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!

Barbara and Cindy, Mother-Daughter Team

Cindy is a dear friend whom I met around 1980.  Together we’ve experienced many of life’s milestones — single life, finding our Mr. Right’s, weddings, married life, having children, watching them grow, and caring for our parents.

Our mothers both spent their final days on hospice but their hospice experiences were different in many ways:

• One woman received hospice care in a hospital, and one in a board & care home.

• One woman was on hospice only 10 days versus over two years for the other.

• Her mom, Barbara, was younger than my mom by 23 years, and didn’t have Alzheimer’s disease so she was aware of her hospice care.

• Cindy was a long-distance caregiver for her mother while I lived only five minutes away from mine in her final months.

Cindy shares an intimate portrait of her mom’s end-of-life care with us in the following interview.

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I’m very sorry about the loss of your mother, Cindy.  It is so kind of you to share your personal story with us, since it surely was a painful time for you and your family and probably hard to revisit. On behalf of the TLeC community, I want you to know we greatly appreciate your willingness to do this interview.

Could you give us a synopsis about your mother’s medical history and at what age she was admitted to hospice care?

My mom was admitted to Hospice care at the age of 74, after numerous bouts of cancer. She was diagnosed with breast cancer at the age of 59 and was diagnosed 10 years later with carcinoids. Carcinoids are self contained cancerous growths that cannot be treated with chemotherapy. The only treatment was surgery to extract the cancerous growths by cutting out sections of the small intestine/bowel where the carcinoids were growing. She lived with this cancer for approximately 5 years until it metastasized into Carcinoid Syndrome and Peritoneal Carcinomatosis, which ultimately took her life on October 10, 2008.

Did your mom receive hospice care at home, in a hospital or nursing home, or in a separate hospice residence center?  Was the hospice company part of a large hospice corporation or a smaller “mom and pop” type of hospice company?

Mom received hospice care from Regional Hospice in a hospital in Danbury, Connecticut. She was seeking treatment in that hospital because my brother, who is an MD, had privileges there and he could monitor her care more effectively. When the cancer progressed, it was the natural choice to move her up to the 4^th floor of the same hospital where they had hospice care. She was on hospice for 10 days before she passed.

Was the idea to utilize hospice care from your mom’s wishes or did her doctor or someone else recommend it?

Mom’s doctor and my brother had presented the idea of hospice to Mom while she was on the surgical floor, seeing no further options for treating her cancer.

Had you or other family members investigated local hospice care options before this?

We had never discussed hospice previously.

How did your mom respond to this difficult decision?

It was not my mom’s wish to go into hospice because she was in denial of dying. While I was there, she resisted the idea of going to hospice, telling the MD, “But I did everything I was supposed to do; I had all of my scans.” There was a naive belief that if she did her part by being proactive for her medical care, she could keep the cancer at bay. She wasn’t ready and that broke my heart. I reassured her that she had done everything possible, but through no fault of her own, the cancer had taken over.

Was your whole family behind the decision 100% or was there any resistance to it?  If there was resistance from some family members, how did you manage to come to a consensus?

While I was still in California, I was in contact with my brother and sister-in-law who were with Mom 24/7 in the hospital. It was my sister-in-law who called me and informed me that I should come home because Mom would be going into hospice the next day. I remember I was sitting alone in my car outside of a bowling alley where I had driven my daughter to interview for her first job. I was in disbelief at first. I asked if I needed to come out immediately because I had already booked a flight to visit Mom in 2 weeks. I wanted my sister-in-law to tell me that Mom would be okay until then. Talk about denial! She convinced me to come out immediately. I was crying when my daughter came out from her interview; I broke the news to her on the way home.

Can you describe what you believe your mom got from this end-of-life care?  Or what Barbara expressed to you if she was able?

Mom expressed that she dreaded the “death watch”. She knew when we all came in from different parts of the country that we were there to say goodbye. She had told my brother and sister-in-law before we all arrived, that that’s the last thing she wanted, and she didn’t want to linger. Few of us spoke about her impending death directly with her and that’s something I regret tremendously.

We sat around her and reminisced, telling stories of our childhood (there are 4 of us siblings). I marveled at her memory and coherence! She remembered things my siblings and I couldn’t begin to remember. I knew she was the one in the family who carried the memories and when she died, the stories died with her. We showed her albums of when she was a young mother, vibrant and full of life, and she reveled in looking at the albums. She really enjoyed reminiscing and seeing herself in better days.

Barbara, September 2005

She asked how her grandkids were so I told her a story of how difficult it was for my oldest son to go off to college. Upon hearing that he had cried the night before we left him at college, Mom welled up with tears. When I saw her tears, I was quick to reassure her that he was very happy now. In hindsight I believe her tears were probably more about never seeing her grandson again, rather than her sadness over my story, and I have tremendous regrets for not asking her about that.

Can you tell our readers more details about the day-to-day “hands on” hospice care your mom, Barbara, received?

The day to day hospice care was a pleasure. There were so many wonderful professionals who looked in on Mom, as well as our entire family. They took our needs into account as well as hers, tending to our physical needs and emotional needs. They offered physical comforts such as rollaway beds, private family rooms to grieve, computer access to stay in touch with our lives outside of hospice, counseling, showers, food, etc. They met with us in a family room explaining where she was in the dying process and gave us booklets explaining what to look for and what to expect. They suggested that we might want to stop our bedside vigil and let Mom have some time to herself in case she was ready to cross over, but didn’t want to do it while we were there. It was painful for us to feel like we were leaving her alone but we took their advice. The very first night that we left her alone, she died. Hospice had given us good advice.

Can you discuss the pros and cons of your family’s hospice experience?  Overall, did hospice care meet your expectations?  Exceed them?  Disappoint you in any areas?

The pros definitely outweighed the cons when it came to hospice, but there were a few cons worth mentioning. Ironically, one of the biggest disappointments was that they didn’t provide real tissues; hospital tissues rub you raw! We had to bring in boxes and boxes of Kleenex. Another disappointment was there were no outside gardens or tranquil place to go to with your grief. I find nature and fresh air do wonders in healing grief and transporting you away from the hubbub and technology inside of a hospital. Where there is so much death, it would be a welcome escape to immerse yourself in life.

My most shocking revelation was when hospice couldn’t control my mother’s pain and wanted to do surgery on her. I was not prepared for this at all! I pictured hospice as a serene place where people go to die and where there is absolutely NO pain, and no traumatic surgeries. This was not true in my mom’s case. In hindsight I know it was the right thing to do, but it was painful to watch. She was vomiting bucket after bucket of bile which kept her in a constant state of pain. When they suggested doing surgery to put a gastric tube in her stomach to drain the fluid and thus stop her vomiting, I was against it because my mother feared being intubated and this would be more trauma to her body. I wanted her to die in peace. I resisted until my siblings and the doctor assured me this surgery would bring her peace, which it did ultimately. I never imagined that hospice would perform surgery because I see that as a life-saving step. Ideally I would have liked a pamphlet or something that spelled out the various functions of hospice and had it explained to me that sometimes achieving a peaceful state might require something more aggressive than medication.

Another pro was when we got the call in the middle of the night to say Mom had passed, we were greeted with such care and tenderness from the hospice staff as we entered her room to say goodbye. I found I couldn’t say goodbye and leave her alone in that hospice bed. It was unbearable for me to walk out with her still lying there, cold and alone for the last time. In my intellectual mind I knew Mom was gone, but in my emotional mind I couldn’t stand the idea of leaving her alone. I approached a hospice nurse whom we had grown close to, and asked her to please stay with Mom. She understood what I was feeling, saying she wouldn’t leave her. I desperately needed to hear that, and it gave me great comfort.

Do you have any words of wisdom you’d like to share with other families that may be using hospice now or considering it for their loved ones in the near future?

Words of wisdom . . . hmm.

~ Bring your own Kleenex.

~ Give your loved one “space” to die by not hovering over them 24/7.

~ Don’t engage in fights with family members during hospice, recognizing that if they are acting badly it is likely a symptom of their grief .

~ Don’t be afraid to talk to the dying person about their fears/beliefs about dying.

Would you recommend hospice care to other patients or their families?

I absolutely would recommend hospice to anyone who was losing a loved one. It is comforting on so many levels to the patient and his/her family.

Cindy, your story brings tears to my eyes!  You share many important lessons for everyone reading this interview.  Not the least of which is to bring tissues!

Thank you again.  You were a blessing to your mother and may the happy memories of her remain with you and bring you peace.

Cindy is an M.F.T. who lives in California with her husband, children and dog.

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This is Part 5 in a series on Hospice Care. The previous four parts in this series can be found by clicking on the links below in the section “Related Posts.”

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.

Hi Everyone,

I hope you will listen in while I’m being interviewed by Denise Brown of Caregiving.com for her radio show, “Your Caregiving Journey,” on BlogTalkRadio.com this coming Wednesday, February 18th at 8pm CST. Denise and I will talk about my caregiving experiences, past, present and future. I’m very excited and look forward to connecting with you!

The link to listen to the live radio show from your computer is here. You can also ask questions and participate in our discussion by calling (646) 652-4944, or by visiting the show’s chat room here. Hope you can join us!

If you can’t listen live, you can access the archived show later at the links above, and even download the archived interview onto your mp3 player for your listening pleasure when you’re on the go.

I love modern technology!

Photo credit: AleBonvini’s photostream

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!

In Part One of my interview with Lori Hoeck, family caregiver for her mom, age 79, she candidly told us how her life has changed and shared the daily caregiving challenges she and her husband face.

Now we will move on to another subject — the rewards she’s received from being a caregiver, as well as advice for anyone who sees themselves becoming caregivers to their aging parents in the future.

Welcome back and thank you again for your time and honesty in sharing your story with us!

You’ve really had your hands full in so many ways, Lori. What advice would you give my readers if they see themselves becoming family caregivers in the near or distant future?

Understand the process of grief.

The paradigm shift from seeing a strong, independent adult who changed your diapers, wiped your nose, and shaped your life suddenly or gradually change into a person who is more dependent, sometimes helpless, or exhibits an altered personality is tough and often gut-wrenching.

It is important to understand the grief you will be going through as they decline physically, mentally, or emotionally is a process yourself and the loved one you are caring for are both experiencing! The stages of grief are:

Denial (this isn’t happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I’ll be a better person if…)
Depression (I don’t care anymore)
Acceptance (I’m ready for whatever comes)

It’s OK, just don’t get stuck in one of the first four stages forever. Also, try to understand how each state can negatively affect your relationships with family as well as friends.

Change your perspective.

My husband had this insight one day from God: “Why get angry at the tree when it loses its leaves? It is not the tree’s fault; it’s just the way it is.” These words help my husband realize much of my mom’s way of being isn’t her fault, and he can turn his mind away from negative thoughts like:

• She is being this way purposely
• She isn’t trying hard enough
• She is just seeking attention
• She should act more mature

Because, whether she is or isn’t acting these ways, it doesn’t matter. Instead, we have to say to ourselves, “How can we make this time of her life happier and less stressful?” Such revelations help caregivers to learn to roll with the punches – and surrender to the reality of the changes (but never to the illness).

I love this tree analogy, Lori! It is so true and adds so much compassion to the relationship. Your husband is a very special person to realize it and state it so beautifully.

Take care of yourself first!

For me, it’s like I learned in EMT training: When you arrive on an emergency scene keep yourself safe and healthy, because if you don’t, you won’t be able to help others and will probably tie up emergency resources that could be used to help the original victims. If you give all you’ve got to care-giving, you may become sick or burned out and not able to function in that capacity any more.

What do you do for self-care, Lori?

• Exercise

• Journal writing

• Maintain a decent, healthy diet, but nothing too stressfully strict

• My husband will take my mom out for a few hours so I have the house to myself

• My husband has a healing touch with acupressure points, reflexology, and massage, so his loving TLC helps immensely

• The biggest self-care is an understanding of health from many years of searching for an answer to my depression. From that, and as a third degree black belt, I know myself pretty well. I firmly believe in what Louise Hay writes on the emotional triggers behind health issues — basically she says that we are more responsible for our own health than we realize. To this end,

• I take certain vitamins and supplements that are effective for me

• We all use the highly therapeutic Young Living Essential Oils for wellness

• I clean with products that aren’t filled with nasty chemicals

• I use an assortment of leading edge mental health therapies on myself such as Eye Movement Desensitization and Reprocessing (EMDR), Neuro-linguistic Programming (NLP)

• I know my heart and mind well enough to ask for help if my outlook sinks too low

Don’t let guilt guide you.

Guilt is useless if it pulls you down, makes you beat yourself up, or is used as a manipulation tool by others. I’ve learned that guilt only has value when it’s a bone-marrow deep motivator for positive change.

Get support.

Family may or may not support you. Their excuses will seem lame, they seem not to understand how much effort is involved, and they will seem to be more interested in not being inconvenienced. Or you may be too protective – addicted to being the do-gooder — so you let yourself become overwhelmed.

Either way, seek help. I could not do this without an amazing, loving husband to who has had to grow up just as fast as I in all this. Our maturity levels, ability to laugh at even the toughest times, and our closeness to God and each other has skyrocketed in the past few years. We are both convinced such change came only with help from God. We can’t take credit for coming through the tough times and staying sane and more loving toward each other and my mom.

It’s nice that your faith has helped you through this experience, Lori.

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

For a long time, I endured caregiving as a duty-bound and loving daughter, so the only reward was in knowing I was doing the right thing, and that for the most part, I did it all quite well. I make a great caregiver because as a perfectionist, I tend to find the best ways to do it for all involved. That only gets you so far.

There are times when the duty becomes a drudgery that is draining mentally, physically, and emotionally. None of that was rewarding or enjoyable at the time, but as my husband and I sought to put the whole situation and our mindsets into God’s hands, we slowly grew through it all. We both explored our inner workings and sought to develop personally so that any anger, impatience, or wanting to control the situation lessened.

Looking back, I still can’t see any milestones, I just know my husband and I are far better people for being caregivers. Knowing we can now provide care for my mother on a more life-enriching level – instead of just out of duty – means that all of us benefit.

Lori, thank you for sharing your family’s personal story with us. Each caregiving journey is different, but it is always comforting to know others are “in the trenches” with us and to learn from their experiences. Please leave your comments and questions for Lori below.

Lori Hoeck writes as SpaceAgeSage at her personal development blog SpaceAgeSage.com. Please read more of what she’s written there or subscribe to her RSS feed here.

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Update: To read my next interview with a family caregiver, click here now.

In honor of National Family Caregivers Month, I am shining the spotlight on a family caregiver who I’ve gotten to know in the blogosphere, Lori Hoeck. Lori is a loyal reader of my blog and in her first comment here told me that she and her husband are family caregivers for her mother, age 79, who has lived with them for many years. Check out her mom’s high school photo! Lori has graciously agreed to answer my questions and share their caregiving journey with us.

Welcome, Lori! How and when did caregiving start for you?

After living with my husband and me for a few years as a very independent, much-traveling woman, my mother suffered a stroke in 2001 while visiting family. EMT’s transported her to the hospital where they gave her tPA, which dissolves stroke-causing blood clots. She suffered no physical deficits.

After she returned home with us, she had a Transient Ischemic Attack. Coming on the heels of the stroke, the TIA left her with a lot of mental deficits, including a major reduction in sequencing skills. Making change, remembering the order of things, and staying on task were abilities my Mom had that dropped radically after the TIA. Recovery was slow, but eventually she was able to drive a car short distances and be very independent, able to fix meals, and keep up with her own housekeeping. About two years ago, though, her short-term memory started to decline fairly quickly and she gave up driving. Presently she is taking the drug Aricept which seems to slow the decline.

What are some ways your life has changed since you became your mother’s caregiver?

The residual deficits in sequencing skills plus the short-term memory loss meant pots were left on the stove top too long, microwave time settings had an extra zero added, and perishable foods were left out of the refrigerator too long. We’ve gone through four microwaves, three coffee pots, and tossed out lots of food, some of which went in the trash after we got sick. Also:

• I’ve found the dishwasher with dish soap that has bubbled up and overflowed in the dishwasher, which then plays havoc with the water indicator so the heating coil starts cooking the bubbles.
• She’s tried to starch her clothes while ironing with a can of window cleaner.
• Our cats became sick after she cleaned the bathtub, but did not rinse it well enough, and the cats walked in the tub and then licked their paws.

Since these occurrences, I’ve locked up most of the household chemicals and cleaners, taken over all cooking and kitchen cleaning (not that this stops her from trying!), and had to take extra care to watch out for the health and well-being of our cats. Her physical health is great, but it’s unsafe for her to be alone for extended periods, such as overnight. I work out of our home as a freelance writer, so she is rarely alone for more than 3-4 hours.

What do you find is the most challenging aspect of caregiving?

• Knowing it will never get better, I will never have my mom back the way she was, and I can never talk with her the same ever again
• I must be the parental figure now in so many ways, but still provide as much dignity to the process as possible for her
• Having to be proactive, prevention minded, and as patient as the Biblical character Job as I handle her money, legal, and medical issues
• Trying to set boundaries, establish a routine, or figure out her state of mind, since it’s often impossible
• She regresses to words and emotions of childhood sometimes. It makes her very fragile emotionally, and yet she can be as stubborn as a teenager and equally insistent, often taking too many things personally
• Having family members think she is at a higher functioning level than she really is, so they see our precautions as either unnecessary or too controlling
• Her tendency to be forgetful of things – sometimes within seconds — and yet still fixate on things like housekeeping, the weather, and our extended family’s problems

The biggest challenge, however, is working with the combination of her personality and the memory deficits. My mom comes from a family culture where you endured silently any aches, pains, or misfortune. Hiding behind a mask was learned from an early age.

• I may find my mom crying, but she will try to stop and then clam up about it.
• I might point out an obvious fact, but she will deny it, laugh it off, or ignore it by going into her room and pouting for a short time.
• I will try to help her, but she refuses, brushing off my assistance with “Oh no, that’s fine. I can get it.”

Her state of mind, her masking skills, and her memory loss combine, and as a result the rules of interaction are always changing or don’t exist – as soon as one is set, it changes. For example, I’ve asked her if she wanted to go with me on errands in an hour or so (because she takes time to get ready), and she might say no. At that point, I may make new plans that don’t include her, but if I don’t leave right away, I may see her come out of her room all dressed up telling me, “OK, I’m ready to go.”

One day she wanted a fast-food burger, so I took her to a Wendy’s drive-thru, but for some reason the chicken sandwiches appealed to her and, despite my reminding her that she really wanted a burger, she got a chicken sandwich. I triple-checked with her that the chicken was what she really wanted. We drove a few miles to a scenic overlook and parked the car to eat and look at the view. I pulled out her wrapped up sandwich and handed it to her. She peeled back the paper, looked puzzled, and exclaimed in a totally surprised voice, “This is not a hamburger!”

If at anytime in these two incidences I had pointed out her change of mind, she would have become defensive, taken it personally, and withdrawn emotionally – until she forgot about it again. I wrote in my blog that it is often like living in a not-so-funny Saturday Night Live skit.

I think you’ll agree, Lori writes from her heart. Thank you for being so open and honest with us, Lori. She has graciously agreed to answer questions you have for her in the comment section below. So please don’t be shy.

You can read more of Lori’s captivating writing on her personal development blog at SpaceAgeSage.com. We will continue with Part 2 of my interview with Lori next week, so stay tuned!