Before the first meeting, I usually believe I have a grasp of the situation. During the meeting I learn that grasp is on a rickety handle. As I listen to the various points of view, the “neat sketch” I compiled earlier transmogrifies into abstract art: facts are disputed, arguments ensue, solutions are found wanting. I’ve learned — finally! — not to develop specific recommendations prior to a meeting. Instead, I carry in a general notion of the options. As the meeting progresses, I hone this general idea into a neat approach to solving the problems for the elder and family.

To my dismay, elder and family rarely jump at my neat package; don’t care that it took great pains to assemble. My ingenuity, insight, and judgment, go unadmired, underappreaciated. Why are my clever solutions rejected? Because, as it turns out, people and their circumstances aren’t neat little packages; they’re messy confusing packages, and, unfortunately, as they age, often become messier and more confusing. For elders, there are many reasons for that mess and confusion. Here are the common ones:

Fear of change: Most of us fear change, i.e., the unknown, and to the best of our ability, try to avoid it. For elders, change is even harder because more often then not, it is thrust upon them: They lose functioning and they lose family and friends. Elders are less likely to make changes voluntarily because they are forced to deal with so many changes that are not voluntary. While, for example, I might think a move from home to an assisted care setting is reasonable, elders may be reluctant to abandon the scene of their history, memories, and youth.

Family dynamics: With sufficient pressure from her children, Grandma may agree to assistance but not be genuinely committed to getting help. If one of her children is shoring up her care, Grandma may not recognize how much aid she needs and may not see a reason to make a change.

Dementia: Bills are being ignored and pots are left heating on the burner. Memory loss sneaks up on Mom but neither she nor her family take notice. Both may refuse to acknowledge that there’s a problem.

Money: Many elders are unwilling to spend much, if any, money on their care. Depression-era seniors have a unique concept of how much things “should” cost, and cannot bear to pay a penny more. They may even think services should be free. Also, they may want to conserve as much as possible to pass to their children.

Fear of losing independence: Grandpa may regard accepting help as the first step towards being seen as completely dependent and on the slippery slope to a nursing home.

Ageism: Many elders do not view themselves as old. If I recommend an adult day health center, retirement or assisted living, they’ll respond: “I don’t want to be with all those old people.”

Who’s the decision maker?: His children may be helping Dad make a change, by scheduling visits to assisted living or by setting up an assessment by a homecare agency, but the change may be thwarted by Dad if he has no intention of either moving or hiring care. While his children may believe change is necessary, Dad makes the decisions as long as he’s competent. Providers may get trapped in the middle.

Each of the above can interfere with elders making those changes that can help them function as independently as possible. In our brief contacts with elders and their families, these issues are not easily seen or readily solved. Lives are messy, cases are messy.

Could you be that frog? It starts simply. While shopping, you pick up a few items for your elderly, widowed father. As time goes on, you get more and more items for him and make extra stops at various stores. Before you know it, you’ve taken on all his shopping and errands. Next, the laundry becomes too difficult for Dad. So, being the dutiful daughter, you’re now washing, drying, and folding his clothes. Then, Dad begins to have difficulty cooking so you bring over a couple of meals a week. Then, well, you get the picture. Before you know it, you’re neglecting your own household and work responsibilities and are so stressed you’re ready to implode.

And what does Dad think about your help? He thinks he needn’t spend any money on his care because “my daughter takes care of it.” He has learned to take your assistance for granted and so have you. Both of you forget how much you do and how long it takes to do it. If Dad has dementia, it’s even worse; he may forget all the “little” things you handle.

While Dad is proud of his ability to live “independently,” you, being human, are growing resentful of the increasing time you spend caring for him. So you bring up the possibility of hiring help and come up against his attitude towards money; i.e., he doesn’t want to spend any. He may even play the guilt card to ensure that you continue to pick up all the chores he is no longer capable of handling. So there you are, boiling, and you can’t jump out.

Here’s another example of a caregiver in a pot. Your wife, who suffers from multiple sclerosis, is experiencing a steady decline and is becoming dependent on you for all of her care. She can no longer move from her wheelchair without help, so you must be with her all the time. Actually, someone must be with her, but she will accept help from no one but her husband. She is unwilling to recognize the amount of stress that results from providing constant aid, and you are unable to identify and state your needs. The situation moves to the breaking point when you are diagnosed with cancer and must undergo chemotherapy.

Set limits

The best way a caregiver can reduce stress is to set limits. While respite helps, it is unlikely that someone who won’t set limits will take adequate breaks. More times than I can count, I see caregivers who take far more responsibility for their disabled spouse, parent, or other loved one than they can handle. They ignore there is a limit to what they can provide without harming themselves.

Many caregivers feel guilty if they give any consideration to themselves at all. The following example from The Caregiver Help Book illustrates why feeling guilty makes no sense: “When you board an airplane, the flight attendant gives several safety instructions. One of them is, ‘If oxygen masks drop down, put on your own oxygen mask first before helping others.’” This is a vivid example of how tending to your own needs first allows you to assist others.

Setting limits is about taking care of your own needs. When you do so, you will be more competent with those you help.

And, how?

Let’s look at a couple of examples to see how setting limits can be good for all involved.

(1) Your aging mother can no longer do her laundry because the washer and dryer are in the basement and it is unsafe for her to climb stairs. Your solution is to do the washing for her. Why not? You work only part time, and visit her weekly anyway. It would be simple to do a load while you’re there and bring it upstairs for her to fold. What you could not foresee is what happens two months later. Your husband gets laid off so you must double your job hours. Now, doing your mother’s laundry — no big deal, remember? — interferes with the precious moments you have with her, not to mention the time-squeeze for your own family.

What could you do differently? Instead of taking over, why not find a way your mother can continue to do her own laundry? Can the washer and dryer be moved upstairs? Or a tandem apartment style washer and dryer be purchased? Maybe your mother would prefer a laundry service? In any event, rather than taking over the task, focus your involvement on helping your mother find a solution.

While this approach has the obvious advantage that you don’t take on the chore, you accomplish something far more significant — you set a precedent: Rather than becoming a provider of care, you identify your role as a problem solver and coordinator. It is essential that this distinction be made as soon as possible because, undoubtedly, as your mother ages her needs will increase.

(2) Your wife has had a stroke and, due to partial paralysis, can no longer cook or do housework. While you know how to make simple meals, you have never enjoyed cooking, let alone eating your own cooking. And, after decades of an old-fashioned marriage, housework is a mystery to you. Your life has become a bowl of chores.

Although you can afford it, your wife doesn’t want to spend money on help. Remember, the cared for may not be able to recognize the adverse effect the changes are having on the care giver. Is your misery good for either of you? Set limits for the sake of both of you — for the sake of your own well-being and for the sake of how your attitude effects your behavior towards your wife. If you have it, spend the money. Hire help for meals and housekeeping. You will both be better off if you don’t have to do chores you hate, and if you have time to pursue interests that sustain you.

We help others for many and often complex reasons but, for the most part, we feel good when we care for those we love. Nevertheless, if we neglect to set limits on how much we are able and willing to do, we risk feeling resentful rather than good about the help we provide.

Still, the mishap with the pan makes her anxious about using her stove; she stops preparing meals and turns to snacking. She has never had a large appetite anyway. No problem, she rationalizes.

To family, friends and neighbors, she seems to be doing well. She is in good health and remains physically and socially active. She continues to read regularly and discuss current events. She is proud that she has always been regarded by friends and family as competent, independent, and above all, smart. It is distressing to her, however, when she realizes that she can no longer follow the plot of a novel from the beginning to end. She forgets who the characters are and gets their motivations confused. Nothing like this has ever happened to her. And still she tells no one.

Eventually, her poor nutrition lowers her resistance; she catches pneumonia. She is hospitalized and a dramatic change in her behavior is noted. She doesn’t want to take medications and attempts to leave the hospital. They transfer her to a geropsychiatric unit where she undergoes an extensive evaluation. The verdict: she suffers from dementia. She continues to try to escape the confines of the hospital; they put her on medications to calm her. Once stable, she is transferred to a nursing home — a nursing home with a secured dementia unit.

Rose, from the inside

Rose had been undergoing a gradual cognitive decline. She did such a good job hiding it, from herself and from those who love her, she accelerated her decline by not taking adequate care of her health. What followed was a rapid physical decline and a dramatic change in behavior leading to equally dramatic medical intervention.

Now I want you to step inside Rose’s head with me:

You’re living on your own and have tricked yourself into believing that the changes you see in yourself do not require any changes in your daily habits. You continue to be proud of your intellect and competence and want to make damn sure that others continue to be proud as well, especially your children.

Then, suddenly, you’re sick, delirious. Complete strangers force you to take pills, force you to stay in the hospital. You want very much to go back to your condo and resume your life. The life you enjoy. And you desperately want to get back to your old self, the self you are proud of. There is nothing familiar about this place, nothing that reminds you of who you are. But you’re surrounded by people — doctors, nurses, aides — who are in your face with their ignorance of who you are. “Take your medications. You have to stay here. No, you can’t leave. We’re just trying to help you.” They see you as sick and suffering, unappreciative and uncooperative. They have no idea who you are, who you have been. They do not know your story. They do not see your self.

Now you are in a locked unit. You have never had to wonder what was on the other side of a door. You just went over, opened it, and walked to the other side. And your mind, your innate intelligence, has always allowed you to open many figurative doors to other worlds. Now, an all too real door is closed.

Now I ask you: Wouldn’t you want to go out that door?