This is a "work-in-progress" based on our experience with caring for Linda's mother. We place it here in hopes that it will help others who are also caring for their parents. Please feel free to e-mail me with your comments, suggestions, or personal stories to modify this article.
YOU AND YOUR AGING PARENTS
It seems unfair. The people who cared for you, now need you to care for them. It’s unfair to them because they can no longer make decisions for themselves. It’s unfair to you because they require so much of your time and attention. It may have happened slowly over time with progressive loss of ability, or it may have happened suddenly with a phone call throwing you suddenly into the role of caregiver. If you’re lucky, it may not have happened yet, but you know that the day is coming.
The role reversal is both unnerving and confusing. There just isn’t a role model that you can connect to that tells you what you really need to do. The first thing to do is get help. The most help you can get is from support groups of people who are already caring for their parents. The face-to-face contact with others who share your newly found responsibility and have already learned how to cope. There are also a number of books that address this growing concern among us with older parents.
I’m going to share some of what I learned and experienced during over 13 years of increasing responsibility for my Mother-In-Law. There are a lot of lessons that I didn’t learn but I did get most of it.
Dealing with Role Reversal
In our culture, being dependent is not something we seek. Children are, by nature, dependent. But, our parents encouraged us to become independent as rapidly as possible. To be an adult and suddenly be placed in a dependent role is very difficult. The older person wants to keep as many of their normal tasks as they can. However, it is also apparent that many times they just cannot do them anymore. I can remember when I had to take away my Mother-In-Law’s checkbook. A former bookkeeper, she prided herself on her ability to keep a "proper balance." Then suddenly checks started bouncing and the fees mounted. Clearly, she could no longer do the checks. The real reason was that her vision had diminished to the point where she could no longer read the statements. But, she wouldn’t accept that answer. I was being overbearing and dictatorial – not to mention "unfair." Resolving that issue became a sore point between us from that day to the day she died.
Sometimes you have to intervene. Surely, taking over a person’s checkbook isn’t as big a deal as deciding on where they live, what they eat, how they dress, but it is all the same. At some point they lack the competence to make those decisions for themselves. Regardless of the pain, you, the child, must take on that responsibility for them. But, we delay action until it gets so bad that it cannot be ignored. Then the action seems too swift and too arbitrary.
Strangely, the role reversal will seem somewhat familiar. Your parent will beg and plead for the return of their responsibilities in much the same way you did when you were a child. They will pout, scream, shout, threaten, beat their fists on the table, and even hold their breath – just like you did. It makes you want to do to them, what they did to you as a child. That means that if you were brought up in a home that used corporal punishment, you’re going to want to hit them. You have to be very careful in how you react.
I highly recommend some form of dialogue with other people to help you deal with your emotions. Perhaps your choice will be a clergy person, a good friend, or a professional therapist. The reason is that you have a ton of emotional baggage with your parents. That isn’t to say that you had a "bad childhood" or that your family way "dysfunctional" only that there is baggage that is going to come out as you become the care provider.
Signs and Symptoms
As I stated in my opening, for some of us, the transition comes from a traumatic moment. The phone rings, a neighbor stops by, the police come to your door – regardless of the means, and you are suddenly thrust into the world of being the care provider. Without warning it happened and you must deal with it. In reality this is the easier path. For most of us, the road is paved with diminishing capacity and we think that things are "okay" when they really aren’t.
You need to be aware of sudden shifts in the observable parts of your parent’s lives. The house starts to become messy, there are piles of bills sitting on the table, they don’t answer the phone, and the list goes on. Something is different. Sometimes it seems that these can be explained. Sometimes they can’t. Our minds will attempt to make sense of the situation. We really want it to be "okay." Yet, deep down inside we know it isn’t okay at all. It is dreadfully wrong. Yet, how do I tell my parent that they can no longer do what they have always done?
Unfortunately, too many of us wait until the situation is overwhelming. At that point the only solution seems to be institutionalizing your parent. That is traumatic for all parties. Sure, it’s fast and certain, but it also belies the fact that you’ve missed signals for some time.
Intervention
First and foremost, unless your parents are already incapacitated, you need to learn what their wishes are now. If you have siblings, you need to determine what responsibilities you will take on and which ones your siblings will take on when the day comes that you have to take over. Note: I say "when" the day comes, not "if" the day comes. Should you resist using the "when" statement, you are already in denial of the reality that your parents will someday need your care.
If you are watching your parents and start to see things take simple actions. Start with basic medical workups. The reason behind the changes you observe may have treatable causes. It may be depression (treatable), or mixing medications that should not go together (also treatable), or signs of some organic problem manifesting itself. The keys things are:
- When did the change begin?
- When was their last complete physical?
- What medications are they taking and how often?
- How many different doctors are they seeing?
Now, you need to assess the findings. I used the example of failing to maintain a proper balance in the checkbook. I started by sitting down to assist her in balancing her checkbook. Much to my surprise, I discovered that she couldn’t see well enough to read the statement. A trip to the eye doctor confirmed that her vision had degenerated to the point where she could barely see things on paper. Despite her protests of "I can see just fine" I also realized that she no longer read newspapers (too much junk news anymore) or letters (I don’t want to read about their troubles), and her handwriting had degenerated. We could not get agreement so I just took over. I discussed the account with her every month and consulted her on every payment, but I did the work despite her protests that "I can do that just fine!" No, you cannot and that is why I’m doing it.
We had a similar problem with her hearing. We started to become afraid that she was developing Alzheimer's. Why? Because she was responding inappropriately to questions put to her. Then I noticed that her phones (all of which had volume control) were cranked up to the maximum. Again, a visit to a professional proved that her mind was fine, but her hearing was lousy. She was answering the question she thought she heard -- not the question that was asked. Now, how many old folks are in nursing homes because they can't hear?
Perhaps all your parent needs is assistance. Sometimes, giving that can create more problems.
Realities and Expectations
What we expect from our children depends on our models of the world. The parent who cared for his/her parent probably has a clear expectation of being cared for by their children. You may, or may not, be able to fill the expected role.
Hiring a housekeeper for the parent who can no longer keep the place clean may result in disaster. In my experience, my wife and I decided to hire a housekeeper to maintain the house. Mother-In-Law wanted no part of any stranger doing "her" housework. It was okay if we did the cleaning – that was expected. To hire somebody just wasn’t in her life experience or expectations. She saw the housekeeper as a rejection of our responsibility to take care of her the way she took care of her parents and therefore a rejection of her. Logical? No. Was this her real perception? Absolutely!
The most common phrase you will encounter will be "I/We don’t want to be a burden." Probably not, nobody wants to become a burden. The sad reality is that taking care of a parent is a burden. While caring for a child looks forward to diminishing responsibilities and increasing freedom, caring for a parent only ends when the parent dies. That unhappy outcome colors the whole experience. That which we don’t want to deal with, becomes a burden of monumental proportion.
Many care providers are in the "sandwich" generation. Between aging parents and growing children, there seems to be little time for you. Demands on both sides strain our already strained lives. To make matters worse, both spouses in a marriage have parents in relatively the same age group.
Now, sexism rears its ugly head. Women are expected to be the care providers. That is not to say that men cannot or should not be caregivers, it is just that society generally looks to the women to provide the care. That translates into the wives and female siblings getting the lion’s share of the responsibility laid on their shoulders.
It is not possible, in the current society, to do it alone. Hiring professional caregivers is going to be a necessity. Getting your parents to accept them, in lieu of you providing the care, is going to be difficult.
Guilt is another factor. We all would like to be "super-children" meeting and exceeding the expectations of our parents. They will remind us that they sacrificed for us, with the implication that we must sacrifice for them. Is there ever "enough?" Nope, guilt knows no satisfaction.
Incontinence
This is probably the most distressing part of caring for an aging parent. It is almost inevitable that your parent will lose bladder control at some time, and once it’s gone – it’s generally gone for good and all. Parents learn to "put up with it" in children with the expectation that they will grow out of it. It is also distressing for your parent. Bladder control is one of the first signs of successful mastery of bodily functions – now it has disappeared. There are medications that reduce some of the problem, but these are not permanent solutions. Neither are the various forms of capturing devices (e.g., Depends, etcetera). Be aware that incontinence is the #1 reason why children put their parents in nursing homes. Facing the prospect of a wet bed and wet clothing every day is daunting.
While there is a lot of controversy about catheters, it is an alternative that you must consider. In particular if you have made a commitment to caring for your parent in your home. Most people cringe when even thinking about a catheter being inserted into their parent. Its undignified, intrusive and "giving in" to the problem. However, we must also consider what is "dignified" about sitting in wet clothing or laying in a wet bed. Even the "Depends" solution has a strong possibility of skin disease and infection.
In our experience we held off a bit too long. The final issue was when my Mother-In-Law fell in the bathroom from slipping on her own urine. Fortunately not badly injured the problem had gone too long. The house smelled like a men’s room in Grand Central Station and we were up to four loads of laundry per day! Not to mention that all of us were stuck in the house. We could not take her more than about 20 minutes from a bathroom at any time. With the catheter we could go for hours at a time and the smell was gone.
It was difficult and it took us time to learn how to maintain it properly. However, we never had the horrific problems that others warned us about. The bottom line is that most of the good nursing homes catheterize their patients when bladder control degenerates.
Home Health Aids, Nursing Care, and other outside assistance
In the creed of caregivers, a basic tenant is that you cannot care for someone if you don’t care for yourself. While we might feel that self-sacrifice is required, that only leads to a point where you can no longer provide the care required. You also have to consider that you will probably not always be able to rely on family members to "pick up the slack."
If you are well set you may be able to hire full time, live in assistance. Few of us can actually do that. For most of us, the bulk of the care giving comes from the person you see in the mirror and possibly your spouse. A parent, unlike a child, cannot be easily bundled up and taken out when you what to go shopping or out to dinner. Not to mention that you really need to get away for a time.
The most common form of assistance comes from Home Health Aids. These people are generally hired from agencies and the quality and abilities vary greatly. You need to do your research in order to find a good agency. There are some things to look for:
 | Training: How are their people trained, or are they trained at all. |
| Pay: Most places have you pay the agency. How much does the caregiver actually get? You might be surprised to find that many of these folks get much less than half of the fee. The best ones pay a higher percentage to the caregiver. |
| References: Not just the ones provided by the agency, but the real references come from the members of your support group. |
Support Groups
You will need a support group. Unlike having children, which pulls you into a larger community; taking care of aging parents tends to isolate you and your family members. First of all because of the time commitment required to provide care for the parent. Secondly because other people, unless they are in the same situation as you, really don’t want to hear about what is happening with elder care. Sure, they are still your friends but you will see their eyes glaze over as you mention the latest episode with Mom or Dad.
Support groups tend to grow up around adult day care facilities, and many are sponsored by the facility. While you may think of these as depressing they are both enlightening as well as stimulating. The first thing you note is that you are not alone. In fact, there are many people who share your duties and responsibilities. The second is that others have been exactly where you are today. These folks are important to your ability to cope with the day-to-day duties of elder care. There are resources, tools, techniques, and methods that others have used to get through the same problems you are experiencing right now.
To be sure, some meetings end with you wanting to cry your eyes out, and others leave you laughing at the escapades of your and others parents. And, like any group activity, not all are equal. Look for one that is well attended and has a good leader who makes sure that everyone gets a chance to discuss his or her issues. Some folks are really hurting and attempt to turn these group meetings into private therapy sessions. A good group leader will manage them well. Be aware that these groups tend to be majority female. That is because of the cultural imperative that women provide care. However, men are part of the process and share the same concerns when it comes to caring for parents.
Get to know folks who you can call during the periods between meetings. The group we finally settled on met monthly. The weeks in-between meetings were pretty dry, as we had not connected to the other members as closely.
Being Prepared
As the motto says: "be prepared." Usually, we don’t have any trouble with being prepared for good things like vacations and parties. However, we hesitate to prepare for bad things like funerals and hospitalization. Somehow we think that by preparing we are invoking some form of sympathetic magic that will make it happen. (i.e., by planning for Mom’s funeral we somehow cause her to die.) The reality is that Mom is going to die, and if we aren’t prepared we are going to have to scramble when it happens. Knowing where the insurance policies are, what the favorite hymns are, where the photos are stored, which dress or suit they want to be laid out in makes you both more comfortable.
Before you need to plan a funeral, you need to be prepared for the things that happen long before the funeral. Do you have a durable power of attorney? (i.e., one that is valid even after the person has lost the ability to make decisions for themselves). Does your parent have an "advance directive" concerning specific types of treatment (i.e., resuscitation, life support, ventilation, feeding tubes, etcetera) and are copies on file at both physician’s offices as well as local hospitals? Will the local hospital honor these advance directives? (Note: some hospitals do not follow advance directives even if you have a notarized form right under the doctor’s nose.) Do you have a file to take to the hospital with your parent in the case of an emergency? This file needs things like lists of medications taken and their frequency, the names and phone numbers of their physicians, lists of dietary restrictions as well as notarized copies of any advance directives. This should be in a place where it can be grabbed fast on the way out the door.
Taking care of yourself
In the midst of caring for a parent, it is easy to forget to care for yourself. With the immediate needs and growing demands of caring for a parent it is quite easy to bypass vacations, avoid social gatherings, and let your own health deteriorate. It is important to note that stress diminishes your immune system and you can get really sick when in a long-term stress situation. There are some key issues to consider.
Rest and Sleep: Our need for rest and sleep increases with the building of stress. You may need to hire someone to watch over your parents while you sleep, or get a neighbor or local person to watch them while you get a nap in the afternoon. Sleep interruption is the norm when caring for a parent and the demands will wear you down.
Recreation and Exercise: Like rest and sleep our bodies need regular exercise and re-creation. It can be through a home gym, or by getting somebody to watch your parent while you go out to jog or bicycle, but it needs to be regular.
Social Contact: As I mentioned earlier, caring for a parent is isolating. Attending religious services, or social gatherings is important to your mental health. Keep in mind that despite the condition of your parent, you are alive and living. Even an hour a week can be a great boost to your outlook.
Talk: A good friend in whom you can confide, or a professional therapist is important. Your feelings are confused and emotions mixed with the day-to-day duties of care giving. You have to let it out with someone you trust.
All of these take time. But unless you take care of yourself you cannot take care of your parent. There is no need for you to sacrifice your life because if you do, your parents may outlive you – and then who will take care of them?