Tender Loving Eldercare» caregiving

The Iron Lady, Dementia and Caregiving

Linda Abbit — Mon, 06 Feb 2012 15:45:24 +0000

I went to see this movie expecting to learn more about British Prime Minister Margaret Thatcher’s life story, with the emphasis on her place in British history and politics. I knew she must be a unique person to have achieved the position of Britain’s only female Prime Minister to date. What I didn’t know I would also see was the intimate portrayal by Meryl Streep of Thatcher as a now elderly woman living with early memory loss. The depiction of that part of her life story is more important and touching than what we can read about in history books and newspapers.

While we can’t actually know what dementia is like unless we also have memory loss, I believe Meryl Streep’s portrayal of the disease must be close to accurate. I don’t recall any movie I’ve seen that shows dementia from the point of view of the patient, from the inside looking out. We feel Thatcher’s sense of confusion as she drifts from her present reality to memories throughout her life, of happy times with her husband, Denis, and their two children.

I believe dementia patients live with a huge amount of fear. Imagine if your everyday surroundings were no more — if your familiar home came and went from day to day, or hour to hour? If you had no sense of security in your environment? If you no longer could recognize those that are with you every day?! We feel her fear, which manifests itself in paranoia as she “spies” on her household staff that seem to be talking about her when she’s not in the room.

We understand Thatcher’s loneliness through the flashbacks with her husband and children. The deep loss she lives with after the death of her husband, Denis, is shown as she carries on imaginary conversations with him repeatedly. And the reluctance but resolve to accomplish the challenging feat of going through her late husband’s belongings is portrayed realistically. Doing that task has got to be incredibly difficult, emotionally and physically, especially for an older person who was deeply in love with their spouse.

Thatcher hallucinates a lot in this movie. While that is a possible symptom of dementia, I think the frequency of them in the movie is partially the director’s way of story narration. The conversations and vignettes with Denis add depth to the story, and seem to be a combination of hallucinations and memories.

I was touched by how Streep shows the “Iron Lady” is also a frail elderly woman, or Golden Oldie as I prefer to call them. There is one scene that also demonstrates how many senior citizens are “invisible” to society. Thatcher manages to slip out alone from her home to go to the grocery store, and no one recognizes her as the powerful Prime Minister she once was — she is simply an “old woman” buying milk in the grocery store. She could be anyone’s grandmother as she is jostled slightly while waiting her turn to pay, and then walking carefully outside on the street back to her home.

Other aspects of the film are how her children treat the aging Prime Minister and the depiction of a family caregiver. Thatcher’s son, Mark, lives in South Africa with his family during the time of the movie and is not present in the movie except by phone and in flashbacks. Her daughter, Carol, takes on the role as her primary caregiver. Carol helps her mother with day-to-day activities, coordinates care with Thatcher’s house staff, takes her to her doctor’s appointments, protects her frailty and dignity, and is clearly worried about her mental decline. While we sense Carol’s frustration as she has to take on the parental role, for the most part, she doesn’t let her mother see the angst she feels. She is a good overall role model for other designated daughters and sons seeing this movie. One sibling acting as primary caregiver is often the norm these days with families living spread out throughout the globe.

Did you see this movie? How realistic did you find Streep’s portrayal of a once-strong woman now in her 80′s with evidence of dementia setting in? Please share your comments below.

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Photo Credit: Axel Schwenke’s photostream

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A New Year, A New Perspective on Caregiving

Linda Abbit — Thu, 02 Feb 2012 09:00:57 +0000

Today is Groundhog Day in the United States and Canada. Along with the famous groundhog, Punxsutawney Phil, I’m coming out of hibernation, too!

While I haven’t written here for over a month, my mind’s been whirring with ideas and I’ve been busy planning new, additional features for Tender Loving Eldercare (TLeC).

Why? It all began because . . .

I Became a Caregiver Again

Back in November, my son, age 22, had wrist surgery and I was his full time caregiver for one week post-surgery. From this experience, I was reminded of some prior, and gained new, perspectives about caregiving:

Care recipients are people of all ages, with many different physical, cognitive and/or emotional problems. While my hands-on caregiving experience until November had been with my elderly parents, there are many caregivers lovingly helping people of all ages, with varying levels of health, and in different living arrangements.

Not all caregiving is long-term. Some caregivers only serve for short periods of time, and their daily work can vary from mild to very intense care.

We are also “caregivers” to our pets as they age.

Caregivers are champions of practicing thoughtfulness.

How Did My New Caregiving Experience Impact Tender Loving Eldercare?

After an 18-hour day caring for my son, I’d go back to my hotel room and collapse, both physically and mentally. I needed to unwind in a big way. I needed to re-charge my batteries quickly, get some sleep and be refreshed before my alarm went off before dawn the next morning.

I needed a quick fix of inspiration or motivation, either before bed or when I first awoke in the morning. I realize ALL types of caregivers need that OOMPH to help get them through a long, challenging day! So, while I will continue to write informative, how-to posts about caregiving, I’m expanding my role to become a Caregiver Cheerleader for our TLeC community! No matter what type of caregiving you’re doing, I hope a dose of positivity wil help you on your journey.

How I Will Accomplish This New Goal?

There will be more posts about inspiration and motivation. I will also bring back the popular Friday Funnies, as laughter is always better than tears.

We will present more positive thinking strategies for caregivers to use. (And even if you’re not a caregiver currently, won’t you enjoy some positive thinking tips?)

I will highlight more “Golden Oldies” stories, because my passion for the older generation has not waned. As a society we need to recognize and celebrate their accomplishments and wisdom. This will also include the portrayal of elders in the media and the arts, both pro and con.

Because we are all bombarded with mobile technology and social media, I will also focus more on how technology can aid caregivers, care recipients and their families.

If You Are Already On TLeC’s Email Subscriber List

I will be emailing you about special reports and guides I am writing to help you on your caregiving journey, with early-bird notification before they become available for purchase elsewhere.

If you’re not already on the TLeC email subscriber list, you may want to join now by filling out the brief form found in the top right hand corner of this page, under the words “Caregiving Guide — It’s Free.” When you sign up, you instantly receive the free report about five important caregiving lessons I learned, as a thank you gift for joining our community. You may unsubscribe from this list at any time, and I totally respect and guard your email privacy.

Last But Not Least

If you know any other caregivers who might use even a little bit of inspiration or motivation, please share Tender Loving Eldercare with them. If you have any other topics you’d like me to cover, please feel free to write them in the Comments section below.

Thank you and I hope you are as excited as I am about the new additions to come!

Now . . . I wonder if Punxsutawney Phil sees his shadow or not? :-)

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Photo Credit: tachyondecay’s photostream

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What Do Caregiving and an Empty Nest Have in Common?

Linda Abbit — Mon, 11 Jul 2011 12:00:11 +0000

Getting married and becoming a spouse.

Giving birth and becoming a parent.

Watching your adult children move away and becoming an empty nester.

Seeing your parents age and becoming a family caregiver. (Then doing it again possibly for your spouse.)

These are all major life transitions that schools don’t give classes in! Most of us never have the opportunity to learn the basic how-to’s about these long-lasting roles and responsibilities we take on during our lives.

I’ve been dealing with Empty Nest Syndrome

I haven’t written a new post here in what felt like a few weeks, but I see it’s already been six weeks! I apologize for my absence, but I’ve been wrapped up in my own family situation. I needed time away from TLeC to deal with and process this life transition. However, I’m back again to help and support all of you family caregivers and dedicated readers of my blog.

To further explain . . . .

Our son graduated from college in the middle of May and came home shortly thereafter for a few weeks of vacation before moving out-of-state to start his first “real” job. My world changed very rapidly and deeply. And while I knew intellectually it was all normal and good, I crumbled inside. I thought I had already come to terms completely with having an empty nest when he went off to college. NOT!! I was a weeping wreck of a mom for over a month!

How does becoming an Empty Nest-er relate to caregiving?

The transitions of becoming an empty nest-er and becoming a caregiver share many similarities. I hope the things I learned the past few weeks help you in your life transitions, too.

1. Being caught off guard by, and overwhelmed in, our new roles. Just as I was perfectly aware our son would graduate college and set off into the real world, we see our parents aging, but we don’t really prepare ourselves for the transition to being their caregiver. It’s not just happening to them, it impacts our lives tremendously as well. As family caregivers, our parents will rely more and more on us. As an empty nest-ers, the reverse is true — our children need their parents less and less. Both are the natural order of life.

2. Ideas vs. feelings during transitions. Sure, we all talk a good game about how we’re dealing with our parents aging process in practical terms, but aren’t we hurting inside? Doesn’t it make your heart ache to see your parents, whom you always thought of as strong individuals, showing signs of physical and/or cognitive decline? Isn’t it scary for you to watch them becoming more frail, and worry about what’s ahead for them? Isn’t it upsetting to think about their ultimate deaths? Even if you’re pro-active and have care plans in place before they’re needed, I don’t think you can stop these underlying difficult feelings — not if you’re human.

3. The importance of self-care. First off, acknowledge you’re in a funk and give yourself permission to be in one. It’s OK to feel sad and blue for a few days or even a few weeks during life transitions, but don’t fall into a huge depression you can’t pull yourself out of. What are you doing to get yourself out of the doldrums and back to normal? Are you talking with others you know who have already gone through this transition? Are you doing things to increase your positive thinking and outlook, such as reading books or blogs, journaling or writing positive affirmations to repeat each day, meditating, doing yoga, or getting some exercise? Are you talking with either a spiritual leader or a medical professional if they offer you comfort, advice and more? Are you finding activities (either volunteer or paid) to get yourself out of the house and busy again? What are you doing to pamper yourself and pat yourself on the back for doing a good job as a family caregiver?

4. Keep looking forward. Be aware of what future life transitions lie ahead for you. Read this post again and try to prepare for what’s coming emotionally so you’re not taken by surprise as I was when the Empty Nest syndrome hit me like a ton of bricks. If you’re currently a family caregiver, what will you do when your parent(s) pass away? Think about it. Yes, it’s OK to grieve, but after that, what will fill up your time . . . and your heart?

Life transitions aren’t easy but we manage to get through them somehow. We all need to lean on each other more, and ask for help when we feel we need it — from loved ones, friends, and/or medical professionals. We are all in this life and world together!

Have you been through a life transition recently? How did you cope?

And flip that question around — Is there someone in your world who is going through a hard transition time and would appreciate your help and support? Reach out to them today.

Please share your experience in the Comments section below.

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It’s National Family Caregivers Month — Have You Thanked a Caregiver?

Linda Abbit — Wed, 03 Nov 2010 16:41:40 +0000

Each November is National Family Caregivers Month in the United States. I wrote this tribute in 2008 and wish to share it again to honor and thank family caregivers world-wide.

What is Caregiving?

C is for caring more for others than for yourself

A is for appreciating that all human beings deserve dignity and respect

R is for respite which you need to refresh your body and mind

E is for excellence in all you do for the care recipient

G is for going the extra mile day in and day out

I is for inventing creative solutions to challenging situations

V is for victory over negative and self-defeating thoughts

I is for inspiring others to care more deeply

N is for not giving up when others would in such trying circumstances, and

G is for our gratitude for the TLC you give to others each and every day!

“Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.” (National Family Caregivers Association)

NFCA coordinates National Family Caregivers Month as a time to thank, support, educate and empower family caregivers. NFC month enables us to:

Raise awareness of family caregiver issues
Celebrate the efforts of family caregivers
Educate family caregivers about self-identification
Increase support for family caregivers

Please read my previous article about eight easy ways to thank the family caregiver(s) in your life.

If you have an idea on how to thank or help a caregiver in some way, please share it in the Comments section below. Thanks!

“I” is for Interview at EldercareABC

Linda Abbit — Mon, 15 Mar 2010 14:22:11 +0000

It is with deep appreciation and honor that I ask you to join me today over at the EldercareABC website. EldercareABC is a wonderful community for caregivers, created by caregivers, and one that I respect greatly and enjoy visiting.

Mary Nix is a woman whom I interviewed in 2009 about her caregiving experiences, and she has graciously asked me to share my viewpoint about caring for aging parents on her EldercareABC blog.

You can also check out some other posts while you’re there, such as:

Protection from Financial Elder Abuse

The Upside to Elderly Home Care

Or subscribe to their RSS feed so you won’t miss any of the excellent information and resources they provide to caregivers.

The “ABC” in EldercareABC stands for “About Being Connected.” Thank you to Mary and the EldercareABC Team for giving me the opportunity to connect with you and your readers. And please continue doing the great work I consistently find there and assisting caregivers in such a supportive way!

Inspiring Quotes for Caregivers: Every Caregiver’s Journey — 3/10/10

Linda Abbit — Wed, 10 Mar 2010 09:00:47 +0000

The Path

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

Inspiring Quotes for Caregivers — 1/27/10: On Regrets

Linda Abbit — Wed, 27 Jan 2010 09:00:31 +0000

Publicly sharing a true confession earlier this week got me thinking about regrets I have as a family caregiver. Looking back, there are definitely some things I would have done differently while caring for Mom and Dad. They’re hard to acknowledge, and I am very sad when I think about them. I wanted so much to be the perfect daughter and caregiver!

But, I also know I made the best decisions I could based on the situations and the knowledge I had at the time those decisions were made.

I refuse to beat myself up over these regrets. And I try very hard not to dwell on them too often nor for too long.

What about you? Do you have caregiving regrets? How do you deal with them? Please share your thoughts in the comment section below.

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Often regret is very false and displaced, and imagines the past to be totally other than it was.

~ John O’ Donohue

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People have to face regrets. Becoming mature means learning to accept what you cannot change, facing unresolved sorrows and learning to love life as it really happens, not as you would have it happen.

~ Barbara Sher

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I have many regrets, and I’m sure everyone does. The stupid things you do, you regret . . . if you have any sense, and if you don’t regret them, maybe you’re stupid.

~ Katharine Hepburn

Inspiring Quotes for Caregivers — July 22, 2009

Linda Abbit — Wed, 22 Jul 2009 19:12:48 +0000

There are two lasting bequests we can give our children: one is roots, the other is wings.

~ Hodding Carter

I’ve always loved this quote! With just a few tweaks, it applies to family caregivers:

There are two lasting gifts we can give our aging parents: one is safety and security, the other is as much independence as possible.

~ Linda Abbit

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Photo Credit: Kthypryn’s photostream

Reactions to an Alzheimer’s Disease Diagnosis

Linda Abbit — Mon, 20 Jul 2009 10:00:10 +0000

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. . .

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Interview: Born to Be a Caregiver

Linda Abbit — Tue, 16 Jun 2009 00:24:18 +0000

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.