Tender Loving Eldercare» Caregiver Stress

How to Handle the Guilt of Caregiving — Part 2

Linda Abbit — Mon, 23 May 2011 09:00:45 +0000

This post is part of a two-part series. Click here to read Part 1.

I feel a little guilty for writing about guilt.

I haven’t been a hands-on family caregiver for over two years, but I still feel guilt over things I could have or should have done for my aging parents. So can I really offer advice to you about how to best handle guilt?

One thing I will say with 100% certainty is that feelings of guilt can be controlled, and may dissipate greatly over time, but these feelings probably won’t ever go away completely.

Placement Guilt

Feeling guilt over placing a loved one in a care facility when you, a family caregiver, can no longer care for them at home is one of the most common causes of guilt, so I’m going to focus on this issue first.

When placement guilt rears its head, look back and recall the living situation in your home before you placed your loved one. Stop and answer the following questions honestly. (Warning: It’s easy to idealize your “before” life, but don’t. Be brutally honest with yourself.)

About Your Loved One:

Were you able to care for him/her on your own 100% of the time?

Was he/she cooperative in the care you were giving? Or were they stubborn and/or combative at times?

Were they really safe from possible falls or injury at home? Could they be left home alone safely?

Were they accepting of outside caregivers you were bringing in to the home to help you?

About Yourself:

How was your physical and emotional health before placement? Was it deteriorating?

How stressed and worried were you then?

Did your life seem like it was spinning out of control?

Were you able to get a good night’s sleep? Any sleep?

Were you eating well?

Were you able to get a break from caregiving — enough to feel relaxed and refreshed upon your return?

Were you trying so hard to preserve your loved one’s dignity or the status quo of your family life, you were nearly killing yourself in the process?

Did you sometimes feel you were at the end of your rope?

Were you ashamed to admit you couldn’t care for him/her all on your own any longer?

Did you feel like you were failing your loved one, yourself or your family?

My experience says that if you honestly answer the above questions — and not paint a false rosy picture of what your home life used to be like, you will be free of guilt feelings by the time you’ve read to this paragraph. The safety and care of your loved one, as well as your health and peace of mind have got to be better now than the situation was in your home before placement — or you wouldn’t have moved him or her in the first place!

So, when those guilt feelings start creeping in, come back to this post, answer these questions again and remember what life really was like before you made that difficult placement decision. It may not take the sadness or loneliness away, but it should lessen the guilt quite a lot when you re-confirm the decision you made truly was best for both of you!

How I Overcame My Own Guilt

An example from my life illustrates how I handle the guilt I still feel because my father died alone. I was not at his bedside as I had hoped and wanted so very much. The exact circumstances about his death don’t really matter, just know that the guilt over this bothered me very much initially, and even now, six years later comes back to haunt me on occasion.

The hospice company that cared for both of my parents keeps in touch with bereaved families for one year following the patient’s death. I received various mailings and phone calls during the year after my dad died, but never took them up on their services of counseling, religious services, or holiday memorial events. Just before the hospice service was ending, I decided to make an appointment with the hospice social worker for a one-on-one session.

I sat there crying and told her of the tremendous guilt I felt about my dad dying alone. I had been with him so much over the last several years of his life and the three months he was on hospice, how could that have happened?! I was feeling like I’d let him down completely by not being there.

What I learned from her was that death is a very private experience, and that many people “choose” to die alone! She told me how many families will be at their loved one’s bedside, and then right after they leave to either get some sleep or some food, the person passes away while they’re gone. As she relayed this to me, I had to admit I had heard of this happening to other families I knew.

In my case, education helped me decrease my guilt. And when I think about my dad dying alone and the guilt begins to resurface, I remind myself that it could have been what he actually wanted.

What other things have you felt guilt over as a family caregiver? How have you overcome those feelings? Your thoughts are welcome in the Comments section below.

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Photo Credit: Jason Rosenberg on Flickr

How to Handle the Guilt of Caregiving — Part 1

Linda Abbit — Wed, 11 May 2011 09:00:30 +0000

One of my support group members recently asked me, “How do I get over the guilt?”

A few months ago she moved her husband to a board and care facility because she could no longer care for him by herself at home. Intellectually she knows it is the best thing for both of them, but the guilt gnaws at her.

Even though my parents died over two years ago, I still find myself thinking thoughts such as, “I wish I hadn’t listened to So-and-So about that particular decision and followed my gut instincts instead.”

The guilt hits me from time to time –

Why didn’t I make different (better?) decisions.

I wish I could have made their final years more pleasant.

I wish I had a magic wand and could have reversed their aging with a wave of my wand.

If I only had the power to do so!

Guilt is an inherent part of caregiving. What guilty thoughts do you deal with? And what do you do when it rears its ugly head?

I’d like to read your thoughts in the Comments below and I will share in a new post what I did (and still do) to combat guilt feelings. Thank you for contributing to this discussion.

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Photo credit: kelsey_lovefusionphoto

What to Do After You’ve Lost Your Cool with your Aging Parents

Linda Abbit — Thu, 18 Feb 2010 05:00:22 +0000

We’re all human. We’ve probably all felt the guilt and remorse after losing our cool with our aging parents, relatives or care recipients.

Aside from feeling badly, what can we actively do to make amends after we’ve blown up at them? How do we begin to repair the relationship after a hurtful incident?

Making up may be hard, but not impossible, to do. Here are several steps to take:

1. Have a cooling off period. Let the dust settle before you engage them again. It gives everyone involved time to gain some perspective on what the issues were that set off a disagreement. This could mean several hours, days or even weeks depending upon your caregiving situation.

2. Change your mode of contact. If you visit regularly, you may want to simply touch base via phone a few times before another face-to-face visit. Or ask a sibling, spouse or adult child to take a turn or two with the caregiving duties. If you live with your care recipient, get away from home for a little while, provided they are safe to be alone for this period of time.

3. Before you visit your Golden Oldies again, resolve to arrive with a pleasant attitude and open mind about talking over the issues that caused the argument. Otherwise, it’s not time to visit them yet. You may also want to role play with a friend or colleague the scenario before you go there, to figure out how to calmly discuss the issue(s) with them. It’s best not to involve another family member in your role playing, as they may have their own emotional bias on the topic.

What If You Start Losing Your Cool All Over Again?

When you re-establish contact and visit with the intention of making amends, be tuned in and aware of your own internal signals. Are your Golden Oldies beginning to push your buttons? Do you feel your stress level rising again? If so, before the same argument starts over, it would be better to either leave or change the subject, rather than have it lead to another blow up! Try to remain cool, calm and collected as the issues are being discussed.

At the very first sign things aren’t going well however, either change the subject (“I think we all need to think about these ideas more. Can we continue this discussion another day?”) or leave gracefully (“I have to pick up XYZ before dinner — can we continue this tomorrow?”).

Then repeat the steps given above, until you can control your reactions more effectively.

I also suggest that if you sense your aging parents are becoming upset again, it may be wise for you to bail. You don’t have control over their emotional reactions, but you do not have to be subjected to any verbal abuse they may throw at you. If the same issues are starting to upset them, just stop and let it go for the time being.

As I left my parents’ home after a visit, I would often ask myself, if this was our final goodbye, would I be happy with it? I think parent-adult child relationships would be vastly improved if more family members asked this question of themselves.

Special Circumstances Apply

If your Golden Oldie has any type of memory loss, dementia or Alzheimer’s disease you must always be the one to apologize. This is due to the fact that they most likely

won’t remember the blow up; and

even if they do, they may not have the brain processing function to take the initiative to apologize

You must accept the blame when something’s wrong, even if it is a fantasy existing only in their minds. It is the kindest thing to do under the circumstances.

What techniques have you used to make amends after a blow up with your Golden Oldies or care recipients? Please leave your words of wisdom in the comments section below.

True Confessions: When I Lost Patience with My Aging Parents

Linda Abbit — Mon, 25 Jan 2010 09:00:34 +0000

In a prior post I acknowledged that in our role as family caregivers, we’ve all probably lost our patience with our aging parents or care recipients at some point. I also promised to share with you my own experience, so here goes.

I Never Lost My Patience (Part One of Two)

I was a long distance caregiver to my parents during the years my mom was in the early stages of Alzheimer’s disease. It’s easy to keep your patience when you live three thousand miles away and the caregiving consists mainly of supportive phone calls and a few short visits a year.

About two years after her diagnosis, when my parents moved to an assisted living facility in my town, my mom was at the start of the middle stage of this horrible disease. Through the excellent free resources of my local Alzheimer’s Association, I had educated myself via workshops and lots of reading about caregiving for dementia patients. I was also attending a support group for adult children of Alzheimer’s patients on a regular basis which provided more insight and other people to share experiences with.

The knowledge I gained from the time my mom was diagnosed until the time she and my dad moved here armed me with an understanding and deep compassion for people struck by any memory-impairing disease. And while I saw my parents multiple times a week once they lived nearby, I do not remember a single time when I lost patience and blew up at either one or them, face-to-face or by phone. (I just checked with my husband and he couldn’t think of any incidences like that either.)

So How Did I Keep from Losing It?

OK, this was probably a wimpy way out (or at best, passive-aggressive behavior), but I would rely completely on my husband to interact with my parents for me when I needed some space as a caregiver. As their only child, I was their sole source of emotional support, and I thought it could be extremely hurtful if I was nasty, mean or rude to them. I truly didn’t want to hurt them in any way at this stage in their lives.

I did two things that stopped me from losing patience with my parents:

1. I vented to my husband . . . a lot! I would whine and complain whenever I felt the caregiving issues and duties were overwhelming me. As an only child, one comment I often made was, “This is just too much for one person to handle!” (Of course, there are pros and cons about being a caregiver and an only child, but that’s another post.)

I must also point out, my parents were always very independent and considerate! They never expressed a desire to live with my family and only did so for a few weeks when they were moving. I always had our own home as my sanctuary to retreat to. I don’t know how I would have managed had we all lived under the same roof — which makes me sympathize even more with family caregivers who do accomplish this incredible feat with aplomb!

2. I would have my husband “run interference” for me when I was reaching my caregiving breaking point. Jeff is an absolutely extraordinary man, and I have to publicly thank him again for being such a vital part of my caregiving “village.” There were times my father would call and I just couldn’t bear to deal with whatever question or problem they had. Jeff would return the call and handle everything for me when I just couldn’t do it myself.

One particular incident really stands out in my mind. I had just arrived at Disneyland to meet a group of friends (we’re locals and had an annual pass at the time) and spend the evening dancing to a favorite band playing there. (As I’ve written here before, dance is one of my major ways to relieve stress!) My pager beeped and I saw it was my parents’ phone number. I immediately called Jeff at home and he willingly returned my Dad’s phone call, explained I was gone for the evening, and helped them in my absence. Thankfully, I didn’t have to turn around and leave the Happiest Place on Earth as soon as I had arrived. I know how lucky I am to have had such a reliable and caring backup person on my caregiving team.

Do you have a family member, friend or neighbor you can ask to be your back up for those times you just need to have some time away from caregiving? And don’t feel guilty arranging for this assistance!

I Never Lost my Patience . . . Yeah, Right (Part Two of Two)

Ironically, I would lose my patience on the telephone multiple times with my parents years before I ever became their family caregiver!

I moved out to California in my mid-20′s and we’d talk on the phone about once a week to catch up. I would find myself very upset or angry with my parents by the end of many conversations. I remember wishing they would just leave me alone and stop telling me what to do!

These negative emotions, along with some other issues, led me to get counseling for a few months to gain a better understanding of myself. My therapist taught me a very important life lesson which I know helped me become a more patient caregiver when I took on that role.

The lesson was for me to change my perception of what they said.

It was to recognize that the words my parents were actually saying, which I perceived as criticism or telling me how to run my life, were only one surface layer. What I needed to learn and embrace 100% was the understanding that beneath whatever “negative” words I was hearing, what my parents were really saying to me was, “We love you!”

They cared about and loved me deeply. They weren’t criticizing me; they were suggesting ways I could make my life even better. It was all in my perception of the intent behind their words, not what their words were! It was the unspoken message they were sending that I needed to focus on.

Once I learned this important lesson, it made all the difference in the world when communicating with them in a patient and loving manner, both long distance and while up close and personal. And I think this basic understanding also kept me from losing patience with them when I later shouldered the responsibility and stress of caregiving.

True Confessions are now officially over.

In a future post, we’ll talk about practical ways we can smooth things over when we do blow our cool with our Golden Oldies.

Caregiving and the Holidays

Linda Abbit — Wed, 04 Nov 2009 09:00:14 +0000

Now that it’s November, the countdown to the holidays has officially begun.

While most of the world seems to be living on a holiday “high,” caregivers often struggle through this time of year with great, and often hidden, sadness in their hearts.

For family caregivers the holiday season can be both blessing and a curse. A blessing because it provides opportunities for wonderful family gatherings and a curse because it provides opportunities for wonderful family gatherings.

Can you feel your stress level starting to rise already?

Meredith Bailey of MyCareCommunity.org interviewed me for an article about the stress caregivers may experience before and during the holidays. We hope you find the coping strategies and ideas presented in it helpful. You can read the article here.

Carol Bradley Bursack, author of “Minding our Elders: Caregivers Share Their Personal Stories,” contributed to Bailey’s article, too. Her book is available in the TLeC E-store, on Amazon.com, and in other bookstores.

Also please take time to explore MyCareCommunity.org. It is an online community of caregivers and eldercare experts sharing advice, experiences, stories, tips and resources. It looks like a worthwhile place for caregivers to connect and learn.

As a caregiver do you have holiday coping strategies you’d like to share with us? Please write them in the comment section below. Thanks!

A Holiday Gathering for Family Caregivers

Linda Abbit — Mon, 08 Dec 2008 10:00:03 +0000

I was planning to write a post about family caregivers, our aging parents and/or relatives, and the many issues we might face during the hectic holiday season. In organizing my own thoughts and researching this topic, I found there are many excellent resources already available on the internet about this very subject. Instead of reinventing the wheel, I’ll point you to the ones I believe are most helpful.

So grab a cup of hot chocolate (or a hot toddy), sit back and browse through this gathering of sites:

At MindingOurEldersBlogs.co m, Carol Bradley Bursack writes about adult children visiting their aging parents and the “miracle transformation” that could occur in “Home for the Holidays: Be Prepared.”

At AgingCare.com, Carol Bradley Bursack tackles family caregivers’ guilt about not fulfilling all family members’ expectations for the holidays. In “How Caregivers Can Stay Positive During the Holidays: Drop the Fantasy, Lose the Guilt” she stresses the point that caregivers need to accept where we are in life, and that it is absolutely OK to simplify things as a result.

Paula Spencer of Caring.com gives advice about interacting with Golden Oldies who have dementia or Alzheimer’s disease (she covers all stages), and the apprehension many of us feel about the upcoming holiday reunions in “Holi-Daze Made Happier: How to Hang Out With Someone Who Has Dementia.“

Valarie D’Acquisto’s Pleasant Days for Elders blog has an article entitled “Wishing You and Your Elder a Pleasant Christmas Season” that reminds us our Golden Oldies run colder than most people and gives practical advice on how to insure they are warm and toasty during these winter months. She also includes a list of possible gift ideas for seniors at the holidays that can be referred to all year long.

Caregiving.com founder, Denise Brown, offers an entire Holiday Survival Guide, which includes eight individual holiday articles on a wide-range of topics as well as an audio recording.

If you prefer to listen rather than read, you can load these five podcasts onto your iPod or mp3 player and listen while you’re on the go — recordings from the weekly “Ask Mr. Eldercare Show” at BlogTalkRadio.com. Martin Sabel, aka Mr. Eldercare, is the host who covers these holiday topics with his guests:

Home For The Holidays: Getting Ready To Visit Mom and Dad

What To Look For When Visiting Your Aging Parents Over The Holidays

Ask Mr. Eldercare About Aging Parents and The Holidays

Manage Holiday Caregiving Stress Before It Manages You

Before You Return Home for the Holidays, Do This

It is my hope that after reading or listening to these words of wisdom, you, your families and your aging loved ones will have a much less stressful and a far happier holiday season!

I like learning from you, too. What have you learned from your caregiving experience during the holidays?

Or please share other articles or resources about this topic in the comment section below. Thanks!

How to Decrease Caregiver Stress

Linda Abbit — Thu, 13 Nov 2008 09:00:49 +0000

Since November is National Family Caregivers Month, I want to focus on the many wonderful caregivers in the world and provide extra support for them, too.

Let’s start with how to help decrease caregivers’ stress!

If you are a family caregiver, please answer these quick questions. (Don’t worry you don’t have to tell me the answers — it’s just for you, so be honest!)

As a caregiver for your aging parents, spouse or relatives, do you regularly:

Feel like you have to do it all yourself, and that you should be doing more?

Withdraw from family, friends and activities that you used to enjoy?

Feel anxious about money and health care decisions?

Have health problems that are taking a toll on you mentally and physically?

Feel grief or sadness that your relationship with your Golden Oldie isn’t what it used to be?

If you have answered “Yes!” to any of these questions, there are a huge number of resources at your computer fingertips through the Alzheimer’s Association. The Association has just launched a new resource to help identify and relieve the physical and emotional stress caregivers experience, and it’s called Caregiver Stress Check.

Caregiver Stress Check is a first-of-its-kind, interactive quiz caregivers take to identify their own personal symptoms of stress and then it provides a tailored list of helpful referrals and resources. The quiz can be accessed here.

“But my aging parent doesn’t have dementia or Alzheimer’s disease.”

Take this quiz anyway!

I have reviewed all of the 20 detailed resources provided, and yes, some of them are directed towards caregivers of Alzheimer’s patients, but more than half of these resources can be helpful for everyone who is a caregiver for their aging parents or spouse, no matter what disease the care recipient may have. Even if your Golden Oldies are physically healthy, aging gracefully and you are providing “just a little help,” the pressure can sneak up on you.

The Stress Check uncovers symptoms that all caregivers experience: overwhelm, withdrawal, worry, denial, frustration, anxiety, anger, sadness and grief.

The resource lists are detailed and available in many formats, such as both online and printable care guides, calendars, brochures, reports, plus message boards and DVD’s.

If you are a family caregiver, chances are you feel different degress of stress from time to time — if not all the time. Please utilize this excellent resource when you are feeling physically and/or emotionally worn out. I’m there with you — I experience caregiver stress and have started to dig into these resources.

Please forward this information to other caregivers you know. It can be your gift to a caregiver for National Family Caregivers Month, and it will definitely be a gift that keeps on giving!

If you are a caregiver, please leave your feedback about the Stress Check in the comments below.

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Photo Credit: gotplaid?’s photostream

Outside Resource:

Alzheimer’s Association — November is National Alzheimer’s Disease Awareness Month

How Many Hats Do Family Caregivers Wear?

Linda Abbit — Thu, 19 Jun 2008 01:54:06 +0000

Do you remember enjoying the classic Dr. Seuss book “The 500 Hats of Bartholomew Cubbins” from your childhood? It came to mind today as I was thinking about how many hats we wear while caring for our aging parents.

An Institute of Medicine report lists roles that many of us will find familiar:

Companion
Coach
Homemaker
Scheduler
Driver
Decision maker
Coordinator
Financial manager
Health provider
Attendant
Monitor
Patient Extender (the person who helps the patient fully explain him- or herself to the doctors, nurses or other providers)
Technical interpreter (the person who helps doctors and other providers explain themselves to the patient)

Whew! It may not actually be 500 hats, but it can certainly feel like it some days. No wonder family caregivers are so stressed and exhausted at times!

I thought of one more “hat” to add and that is Correspondent, or the person who writes and sends cards, notes and/or gifts to friends and family members. I took over this role from my Mom as her Alzheimer’s Disease progressed and she could no longer do it herself. I also call her friends to keep them updated on her life (and mine) from time to time. E-mail makes it even easier to do this.

Can you add other “jobs” to this list that you find yourself doing as you care for your aging parent? Feel free to comment below.

Warmly,

Linda Abbit

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