CC: #6

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Conversations With Carol #6
Caregivers Emotions:  Guilt
By: Carol Abaya, M.A.

"I’m about to lose another job -- the third this year -- because of HIM," the hysterical voice at the other end of the phone said.  "And they can’t deal with him at the senior apartment.  I don’t know what to do.  What should I do?"

This is Carol Abaya

This telephone call is typical of many I’ve received from across the country since I started writing about the sandwich generation™ and aging issues.  All have the same theme -- they are from caregivers who are overwhelmed with new elder care responsibilities, who are on an emotional roller coaster, and don’t know what is "the right" thing to do.

This particular caller was a nurse.  The HIM was her adoptive parent, who had been good to her over the years.  But he had become irrational, very demanding, and extremely nasty when he didn’t get what he wanted, when he wanted it.

Because he was so nasty, his real children wanted nothing to do with him.  Which left this woman to cope on her own.

She was about to lose her job because the father called her at work many times,  every day.  She had already had a nervous breakdown herself, and her husband left her, taking with him their young daughter.

She was getting counseling, but refused to listen.  The counselor had told her the same things I did.  First, don’t give him your work number or tell him where you’re working.  Second, establish parameters as to what is acceptable behavior and what you will not stand for.  And third, don’t jump to do everything for him when he yells.

Her reaction to all this :  I feel guilty if I don’t give him the telephone number.  What happens if it’s a real emergency.  And he was so good to me, and now I’m the only one who cares.

This is one classic example of the elder manipulating the caregiver, and the caregiver responding to the buttons being pushed.  And the feeling of guilt if she said "no."

This nurse also had another kind of classical  guilt.  The guilt here is associated with not being able to make the unhappy father  "happy."  It may be that the parent was never a happy or upbeat person.  And it may be that the person is upset and unhappy about getting old and needing help from others.

In such cases, nothing a child does is going to change this.  Yet countless adult children jump through hoops and feel   guilty when they say ‘no’ or can’t make things ‘better’ for the elder.

Another classic example of the "guilt" factor is found in spousal care.

This is the story of a wife, who tried taking total care of her husband, who was about 10 years older than she and who had Parkinson’s.  She ended up in the hospital herself twice with pneumonia, because she insisted on doing everything herself.   She refused to  bring help  into the house, when things first started getting bad.

She insisted that  she could do it all.  And she refused to listen to anyone.  Finally her doctor told her that she had to place her husband in a nursing home.  She didn’t want to do this, and still kept her husband at home, with some part time help.  She refused to have someone live in -- even though the house could have accommodated such a caregiver.  Finally, after her second stay in the hospital, her children stepped in, and forced the issue.

At one point, after her husband had been in the hospital and then the nursing home, and then home,  and then back to the hospital and nursing home -- she said to me "I thought I would have another 4 or 5 months with him at home." 

It was only at that point she also had someone stay with her husband at the nursing home during the day, so that she did not have to rush in the morning to get there.

It was very difficult for her to force herself not to do everything.  And even afterwards, she sought help from a psychologist to help ease her own feelings of guilt and inadequacy.

Several years ago, at a woman’s conference, I came across a poem entitled "Superwoman."  The jist of it is that society expects us -- women -- to be superhuman -- to do it all.  Women are brought up to do it all.  And if we can’t do it all, then there is something wrong with us.  (Write me a note and I’ll send you a copy -- free.)

Then we’ve had the women’s LIB movement, which, yes, has indeed changed society in a number of ways.  But it has done terrible things to women.  It has reinforced the old belief that women can and should do it all.  Additional responsibilities have been added to a woman’s life, and none have been removed.   Now in addition to having to take care of the house,  cleaning and laundry,  shopping, cooking, taking care of the children and spouse,  the woman is expected to take care of aging parents.

The female gender stereotype indicates that if a woman feels bad about not being able to do everything for everyone else, it’s because   she is no good.

This societal attitude that women should be superhuman is a diagnosis for becoming neurotic and physically sick.  and needless to say, this isn’t good.

We saw this very clearly with the two examples I mentioned in the beginning of today’s visit.

There is another important factor that impacts elder caregiving responsibilities. Remember the words we used in our first visit   when we talked about the parental role when we raised our children??

Remember we said that a parent nurtures

 

loves 

has fun with

provides emotional support

 

protects

encourages

takes care of

guides

is responsible for

AND disciplines

empowers

 

 

teaches

 

 

Nowhere does it say we have to do everything for another person -- regardless of age.  We don’t do everything for a child, except when it is very very young.  We don’t do everything for a spouse.  So why must we -- and by whose say so -- do everything for an aging parent.?

In my own case, when my mother, at 85, became ill very suddenly, I had  to oversee her medical care in the hospital,  as well as take over running her real estate business and make sure my father, then 90, was ok at home.  In the beginning, I tried to do it all -- overseeing  care for both of them,  running the real estate business, grocery shopping for my father  as well as myself,  taking care of my own public relations business and home, and worrying about an African high school student I had living with me at the time.

I quickly admitted I couldn’t do it all   alone.  And I soon adopted the management philosophy that I had used successfully for a number of years -- that if someone else can do a job or task as good as I  or better  -- then that person should do it.  That leaves me to do the things no one else can do.

In the beginning, I relied on a cousin who lived around the corner from my parents.  And then we hired a live-in housekeeper.  When my mother came home from a two-month stay in the hospital, I had a team of 4 people  providing 24-hour-a day, 7 day a week care.

I lived 55 miles away, and while I was at their house more those first 4 or 5 months than I was at my own,  I was not there every day, or every minute of the day.

My objective was to make sure they received appropriate care, in their own home -- because that is where they wanted to be -- and for them to retain as much control as possible over their own every day lives.    After a few months, we cut back the caregivers to one during the week -- and she stayed with us for more than 6 years -- and a weekend relief person, who was there for 4 years.

Early on, I set parameters as to what I would do, given my own comfort level and capabilities.  And this is the jist of many of my speeches.  I tie this in with an incident the day of one of my presentations.   I woke up and my hair was a mess.  I couldn’t do anything with it.  I called the beauty parlor.  My regular girl was not in, but the owner said  Come on in.

He had never done my hair before and asked me what I wanted.   I said  "I want to look great, because I have  to give a speech tonight."

He walked around me, looking at my hair,   and waved his comb.   Well,   he said, "I only have a comb.  I don’t have a magic wand."

We then got into a philosophical conversation about different kinds of hair, different hairdressers, styles, and so forth.  After explaining what my speech would be about, The discussion progressed into the challenges of elder caregiving.  Our conclusion was that caregiving was similar to hair dressing -- that every situation was different, --   that like everyone’s hair is different,  every person and relationship is different.    So that what one did depended on the specifics of the situations.  And, we both decided, that what may work for one person may not work for someone else.  This, in both hair and elder care relationships.

This takes us back to what we talked about earlier this visit.   That no one should have to do everything for a parent.   Yet it is more difficult for sandwich generationers to set parameters in relation to elder care than when they raised their own children.

If a child says, I want ice cream  "now"  and this "now" is 10  pm, the parent will usually say, "It’s late.  Maybe if you’re good, we’ll get ice cream tomorrow."  The child may fuss and plead, but usually the parent has no trouble standing his or her ground.

But what happens when it’s an aging parent, who wants the ice cream NOW  - or calls at 9 pm and says I only have one slice of bread and always have two with my coffee in the morning.  Many children will run out to the store at that late hour and get bread.  Instead, they might say, "Mom, it’s late, I am ready for bed because I have to get up early.  Use the one slice of bread for breakfast and take some crackers if you want more with your coffee.  I’ll get you bread tomorrow"   

Quite frankly, the end of the world is not going to come because that older parent does not have 2 slices of bread.  Yet too many daughters  - and sons -- would feel guilty about not running to do for their mother -- even at that late hour.

I had a similar conversation one day with my father.  I had just brought the groceries in and he said he needed more pudding -- that day.   I asked him how many there were in the refrigerator.   "Three"   he said.    So, I said  "OK when I come up on Thursday, I’ll bring some more."    He wasn’t too happy with my answer,  but he had enough to last a couple of days --  and the world would not come to an end even if he had   had to go one day without any.   

This may sound harsh --  but I can tell you many stories of parents pushing such buttons and adult children jumping.  .

When Ruth was young and threw temper tantrums, I’d walk out of the room.  Or go to another part of the house.  Toward the end, when my mother became  irrational, I did the same thing.  I would get up from where I was sitting and go to the bathroom.  That way she didn’t think I was giving in to her, or ignoring her.  When I came back, I changed the subject we were talking about.

Adult children need to understand that their feelings of guilt may be natural -- but that doesn’t mean they need to act because of guilt or feel guilty in the first place.

Sandwich generationers often -- and needlessly -- talk themselves into  guilt trips and traps.  It’s easy. 

These are some of the thoughts that may go through a sandwich generationer’s mind in relation to parent care.       I must be perfect;    please others;    always be right; be in control;  help others.    And that old phrase which I’ve heard so often   "I can’t stand it when people are angry with me."

Gary D McKay, Ph.D, and Don Dinkmeyer, Ph.D, in their book "How You Feel is Up to You"  explain, "You can determine how you talk yourself into guilt feelings by examining your thoughts.  Guilt-producing thoughts often result in statements about your personal worth  and are fraught with absolute terms,   such as    should,  must, always, never, can’t, awful.   When you attack your own character instead of simply judging your actions,  you feel guilty.  If, however, you concentrate on the action you don’t like    and refuse to evaluate your worth based on mistakes,  you’ll feel remorse,  but not guilt.   To  get rid of the guilt, you need to choose new  self-talk.  You need to get rid of absolutes and statements of self-condemnation."

One family counselor I knew gave this advice when I was writing an article on guilt. "Change the things that can be changed,  and accept the others.  Accept the fact that the elder is not going to change or get better.  Accept that you cannot make the elder better,  because it may be that no one can."

She noted that unhealthy guilt comes from trying to live up to or by someone else’s standards.  "These standards or values may not be true for us.  So," she says, "we  may feel wrong, unworthy.  We feel angry or frustrated because we can’t live up to someone else’s values.  These negative feelings use negative energy and end up as guilt.

"Negativity within one’s self, if buried, unexpressed and not dealt with,  festers and becomes a major problem."

Those of you who are now in the sandwich generation and those who are coming into the sandwich may have more trouble in handling elder care responsibilities then the generations before you.   Baby boomers, especially, are going to be especially hit hard.

Why?  Because of the geographic dispersement of families, baby boomers may not have not developed a strong adult-to-adult bond and relationship with their parents.  Hence the older parent still looks at the son or daughter  as a ‘child.’

Parents always have a tendency to view their kids as kids,  often regardless of age or accomplishments.  I would say to my mother  "Were the kids here"   Or  "have you spoken to the kids."

The "kids" at that point were both married, with children of their own.  One of the husbands is a 6’3" hunk of  a man, a well respected doctor in Phoenix and chief of medicine at one of that area’s most prestigious hospitals.

When talking with his mother, who is a good friend of mine, I still refer to "the kids."  In this case,   the "kids" refer to both the  now adult mother and father -- and their three sons.

Dr. Mary Pipher, a psychologist with a special interest in cultural changes, has written a very interesting book called  "Another Country."  She talks at length about the baby boomer generation in relation to other generations.  Because her views mirror mine in so many ways, I’d like to share some of her comments with you.

In her book she says, "We baby boomers have been a futureless generation, raised in the eternal present of TV and advertising.  We have allowed ourselves to be persuaded by ads that teach that if we take care of ourselves, we will stay healthy.  Sick people, hospitals and funeral destroy our illusions of invulnerability.  They force us to think of the future."

She adds, " We are likely to be in deep denial about death, to feel as if we have plenty of time, that we have an endless vista ahead." 

With this in mind, when a crisis with aging parents occurs, the shock alone can immobilize us and create major psychological problems that baby boomers will have to overcome.

Still further about our society Dr. Pipher discusses how baby boomers were brought up  and how their parents in turn were brought up.    "We all learn when we are very young  to make our own personal declarations of independence.  In our culture,  adult means  self sufficient.  Autonomy is our highest virtue.  We want relationships to have no strings attached  instead of understanding,  as one lady told me  ‘honey, life ain’t nothing but strings.’"

She continues,  "Our ideas about independence (have) hurt families with aging relatives.  As people move from the young-old into the old-old stage,  they need more help.  Yet in our culture we provide almost no graceful way for adults to ask for help.  We make it almost impossible to be dependent, yet dignified, respected and in control."

The old-old feel ashamed of what is a natural stage of the life cycle.  In fact, the greatest challenge for many elders is learning to accept vulnerability and to ask for help, Dr. Pipher notes.

This is another kind of guilt.   Guilt on the part of elders -- who need help, but are ashamed to ask for it.  By admitting they need help, they are taking away something from themselves -- their own self-esteem.

Dr. Pipher puts it this way   "The old don’t want to be dependent in our dependent-phobic culture.  And we young are afraid to get sucked in.  We’ve been educated to the dangers of closeness and well warned about entanglements.  What we haven’t learned about is the serenity and safety that come from extended family and community.

"Over the course of the century the relative values of dependence and autonomy have been totally reversed."

Well, time is running out today.  What has today’s visit been all about?

Well, first, I hope you understand that you’re not alone in having to meet new responsibilities in relation to your aging parents.  25% of American families are involved in elder care scenarios, and in the next decade or so, it is expected that 59% will be caring for aging relatives.

Second,  understand that you can’t  and shouldn’t  do it all yourself.  We’ll talk about help and resources another time.

Third, don’t feel guilty if you say "no."

And fourth, if you’re a baby boomer, perhaps you’ll have to try a little harder to take over the leadership role.  You may have to exert a lot more patience with your aging parents then you have had to with your young children.-

Time has run out today.  I look forward to our visit tomorrow, when we’ll talk about Medicare, what it pays for and what it doesn’t.  You’ll be surprised at what it doesn’t pay for.  And we’ll talk about Medicare HMOs.  Also, whether or not you and/or your parent should join an HMO.  My own feeling is that the scoreboard is still out on this one.  Learn why in Conversations With Carol #7.

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