLENGES

Beginners and outsiders are open to possibilities and don’t make assumptions. By extension, they’re often better at finding solutions the experts have stopped seeing.

~ Michael McMillan

Opposition is a natural part of life. Just as we develop our physical muscles through overcoming opposition – such as lifting weights – we develop our character muscles by overcoming challenges and adversity.

~ Stephen R. Covey

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Photo Credit:  richardefreeman’s photostream

This Associated Press (AP) headline on the computer caused me to raise my eyebrows in surprise:

“News of High Alzheimer’s Risk Doesn’t Devastate”

Could this really be true?

The article summed up the results of a study funded by the National Institutes of Health and published in The New England Journal of Medicine on July 16, 2009:

People who learn through genetic testing that they have a higher than average risk for Alzheimer’s disease are able to handle the bad news pretty well, results from the first major study of this suggest . . . . But they challenge assumptions that people will be devastated by a positive test result and misread it as certain proof they’re doomed to Alzheimer’s. . . .

The study measured anxiety, depression and stress levels in 162 healthy adults who were children or siblings of people with Alzheimer’s.  The participants were in the early 50’s, on average. Most wanted to know if they had the gene, and people who already had severe anxiety or depression were not included.

Yes, this was published originally in a scientific journal.  And, it is telling people only that they have a higher than average risk (not 100% certainty) they will get the disease, but I find it hard to believe the participants handled the news that well.

A Response at the Other End of the Spectrum

In Behind the Mask, Helene Moore writes about receiving the news alongside her husband, Howard, that he has “probable Alzheimer’s disease” at age 63.

We are no longer smiling. I feel as though a mule has kicked me in my stomach. Emotions race through me like sand through a sieve. Anguish. Pain. Anger. Terror. Oh my god, Alzheimer’s. Not that! Not Howard!. . .

I swallow my tears as my heart pounds in my chest. I reminded myself to stay clam, strong, and centered. What was my poor lover feeling? Please God, help us.  I feel like Alice in Wonderland, hurtling down a dark spiraling tunnel into a deep void. Could I wake up from this nightmare?

We made our way outside the doctor’s office where we stumbled wordlessly into each other’s arms, both of us trying to shield the other from the force of this cruel blow.

We cried from the depths of our souls.  We cried for a future that was a death sentence for both of us. . . .

I no longer noticed the sunshine nor felt its warmth.  I couldn’t smell the flowers, although I knew they were there.  How could the world be so unchanged while our lives were thrown into intense turbulence?

Moore’s book is the secret journal she kept when she became a caregiver overnight for Howard, and how she handled the unusual caregiving journey they went on together.  It is a fascinating story of love, courage and hope which all caregiver families can learn many lessons from. More information about it is available on Moore’s web site.

My Response to My Mom’s Diagnosis

I was getting ready to play in my first ever doubles tennis tournament one evening, when the phone rang.  It was my Dad giving me the news that their family doctor told him that day that my Mom had Alzheimer’s disease.  (I had observed her memory problems during our cross-country visits, but not knowing anything about dementia or Alzheimer’s, I chalked them up to normal aging.)  What a bombshell for us!  I don’t even remember most of what I said during the rest of the conversation, other than I was as supportive as I could be 3,000 miles away and told him we would get through it together.  I then went out to play in the tennis tournament, but my body just wouldn’t do what my mind was telling it to do in order to play decently.  To this day, I’m sure my doubles partner wonders what the heck was wrong with me that night! Now you know, Diane.

If you or a loved one has received an Alzheimer’s diagnosis where did you fall on this continuum of reactions?

If you’re a child or spouse of an Alzheimer’s patient, would you have genetic testing done to learn how high a risk you are for contracting the disease?

Let’s discuss in the Comments below. . .

I “met” Mary Nix when she left comments here at TLeC and I visited her blog, EldercareABCBlog.com.  In one of her comments she explained she is a caregiver not only for her aging parents, but also for her younger sister.  Since that sounded unusual, I asked if I could interview her about her family’s story.  I’m very pleased to bring you this informative and touching caregiver interview.

How and when did you become a caregiver?  Please tell us about your care recipient(s).

When my younger sister was six years old, she was diagnosed with Cornelia DeLange Syndrome at the Cleveland Clinic. To this day I recall my parents’ conversation concerning her diagnosis and the Cleveland Clinic Doctors’ suggestion to put her in an institution.  They wanted to do what was right by all of their children and their final decision was to keep her with us at home. At the time I was eleven and I recall being greatly relieved by their choice.  Certainly, that isn’t to judge the fact that other families do choose that option, but for me, I just knew I didn’t want my little sister to leave our home. Growing up with a developmentally delayed sibling definitely helped prepare me to become a caregiver in many ways.  You are naturally protective, but you also learn the necessary advocacy skills that protecting the vulnerable brings.

Later when my future husband brought up marriage, we also discussed that someday my life would involve caring for my sister, so I guess caregiving has always been in the back of my mind.  For many years we searched for a duplex that would meet our needs as my parents and sister grew older and would need more assistance.  Never finding a neighborhood we loved as much as my parents’, eleven years ago, when they were 71 and 78, we added an addition that changed my parents‘ home into a duplex.  Shortly after that, Mom was diagnosed with Colon Cancer and my caregiving duties began when she returned from the hospital after a successful surgery.

Linda’s response:  Your childhood experiences certainly made you aware of caregiving at a young age, and prepared you for elder caregiving later in life.  Those are important insights that many adult children don’t have as they start their caregiving journey.  The description of your parents’ decision about keeping your sister at home with the family reminds me again that placement outside the home is never easy, no matter the age or which family member it’s being considered for – child, spouse, sibling or parent.

What do your caregiving responsibilities consist of on a daily, weekly or monthly basis?

Daily I cook dinner for my folks and run errands for them.  On any given day I may accompany one of them to a healthcare appointment to be an extra set of ears as they don’t hear as well as they used to. I also help them track their medications, refills, socialize with them, track doctors appointments and necessary procedures. If they get ill, my duty lists grows.

Linda’s response:  Being that extra set of ears is also part of being your Golden Oldies advocate for health care.

A couple of times a week I spend time with my younger sister going shopping, looking things up on the computer or just hanging out. It is a nice time for both of us.

When she was tested at the Clinic, it was explained that the part of her brain that comprehends things was fully developed, but one of the areas there was a delay in was communication and the ability to communicate.  I can only imagine how hard it has been on her for part of her brain to truly understand her situation, but the other to not be able to explain it all.   When she was very young we all took sign language, which helped her a great deal.

As an adult, her ability to express herself has improved, she has a great sense of humor and she is really a hoot to spend time with.  One thing I’ve seen over the years is that due to a lack of understanding, many people assume a lot of things about the handicapped.  This includes the field of medicine.  My Mom and I are involved in a group that is headed up by our family Dr. that will be creating educational videos for medical school students and other doctors on how to treat the developmentally delayed population. It is a very exciting project to be a part of and I am thankful that Mom’s lifelong activism continues.

Linda’s response:  In two paragraphs you have opened up an entire world of caregiving I’ve had no exposure to.  It adds another perspective for us who care only for Golden Oldies – and I suspect it is a caregiving experience with more similarities than differences.  I think the medical profession needs to be educated more on how to treat the senior population, and their caregivers, as well.

If you presently work (full or part time), how do you manage the time commitment involved in caregiving?

I work for EldercareABCblog.com, Home Education Magazine and run a web business with my husband.  All of these entail work at home, so I am extremely blessed to be able to adjust my schedule when needed, but I do keep a huge calendar on my wall to coordinate all of our endeavors.  I get up early and go to bed late!

What are some ways your life has changed since you became a caregiver?

I had always considered myself to be organized, but as my caregiving responsibilities have grown I’ve learned to not only organize, but also to prioritize!  I have also learned to let go of the fantasy of a perfectly clean house.

What is the most challenging aspect of caregiving for you?

I have had to learn to relax no matter what circumstances we are dealing with.  I’ve never had an affinity for nursing and medical emergencies always caused me great stress when they came up.  As an adult, I took CPR and Red Cross classes to try and overcome my uneasiness, but it wasn’t until I had to deal with repeated situations that I realized I had better learn to go with the flow.  We’ve had times of quiet when all is well and other times where both my parents were hospitalized.  We also have the situation of my handicapped sister who needs care in the midst of such situations, so it was either sink or swim and I chose to swim. As a caregiver I had to learn when to say no and to take care of myself so I could continue to offer care.

What is the most rewarding or enjoyable part of caregiving for you?

My parents and sister are kind, passionate and fun individuals to spend time with, but I think the most rewarding part of our journey has been the daily interaction my boys enjoyed growing up with that unconditional love and input from them.

Linda’s response:  I love the multigenerational interactions your family situation created.  There is a special bond between grandparents and grandchildren that is unique and precious.  Also, Mary, you are modeling for your sons how to be an extraordinary caregiver!

What do you do to take care of yourself to prevent caregiver burnout?

I’ve certainly experienced burn-out, so I’ve learned the hard way that if I don’t prevent it, I’m only hurting myself and my family. I’ve learned to advocate for myself, to take care of my health, exercise and to make time for my interests and hobbies.  I learned this after the time both parents were hospitalized and I felt like I was at the end of my rope.  It’s a real balance, but I sought and found support and learned more about resources that were available to us.

Linda’s response: It’s too bad you had to reach that low point. Can you elaborate on the support and/or resources you found when you reached burnout? Not everyone may have the same resources available, but perhaps it will spark ideas for support they haven’t thought of yet.

My husband and kids knew I was reaching a low point, so they kept on me.  I did look into going to a local support group, but I found that every time there was a meeting we either were in the midst of a crisis or had an appointment that could not be changed.  I found a great deal of moral support from visiting different online caregiver groups and by talking to friends who were in similar situations.

Our family doctor at that time was proactive in my care as well.  He helped me to learn to accept those things I could not change and to seek out and find the resources I needed to change those that I could. He and my husband both encouraged me to talk to my parents about my limitations.  This was difficult for me, as I did not want them to feel that they were a burden in any way.

I finally did approach my Mom and as often has been the case in my life, she was my biggest advocate. I told her that as often as we joked about us switching roles and me mothering them, I didn’t want that switch. I loved providing care, help and nurturing, but I still wanted and needed them as my parents. Maybe not in the role they had always played, but their wisdom and guidance were still very much needed. They were relieved that I had brought my being burnt out up, as they had been seeing my stress and that caused them to feel like a burden, even though it was not my intent.  By discussing our situation, it freed us all up to be more frank, to set boundaries and to know when we needed outside resources and when we did not.

Linda’s response:  I suspect those frank discussions with your Mom (and Dad) were difficult to have, yet so important and powerful in their outcome, both for your well-being and theirs. Just reading about it, imagining the conversations, brought tears to my eyes, Mary.

There were times that I did not understand some of my sister’s occasional issues, which added to my burn-out, so I contacted a group called Welcome House that my Mom helped to create in the 70’s. Welcome House provides group homes for handicapped adults and they offer training for their caregivers. They generously allowed me to sit in on some of those classes and I learned some great caregiving and coping skills from them that also eased my burn out.

Linda’s response:  Wow!  How ironic it is that your mother helped to create this group, not realizing that her other daughter would be a recipient of her benevolent efforts so many years later.

What, if anything, do you use for inspiration or motivation during the more difficult times?

I try and count my blessings and remind myself that I can’t control everything.  I was shocked into reality in June of 2004 when my 52-year young husband suffered a massive heart attack.  I can remember almost every moment of that night, the ambulance ride, my children’s faces and the E.R. doctor who told me my husband’s attack was called a widow maker and most individuals don’t make it through.  We were prepared for our lives to change drastically, but we were blessed to have some of the best surgeons in the state and they just happened to be finishing up another surgery at midnight that evening and saved my husband’s life.  That night profoundly changed me.  It was no longer my parents who were immortal, but I saw what ‘could’ have happened to my husband and I saw that the little irritating issues were no longer important.

Linda’s response:  I am so sorry your husband and family had to deal with this scary health crisis and glad it had such a happy ending!  Things like this do put things in perspective, that’s for sure.  May his good health continue for many years to come!

What is the best caregiving advice you’ve ever received?  Given?

Take care of yourself so that you can care for others.

Can you talk about what types of caregiving living choices exist where you live, which one your loved one(s) chose and why? For example, in California, there are a range of assisted living arrangements that Golden Oldies may select from if they do not move in with their family.  They range from independent living, to some assistance, to board & care homes, dementia care, and nursing homes.

There are independent living communities here that offer full independence, to some assistance and are usually attached to a full-fledged nursing home. They seem like a nice choice as individuals can move from one level to the next within the community.  I haven’t heard of any board and care homes here, but we do have a nursing home a couple of blocks from here that is a beautiful facility. One half is the nursing home and the other is the dementia facility.  We chose to build our duplex to help my folks live here as long as possible and to be here to help care for my developmentally delayed sister.

The group I spoke of above, Welcome House recently built a new home, the Michael T. George Center that is designed to serve the aging developmentally delayed population.  We were there for the groundbreaking and visited its grand opening and I wish EVERY home for the elderly could be built this way.  It is so homelike that it seems more like a resort than a nursing home.

Linda’s response:  I must admit, being focused on caring for aging parents and relatives, I never thought about the resources our country, and the world, must create for the aging developmentally delayed population as well.  Thanks for raising our awareness about this very critical arena!

Do you have any other tips or resources you would like to share with the TLeC community?

Just as our children are not born with an accompanying guidebook, neither are our aging parents.   When I was a new Mom I found great support within the La Leche League Community.  I always suggest that caregivers find those in a similar situation near them or online to get the support and ideas needed to help them along the way.    Whether caring at home or in assisted living – these issues take time during an already full time in a caregiver’s life.  With a little planning, community and tips and tricks from others we are able to move forward successfully caring for our mature family members.

Thank you for being so open and honest about your life from childhood to the present day.  I’m certain your experiences and wisdom will help other family caregivers in many, many ways!

Thank you for inviting me.  I have done many interviews, but I have never been interviewed before!

Although my boys are both in college and no longer homeschooling, I continue to do a bit of writing for Home Education Magazine.

The majority of my time is spent working with EldercareABC, Inc. It is a wonderful group that has been created by Steve and Sandy Joyce.  Steve and Sandy helped care for Steve’s folks in Ireland for ten years and Sandy’s Mom before she passed away.  Although we have never met in person, they offer a great deal of support to me as well. Their site truly is created by caregivers for caregivers.

Please write your questions and/or comments for Mary Nix in the Comment section below.

I am so proud and happy to share this news with you!

I’ve won a “Caregiver of the Year” Award from Caregiving.com!

You can read the criteria Denise Brown (Caregiving.com’s CEO) used to select the winners, along with our stories here. (Once you get to the website, click on the names to read our unique caregiving stories.) I am honored to be one of three winners selected for 2008!

When my dear husband wrote down the many little things I do as a family caregiver in the letter nominating me, he made me sound like someone exceptional. But really, I’m not.

Every caregiver does what I do, and often more!

Every caregiver has the same worries I do . . . and probably more on certain days.

Every caregiver juggles multiple roles.

And every caregiver means the world to their care recipient!

Not every caregiver wins an award like this, but if you know a family caregiver, please tell him or her they are appreciated and that you “get” it.

You get the worrying.

You get the hard work they are doing.

You get the love they’re pouring into their care recipient’s world as well as the greater world at large. (And we certainly can use more love in this crazy world!)

Then take the time to give them some love, caring and recognition back! Believe me, all family caregivers can use it!

Thank you again to Denise Brown and Caregiving.com for this wonderful honor!

And thank you to my sweet husband, Jeff, for “getting” it!

Ramana Rajgopaul and I “met” in the blogosphere in November 2008 when he wrote in a comment here that he was “a caregiver of sorts.” I went to his blog, Ramana’s Musings, to investigate what he meant. His multigenerational family lives in Pune, India and he is most definitely a family caregiver!

I knew immediately I wanted to interview him, both to learn about caregiving in another part of the world, and to get a man’s perspective on caregiving. (In the U.S. where I live, statistics show that more women are caregivers than men.) Ramana graciously accepted the invitation to be “grilled” by me and I hope you enjoy our “talk” as much as I did!

So without further adieu, I’m very happy to introduce (right to left) Ramana Rajgopaul, his wife, Urmeela, and his father, Senior Rajgopaul.

Welcome to Tender Loving Eldercare, Ramana. Please tell us how and when you became a caregiver.

My present care giving experience started eight years ago when my wife had multiple cerebral and cardiac infarcts (or mini-strokes). Since physically she was enfeebled (weakened), any kind of surgical intervention was not advised and her life had to be ‘medically managed’. Since her memory function was affected, she was not capable of managing this by herself. I had two choices – to provide for a live in professional caregiver, which in India is quite common, or look after her myself. My wife decided the matter by completely rejecting the first option. I therefore gave up my lucrative career, retired from active corporate life and became her caregiver. She is completely dependent on me and gets paranoid if I am away from her for more than a few hours. Otherwise, she is no strain on me either physically or mentally.

In the most recent instance, my 91 year old father was living with my step mother in a town about 1500 miles south of where we live. When my stepmother passed away three months ago, he had no one to look after him and I got him over to come and spend the rest of his life with us. He does not need much looking after but does need to be provided with company, food on time, support when he goes out, etc. He is hard of hearing and I have to answer his phone calls and be at hand when visitors call on him.

What do your care giving responsibilities consist of on a daily, weekly or monthly basis?

Seeing that all possible comforts are provided — for example, seeing that there is always hot water available in the bathrooms, beds are made and their clothes laundered and shelved, wholesome and nutritious food is provided on time etc.

Seeing to proper administration of medicines in the correct dosage and on specified times.

Arranging for, and accompanying to pathology tests, Doctors’ appointments and arranging to fill in prescriptions.

Accompanying and urging physical exercise as advised by the physicians.

Answering and making phone calls to friends and relatives who wish to keep in touch with both of them.

Seeing that neither faces any embarrassment due to lapses in memory, particularly with respect to names and places.

Linda’s response: How do you manage to prevent embarrassment for both of them, Ramana? That doesn’t sound easy to accomplish.

By calling people by their names often while talking, taking over the conversation when they falter etc.

If you presently work (full or part time), how do you manage the time commitment involved in caregiving?

The little work that I do, I do from home. Mostly on the phone and with the computer and broadband connection, it is not too difficult to attend to both.

What are some ways your life has changed since you became a caregiver?

I have become tied to the home/city and have stopped my major social activities like visiting the club, attending and giving parties, social work, volunteer work etc. On the positive side, I get more time to read, solve crossword puzzles, blog and mentor a few young entrepreneurs.

What is the most challenging aspect of caregiving for you?

Just being around, wherever they are, home or outside the home.

What is the most rewarding or enjoyable part of caregiving for you?

The sense of joy, that I am able to do something for both of them.

What do you do to take care of yourself to prevent caregiver burnout?

I have not yet experienced it and doubt that I will in the foreseeable future.

Linda’s response: I hope that you are correct about this, and continue to remain aware that it could happen as time passes.

Yes, and let us hope that it does not happen. If it does, I shall cross the bridge when I come to it.

What, if anything, do you use for inspiration or motivation during the most difficult times? (Those times most caregivers have experienced — when you feel you just can’t do it anymore.)

I find the time to increase my meditation sessions.

Linda’s response: Do you increase your sessions in frequency or length? Can you explain to us in what way(s) meditation helps you?

Both. Meditation helps me to be more or less equanimous. I have been a meditator since 1978 and I follow the Buddhist technique of Vipassana. This technique enables the meditator to be in a state of equilibrium and increases his awareness levels. I find these applicable to me too. My blood pressure is below normal (100/80) as a natural consequence.

What is the best caregiving advice you’ve ever given? Received?

Giving care, ensure that you do not become a case needing care.

Linda’s response: This is excellent advice for all family caregivers. Unfortunately the caregiver often becomes ill or dies before their care recipient does.

I hope that it does not happen to me!

Linda’s response: I do not wish that on you or any caregiver. That is why we must remain vigilant about caring for our needs, too.

Can you talk about caregiving options in India vs. the US where I live? Do the majority of families have their Golden Oldies move in with them? If not, are there a range of facilities available for their parents to move to based on their level of functioning? For example, in California, there are a range of assisted living arrangements that Golden Oldies may select from if they do not move in with their children. They range from independent living, to some assistance, to board & care homes, dementia care, and nursing homes.

We have such facilities in India too. We also have relatively inexpensive live in professional caregivers who come from agencies on rotation. I personally would not like to expose my wife or my father to any such facility. Others do, and I do not think that it is bad, just that their compulsions may be different. At the end of the day, each of us has to make our choices. I am blessed in that, my problems started when I could afford to retire and provide the care needed by my wife. I was also physically and mentally capable of doing that. Not everyone is so lucky.

By and large however, in India, Golden Oldies living with their offspring is the rule rather than the exception.

Linda’s response: I salute your self-knowledge and positive attitude about your decision. Being grateful for what we have is sometimes difficult for caregivers to do.

Thank you.

Are there any other cultural differences about family caregiving that you observe from your perspective, Ramana?

None whatsoever. Let me illustrate. My sister’s father in law and mother in law both needed care. My brother in law is their only son. In our culture, parents normally do not stay with daughters. My sister gladly did what was needed and when my mother, during her last stages, needed to be provided care, she gave it to her too with the total support and assistance from her husband. Very similar to what you and your family are doing.

I do not think that human beings can be culturally different when it comes to being human. The more I come across other care givers, the more I am convinced that language, religion, nationality or any other categorization, can make someone different in this particular aspect.

Linda’s response: This is beautifully written, Ramana! You’ve taught me that no matter where we live geographically, nor what gender we are, it’s the shared human experience that connects caregivers throughout the world. Thank you for telling us your unique caregiving story. Your wife and father are very blessed to have you caring for them! I wish you and your whole family many more years of love and joy!

Please leave your comments and/or questions for Ramana Rajgopaul or me below.

Read more about Ramana’s world and thoughts on his blog, Ramana’s Musings, or subscribe to his RSS feed here. I love his intriguing tag line “Wisdom by Hindsight.”

UPDATE: On March 15, 2009, Ramana wrote this message on his blog:

I have the sad responsibility of informing my readers of the unexpected passing away of my wife Urmeela on March 13, 2009.

The end was sudden, painless and I was with her when she passed away.

A measure of her universal appeal was at her cremation, Hindus, Catholics, Protestant Christians, Sunni Muslims, Shia Muslims and Atheists were present to bid her fond farewell.

None of us have the slightest doubt that her soul will rest in eternal peace.

You can see a beautiful photo of her and read the loving tribute Ramana wrote about Urmeela here.  My deepest sympathy goes out to you, Ramana, your son, Ranjan, and your entire family!  May her memory be a blessing.

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If you are a family caregiver and would like to be considered for an interview, please use the contact form available above. Thank you!