The Burden Interview: Of Mothers, Caregivers, Sons and Daughters

"You're better at it," wrote my brother in an email after I complained that he wasn't doing anything for our elderly mom while I was doing everything. 

His words still sting like a bumble bee.

Was that really supposed to appease me, or my primary care physician who was becoming extremely concerned as my blood pressure was rising higher and higher and higher and I was becoming pre-diabetic from lack of physical exercise? Or was it supposed to provoke?

Add to that the layer that he, my brother, lived only 20 minutes away from our mother, while I lived 300 miles away. 

A Boston-based 2012 study indicated that daughters, twice as often as sons, become the elderly mother's caretakers. But still, sons comprise up to 30% of those care giving for elderly parents.  In Canada up to 30% of those caring for elderly parents are sons, shows a Canadian study. The "elderly parents" are usually mothers, since women generally outlive men. 

While the men in the Canadian study indicated positives as well as negatives in caretaking, they still assumed that responsibility. Married men generally had the support of their wives, with whom they discussed decisions they were making. 

So how does it get to be the daughter living six hours away becomes the primary caretaker when the son, living 20-25 minutes away, does virtually nothing? And what repercussions does this have on my, the caretaker by default, health, finances, social life and emotional well-being?

After another email months later to my brother in which I outlined everything I'd been doing vis a vis my mom and the toll it was taking on me, his response was "Thanks."

Mine back was was "I don't want your thanks. I want your help."

While I could never anticipate my mother's declining cognitive, and physical, condition, I also could never anticipate that I would get absolutely no help or support from my "bro" or support from my sister-in-law, receiving instead just the meek justification for why it was that he was totally defaulting on the small things, including asking for information about her current health, and the very large and major things and decisions.

The word "burden" is used repeatedly in all studies about adult children as caretakers of elderly and frail parents.  And it completely amazed me that there is something actually called "The Burden Interview," which I discovered on an online search.

This discovery was a true relief, and I gladly read the questions and circled my answer, recognizing so many aspects of what the questions addressed. Twenty of the 22 questions on the Zarit Burden Interview begin "Do you feel....."  or "Do you feel that..." One question begins "Are you afraid about..." and the last and 22nd question begins, "Overall, how burdened to you feel..."  Answers ranged from Never (score of zero) to Nearly Always (score 5).  I wish that the question "Do you feel that your health has suffered because of your involvement with your relative?" should score a 5 and that my doctor's feelings about this should add in a bonus 5 points. Feelings are big in this test.

Test takers have 30 minutes for this test. Mine took much less, let's not say how much less. Then I added up my score. Yup! "Moderate to Severe Burden."

The one question that I'd like to see the questionnaire ask is: "Do you feel angry at other family members who are doing less than you are?" or "Do you feel that other family members should be doing a better job at caring for your relative?"

I do, and I do. I wish the Burden Interview asked these questions because the complete lack of participation in my mother's caregiving by the person geographically closest to her adds a lot of stress too.

When one family member is clearly dis-involved, and wants to dis-involved, there is no communication that is going to get you the understanding, and the help, that you want. There is no way to go but to accept that and let go. To do otherwise would be to increase ones emotional stress, and therefore burden and the consequences of that. 

"Anger deprives the sage of his wisdom, a prophet of his vision," says the Talmud.  More conversations, more attempts to get somebody to see your distress or point of view would end in just more frustration, and disappointment, and a self-destructive cycle of anger.

CARETAKERS of ELDERLY PARENTS: How many others like me are there out there? I would guess I'm not the only one. 

It's often repeated how commonly families break up over money, especially after the death of a parent and the distribution of the estate.

Or, in this case, they functionally and emotionally break up long before. And when that's the case, don't hang on and let it raise your BURDEN SCORE even more!!

There's Always Edible Arrangements for Mother's Day

I don't feel like sending flowers. I don't feel like it, and anyway, flowers just die.

Two weeks ago I arranged the Peapod order to include fresh pineapple single serving cups. My mom has never tried those and it was worth a go. Perfect serving sizes for seniors, easy to open and to dispose of (including to recycle). She loved them. So much so that one week later when I asked her to have one, there were none left. I had the aid look, thinking they had to be somewhere, then the other aid. "She ate the last one."

I guess the pineapple single serving cups were a success. Healthy food, healthy living.

So then what? Peapod has a $60. minimum order. With the $10 delivery charge, that's $70. A lot for just pineapple single serving cups.

So instead of flowers, I ordered her the Edible Arrangements.She'll get her fruit and flowers all in one.

And they come in a handy practical container that can be used anywhere for anything - much better than a glass vase that can break and be dangerous.

And if none of my relatives WHO LIVES LOCALLY, i.e. if none of her other two children show up to to the decent thing, at least she has a beautiful bouquet of edible fruit, that will last her well through the week.

The delivery guy showed up at 10:30 this morning, very early, very nice, for Mother's Day. Beautiful.

Why I Hate Mothers Day: To All the Daughters of Unloving Mothers

Here we go again.

Psychology calls it the "Unloving Mother." Others call it the "Not Good Enough Mother." If you're like me, either term will do. We have the experience: The label tells us that we are not alone.

Mother's Day is coming up.

And another instance when my mother figured out how to obtain money she didn't have for the drug addicted unnamed family member just passed.

For somebody who has to ask what day it is, she has an extraordinary ability to find out which rock to hit to get cash from it. I discovered this latest ruse late last night, when I looked onto her statement.

"I don't recall doing anything with $2000.," I thought to myself. That's because I had not. She had telephoned the bank and had had the maximum funds transferred from her Overdraft Line of Credit into her checking account, and written UFM a check for that amount, which he promptly went to the bank and cashed, and there it was, in "pending" although the check had already been cashed. It was too late to stop payment but I filled out the online stop payment form and clicked, as reason for stopping check, "coercion." I had to wait until the morning to get through to the bank service reps for more information.

Morning. Service rep:

"I'm going to connect you to the fraud line," she says. "You said it was coercion."

"I'm not interested in the fraud line," I tell her. "Are you going to arrest my XX year old mother?"

"No, but it will go into collections, and she'll get telephone calls," Ms. Friendly Banker Representative Supervisor told me.

"Well, she's not making payments on it."

"Then when she dies the executor of her estate will deal with it."

I can't bear the sadness around this relationship. There's a continual yearning to have closeness with ones mother. That never goes away, a fact that I wrestle with. It will take me many many years to heal from this. God give me the strength.

Mother's Day is a few weeks away. I'll be mourning the relationship I never had, and the way I was lied to, over and over again, even as I attempted to take care of her in her old age, in her withering days. But I"ll be trying to have a good day, a day that I can have some control over.

When your mom is mentally ill, or elderly, there's always a question of how much to hold onto that relationship and how much to let go.

Days like Mother's Day have created huge conflicts in the past. This year it will not. Maybe I'll hire her an aid to make sure she's up and alive, but I will not call and I will not be conflicted about it. There's so much reality around this now, - it's impossible to ignore. It's impossible to feel, to know, each time I phone her, that I am not being authentic with her. That when she says, "Why are you tired?" that I'm not painfully aware that the real answer is "Because I"m tired of dealing with you and your lies and your depression and your mismanagement of all your money and that UMF gets literally your last dollar while I try to keep you alive, and still you persist; that you are always thinking about how to get money to UFM, even though you never let on.  That I am being crushed under its weight. That I simply cringe every time you say 'I love you.'"

Maybe the next day she'll say something about my not calling. Maybe I'll say, "Oh it was Mother's Day? I didn't realize!"

This Mother's Day is to all the suffering daughters of mothers who are not good enough, to all the daughters of mothers that Psych Today calls "unloving" mothers, to the daughters of mothers who do NOT put in that call, and do not send that card or buy that box of chocolates, who try to remain authentic to themselves and hold onto reality because our hearts don't just break once... They break again and again and again.

Drug Addiction and Grandparents: The Unfortunate Link

Drug addiction requires two things: Drugs and a User. 

To sustain a drug addiction requires three things: Drugs, a User, and an Enabler.  

Anybody can be an enabler. 

Your grandfather could be an enabler. Your grandmother could be an enabler. Your father could be an enabler. Or your mother. Or your mother to her grandchild. And in fact, a grandparent is often the most likely person to become the enabler.  

Grandparents are likely to become enablers because they may be raising the child of their son or daughter (often because their son or daughter is a drug addict). Grandparents may be lonely and seek the companionship of their grandchild. Grandparents have accumulated financial resources that the grandchild learns how to access.

Dr. Allan Schwartz writes (bold added): "It is a well know fact among drug and alcohol counselors that the worst enemy of the abuser is money. The reason for this is that money becomes the means the addict makes purchases of more drugs to feed the addiction. Because the addict is a person who has learned the fine art of manipulation to get what he wants, he knows how to convince loved ones to provide the money he needs to make more drug purchased. If it means telling lies the addict has no compunctions about doing so. Enabling occurs because loved ones generously provide money to the addict in the naive hope that no lies are being told and in the hope that it will help him recover. It is amazing how family and spouses blind themselves to the facts about what is really happening."

I have lived with this situation for many more years than I can count. It gets me dizzy thinking about how long. I could see the beginnings of the codependency long before the drug use began.

Many of us of the "sandwich" generation are experiencing the pain of watching our parents age, lose their health, their memories, and so on. A subgroup of this generation is also experiencing the pain of watching our parents simultaneously go broke, all due to their role as co-dependents to somebody with a drug addiction.

Treatment centers focus on the addict, on the actual drug addiction. They ask family members to participate in counseling, but it's completely voluntary on the part of the family members, the enabler(s). If the addict can go back to the codependent relationship, and continues to engage in the same behavior as before, denial, help with financial resources, lying, etc., the addiction goes on and on, and the grandparents resources will quickly run dry. 

When you are a family member and you see this happening before your very eyes, what can you do?  Anything?   

What is to guide us through these rip currents and perilous channels?

Wrote the wise King Solomon:

A time for tearing down and a time for building up;
A time for weeping and a time for laughing.
A time for wailing and a time for dancing...
A time for seeking and a time for losing.
A time for keeping and a time for discarding...
A time for silence and a time for speaking;
A time for loving and a time for hating;

Doing Your Elderly Parent's Taxes - Today We're Doing Mom's Income Taxes

Yes, 60 can be the best age, the kids are out of the home, if we are lucky we still have our health, we may or may not have paid off the mortgage. But if you are sixty that means your parents are eighty or eighty five, or even ninety, and that means that your perfect age is now spent toiling over their health and over their wealth. Or the remnants of their wealth.

And that means toiling over their annual income taxes. 

Are you prepared for the day when you will have to prepare, or have prepared, your parents' income taxes? Among other things?

THE OLD DAYS 

My mom used to do her income taxes with a commercial establishment, in her case H&R Block. She worked full-time until she was 85 and would bring all her papers over there and it was easy.

By last year there were several significant changes: she had quit work, she couldn't drive any longer, and I had Power of Attorney. 

I contacted her tax agent, who said that if I could get all my mom's paperwork to her electronically, that she could file for her, as usual.

LAST YEAR 

Last year was an awful year: My mom sold her home, got divorced, and moved again.  I was often focused on those things, by necessity. It was also difficult for me to work my way through her paperwork, given her unique 'filing system'. And I don't know too much about taxes and mortgages or mortgage credits or what would constitute her tax paperwork in the first place. So this in itself involved several trips, airfare included, to go through her paperwork and seize the goods.

Once I had the goods, I had to scan everything, make electronic files out of it, and send everything to her tax preparer.

The fact that it was already April - NO BIG DEAL - I jest, because I enlisted my brother the lawyer to file for a late tax return.  Would I have known how to do that? Would I have had to time to figure out how to do that? Not in your life. 

From there it went rather easily, until it was time to actually file. I forgot to ask the tax returner to have the IRS direct deposit, until I remembered to tell her to have the IRS direct deposit into her checking account. So she had to do something - I don't know what - and get that corrected. DO NOT FORGET TO HAVE THE TAX AGENT DIRECT DEPOSIT.

Federal and state, done.

Another year later, another tax season. What would change? What could change?

Plenty. First of all, another move, another address. Second of all, a brother who has completely disconnected from me and almost entirely from my mother. Any chance of his filing for a late return? Next question. Putting my anger and resentment toward him aside....

NOW

What has also changed from last year is my mother's financial status. And how quickly it does change.

With less money now than ever, with the home sold and the proceeds now distributed between her and her ex-husband, and the monthly fees attached to living in independent living, she can no longer afford the tax filer. And she's no longer driving. That means my husband and I are downloading TurboTax on this windy but sunny Sunday afternoon, and doing and filing her taxes. I also think that it will be faster for me if we just do it ourselves, rather than my scanning everything, emailing everything, and doing through what I went through last year. Last year it was the most convenient thing. Even at that, the tax preparer and I were back and forth and back and forth with emails a zillion times, and it was me thinking through everything, "Is she entitled to medical deductions? Is she entitled to this and that?" This year I think doing it ourselves would be the most expedient thing.

TODAY

 

So today we are doing my mom's taxes. 

 

 And I suppose that this, among everything else associated with taking care of your senior parent, is now the way it will be. 

 

Are you prepared?

Eat your vegetables, Mom.

Mom has to eat. 

But she likes to sleep very late. Very late. This is a problem because she occasionally wakes up slightly hypoglycemic and dehydrated.Then she doesn't have the strength to make it to the refrigerator or the kitchen.

Mom also likes to drink wine. She can get dinner with wine every night. This is nice. She feels great in the evening after dinner. But it is a double-edged sword because with the wine she feels great, but in the morning she wakes up slightly hypoglycemic and dehydrated.

Parenting magazines are encouraging parents to teach their kids to love vegetables and fruit. They're encouraging parents to not try to hide the vegetables and fruits in another dish, say a casserole, but to appreciate the veggies as is. They're encouraging parents to serve fruit for desert, rather than carbs.

Isn't fruit salad what we, when I was a kid, used to eat for desert?  I remember as a kid always having fresh fruit salad for desert. Even in restaurants. Rice pudding was about as sweet a dessert as we ever got. Ready-made cakes weren't as available as they are now. Economic policy and a more urban lifestyle has also made carbs cheaper and more affordable than fresh fruits and vegetables.

Over many years, Mom has become too dependent on sugar and cake: THAT IS, she has become too dependent on carbs for the main meal and carbs for desert. Carbs and simple sugars, which are carbs. 

Is my mom any different from most seniors? Or most of us, who want to hang onto eating what we like?

Now I ask her to tell me what she has in the refrigerator. 

"Cantelope."

"Great. Have that." I hear her chewing away. "What else is there?"

"Pineapple."

"Great. Have that. "I hear her chewing away." What else is there?"

"Spinach."

"Spinach? Great, Mom. Lots of potassium and low carbs, Vitamin A, Vitamin C...  Especially because the doctor doesn't want you eating bananas."

Of course I only know all this because my doctor is also telling me to watch what I eat because I have become pre-diabetic. He's warned me. I've learned the hard way. I'm also beginning to love my vegetables. I've been reading AARP, the magazine that nobody wants to admit they get. Frankly, my mom's not interested in nutrition. But she does listen to me. She is interested in life.

"Great, Mom. Eat your vegetables. What else is there in the refrigerator?"

Caregiver? STRESS ALERT: Take care of your own health.

"One sixty nine over eighty," the nurse at the CVS Minute Clinic said as she unwrapped and removed the inflatable cuff from my arm. "That's high. Do you always have high blood pressure?"

Always? I never had high blood pressure. I'm the one who everybody points to as living a healthy lifestyle and getting plenty of exercise.I'm the one who does yoga. Back home, I put the numbers into the search bar on the internet. 169 over 80. Hypertension. I don't know what those numbers really measure, but I know it's not good.

My annual medical exam was scheduled for the following week. I would get my blood pressure remeasured by my primary care physician, and we would discuss this.

One week later, it was slightly lower but basically the same thing. It was as high as that of some long-time heavy smokers I know. 

THIS is stress. Stress caused by a full year of managing, or dealing with, my elderly mother's issues. Trying to save her from financial devastation and medical destruction. All the while I was trying to write, publish, and promote my book, and other creative and professional endeavors (not to mention time and energy for my husband). I knew that I wasn't getting much exercise, I wasn't sleeping well at night, I knew that my routine was so centered around her, but I never gave a moment's thought to that this might be affecting my own health in some major way. I knew I didn't have as much time for my work and writing and my book as I would have liked, and that created internal - I would call them philosophical but they play out in the real world and in real lives - debates about taking care of others vs taking care of self. I knew I was stressed but you should see the looks on people's faces when I tell them I have hypertension.

"You?"

At my annual medical exam, my doctor asked the usual questions: "Are you getting exercise?" My response was limp. Sometimes riding my bike, but no long distances any more. Sometimes but rarely getting to yoga. Sometimes but rarely running. Playing tennis with my husband, but only on Sundays in the spring and summer.  And my doctor told me to get more exercise and come back in three months and get retested.

This in combination with also being told I was borderline diabetic created some serious talks and evaluations regarding how I manage my own health, diet, life, and also my mother's.

This is what I learned:

• Walgreens is amazing for anybody with high or low blood pressure. They will take your blood pressure for free. When you go, write down the result, and date it. I keep mine on my "notes" on my iPhone. I went monthly. With Walgreen's, there is no excuse for not getting your BP checked. No Walgreens? There is surely some pharmacy nearby. Senior centers often have regular and free BP screening.


• The gym was amazing, especially given this awful winter. Even without the winter, it gave me a routine that I could stick with. I usually went late afternoon or early evening. I made sure I listened to music on my iPod that was relaxing, but kept me moving. For me this meant Neil Young, especially "Harvest Moon." I had a full workout, including 20 minutes running on the indoor track. Once a month I would use the steps machine, which would measure my average and high heart rate. THIS TOO I would write down and keep a record of. Because I don't have enough time to go to the gym and do yoga, I incorporate my yoga breathing and 'asanas' and relaxation techniques into my gym workout.


• Vulnerability. We know we are stressed but it's more difficult to acknowledge how that stress is affecting us physically, and the degree to which it is affecting us physically. While some physical conditions are beyond our control, high blood pressure is often well within our control.  As we age, we become more and more vulnerable to stresses on our system. We are faced with conflict - ourselves vs those we love. And some of us are in the "sandwich generation." There are things I couldn't not do: Help my mother with her divorce, help her move from her home to her apartment, help her move from her apartment to the senior community, and so on. But many things, such as maintaining her car and making sure those bills were paid monthly, were unnecessary and only added stress to my life and my body. oing off for the day or weekend or week with my husband became an big deal, because nobody else in my family was willing to share responsibility for our mother with me. Dealing with the continued blood-letting of my mother's finances in her codependent relationship was another that I ultimately had to take by the horns, be strong, and weather the harsh disapproval that I knew I'd be up against.


• Don't miss your annual medical exam. Schedule it. Put it in the system. Then make it to your appointment. If you're afraid of what the results will say, then face that and ask yourself honestly what you can do differently to make sure that your health is not irreparably damaged and that you haven't given yourself reason to avoid going to the doctor's. Have this discussion with your spouse or significant other, if one is in the picture. My doctor warned me, and I gave myself a goal of three months to get my emotional and physical house in order. Me, the healthy one.


• Do what you need to do to lighten your burden around your elderly parent. That will pit you against your parent but for your life you need to. For me, it meant selling her car, and other difficult actions I write about. We fought. Often the fights were about her desire to have her car, versus my need to reduce my stress level, which was, literally, killing me. The fights were horrible because they pit me and my needs, physical and emotional, against my mother, who couldn't "hear" me, and what she wanted to do. The fights brought up other feelings and long-term issues. But being dead is no picnic, either.

The next time I got my BP taken, just one month ago, it was 142/74. Lower but still hypertension. 

Today was my last visit before my three-month visit to my doctor for a retest. 

This morning I went before I had my morning cup of coffee. The pharmacist came out and took the reading. My BP was 120/79. I phoned my husband and reported the good news, as if I were 14 and had gotten straight A's on my report card. Then I came home, had my coffee, and made an appointment for my 3-month checkup.

And wrote this blog post.