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.

Part 10: Practical Tips to Ease the Way (Section 2 of 2)

by
Shari (Zissie) Gitel
zissieg@walla.com

Now it’s time to discuss tips for keeping the patient well-dressed, fed, comfortable and occupied. Sounds easy, right? Well, with a little ingenuity and a lot of determination it isn’t all that hard. Let’s get started.

Fashion Design and Physical Education 101
If the patient is able to dress him/herself there are some nifty contraptions to aid the process. There is a device to help patients put on their socks without having to bend down to do it. Long shoehorns help with getting shoes to slide onto the feet. Avoid shoes with laces or buckles. Slip-ons or shoes with Velcro closures are the easiest to handle. Shirts, trousers and skirts without buttons or zippers speed up the dressing process. Simplicity is the name of the game, not haute couture.

In the event the patient is wheelchair-bound and sedentary or supine most of the day, you’ll need to protect the patient from pressure sores. Special pillows for chairs and air mattresses, which require electric pumps to keep them inflated, for beds help prevent these sores. There are many types of wheelchairs, some with reclining padded high backs and legs that can be raised to elevate the patient’s legs. Trays can be acquired to attach to the wheelchair. The patient should be encouraged to change positions several times during the day to prevent the same area of the body from receiving the bulk of his/her weight continuously. In hospitals, they place a folded flat sheet under the trunk of the patient’s body to help pull the patient up in bed or turn him/her over. This is a two-person job.

PREVENTING PRESSURE SORES IS A MUST!

Doorways in many homes do not accommodate the width of a wheelchair, walker or commode chair. Many homes do not have elevator access, or ramps. If your home falls under one of these categories, check with Lishkat HaBriyut to see how to qualify for altering your home to meet the patient’s needs. If you must carry a wheelchair-bound patient up or down stairs, it is easier to transfer him/her to a sturdy arm chair first. This greatly reduces the weight you will have to lift, as the wheelchair alone can weigh as much as 40 pounds or more. Again, this is not a one-person job.

Home Alone
If the patient is on his/her own for any portion of the day he/she may benefit from a long-handled reaching device—either to reach something on a high shelf or to pick something up off the floor. It is also worthwhile to bring in a professional to advise you on how to redesign rooms to make them patient-friendly. Cabinets, drawers, height of furniture—just about everything imaginable—come under this category. Eating and food preparation utensils can be purchased that make life easier for patients with manual dexterity problems. For patients who have difficulty swallowing thin liquids, there is a food thickener on the market that can be added to the liquids. For people who have difficulty getting food and drinks into their mouths spillage on clothes is a common occurrence. You may want to invest in disposable bibs for adults. If food preparation is a problem, many organizations and companies provide meal deliveries to the home, some of them subsidized according to the patient’s ability to pay.

Some other items you may want to have on hand, depending upon the patient’s condition are a blood pressure machine and inhalation machine. And let’s not forget one of the most important items: an alarm system for the patient to call for emergency help.

Patients with dementia should be taught to always put things back in their proper place: keys on a table by the door, glasses next to the bed, money in his/her wallet, etc. It takes a lot less time to spend an extra minute or two replacing the items in their proper location than spending several minutes or sometimes even hours trying to locate them. Carefully label items that the patient may have trouble identifying. Monitor the patient’s medications. There are medicine boxes of all types on the market for this purpose. Depending on the degree of the patient’s dementia, you may not want to give him/her access to medications at all.

WORDS TO LIVE BY: A PLACE FOR EVERYTHING AND EVERYTHING IN ITS PLACE!

Leisure activities should be encouraged to keep the mind and body sound. I have found that a discman/tape player with headphones (my daughter says I’ve dated myself and should really recommend an iPod) is a handy entertainment center. Whether it’s music, audio books, or lectures, the patient is bound to find something that will hold his/her interest. Large print books are available for the visually impaired. There are also many assistive devices to help the visually impaired enjoy the use of TVs and computers. Playing cards come with large numbers on them. If the patient can handle them, give him/her games to exercise the mind, such as Jumble puzzles, Sudoku, crosswords. These are readily available on the internet and can be printed in large type or enlarged on a copy machine to facilitate use by the patient.

Make sure the patient regularly exercises his/her body to the best of his/her ability. Keep those extremities limber and strong. Muscle atrophy is something you really want to avoid. You can purchase an elastic sash from your kupat cholim’s physical therapy department (at least that’s where we got ours). When the ends are tied together the sash, looped around the ankle and held in the patient’s hands, acts as an aid to the patient to raise his/her legs while sitting, thereby exercising the muscles. It can also be used in arm exercises, providing resistance as the patient stretches against it. Again, this is something you will want to discuss with the patient’s physical therapist.
Tricks of the Trade
For us, the caregivers, I also have some tips. Continue to breathe in and breathe out. This will keep us going for the short term. I found a little trick which works wonders for me, and I’m considering patenting it. Previously I mentioned how much benefit I received from reflexology. For those who are not familiar with reflexology, it involves the therapist pressing and massaging different areas of the foot which correspond to different areas on the body. After every session I felt extremely relaxed. One day I said to myself if my feet being relaxed makes my body relax, let me try an experiment. I am about to share my discovery with you. It’s something you can do any time day or night, and no one need even know you’re doing it. For me it provides instant relaxation. All it involves is wiggling your toes. Try it. When I wiggle my toes, my forehead relaxes and my back and shoulders are less tense. I hope it works for you, too. Another technique I have employed when I find myself clenching my jaws or grinding my teeth is repeating the letter “N” over and over. This relaxes the jaw and facial muscles. You may, however, want to practice some discretion in where you perform this particular exercise. Otherwise, people around you may decide you’re a good candidate for institutionalization! And do find time for yourself to get out and exercise to keep those endorphins flowing. Laugh as much as you can, because laughter is truly the best medicine.

This whole adventure in writing my blog itself has been therapeutic for me. I don’t know how helpful it has been for you (I sincerely hope it has been), but for me it just felt great to get a lot of things off my chest and transferred to paper. Perhaps writing down your frustrations and feelings can do the same for you.

Finally, I would like to thank the Yad Sarah organization for giving me this opportunity to enlighten the public on services for the disabled and elderly. Most of the assistive items and services I have mentioned in my articles are available through Yad Sarah. I strongly recommend you visit the Yad Sarah website (http://www.yadsarah.org/). If you live in Israel, I hope you take advantage of the many services Yad Sarah provides, visit the Guidance and Exhibition Center, volunteer for the organization or support it in any way you can. If you are among my readers from abroad, perhaps Yad Sarah can act as a model for a similar organization in your own community. Contact Yad Sarah to find out how their representatives can help you. Visit the headquarters in Jerusalem. You’ll enjoy a tour like no other you have ever experienced.

I hope you’ve enjoyed reading my blog as much as I have enjoyed writing it.

Shalom for now.

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.

Part 10: Practical Tips to Ease the Way (Section 1 of 2)

by Shari (Zissie) Gitel
zissieg@walla.com

Introduction to Interior Decorating 101
My pediatrician had a good sense of humor, and his tip regarding how to care for teething babies was unique. In fact, this tip was useful under a variety of circumstances. He told me that if the baby cries for a long period of time due to pain from teething, this is what I should do: fill a shot-glass full of bourbon or rye or scotch and dip my finger into the liquor; then rub the liquor on the baby’s sore gums. The alcohol will almost always relieve the pain. If the baby continues to cry after this procedure, however, I should then proceed to drink the remainder of the liquor in the shot-glass. I told you he had a good sense of humor. Well, as we all know, this is not a very practical tip for handling that problem or any other problem. But I have learned a lot of tips both from my experience and the experience of others that can make the home and environs more user-friendly for people with mobility problems. I’d like to share some of these tips with you.

THERE IS NO SUBSTITUTE FOR A PROFESSIONAL THERAPIST’S ASSESSMENT AND INSTRUCTION BASED ON THE NEEDS OF EACH INDIVIDUAL PATIENT

Before I share these tips, I should caution you that in any event you should have a qualified occupational or physical therapist from the patient’s kupat cholim evaluate the situation and recommend the necessary equipment and environmental alterations needed for the patient’s particular case. This is no substitute for professional medical advice. Any links to specific sites for sale of such equipment are for demonstration purposes only, not an endorsement of any particular company.

How to Achieve a Standing Ovation
Probably the most important item we introduced into the home was a sturdy office-chair with arms. Some patients may be able to push themselves up by simply placing the palms of their hands on their thighs and pressing on their thighs to gain the strength to stand. Post-stroke patients who have lost use of one side of their body have great difficulty in standing up. Placing their hands on the chair arms helps them boost themselves to an upright position. Likewise, raising the height of the chair seat, either by placing a firm cushion on it, or by purchasing specially made cones that fit under the chair legs, makes it easier for the patient to rise to an upright position.

The same holds true for the height of the patient’s bed. Getting in and out of bed can be very difficult with no support on the sides to hold onto. A raised mattress somewhat alleviates the situation. There are also bars (similar to but smaller than the types of bars used to keep children from falling out of bed) that can be inserted under the mattress and act as a support for pushing up from a sitting position at the edge of the mattress.

While we’re on the topic of the edge of the mattress, it is important that the patient learn how to scoot forward to the edge of the chair or bed before attempting to stand up. An occupational therapist can instruct the patient in all the steps necessary to properly stand up from a sitting position. If the patient still has difficulty achieving this on his/her own, you can assist the patient by placing your hand on the small of the patient’s back and applying gentle pressure to give him/her that extra nudge forward to be able to rise. Unless you really enjoy the experience of back pain, try to refrain from pulling the patient up by yourself.

Cars present a special challenge. The car seat’s proximity to the ground coupled with the need to maneuver the body until the feet are in the proper position for either sitting or standing pose difficulties for the patient. Bars are available for installation into cars to enable the patient to grasp onto something while either attempting to sit in or rise from a car seat. I personally have never used these bars, so cannot vouch for their effectiveness. There are also swivel discs (like a turntable) that can be placed on the car seat to help the patient maneuver in the seat and position his/her feet correctly.

Then there are toilet seats to deal with—can’t do without them, can we? Booster seats are available for toilets. Some have a hole and plug in the plastic where you can fill the seat with water, the weight of which helps stabilize the seat on the toilet. I came up with a Velcro solution to keep the seat I bought stabilized, gluing a piece of Velcro to the toilet bowl in several strategic spots, and matching strips of Velcro on the booster seat. I then cut a third piece of Velcro for each of these strategic spots and joined the booster seat to the toilet bowl that way. This kept it from sliding around. Necessity is the mother of invention, they say. Another important item near the toilet is a bar attached to the wall. Utilizing the bar the patient can more easily pull him/herself up from the toilet seat. There are also other bathroom solutions available, such as a U-shaped bar that can be placed surrounding the back and sides of the toilet to act as arms for the patient to use to help him/herself stand up, or a commode on wheels (similar to a wheelchair) that can be pushed to the toilet without the patient even having to stand up. These commodes also come with removable bed-pans. OK, that’s enough about the toilets. I think I’m going to lose my audience if I dwell on this subject any longer.

As long as we’re in the bathroom mode, let’s talk about showers. Many patients will need to be seated during a shower. The commode mentioned above can double as a shower chair, or you can use a regular plastic garden arm chair with holes drilled into the seat to prevent a buildup of water while showering the patient. Next to the area where the patient is seated or standing there should be a bar on the wall. A slip-free floor surface is also recommended. It is difficult to shower the patient with a stationary shower-head, so if your bath is not already equipped with a hose type shower-head that can be directed to different areas of the patient’s body, you’ll want to invest in one of these.

TOSS THOSE CARPETS!

Just a-Walkin’ Through the House
Now that we have the patient clean and standing, let’s discuss how he/she is going to walk around. First of all, carpets and throw-rugs are a “no-no”. Not only is it harder to push a walker on a carpeted surface, it’s just too easy for a patient to stumble over the edge of one. So roll them up and get rid of them. Some patients may need no assistance in walking. Others may manage with the assistance of a simple cane (make sure to purchase a cane that is the correct height for the patient). A cute device that can be added to the tip of the cane is a rubber contraption that allows the cane to remain upright. It’s called a tripod. A cane equipped with this makes life easier for the patient: he/she no longer has to find a wall against which to lean the cane, or a chair on which to hang it, and, should the cane topple over, the patient need only press on the side of the rubber tripod with his/her toe to bring the cane back up to a vertical standing position. Brings back memories of those bop-bags we used to punch down and watch pop right back up.

If the patient requires a walker, be sure to adjust the height of the walker to suit the patient’s needs. There are both folding and non-folding walkers, the latter being more sturdy, the former more easily transported in cars. Tennis balls placed on the back legs of the walker (you have to work hard at slitting and prying them open to fit them onto the tips of the walker) make for a smoother glide across the floor. Replace the tennis balls periodically, as they get worn. You can purchase accessorized walkers that come with seats, and baskets are available for the patient to tote things along with the walker. The patient will tend to want to use the walker as support for standing up from being seated. Some physical therapists will say this is the proper way to stand with one hand on the walker and the other pushing up from the seat, and others will discourage it. Follow the advice you receive from your own physical therapist.

I think now would be a good time to take a break from discussing all this equipment. It’s time for a breather. Look for my post next week with the remainder of the tips I have accumulated from my experience—I know the suspense is mounting, but hang in there: there will be more help and advice on the way.

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.

Part 9: The Gamut of Emotions—Lessons in Living

by
Shari (Zissie) Gitel
zissieg@walla.com


Why Me?
One of the greatest lessons I have learned from this whole experience is that there are many aspects of life over which we have no control, and when faced with any of them, if we don’t put things into perspective we waste a tremendous amount of energy on misguided anger. How much anger I expended at the beginning of this experience! I was wallowing in self-pity and angry at everyone and everything. Woe unto anyone who got in my path. Just ask my husband! My tongue developed a mind of its own and lashed out at family and friends. No one could do or say anything right.

It didn’t happen overnight, but slowly, very slowly, I learned how to put things in perspective and accept the situation for what it was. Initial anger is certainly understandable. The natural question “Why me?” is the first one to pop up, both for the patient and the caregiver. When you think about the question, though, in an objective sense, the corollary is “Why not?” Do bad things only happen to other people? What is so special about me that I should merit exemption from diseases, accidents, or any other traumatic event? Isn’t it rather self-centered and childish to think that if I’ve behaved well I shouldn’t be punished in this manner? The trick is to reassess the situation and not consider it a punishment—turn it into a challenge and a means of bettering yourself.

Consider the situation a challenge—not a punishment

Sensitivity Training
I do not in any way mean to trivialize the difficulties patients and their caregivers have to endure or the hardships visited upon anyone. The vagaries of life seem to conspire to produce an endurance test and a challenge where sometimes the hurdles seem insurmountable. Attitude, however, can make all the difference. Acceptance of the circumstances, I believe, is the first step to development of a constructive attitude to aid in coping with daily challenges. Once I resigned myself to the fact that this is what life has in store for me, I decided there must be a reason for what had been visited upon me and asked myself what I could learn and gain from the experience?

Sensitivity to the feelings and obligations of others has been a by-product of this whole experience for me. Though it took me a while to attain this level of understanding, I feel more attuned to the moods and needs of my parents and better appreciate the time and geographical constraints that prevent many family members from visiting more often. I enjoy the luxury of being retired. As small as the world has become, it is still no mean feat to find the money, time and energy required to travel long distances when one has to contend with work and children.

UNSOLICITED ADVICE?JUST SAY “YES”.

At the other end of the spectrum there are those who feel they must insert themselves into the picture and know better than I what is best for my parents. They will not hesitate to make suggestions and offer criticism. Annoyance with these people and their intrusion into my personal affairs was my gut reaction. It takes a great deal of self-control to refrain from telling them to mind their own business. I was raised to be courteous, and I courteously let them know how much I appreciate their concern. Then I just go on doing what I consider is in my parents’ best interests. The advice I received long ago from my pediatrician right after our first child was born has served me well over the years. He warned me that everyone was going to tell me what I was doing wrong in caring for my baby and how it would be better if I did things their way. His advice to nod my head ‘yes’ as though I was agreeing to all their suggestions and then proceed to follow my own motherly instincts was one of the best recommendations I ever received. So, here I am utilizing that same advice in a reversal of roles—what served me well then, continues to serve me well now.

Role Reversal and its Toll on Emotions
This issue of role reversal is laden with emotions in and of itself. Whereas once I relied on the sage advice and care of my parents (other than in my teen years, of course), now I am obliged to take responsibility for their needs and make decisions affecting their lives. I am changing them and feeding them and lifting them in and out of a car. It is an awkward position to be in to say the least. Often the obligation of respecting their dignity and wishes clashes with the ethics of assuring their physical well-being. Their understandable desire to want to die already and not have to endure the indignities of not being able to handle their own affairs and physical needs hurts me to the core. I don’t want them to suffer, yet I don’t want them to leave me either. As a defense mechanism I have developed a rather hardened façade so they don’t see how much they are hurting me. I do not make light of their wishes, but I do try to get them to know how much I understand how they feel and encourage them to make the best of the situation.

Often this requires putting on a face of cheer and demonstrating an attitude of hope that in reality are totally false. We are cautioned not to rely on miracles, and there is no medical reason to believe that my parents will recover from their illnesses or see any improvement in their condition. Reality dictates otherwise. In the early stages of these trials I went through a phase of denial. I pushed and pushed to get my father to put more effort into his rehabilitation. I did whatever I could to exercise and medicate my mother’s mind to ensure that whatever faculties she still had would remain intact. It became easier to cope, however, once I accepted the situation and resigned myself to the fact that my parents just weren’t going to get better.

ACCEPTING REALITY AIDS IN COPING

Have you ever been to Venice? One of the tourist attractions there is the “Bridge of Sighs”. It is a bridge over one of the canals that leads to the jail cells from which there was no return for the criminals sentenced to imprisonment. Well, I have my own Bridge of Sighs. After every visit with my parents in the nursing home I leave with a sigh of frustration and helplessness. I am already experiencing the feelings of grief at having lost them. Their personalities have changed as have their actions. They simply are not the parents I remember. Sigh....

To family members who speak to me after visiting my parents and express how upset they are with the rapid deterioration in my parents’ condition, I must seem very uncaring. They, however, see the situation on a very infrequent basis, whereas I see the situation regularly and have become somewhat inured to it. What they don’t understand is that I am already beyond the sorrow and the grief stage of losing my parents. Their decline is something I take for a given now, and what may appear as nonchalance on my part regarding their condition is simply my way of demonstrating that I have already cried myself out and worn myself out in caring for them. I will put on a happy face for my parents and continue to boost their spirits, but I know in my heart of hearts that I have lost them already. If that’s hard for others to fathom, so be it. I have accepted the situation. This is my way of coping.

Faith and future
Fear is another emotion I have begun to experience. It has nothing to do with the caregiving that has played havoc with my state of mind; rather it is a result of thinking of all the genetic probabilities that point in the direction of my one day being in the same condition as my parents. My chances for developing cancer and/or dementia are looking pretty good. The thought of being on the receiving end of the caregiver process is not tantalizing to say the least. I only hope that if and when that time comes I will be able to accept the help graciously. My children are aware of my wish that I not be a source of their having to put their lives on hold to take care of me. If I reach the stage of needing such demanding care, they have their instructions to get on with their lives and hire others to care for me.

Issues of faith often come to the fore when life deals you a severe blow. It’s easy to become agnostic when one feels he/she is not deserving of what appears to be God’s punishment. It is so much more dignified, though, to utilize the experience as a means of building character, demonstrating to the world courage in the face of disaster and perseverance in the face of adversity. Despite all the setbacks and sometimes humiliating circumstances my parents have had to confront, they have managed to maintain a sense of humor and keep on going, albeit somewhat reluctantly. They find pleasure in the little things in life—a violin concert, listening to anecdotes about their great-grandchildren, and visits from family and friends.

As for myself, the experience has taught me important lessons that I believe have improved my character. I have gained a greater respect for the elderly. I have learned to exercise a patience that I never before knew I had. I have overcome severe depression and learned to prioritize and put things in perspective. I have learned to be grateful for all the precious moments granted to me. Rather than losing faith, I have learned to pray harder than ever that God continue to grant me and my loved ones His many favors and have learned to look around and recognize just how many favors He has indeed granted us.

My advice to you is to be grateful for every single day and utilize it to its fullest. Who knows what tomorrow may bring? Carpe diem—and don’t look back.

Sites for suggestions on how to cope with emotional turmoil:

http://www.nia.nih.gov/Alzheimers/Publications/coping.htm
http://www.webmd.com/alzheimers/features/caregiver-grief-triggers-mixed-emotions
http://www.ec-online.net/knowledge/Articles/emotions.html
http://www.dshs.state.tx.us/alzheimers/hints.shtm
http://familydoctor.org/online/famdocen/home/articles/589.html
http://www.bbc.co.uk/health/conditions/mental_health/emotion_index.shtml

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.

Part 8 Legal Guardianship and Financing Revisited--Third Time's a Charm

by
Shari (Zissie) Gitel
zissieg@walla.com

I think I’m finally starting to get the hang of things now. Our third application for legal guardianship (apotroposut) went fairly smoothly. The most involved portion of the process was getting all the paperwork we needed from my sisters who live abroad. It was not complicated, only time-consuming. Once we had all the paperwork in hand, my sister who lives in Israel and I met at court to submit the application.

In my previous experiences in the Jerusalem and Bnei Brak family courts, we had to make several trips to different desks within the building for each portion of the application. In one case we even had to leave the building to make a payment at the local post office and then return to the courthouse to complete the processing. For the most recent application, which we handled in Rishon LeZion, the procedure was far less complicated:

THE EARLY BIRD CATCHES THE WORM

We got there early and were able to get one of the first numbers to be served (from the machine outside the office where you open a file). As soon as the court offices opened for business I was directed to one of the desks for opening a file. I should point out that there were not very many people there, so in any case, it would not have been a long wait, but you cannot count on that all the time. We were advised to get there early, and that is always good advice to follow.

Of course, we were missing some paperwork. We thought we had it all, but, despite what the social worker at the nursing home had told us, there was one form missing. Fortunately, it was a form we could fill out on the spot. The registrar gave us the paperwork and suggested we visit the desk where volunteer law students help customers in completing the forms correctly. Once we finished that, the only remaining item was to have our signatures verified by an attorney who was located directly opposite the desk of the volunteer students. There was a NIS 40 fee for verification of our signatures. Make sure to have your identity card with you for this transaction.


THERE IS A FEE FOR
SIGNATURE
AUTHORIZATION

Then back we went to the original registrar with our verified signatures and the requisite form. The registrar was quite pleasant and accommodating, even gave us a blank copy of the missing form to present to the nursing home so the social worker would not omit it the next time someone needed to apply for guardianship. She accepted our payment (NIS 470) for the application by credit card and started to send us on our way. That’s when I noticed that my last name was spelled incorrectly on the application she had typed—never a good sign when dealing with computers. We straightened out that little glitch and were done.

Now we are awaiting the court’s decision, which will take approximately two months. When you make your payment you are given a document with the court case number on it for follow-up. Presumably you can make periodic inquiries as to the status of the case. This also enables you to petition the court to act immediately upon your request in the event an emergency situation arises. The social worker at the nursing home has assured us that she will do the follow-up to make sure that things progress at a decent speed.

In the end we only applied for physical guardianship. It is possible to apply for both physical and financial guardianship, but we chose not to after learning of the problems a friend has had in meeting the court’s requirements for such guardianship. Among other things the court requires opening of a separate guardianship bank account, as well as detailed itemization of income and expenses. Also details of assets for the past seven years have to be itemized. Our friend has no idea how to go about itemizing everything, and doesn’t even know what her parent owned or did not own seven years ago, let alone the value of it. Since I am an authorized signatory on my parents’ checks, we are postponing this aspect of the guardianship, at least for the time being. It just seems like too much additional aggravation if we can get by without it.

KEEPING TRACK OF ALL THE PROCEDURES SOMETIMES FELT LIKE A JUGGLING ACT

Simultaneously we had reapplied to Lishkat Habriut for help in financing payments for the nursing home. For better or for worse, the value of the dollar had dropped dramatically, making it impossible for my parents’ social security income to cover their nursing home care costs. The whole process had to be restarted from scratch—same forms (with a few additional thrown in for good measure), same committee review. It took a little longer than originally promised, but eventually we received the answer we had long awaited: the Ministry of Health would finally assist us in payments. My sister in Israel was assessed a monthly fee based on her income, and my parents would have to pay their social security income to the Ministry of Health. This would cover part of the nursing home fee, while the Ministry of Health would pay the balance, including any medications approved for the “basket of medications.” According to the manager of the nursing home, the Ministry of Health also pays for the patient’s ambulance costs and diapers.

I believe that pretty much brings this tale up to date in my adventures with the various branches of bureaucracy I’ve had to deal with while parenting my parents. There may be more surprises waiting down the road, and you can rest assured that if there are, you will hear about them. It’s been quite a learning experience for me, and I hope you’ve also learned something from my trials and errors. Good luck in your own personal journey down this never boring road. I hope you encounter no bumps or detours, but if you do, and I can be of any help, please don’t hesitate to contact me.

Stay tuned for my next post, where I hope to deal with the range of emotions associated with the trauma of caring for a loved one with a deteriorating condition.

And now, I think I’ll work on a project that has been weighing on my mind since I began this journey—getting my own house in order, both literally and figuratively.

TIME TO GET MY OWN HOUSE IN ORDERI sorely need to learn more about handling family finances, a realm that until now my husband has single-handedly controlled. I’m going to make sure my will is up to date (why else did I send my daughter to law school?). And I’m going to do a clean sweep of all those things I just had to hang onto that in truth I no longer need and just add to the clutter of my home. Last, but not least, I’m going to work off a lot of tension that has built up in my system and find a healthy outlet for all that energy—after all, why else did God create tennis courts?
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.

Part 7: When Push Comes to Shove—a Journey of Epic Proportions

By Shari (Zissie) Gitel
zissieg@walla.com
Caught between a rock and a hard place
It was bound to happen eventually, and indeed it did. One foreign worker was no longer enough help to care for my parents. For a while we were able to manage with a foreign worker plus occasional help from a local caregiver. As time wore on, however, we began weighing the option of either hiring an additional full time foreign worker or admitting my parents to a nursing home. Neither one of the options was attractive: the conflicts that might arise between two foreign workers living together under one roof (one male and one female), although it would be affordable, appeared formidable (and I am not even certain whether by law it would be permitted); the impersonal atmosphere of a nursing home and the indignities it probably afforded were no more palatable. We were caught between Scylla and Charybdis. The cost of the nursing home, itself, was way out of my parents’ reach. Even if we located one that met our needs, how would we be able to afford it? To make matters worse, the foreign worker we had in our employ was seeking to move to Canada. We were faced with retraining someone new, if not two new people. The scales started to tip in favor of care in a protected environment.

What do you call a Jewish Odyssey?
Thus began the Odyssey of searching for an appropriate nursing home and the means to pay for my parents care. In our ongoing epic we became familiar with the Ministry of Health as well as the Ministry of Welfare, who vie against each other in funding of nursing home care—neither one of them wanting to assume responsibility for it. Patients in need of care in a protected facility are categorized in a number of ways. For our purposes the two categorizations that applied to my parents were either tshushi (frail) or siyudi (requiring more extensive nursing care). The Ministry of Welfare funds tshushi care, whereas the Ministry of Health funds siyudi care. Bituach Leumi funds nothing towards nursing home care. And here’s how the process goes:

One must apply to the Ministry of Health through Lishkat HaBriut to see whether the patient qualifies for nursing home care, and whether the patient is considered tshushi or siyudi. The initial forms comprise medical reports completed by the patient’s physician and nurse detailing the patient’s degree of functioning (ADL’s again), as well as additional medical documentation of specific diagnoses by specialists when dementia is present (from my experience). In addition there are forms for the social worker to complete. This information is submitted to the Social Worker at Lishkat HaBriut, who reviews the forms in a meeting with you to ascertain that all the necessary information is available for submission to their medical committee for review. The review committee meets every couple of weeks to render decisions.

NOT ALL NURSING HOMES ARE RECOGNIZED BY MISRAD HABRIYUT FOR FUNDING—IF FINANCIAL AID IS REQUIRED, MAKE SURE THE FACILITY OF YOUR CHOICE IS RECOGNIZED AND HAS A “CODE”.

When we first submitted our forms for the review committee, we were contacted and told that some committee members would have to examine my parents at their home. Apparently it was not clear whether they were siyudi or tshushi. A nurse and social worker from Lishkat HaBriut arrived for the examination and were of the opinion that one of my parents was siyudi while the other was tshushi. I explained how we wanted to keep them together in the same room in a nursing home, and if they were categorized differently that would be impossible. (Not only that, we would have to deal with two different government entities for financial support, if indeed they did qualify.) The crew informed us that they would make their recommendations to the committee and we would be hearing from them. Then we again played the waiting game.

PARDON ME FOR CHANGING
MY GENRE, BUT HERE'S WHERE WE HIT "CATCH 22"


Nursing Home Sweet Nursing Home
While we waited we toured several nursing home facilities in the area, while my sister did the same where she lives. We were in for a rude awakening when the nursing home administrators looked at my parents’ medical records and forms listing their functioning capabilities. They predicted that my parents would fall between the cracks—they actually required siyudi care, but would, from past experience, most probably be classified as tshushim by the Ministry of Health. In that case my parents would fall under the responsibility of the Ministry of Welfare. If the nursing home maintained they required siyudi placement, no government funding would be available. Both bodies—the nursing home and the Ministry of Health—must be in agreement in the categorization for the patient to qualify for financial coverage—be it the Ministry of Health for siyudi patients or the Ministry of Welfare for tshushim. Nevertheless, we plodded on in search of a place suitable to deal with their needs and with a religious atmosphere appropriate to their background and observance. English-speaking staff was also important to us. Proximity to either my home or that of my sister was a priority, and the cost played a major role in our decision making. No one place met all our conditions. Time was running out. We decided to waive some of our preconditions and opted for what we believed was the best choice at the time. We will never know if the choice we made was the right one, but given the time constraints and the condition of my parents we could not be too choosy.

I STRONGLY RECOMMEND STARTING THE NURSING HOME SEARCH
BEFORE YOU ARE UNDER PRESSURE TO MAKE A HASTY DECISION

The committee proved to be compassionate and categorized both my parents as siyudi, effectively guaranteeing they could be housed in the same department, and most probably (depending on the availability) in the same room of the facility they chose. Not only did this relieve our anxiety about their transfer to a new place, it also made my parents more receptive to the idea of this drastic change. No matter what difficulties they might have in adjusting to the new situation, at least they would be able to face them together, as they had throughout their lives. Plus we had a definitive answer as to which government body would be in charge of the financial aspects and were able to avert the hassle of a power struggle between two government offices.

I hope you haven’t forgotten about all those forms you always have to fill out. We had only just begun. Now that the medical portion of the application had reached its close, we were faced with the financial reporting. Application forms are available online. There are forms to be filled out regarding the patient and his/her spouse’s finances and property, as well as forms regarding the finances of each of the patient’s children residing in Israel. Monthly salary printouts of children working in Israel must be supplied for the three months preceding the application. When we first applied (and were rejected, because my parents’ finances were just borderline enough to allow them to “get by”), there were fewer forms than what are required now. Recently Lishkat HaBriut has added more forms to those previously requested. The patient and his/her children also have to provide a listing of assets such as property and automobile, bank account information and documentation of property holdings. How do I know this? I have just re-applied for financial support and am still awaiting an answer.

As an aside, what put my parents over the limit financially was the fact that they each had a nursing care insurance policy that we had activated when they started paying for in-home care. This additional monthly income just put them over the edge. If you are considering purchasing nursing home insurance (bituach siyudi), carefully weigh the pros and cons. You may be paying more in monthly premiums than is worth your while. This, of course, depends on your financial situation. For someone who has a limited fixed income and who will require government help for nursing home care, it may not be cost-effective to invest in additional nursing home insurance. Do your own calculations and research to see where you fall in this area. There is an excellent article which appeared in Ha’Aretz describing the pros and cons of investing in this type of insurance.

Epics don’t necessarily have happy endings
To make a long story short, we resettled my parents in a nursing home near my sister. Having been assured by the marketing manager that the staff spoke English and the religious atmosphere coincided with my parents’ traditions, we toured the facility and were favorably impressed with the care and accommodations. It wasn’t the Waldorf-Astoria, and the synagogue didn’t boast any famous cantors, but it was clean, well-staffed and met the physical demands of my parents’ condition.

Soon it became apparent, however, that not all the staff spoke English—in fact very few of them did—and this has been the source of much aggravation. I can speak Hebrew. My sister can speak Hebrew. My father understands Hebrew reasonably well and can make himself understood in the language. My mother neither speaks nor understands Hebrew—no matter how many times you repeat the question or statement or how loudly you say it, she still will not understand it. Regardless of how many times she tries to express what she needs or wants, the staff is totally baffled by the foreign language she speaks. She is an ulpan (Hebrew classes for new immigrants) dropout and now sorely regrets it. The alternate languages that may have helped her communicate in her current environment are Amharic and Russian, and perhaps some Yiddish. She struck out in all three. So, when I say it is important to learn Hebrew, I mean it. You cannot afford to be reliant on a translator when you have to fend for yourself. If you haven’t learned Hebrew yet, now would be an excellent time to start.


BE KIND TO YOUR CHILDREN… THEY’RE THE ONES WHO WILL CHOOSE YOUR NURSING HOME.
If you find yourself in need of approaching the Ministry of Health/Lishkat HaBriut for the purposes of financial aid, be aware that the hours of service are quite limited. In my area they receive the public one morning and one afternoon per week, and are available for phone queries three mornings a week for about two hours each morning. See the link for the various offices and their contact information to ascertain the hours applicable to your area. Our experiences with the personnel have been quite positive. They have been caring, informative and helpful. Regretfully, even their willing personalities do not get the bills paid if the patient does not meet the standards dictated by the system. We fell short and for several months have had to bear the burden on our own. Nevertheless, I know that we made the right decision to place my parents under constant medical supervision. As painful and expensive a decision as it was, I can see now that there is no way we could have continued catering to their growing needs in a home environment. It was not fair to them, and it was not fair to us.

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.

Part 6: The People You Meet Along the Way

by Shari (Zissie) Gitel
zissieg@walla.com

Preface
Some of my closest friends and relatives are doctors and nurses. I wonder how they'll feel after reading this post.

Introduction
I debated long and hard whether or not to include this column, because it really does not provide any guide to services available. Rather it reflects my feelings of frustration with the system. So, I won’t be insulted if you choose not to read this post. If, however, you do choose to read it, and your feelings resemble mine, maybe you can add your voice to mine in trying to improve how we are treated by members of the health professions.

I’d like to talk about the people I’ve met along the way on this challenging road. As you can imagine they come in all kinds. Somehow those that manage to get under your skin are the most memorable, unfortunately, and we tend to forget the many wonderful people out there who really care. I believe in giving credit where credit is due, and I also believe that inexcusable behavior should be brought to the attention of those in authority. In the process I have become an expert letter-writer. Some of my more successful letter-writing experiences will remain secret, as part of the legal agreement we reached restrains me from implicating the institution at fault. My apologies in advance to every person in the health field whose performance characterizes how people in the medical profession should act.

A Trip Down Memory Lane
So let’s take a trip down memory lane and review some of the highlights, instances that provoked some of my letters of commendation and condemnation. There is no excuse for rudeness, particularly when dealing with those who are ill and the family members who are frazzled enough by coping with the illness that the last thing they need is the apathy or outright nastiness of the very people who control the fate of the patient. To me it seems that anyone who has chosen medicine as a profession would actually strive to be courteous and helpful to patients and their caregivers. Why then is it that when I have to go to kupat cholim I start to break out in a cold sweat, my blood pressure rises and my stomach starts turning somersaults? Could it be because I know what’s in store for me there? Before I even start dealing with solving the dilemma of the day, the mood is set by the patients around me. Does this prelude to dealing with the receptionists sound familiar?

"I have to (insert your favorite excuse), but I’m after you in line if anyone else comes.”
“I don’t care what time your appointment is scheduled for, my number is before yours, so I’m going in first.”
“I was here earlier and just have to ask one more question that I forgot.”
“I’m only here for a prescription—it will take just two seconds.”

WHY DO I BREAK OUT IN A COLD SWEAT JUST THINKING ABOUT GOING TO KUPAT CHOLIM?

And the list goes on. Then, when at long last it's your turn to sit down and discuss your matters you get “the attitude” from the clerks. They seem to indicate that you are nothing but an inconvenience that has shown up to bother them with your petty problems when it’s time for a coffee break. Often you get the feeling that they are trying do everything within their power to throw as many obstacles as possible in the way of your achieving your goal. I do not believe that “the customer is always right.” Of course, there are times when the customer is wrong, but the preconceived attitude that the customer is a nuisance non-deserving of a helping hand is a far cry from providing a service, especially a medical service, adequately.


The Customer is Not Always Right

I will be the first one to admit that many times I have been in the wrong. One of those times I not only messed up which date my father was supposed to arrive for his test, but also showed up there without the Tofess 17-Hitchayvut (the form stating the kupat cholim’s agreement to cover the cost of the service) and the orders for the test. It’s a long story. I’m not usually so absentminded. The test had been set up a month before by the hospital where my father had at the time been hospitalized. A few days after his discharge, the nurse from the hospital phoned me and told me they had set up an appointment for an outpatient test for him on such and such a date. I asked if he needed any paperwork to take with him or any hitchayvut, and she said that it was unnecessary because the hospital had taken care of providing all the details to the testing facility. I admit I should have done my homework, but I accepted what the nurse said to be accurate, recorded the date and time in my Palm Pilot, and we dutifully showed up for the appointment on the date the nurse had told me. Well—you can imagine my surprise when we arrived and the receptionist informed me that my father was not scheduled for a test that day. The test was actually scheduled for the same date but the following month!! I looked at the receptionist pleadingly and pointed out my father. I explained his frail condition and how difficult it was to transport him. With a sympathetic look she told me she would see if they could fit him in anyway that day. Then she asked for the requisite paperwork. I told her that the appointment had been set up by the hospital while he was an inpatient, and they had assured me that no paperwork was needed. You should have seen the look of incredulity on her face. She explained that without the orders and the hitchayvut they could not perform the test. But, she told me, she would try to contact the family doctor’s office to get them to fax the necessary paperwork on the spot. And that’s exactly what she did. In the twenty years or so that I had been living in Israel this was the first time I was presented with a real live caring individual who, although she would have been perfectly within her rights to send us packing, went out of her way to help the patient. After I recovered from the shock and thanked her a million times, I left my father sitting supervised in the waiting room while I went and bought pastries for the whole staff.

Then there is the kupat cholim receptionist who, when I asked her for advice on how to go about getting a hitchayvut that would cover monthly hospital treatments for a whole year, saving me the time of having to request and pick up the hitchayvut each month, told me that to her “the patient is king,” and she will run the paperwork through to the highest levels of administration to make sure it gets done properly, saving the family the aggravation of having to deal with all the red tape. After all, she said, if you’re going to do a mitzvah you should see it through from start to finish.


There Really are Some Angels of Mercy out there in the Medical Field

How about the doctors who, when they see how hard it is for the patient to come into their hospital examining room, actually go out to see the patient and speak to him/her in a more spacious area, saving the patient and the family the difficulty of navigating small spaces and getting up and sitting down numerous times? Or those who unsolicited phone the patient’s home to check on the patient’s recovery? There are even some who cheerfully make house calls without any reference to how much they have to go out of their way to do this and how pressed they are for time. Rare breeds, these doctors.

If you are in the medical profession and don’t recognize these dispositions as part of your makeup, you should ask yourself, “why not?” What has made me so callous that I act in a way that belittles the importance of the patient and his/her family as human beings and turns them into “cases” referred to by their diagnoses rather than their names who, to me, only represent added paperwork? Why should a patient be forced to feel that his/her respect and dignity are being violated by the sometimes flippant attitude directed towards him/her—anything from ignoring his requests to outright disrespect of his privacy, acting in an unprofessional manner often bordering on total negligence?

How would you like a dose of your own medicine?
Now I’m about to do some serious receptionist/nurse/doctor bashing, so, if you don’t want to hang around for it, stop reading now.

Before coming on Aliyah I worked as a medical assistant, first for an oncologist for 10 years, and then for a group of neurologists for about 10 years. I’ve seen pretty much the worst of what can befall humans when illness or accident strikes, and I’ve worked with some wonderful, caring medical practitioners who have gone beyond the call of duty to reassure family members, to work extra hours, to treat patients with the dignity and respect and compassion that is their due. My husband also worked in the medical field in hospitals both in the USA and Israel, and we both are privy to what goes on in that world. We have sat at both sides of the desk, so to speak, and have come to know some very considerate, polite, and compassionate professionals in the field of medicine.

It is the others that give medicine its bad name. What happened to the work ethic of performing your job to the best of your abilities? Not slacking? Not looking for every reason to avoid having to put in a little extra effort to bring a result that will be agreeable to both the service provider and the recipient? The motto of many of these workers seems to be “Work slowly and carry a big lip” (with apologies to Theodore Roosevelt).

The Hierarchy of Power and its Abuse
The receptionist, who is first in the line of hurdles to overcome, wields an enormous amount of power in his/her small corner of the world. And in many cases he/she will try to demonstrate to you just exactly how much control he/she has over the outcome of your request. These workers are no doubt underpaid and unappreciated, and the quality of their work usually reflects the grudge they bear on these accounts. This, however, does not excuse rudeness and unwillingness to do the job properly. You can accomplish much more by doing something right and thoroughly the first time than by cutting corners and trying to see how much work you can save yourself. If you’re sitting there already, you may as well smile and be user-friendly.
If You Aren’t Doing What You Love, At Least Love What You Are Doing

Let’s move on from pkidim/ot (clerks/receptionists) to the next human in the medical hierarchy—nurses. There are many species. For instance, the nurses who will do nothing more than the minimum to care for you, and act like they’re doing you a favor to boot. One of my favorites was the nurse at the specialist’s office who started yelling at me for not following her instructions properly in exposing enough of the patient’s body for the test she was going to perform. (God forbid that she should overextend herself and pull the clothing down another two inches on her own. Maybe that wasn’t part of her job description.) I lost my temper and yelled back at her, because her outburst was so uncalled for. It was amazing how, when I asked what her name was and started writing it down, she became the absolute picture of courtesy and developed a sweet personality.

Her nastiness pales, though, in comparison with that of the impudent nurse who told me she could tell I was “the daughter-in-law and not the daughter of the patient,” because, had I been the daughter of the patient I would have shown more concern and would have brought an undershirt to put on her for going home. There I was—all alone with a demented wheelchair-bound woman, taking care of releasing her from the hospital, arranging for an ambulance, dealing with discharge reports and all the other bureaucracy involved in getting my mother-in-law from the hospital to her nursing home, and I was greeted with the audacity of that nurse. I thought perhaps I had misheard what she said because it was so outrageous, so I asked her to repeat it, and sure enough that’s what she had said. It totally unglued me. I could hardly describe to the head nurse what had happened to upset me so much because I was crying and trembling so hard. That nurse was immediately called into a room for a good bawling out by the head nurse in charge, and, when I calmed down sufficiently a few days later, I wrote a scathing letter describing the incident to the hospital director. I have more stories about less than exemplary nurses but if I told them all, this article could go on forever.

Contrast this with the visiting nurses who are usually models of kindness and patience. They take the time to listen to the patient and to teach different techniques to family members unfamiliar with procedures necessary to care for the patient. I don’t envy any nurses, with the complicated and often unpleasant tasks demanded of their job. I hold in high esteem those nurses who are truly dedicated and proficient. Without them the patient and family would be at a total loss. If only there were more of them around...

Ahhh, now we come to doctors. There is some question whether they come below or above the nurses in this hierarchy, but for our purposes we will put them at the top. It is beyond my understanding why there are so many doctors (I’m referring primarily to doctors on staff in the hospitals) who treat patients and their families like some kind of dust they have to brush off their clothing. I enclose links to several oaths recognized by the medical profession, namely the Hippocratic Oath (for doctors), Maimonides Physician’s Oath (apparently a prayer he said before he started working each day), and The Nightingale Pledge (used by many nursing schools when nurses achieve their R.N. degree). Nowhere do I see a reference in any of these oaths that family and patients should be treated by doctors and staff like they are not deserving of courtesy and compassion. I’m reminded of one of my favorite stories:

A Jewish man dies after having lived a long observant life. When he enters the Gates of Heaven, he is warmly greeted by the welcoming angel and escorted on a tour of the grounds. They start walking along, and the angel points to a bearded gentleman sitting outside a tent, “That’s our forefather Abraham,” he says to the newcomer. Jacob stares in awe and can’t believe he is actually in the presence of such a renowned person. They walk on a little and come across a man with a glowing face polishing two tablets. “You probably realize that that is Moses,” the angel says. “And over there you can see King David and King Solomon.”

“Wow,” Jacob says to himself. As they continue their tour he notices someone walking along in a white coat with a stethoscope slung around his neck. Everywhere this guy goes people bow their head to him. He turns to the angel and says, “Who is that? He really must be somebody important the way everyone is treating him.” And the angel says, “Oh, Him, that’s God—He thinks He’s a doctor.”

WHAT EVER HAPPENED TO THE HIPPOCRATIC OATH?



Shall I start with emergency room doctors or ward doctors? They are pretty much the same in their behavior patterns. ‘Don’t bother me now’ is the general attitude. Well, in the emergency room, if I wait for later, it may be too late. I personally know someone who suffered this fate, and the litigation is still in progress. And, in the ward, if I wait to talk to you during your posted hours, the chances are 50/50 you will actually show up there, and why should I once again lose a whole day’s work waiting for someone who may or may not show up to speak to me? And, if I accidentally ask you a question that is beneath the dignity you ascribe to your level of expertise and not part of your job description to deign to answer, do not contemptuously say “I’m a doctor, not a receptionist.” A polite “I’m afraid I don’t know the answer to your question but I think …. can help you,” would be received with much more understanding.

Finding a Cure
Is there a solution to this attitude problem? Probably not. I think all medical professionals should see the film The Doctor, starring William Hurt, based on a true story described in the book written by Dr. Ed Rosenbaum (and subtitled “A Taste of My Own Medicine”), and read the book Tuesdays with Morrie by Mitch Albom, just for starters. Frequently I will make a comment to a service employee such as “If you smiled you would look so much more pleasant.” To those employees who indeed go the extra mile I shower praise and comment on how wonderful it is to be treated so graciously. I write letters not only about those who disappoint me but also about those who are outstanding in their approach. Whenever I can, I tell them that I am going to write a letter in their praise and try to ascertain exactly to whom the letter should be directed to have the most impact. I don’t know that my letters help, but I would like to think that maybe, little by little, we can make inroads into improving how we as recipients of treatment during critical times of our lives can at least feel that those who are out there to help us through those times really do care.

You, too, can state your opinion when you see an injustice or some extraordinary behavior worthy of comment. Perhaps together we can make a change.

*********
Originally I was going to end this column right here. I decided, however, that in all fairness something should be said about us as consumers and our attitudes. It is incumbent upon us to be as courteous to the person serving us as we would expect them to be to us. Coming in with a fighting attitude and aggressive behavior does not serve our purposes. It immediately puts the other person on the defensive and sets up a barricade before we even get started with our negotiations. So let’s all try to set an example, and we just may be able to work out our problems to everyone’s satisfaction in an atmosphere devoid of animosity and dedicated to achieving what is in everyone’s best interests.


For your reading pleasure I enclose a link to the Patient’s Bill of Rights and some tips for writing effective letters.

Letter Writing Tips:
1) Organize your thoughts on paper omitting any emotional references
2) Ascertain the title, name and address of the person in authority to whom the correspondence should be mailed
3) Compose the letter sticking to the facts with as much detail as possible

• Date
• Time
• Location
• Patient Name
• Employee Name
• Unemotional description of the incident
• Request for action, whether disciplinary, monetary or to draw attention to behavior worthy of emulation
• Signature and contact information
  

Guide to Services for the Aged and Disabled in Israel
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