Tag Archives: Support group

Caregiver Stress – no one is immune

Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP.  The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving.  A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”

My dad and I, five years before I became his caregiver; 13 years before he died from Alzheimer's.

My dad and I, five years before I became his caregiver; seven years before he died from Alzheimer’s.

Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment.  Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing.  She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.

In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second.  “No way,” you say, “my mom/dad/spouse come first; they need me!”  You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them.  That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.

Most of us learn the hard way.  We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno.  Do yourself – and your loved one – a favor.  If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself.  You will benefit from such care, and so will your loved one.

The Morning After

The Morning After: Caregivers Experience of Loss and Their Struggle for Identity.

Morning face

(Photo credit: Wikipedia)

Perhaps you read the brief title of my article and before delving into its content you’re wondering: The morning after a night of drinking?  The morning after doing something regretful – perhaps synonymous with the previous question?  The morning after a horrific news event?

None of the above.  In the attached article, a fellow blogger writes about his experience of waking up the day after his wife passed away; a day in which he felt the full impact of the loss of his wife and the cessation of his role as her caregiver – his identity for so many years.

Unless, and until, you experience this type of blurry identity, you can’t fully understand the feeling.  Those of you who devoted any amount of time caring for a loved one prior to their death understand all too well the emptiness and lack of purpose that oftentimes follows the end of the caregiving journey.

I was the long-distance caregiver for my father after he was diagnosed with Alzheimer’s disease.  He lived in a memory care unit of a Southern Oregon continuing care retirement community (CCRC) while I commuted from Seattle by plane, by telephone, and by 24/7 worrying and thinking.  By choice, I left my full-time job and for the next four years, dedicated my time to managing his care and being the primary on-site visitor.  Many of you worked full-time at your “real” job while being a caregiver for a loved one and I respect and honor you for somehow juggling all of those responsibilities.  I knew my limitations, however, and reached that limit quite early in the process.  The emotional and physical toll of caregiving was more than I was capable of handling on top of my other job, so with my husband’s blessing and encouragement, we did without my financial contributions while I carried on as my father’s care person.

After my father’s October 13, 2007 death at the age of 89, I returned to Seattle having spent the last hours of my father’s life at his bedside; then several days wrapping matters up with the funeral home; with the bank trustee, and with the facility in which he had lived for close to thirteen years.  Although there would be many weeks of tying up loose ends upon my return home to the Seattle area, I was effectively unemployed – laid off from a job to which I was extraordinarily committed.  As the blogger in the attached article mentioned – those in this position wake up the day after, and the day after the day after, feeling as though they have lost their purpose.  Additionally, the identity which defined them for several years no longer applies.

Grieving and re-purposing our lives can take place during this time, a process which may take months or years; a process that is as individual and unique as ones fingerprint.  As the blogger wrote in his article, he appears to be transitioning in a way that utilizes his years of being the primary caregiver and advocate for his wife.  He’s recreating his working life; reshaping it to fit the caregiver role in which he flourished.  Like this blogger, I too quite naturally segued into employment positions in which I could continue on the path that I had started years earlier with my father: elder advocacy, Alzheimer’s Association volunteerism, and most recently, putting all of those past and present experiences down on paper in the form of a novel.

But that is not necessarily the norm.  Some of you may have felt the need to totally disassociate from anything remotely related to the caregiving or care managing roles.  I understand that decision and I agree 100% that it’s the right thing for you to do.  Again – how we recover and/or regenerate after the caregiving experience is a distinctive aspect of our ongoing lives.  What we do have in common, however, is that we have all experienced the morning after the end of our caregiving journey.  Whether we’re relieved, angered, aggrieved, or a combination thereof – the morning after is unavoidable.

In closing, I want to celebrate you – the caregiver heroes who are ordinary people, who did the ordinary right thing, at an extraordinary time.  You are a hero to many, and you are a hero to me.

Start your retirement – start your job as a family caregiver.

You’ve worked your entire life; you’ve lined up your retirement leisure activities; you’re ready to start the first day of the rest of your life, but instead you start a new job: caregiver to your sibling, spouse, parent, or other family member.

Or perhaps you retired early to take on your caregiver job because there was no way you could do it all: continue your full-time job while moonlighting as your loved one’s caregiver.  It doesn’t work or it only works until the caregiver runs out of steam.  One way or another, your retirement years sure don’t resemble what you envisioned.

The CNN article, As baby boomers retire, a focus on caregivers, paints a frightening picture but one that is painfully accurate.  The highlighted caregiver, Felicia Hudson, said she takes comfort in the following sentiment:

Circumstances do not cause anger, nervousness, worry or depression; it is how we handle situations that allow these adverse moods.

I agree with the above sentiment to a very small degree because let’s face it, the nitty-gritty of a caregiver’s life is filled with anger-inducing depressive circumstances about which I don’t think caregivers should beat themselves up trying to handle with a happy face and a positive attitude.  It just doesn’t work that well in the long-term.  It’s a well-known fact, and one that is always talked about by the Alzheimer’s Association, that caregivers don’t take care of themselves because they don’t know how, or don’t have the support, to stop trying to do all of their life’s jobs by themselves.

“I’m obligated because my parents took great care of me, and now it’s time for me to take care of them.” 

or

“For better or worse means taking care of my spouse, even though she’s getting the better of me, and I’m getting worse and worse.”

The problem with the above sentiments is that oftentimes the adult child or spouse start to resent the person for whom they are providing care.  It’s like going to a job you hate but being held to an unbreakable employment contract; your employer is a loved one with a life-altering or terminal illness; and you’re not getting paid.  “Taking care of a loved one in need is reward enough.”  No, it’s not.

I’m not bitter, I’m simply realistic.  Caregiving is one of the most difficult jobs any of us will hold and we can’t do it all by ourselves.  My blog article, Caregiving: The Ultimate Team Sport, encourages each person in a family caregiving situation to create a team of co-caregivers to more effectively get the job done.  And please take a look at the other articles found in that same category of Caregiving.   I hope you will find encouragement in those articles – some based on my own experience, and some from other caregivers’ shared experiences – especially when a positive attitude and a happy face just isn’t working for you.

Honesty is NOT always the best policy.

Bear with me – don’t judge me quite yet.

You are not destined for Alcatraz just because of a little well-placed dishonesty.

If you are primarily responsible for a loved one with Alzheimer’s or other dementia, or perhaps you assist an elderly relative who relies on you for help, do you find yourself telling little white lies?  Do you stretch the truth a bit in order to keep the peace?  Without doing any harm to your loved one or anyone else, do those little white lies help you accomplish tasks on behalf of your loved one, thus improving their life?  Congratulations – you understand that honesty isn’t always the best route to take and you’re in good company.

How do you jump over the hurdles of negotiating with a loved one for whom you provide care?  Here are a few examples that come to mind.

Scenario one: the need to get creative in order to leave the house for personal business.  For example, if telling your wife that you’re going to a caregiver support group meeting makes her mad, sad, or distrustful of your intentions, (“I’m sure you’re going to say bad things about me!”), why not tell your spouse that you’re going out with the guys, and you promise you will be back in two hours.  Then make sure you’re back on time!  If you’re not comfortable with that lie, by all means, every month you can continue to explain how helpful this caregiver support group is to you and how much it helps you be a better husband; and month after month your wife will not understand your rationale and will feel ashamed.  Knowing that you’re going to a support group only confirms how miserable she’s made your life.

Scenario two: Your aging widower father needs housekeeping/landscaping or cooking assistance at his house but he insists he can’t afford it.  You personally know he can afford it because he turned over his bill-paying responsibilities to you and you’re a signer on his bank account. You won’t be able to convince your dad that he has enough money to last his entire lifetime, so simply tell him that you and your siblings are gifting him with the housekeeping and cooking service and would be hurt if he didn’t accept your gift.  Then go ahead and arrange for the service, and pay for it with his funds – unless you and your siblings really do want to gift him with this ongoing service.  Is that stealing?  Not at all.  You’re not enriching your own finances by allotting a certain amount of your father’s money towards his personal care.  The outcome: a safer environment in which to live, and proper nutrition that he’s not able to provide for himself.

Scenario three: You keep your mom’s doctor appointment calendar and are also her means of transportation to those appointments.  Do you tell her days and weeks in advance of those plans?  If you do, be prepared for numerous phone calls in the interim: “When is it?  What’s the appointment for?  What time are you picking me up?”  Instead of telling your mom of the future appointment, and even going so far as to writing it on her wall calendar, just show up and take her on an outing that just happens to include a doctor visit.  You know your mom’s schedule; you know she’s going to be home – so just show up!  Surprise!!!  Time for some mother/daughter time.

You won’t end up here.

Criminal subterfuge or compassionate communication?  White lies, stretching the truth, and withholding information does not qualify as sophisticated subterfuge – quite the opposite is true.  Noted author and PhD, Pauline Boss, explains it this way (and I’m paraphrasing): Perfection isn’t the goal of the caregiver.  What works at any given time, is perfect for that given time.

Let me explain by providing one more scenario:  You and your wife have lived in Spokane, Washington your entire life and have never traveled outside of the U.S.  Your wife, however, is convinced that you’ve traveled together to France, Italy, and Spain – even providing details about those adventures.  Why not go along with the fantasy?  Build on to the stories that she shares with you and reminisce about all those memorable times you spent together.  Have fun with it!  You won’t regret it.

Taking a walk with my wonderful Dad who died of Alzheimer’s, October 2007.

The Alzheimer’s Association has a motto:  If you don’t insist – they can’t resist.  As the person who does not have dementia, it’s far easier for you to adjust to your loved one’s reality, than it is for her to jump into yours.  So set aside your pride – and perhaps your unhealthy need to always be right – and treat your loved one to a better way of communicating once the previous way no longer works.

You are really doing your loved one a favor by simplifying communications in such a way as to almost guarantee a successful outcome.  But you need to do what you’re most comfortable with; but be assured that doing the same thing over and over again but expecting a different result is an exercise in futility that you most certainly can do without.