Caring for Mentally Incompetent Parents
By Kathy Green Many of us will eventually have to deal with parents who lose their mental capacities as they age. Everyone’s first thought is probably, “I could never do that.” But whether or not we think we can do it, one day we may have to do so. If we think about it now, the frustrations may not be as overwhelming when the time comes. After five months of providing home care for my parents, I have learned a few maxims that might be helpful. - Never preface anything with, “Remember?” They truly do not remember, even if only twenty minutes have gone by. Try to imagine how frustrating it must be to confront – every minute of every day – the reality that your ability to remember is gone, never to return. Would it help to hear “Remember,” when everyone knows you don’t?
“Remember, Dad, the reservations are ticketless. There is no ticket. We printed the boarding pass on the computer, remember? Brett paid for the reservations two months ago. Remember the letter he sent you?” It’s more respectful and gracious just to say, “We have everything we need, Dad. It’s all taken care of, tucked safely in my purse. Want to see?” - Teach yourself not to be frustrated. They can’t remember, no matter how hard they might try. Even if they write everything down, they can’t make sense of it when they refer to their notes. They also cannot always find the right words to say what they are feeling. They might say the opposite of what they meant, or they might repeat something several times after you thought the issue was resolved. The most universal communication problem is likely to be repeating everything endlessly. No matter how many times you have heard it, keep in mind the teller does not remember having said it before, even once.
Frustration is the emotion we feel when life does not meet our expectations or needs. We can manage our expectations, and, especially as full-time caregivers, we absolutely must manage our needs. (More about this later.) Meanwhile, instead of focusing on how frustrated you are, acknowledge how frustrating is has to be for them, not to be able to summon the words they need, and not to be able to remember what day it is or how to turn on the hose. They will usually call you by the wrong name, or confuse the genders in pronouns, and so on. You don’t need to call this to their attention. They know they are muffing it. Be gracious – you know who they mean. - Take over. Take over everything that they cannot reasonably manage on their own, which will, eventually, be everything – period. You will need to become their liaison between doctors, insurance companies and pharmacies. You will need to appoint a trusted family member or friend to hold an enduring power of attorney, to pay the bills and make financial decisions that will benefit your parents and not allow them to become vulnerable to shady salespeople or neglect of their assets. You may be that person, with all the attendant responsibilities.
You will need to cook for and feed them, and probably to coax them to eat. You will need to put their pills into their hand and watch as they swallow them. They are not being rebellious or difficult or too casual, if they do not take all their medications. They simply can’t remember, even if you have reminded them. You will need to keep their clothes clean and find them when they are misplaced. It’s a good idea to get a spare pair of eyeglasses and an extra cane. You can usually find these when your parent cannot, but a backup is sure to come in handy before long. - Find a way to define your new relationship, and make sure you don’t backslide. For example, this is not the time to discuss childhood traumas or other grievances you might have about the way you or your siblings were raised. You will need to get very clear about the things that bugged you about your parents as a child or a young adult, and find a way to work through these personal issues without taking it out on your elderly parents. They cannot process complex information any more, and there is nothing they can do to change the past. Confronting them now is selfish and futile. Unload on a friend or sibling, but stay completely focused on charity toward your parents now. If you cannot manage this change of heart, you are not the right caregiver. Elderly folks need peace, contentment and lots of custodial care – not hostility.
Put your foot down about allowing the elder to drive. This is probably the most difficult part of the job, because driving equals independence to most Americans. But if the parent doesn’t drive, you won’t potentially be faced with the guilt that would wrack you if your parents killed themselves – or somebody else – in a traffic accident.
Now, what about your own needs? As much as you may want to dedicate yourself to your caregiving duties, you are still a human being. You still get tired and sick, and you can still feel overwhelmed. It is your responsibility to take care of yourself, for two reasons. First, you can’t take care of your parents if you are disabled. Second, you should take care of yourself for your own sake. Here are some tips that could help: - You need an escape hatch. You cannot feel trapped or you will go nuts and almost inevitably begin to take it out on your parents. There has to be a back-up plan that can be mobilized on a regular basis and on impulse, if you just need to get out, now. If your ward is full of literal Latter-day Saints, as is mine, you will receive dozens of offers to come and spell you. You will find, if your ward is like ours, that these saints will take far better care of your parents than you would have, if you had continued to work without a break. That’s what teamwork is for, and that’s the way “bearing one another’s burdens” works.
- Do not put your life on hold. Of course being a caregiver was not part of your anticipated career path. But here you are. You can meet your own goals too, while you tend your parents or relatives. You can take classes on the internet or get involved in a craft or hobby that you shoved onto a distant back burner while you were pursuing your pre-caregiver life. Now you can use the idle hours of manning your post to do something out of the ordinary for yourself. You can mobilize your back-up network to cover for you when you are away.
- Take your own health extra-seriously. You will be stressed. Caregiving is stressful by nature, and many professional journals caution that caregivers are at greater risk than practitioners of almost any other occupation. Pinpoint the risks you tend to take when you are stressed. Some sleep less, because they savor those midnight hours when they are not on call. For others, the stress behavior is eating foolishly, because a favorite candy bar makes them feel more in control of their happiness. For many, the physical demands, such as lifting an immobile client continually, will eventually cause permanent back or rotor cuff injuries. Take a course in Certified Nursing Assistance, even if you don’t certify, so you will be trained in lifting and transferring your clients without hurting yourself.
Although caring for mentally incompetent parents is often frustrating and almost always sad, you can take comfort in the knowledge that as you do so you are honoring your parents – and by extension honoring your heavenly parents. In the next life, when your parents once again are mentally vibrant and whole, they – and you – will be glad you sacrificed your time to share the end of their earthly journey.
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