The Alzheimer's Digest: The Caregiving Wife's Handbook

In her book The Caregiving Wife's Handbook, Diana Denholm combines her professional experience as a certified psychotherapist with her experiences as a primary caregiver for her husband for more than ten years. In doing so she provides you with tools and strategies to help manage anger, guilt, stress, and resentment; understand whether your actions as caregiver are appropriate; broach awkward but important subjects such as hygiene and intimacy; and negotiate sensitive topics such as driving and financial and legal matters.

What was your motivation for this book?
Diana Denholm: Caregiving damages and destroys people and relationships. Rather than suffering irreparable destruction and regret, you can use specific tools to get through your challenges emotionally whole and with compassion for yourself and for each other. Rather than suffering from the adversarial relationships caregiving creates, you can discover how to bring loving relationships back into your life.

The backstory to my motivation began when I was two years old -- when my dad had a heart attack. He survived but had many medical problems the rest of his life. I watched my mother go through drama and trauma for over 40 years. But I could only see it through my eyes -- not hers. And I had no idea what she could possibly be going through. Here she is caring for the person she is in love with -- and losing him at the same time. How do you do that?

Well, finally, I "got it." I finally saw it through her eyes because it happened to me. My love was diagnosed with colon cancer -- with very little chance of survival. Although he got through it, a year later he developed congestive heart failure. Then I spent every single night listening to his heartbeat and wondering if he'd make it through to the next day. And without realizing it, I became my mother -- same pain, same challenges. Eventually my husband received a heart transplant, after which his body began to fail him even more. He had a laundry list of ailments from skin cancers to depression to a sleep disorder to Parkinson's, and kidney failure that required dialysis. And somewhere along the way, he decided he'd had enough. It took him about six months to do it, but he decided to go off dialysis knowing he would die in five to ten days.

Yet with all of my experience as a medical psychotherapist, I was never prepared for anything like this saga. I had to blaze my own trail through 11-and-a-half years of caregiving. There wasn't a road map for getting through this while keeping any semblance of sanity or any semblance of self. And what about survival? A lot of caregivers become sick themselves. Some commit suicide, others become objects of abuse, and some become abusers themselves. But this does not have to happen. So, I decided to do everything I could not to let anybody else go through anything like this. To that end, I also drew from my 30 years as a medical psychotherapist, along with interviews with caregivers from varying socioeconomic groups in order to create a broad foundation of practical tools for the family caregiver.

Whether you are caring for your husband, your wife, or your parents, The Caregiving Wife's Handbook is a wellspring of hope for your relationships and your life. It does not tell you how to be a better caregiver, because that makes caregivers feel inadequate and benefits patients more than caregivers. But it does tell you how to make life work while your loved one's health is falling apart. So you'll learn not only how to be sustained during these times but how to actually reclaim the loving relationships you cherish.

What are the most frustrating misconceptions noncaregivers have about what caregivers are experiencing?
DD: As I mentioned above, noncaregivers can only look at the situation through their own eyes, not those of the caregiver. And they think they know what it's like for caregivers and what's best for the patient.

Let me tell you about Marsha and Stan. For Marsha, Stan's health is the biggest project of her life. She picks his doctors and treatment plans and oversees everything about him. She sets up the house so it's comfortable for him, and so he can stay there until he passes. She selects his food, clothing, exercise plans, and social activities -- pretty much everything. And that works wonderfully when just the two of them are home.

But children, relatives, and friends come to visit. And when they visit, they ask incessant questions and second-guess everything she does. "Why are you doing it this way? Why don't you try that? Are you sure this is the best for him? Why isn't he seeing Dr. X? Have him eat my special health food."
Because Marsha may not say anything, they think she is glad they visit, that she should be happy and proud to do her "wifely duties," and that this really isn't that big a deal for her. Yet Marsha quietly thinks, "Who do they think they are! They aren't living this. They just come and go, and think they know what it's really like. Why are they asking all those stupid questions and butting in! Don't they think I have a brain? Some days I want to throw the food at them or just throw them out of the house."

Another misconception is that caregiving almost exists in a vacuum. In other words, life was fine, a person becomes ill -- enter caregiving. So how hard can it be? Yet caregiving arises in the context of an existing relationship, good or bad. And very likely, negative elements will intensify. What noncaregivers don't realize is that caregivers' problems are not just "add-ons" but escalate in geometric proportions.

How does a caregiver decide what topics are permissible to discuss with their partner?
DD: All topics are permissible. As you'll see below, it's the way topics are presented that makes the difference.

Step 1. Declare your concerns -- to yourself.
Mary had many concerns about Mark, including his unkempt appearance that resulted from major weight loss. She began with the 24-Question Planning Guide and wrote down, for her eyes only and without censoring herself, every concern or complaint she had. A typical list may include topics ranging from minor annoyances (You look unkempt. I can't take your complaining) to fears (How will I pay the bills after you're gone? You'll fall down if you don't use the walker) and everything in between (I'm sad we can't make love anymore. I wish I could get a break. I'm mad that you're still sneaking cigarettes. Your family takes me for granted).
Step 2. Choose your discussion topics.
Next, Mary learned to organize her concerns. Four categories were all she needed: A--things I want to say but don't expect a response to; B--things I want to say but won't, because it won't make a difference; C--things I want to say but should only share with a friend; D--things I really need to talk about, know about, have resolved, or make a decision about. Category D topics are the ones you will discuss with your loved one.
No topic is off limits, but the wording you use and the way you express yourself will determine the appropriate category. For instance, saying, "You really stink and I can't stand being around you" isn't off limits, but would go into C--only to share with a friend or confidant. However, saying, "I'm concerned about your hygiene" is fine for Category D and sharing with your loved one.
Step 3. Familiarize yourself with easy and effective communication tools.
Mary learned these easy tools: not asking "why" (you really don't want to know why your husband leaves the toilet seat up, you just want him to change his behavior and put it down); letting him keep his opinion, while changing his behavior (it's all right if he hates his medicine, as long as he takes it); using "I" statements (it's more effective if you don't presume something about another person by using the inclusive "we"); speaking his language (if he's very reason- and logic-oriented, for example, you might ask him what he "thinks" about something, rather than how he feels).
Step 4. Make a "talking date" with your loved one.
Rather than using the dreaded "We need to talk" phrase, Mary began, "Mark, I have some concerns about your appearance. I know I'm not handling that very well, so I'd like to talk about it. Would this evening be good, or would tomorrow morning at breakfast be better?" She used an "I" statement because it's her, not Mark's, desire to talk. Then rather than demanding the discussion on the spot, she gave two closed-end options. Since some settings are more conducive to good conversation than others, Mary picked a location where they always seemed to have their best conversations.
Step 5. Prepare for the "big talk."
Before Mary began her discussion, she took some time for herself, looked at her topic list, and briefly ran the discussion through her mind, focusing on ways to encourage mutual respect. She learned that this is not an adversarial activity. Instead, she and Mark were going to collaborate to resolve issues and problems and to plan a course of action. Then she put away her list and notes and made herself as calm as possible.
Step 6. Have your talk, and create agreements.
Mary and Mark came up with several agreements about expectations for themselves and others. They chose to write them down to include who will do what and when. This is particularly helpful with agreements about family or other recurring issues. "From now on, Mary will lay out complete outfits for Mark and will take things to the tailor that need altering -- and will no longer criticize him in front of other people." Occasionally, partners hit an impasse and have the option to agree to disagree on a topic in order to reestablish peace in the home. This is much healthier than continuing to argue over something that won't change.
Now Mary has taken all the important steps on the path -- the path to making life easier, and making her life and marriage work. She and Mark could now reclaim their loving bond.

What advice do you have about having "the discussion"?
DD: Don't wait. If you recall the story of "The Gift of the Magi," a young couple selflessly sacrificed for each other, resulting in a loving but detrimental ending. Caregivers who never raise issues in fear of upsetting the ill person may find they have to face many important unanswered questions after their loved one dies. Using the six steps outlined above will guide you to and through your discussions -- ones with effective outcomes.

What did you learn about recognizing and managing guilt as a caregiver?
DD: Sometimes you feel guilty because you have bad thoughts, and sometimes you feel guilty because you have happy thoughts. This inner dialogue helps you survive by allowing you to let off small surges of negativity without screaming things out loud or acting on them. Emotions are neither good nor bad, they just are. But too much pent-up anger or too many disturbing thoughts not only create negative outcomes, they also steal your energy. Among many healthy ways to release anger, try simply writing down, for your eyes only, all the things you'd really like to say but won't -- just to get them out of your system. It's all right that you still have a life and still can have fun. Life may not always seem fair, but that doesn't mean life is wrong. The Handbook provides many ways to work with what I call "Life in the Guilt Factory," and many common caregiver emotions including fear and anger.

Friends and family, though typically well intentioned, can often make problems worse by interfering, second-guessing, or even innocently exacerbating ongoing tensions. What advice do you have for caregivers when it comes to dealing with friends and family?
DD: When you read the Handbook, you'll gain insights that will allow you to anticipate, to understand, and prevent these situations -- the ones that cause the greatest stress and that stop you from having satisfying and fulfilling relationships with your loved ones.

In the Social Familial Issues section, Marsha quickly learned that the behaviors you describe are to be expected. She learned what to do and say when others expressed their opinions. She learned that adult children may have a need and also feel they have a right to know everything that is going on. This is to be expected and respected -- but not necessarily acted upon. Somebody else's need does not translate into being your loved one's or your need.

Marsha also learned it wasn't necessary to make somebody else wrong for her to be right, and that she could use the communication steps above, plus other tips and tools in the book, to create a better outcome. Then she and Stan could make decisions about family visits, who was in charge of what in his care, and what to do about any issues that could cause a problem from the outside -- so they could be prevented.

What is the best advice you have for caregivers in terms of simply taking care of themselves?
DD: "Self" is not a four-letter word! Permission for self-care is the hardest step for caregivers to master. And caregivers I interviewed were no exception. Like other caregivers, they couldn't/wouldn't do it for themselves, but they would to better care for their loved one. They each devised ways that worked given their finances and freedom. Hopefully their unorthodox ideas will inspire your creative thinking.

Utilize respite.
Tina's husband, Tom, suffers from dementia. She finds dealing with him takes so much out of her, yet she still gives him loving care. Each year she visits her family in Argentina for a month. She tells friends and family that "if Tom dies while I'm away, don't call me. Just put him on ice and I'll take care of it when I get home." And she's serious! In order to protect her own health, she's willing to risk criticism from everybody.
Do simple things.
Cathy doesn't have much money or a car, so she takes relaxing walks in her neighborhood. She enjoys what she calls "inner" vacations as she chants, meditates, reads, and does affirmations while her husband, Craig, sleeps. She escapes into herself in healthy ways. Cathy doesn't care if the house isn't perfect for visitors. If they think it's not clean enough, they can clean it. When her children and grandchildren descend on the house expecting to be entertained and fed, if they don't bring and prepare their own food, they don't get to eat.
Use what's in your neighborhood.
Susan, whose husband, Sam, is dying of cancer, likes "shop therapy" to get out of the house and into the beautiful havens called shopping centers. Churches can be uplifting, not only for religious reasons but for the beauty. Other shop therapy may be as simple as buying something at a flea market or dollar store because getting something new gives the feeling that there is a future.
Stay socially involved.
This is how Mary takes care of herself while Mark is dying of Parkinson's. He is able to care for himself long enough for her to lunch with friends, which she does despite criticism from some. If she doesn't attend to her social life now, she won't have one after he dies. Mary is simply preparing for her future.
Get help and enjoy your friends.
Fran, a teacher, cares for Frank, who is dying of emphysema. She arranges to have one of her children stay with him one Saturday a month and one evening a month so she can go out with coworkers.
Have fun -- get rest.
Joe has been struggling with Parkinson's for many years. Jean arranges for a neighbor to stay with him while she goes to a jazz club one night every week -- and arranges to have someone come one entire night each week so she can take a sleeping pill and get a night of good sleep.
Most importantly, know that your loved one's journey and your journey are not one and the same. You've got different things for which to prepare, so don't get lost on his path. Don't be afraid to ask for help. There are more people out there willing to hold your hand than you think.

You list 50 do's and don'ts for caregivers. Share with us just one that stands out to you.
DD: Do realize that even if you sacrifice yourself completely, it won't stop your loved one from dying. The result would just be two dead people instead of one.

Where can the book be purchased?
DD: You can go directly to buy The Caregiving Wife's Handbook on Amazon.com. On the Handbook site, not only are there direct links to fine booksellers but you'll also find many of my archived radio interviews and links to the many caregiving articles I've written.

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