Thursday, December 11, 2008

TLC


I was recently asked to speak to a local Caregivers' Support Group and many people asked if I would make my speech available to them. So here is the content of the speech for all those caring caregivers and their support systems.


A friend recently sent me a joke list called Sayings of the Jewish Buddha, and, being Jewish, I could particularly identify with them, especially the one that goes: “Accept misfortune as a blessing. Do not wish for perfect health or a life without problems. What would you talk about?”

Here I am to talk about it, so I guess I have accepted misfortune as a blessing. I guess it also proves that I’ve managed to cope with it. Caregiving is no easy road to walk. I’m here to tell you that the road is not impossible or impassable. From my own experience I have found that the key to traveling it with a minimum of frustration and stress lies in our attitude and approach to the challenge.

Caretaking takes up every waking and sleeping moment. You’re tired, angry, stressed out and harbor feelings that make you feel guilty. To top it all off you never have any time for yourself.

Let me assure you that these feelings are normal and valid. We have been placed in an unenviable position and are asking ourselves “Why me?” and “Why does my loved one have to suffer?”

I’d like to read you part of an article by Dr. Bernie Kastner entitled “Why did God put us Here?” which may put things into perspective. He writes: “It is easy to go through the motions of our days, weeks, months and years and not ask ourselves, “What is it that God wants from me? Some of us tend to think it is our right to choose and become anything we want to be without checking in with Him. We enjoy the pleasures this world has to offer…and if our plans go haywire, we get angry at God for having the audacity to intervene.” He goes on to explain how special souls actually request to be sent back to earth for another incarnation in order to complete some tasks they did not complete in a previous one, and now they are here in their “seemingly limited capacities. Why?...in order to give … others around them the opportunity to do [kind deeds]. Here, take care of me so that you can grow in your deeds. I am here so that I could be an object of your love. Nothing more, nothing less….” Then he goes on to talk about us other people: “We ask for courage and humility before our journey into another life. As we grow in awareness, so will the quality of our existences. This is how we are tested. Passing this test is our destiny.”

I have regarded this challenge as an opportunity for self-improvement. I sorely was in need of more patience, tolerance, respect for the elderly, and love of every precious moment of life. My answer to the challenge has been to make the best of the situation and use it as a means of personal growth.

“Easy for her to say,” you say. No, it is not easy for me to say. I have gone through hell to get to this point—the same hell you’re going through—but once I changed my attitude, I felt calmer, less guilty and better able to cope.Let me briefly tell you what I’ve gone through over the past 18 years:

My husband and I cared for his mother who had Alzheimer’s for 10 years. After she died, my mother developed signs of dementia. In 2004 we moved from Jerusalem to Netanya to keep an eye on things, and three months later my father, who had been handling all the household chores and finances suffered a severe stroke. But wait—it gets better. Right after getting my parents resettled in their apartment after my father’s stroke, my mother developed a urinary problem. OK, off to the urologist to take care of her. When we got home I was ready to sit down and cry. My mother’s condition required that I catheterize her five times each day, or her kidneys were going to fail.

So that sets the stage for the emotional upheaval I went through and the drastic change in my lifestyle. Although I have a sister living in Israel, all the care for my parents was falling on my shoulders. For a long time I resented my sibling’s not helping me. I resented my predicament, I was angry at the world, I was depressed, getting less and less sleep, spending more and more time worrying about how I was going to keep track of everything and keep things under control, and I got to the point where I literally could not function. I took my frustrations out on the most convenient target and that was my husband, who, God bless him, has been my strongest support through this entire episode. I knew things couldn’t keep going on this way, because what good would I be to anyone if I couldn’t function? Here’s what I’ve learned from the experience:

First of all we have to understand the new reality, and come to terms with it. We have this picture that life is supposed to be perfect, this ideal that everything should go according to our plans. And then God steps in and says, “Wait a minute. Who’s running the show here?” And we suddenly find ourselves in an existence other than what we perceived as the “ideal” life we had until now.

So we have to reassess the situation and our expectations. We can either moan about our plight or we can set new goals and expectations. Change your vocabulary. Say: This is not a punishment, it’s just a new stage of life, and I am going to meet this challenge.

To meet this challenge one of the most important items on your agenda should be finding ways to lessen the tension and create more free time for yourself. If you’re wrung out, you won’t feel up to the task, and your patient will suffer.

Here are some of the changes I made:

A. I identified what things in my life I could control and what not. And I tried to stop getting upset about those things which I could not change.

B. I learned to say “no”. Just as I have learned to cope, so can others.

C. I arranged a clear filing system to keep track of documents.

D. I bought a Palm Pilot to record dates and appointments, and set alarms for reminders.

E. I listened to music and sang along with it. It really does pick up your spirits.

F. I had reflexology treatments and occasionally even splurged on a massage or took a leisurely walk on the beach.

G. I consented, after procrastinating for over a year, to my doctor’s recommendation that I take an anti-depressant. I also agreed to take sleeping pills.

H. At bedtime I’ll give myself a relaxing foot or neck massage.

I. When I felt I was about to crash, I announced to my sister that I was taking a break, and after preparing detailed emergency information lists, I went on a 12-day cruise with my husband.

J. I developed what I consider my therapeutic Method of TLC, my acronym for the activities of Talking, Laughing, Writing and Crying (I left out the W because somehow TLWC just doesn’t seem to strike the right note).

K. I took up my watercolors again. I started exercising at the gym and playing tennis. I feel better for it and my attitude has improved proportionally.

In my opinion attitude is everything. Instead of looking at the difficulty of the situation, find ways to enjoy it. Laughter is the best medicine and is documented to increase those endorphins in your brain that make you feel good. Even the action of smiling has this effect. This goes for the patient also. Find reasons to laugh. Share jokes, old memories of funny incidents or watch something funny on TV. Spend time with the grandchildren.

What did you used to do that brought you pleasure? Find creative ways to keep doing these things together. Perhaps you’ll have to take a shorter stroll or vacation, or something nearer to home. Or you’ll have to order special transportation and take some emergency equipment with you. So what? This is the new situation? Adapt to it and make it work for you.

Another attitude that is important to foster is that of the patient. Instill a feeling of worth in him. There’s nothing quite as demoralizing as the feeling that one is no longer of any value to society. Keep the patient active. Include him in decision making and give him a voice in his own care. Ask him to share his feelings. Because the patient’s life has already changed so much, he will tend to be resistant to further change, so try to keep to a routine. Treat him with the same respect you did when he was younger and “whole”.

I made a serious mistake in overprotecting my father after his stroke. I think it made him feel less of a man, and if I had it to do over again I would do it differently. But I try not to dwell on regrets, because this can only lead to feelings of guilt.

Ahhh, guilt. There’s a dirty word if ever I heard one. We feel guilty for not providing well enough for our patient, for neglecting other family members and friends, for harboring feelings of anger at the patient or at God, for taking time off, for making wrong decisions. And then we are hit with guilt feelings for being so insensitive to what our loved ones are going through: "I shouldn’t be feeling this anger, resentment and self-pity when the patient is really the one who is suffering so much more than I."

Well, I don’t know about you, but last time I checked I wasn’t wearing a blue stretchy under my clothes with a big yellow “S” on the chest. I’m not Superman! We’re all human and fallible, yet we think we must be everything to everyone whenever they want us, and then we feel guilty when we don’t live up to our expectations.

So lower those expectations. What we once viewed as the ideal “me” has to be redefined to fit the real me. Don’t expect to achieve everything, and you won’t be disappointed. You’re doing the best you can under trying circumstances. Don’t feel guilty for not doing it perfectly. Instead of allowing guilt to drag you down, use it to propel you take action against whatever is causing those feelings.

While I’m on the subject of feelings, let me point out that it is not uncommon to feel depressed and sad. Don’t be ashamed of it. Our situation has brought us face to face with our own mortality, and feelings of sadness are legitimate. I personally have had so many episodes of crying that I wondered where in heaven’s name all those tears were stored. It doesn’t solve any problems, but it does relieve stress and is a good way to reduce the tension that often builds up from our daily responsibilities. So go ahead and cry, but then wipe your eyes. Wallowing in self-pity is a waste of energy better spent in positive directions. Likewise anger, particularly misguided anger, is an exercise in futility. And each of these emotions feeds on the next, resulting in a vicious circle of wasted energy, wasted negative emotions and precious time lost. Let me give you an example:

Let’s say your patient is uncooperative: you can get upset, nag and shout and work the patient and yourself up into a real frenzy, or you can try a different approach, experiment with non-confrontational techniques. I remember once trying unsuccessfully to convince my mother to go for a certain test. No matter how much I tried to tell her how important it was, I made absolutely no headway. Finally I tried a different tactic: I asked her how she would feel if the situation were reversed, and I needed a test to help diagnose my condition? How would she feel if I refused to comply? Would she want me to go on being sick and untreated? This is what did the trick. Now there’s an example of using guilt to work for you in a positive manner.

There are times when frustration just gets the better of us. When you are feeling especially frustrated ask yourself “Is this situation working for me?” You know the saying ”if it ain’t broke don’t fix it?” Here’s the corollary: “If it ain’t workin, you better fix it.” And here are some proactive steps you can take:

1. If what you are doing is not working, change what you’re doing. Become inventive. Believe in yourself and trust your instincts. No one knows better than you exactly what the situation is, and how best to deal with it.

2. When you have a legitimate complaint, do not be afraid to stand up for your rights. If you don’t, who will? Do it courteously, but do it. Take emotion out of the picture and stick with the facts to make your point. I’ve encountered people in public offices that are extremely caring and anxious to help. But they are limited by regulations. Getting angry with them is like killing the messenger. Instead make them your allies. They really aren’t your enemy, but if you treat them as such, they will retaliate in kind.

3. Stay aware of what is happening in the moment. Don’t agonize about tomorrow or punish yourself over what you should or shouldn’t have done in the past. Now is what’s important. If you can get through now, you can turn your attention to other problems when things are calmer.
And finally I’d like to address adjusting to a whole new lifestyle:

You’ll find you need more sleep and are getting less. Not only that, you probably have a very disturbed sleep if you manage to sleep at all. Some imagery and breathing techniques work to ease the troubled state of mind that often prevents sleep. Don’t be ashamed if you need medication to relax you or to relieve depression. Whenever possible, try to sleep when the patient does.

Simplify your life. This may entail giving up sumptuous meals and relying on fare such as “Meals on Wheels”. Use disposable dishes and cutlery. You can place grocery orders by computer for home delivery, and some pharmacies provide a messenger service to pick up your prescription and then deliver the medication to your home.

Social activities may have come to a standstill. Hire a caretaker for a few hours a week and space the hours so that you can get a change of scenery and do whatever you feel will enhance your life. Invite friends over for short visits. They actually want to help you, believe it or not, so take advantage of their visits to treat yourself to a relaxing shower or manicure or whatever.

It also helps to keep a diary for venting your frustrations and emotions. Getting those thoughts off your chest and onto paper is therapeutic in itself. Writing my blog for Yad Sarah helped me get better in touch with myself and the situation and find humor in what could otherwise be a very depressing predicament.

Find joy in the simple things. There is much beauty around us if we take the time to notice. If you are the spouse of the patient, do what you can to make the patient feel loved and wanted. Sit together, reminisce, listen to music and verbalize your feelings. The idea is to go with the flow, change your pace to meet the new demands on you, support the patient and maintain as much quality of life as you can.

I have a friend who lost her husband to a neurological disease that causes progressive total paralysis. She told me that the final two years of his life were the best years they spent together. They had all the time in the world to pour out what was in their hearts, talk about the beautiful family they had raised and be thankful for the good times.

Before I close I just wanted to point out what a treasure trove you are. Do you know that the average price of nursing homes now runs at about NIS 10,000 per month? Pat yourself on the back. You deserve it. And you also deserve time off from your job, so be sure to take vacation to recharge your batteries. If it means finding a nursing home to house your patient in for a few days, then do it, without regrets. I’ll repeat it like a mantra and so should you: You are of no use as a caregiver if you yourself cannot keep going.

So this has been the story of my life and how I cope. I will leave you with one last bit of advice that I got from a friend who has been battling Multiple Sclerosis most of her life and also has had to undergo a liver transplant. If ever anyone had reason to feel sorry for herself and curse the gods, she is that person. But I have never known her to say an unkind word or complain about her fate. She taught me an important lesson in how to deal with life’s ups and downs. Whenever I would complain about something or someone that had gotten under my skin, she told me to put it on my “list of things not to worry about.” My advice to you is to go home and develop a list of things not to worry about. Go and enjoy your life whatever it may be. Your attitude will determine your state of mind. With a little TLC (and W) you’ll be better able to cope with giving yourself and your patient real TLC, tender loving care.

P.S. Yad Sarah has opened a website for caregivers to share their experiences. It's filled with inspirational, humorous and heartwarming stories and advice. Visit http://www.care2tell.com/ and share your experiences with us, or vote and comment on stories that others have shared. Looking forward to meeting you there!

Guide to Services for the Aged and Disabled in Israel
© Copyright-2008
This work is protected by copyright law. Use of this work or any portion thereof, including photocopying, publication, public production, distribution, translation, broadcast, allowing public access to it, and utilizing portions derived from it for other purposes, without prior written permission from the author is prohibited.