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My Readers Write:

         Over the last several weeks I have received many letters that have offered advice, asked for help or simply responded to one of my articles. I’d like to share some of these letters with you. We are all experts when we share a common experience and have found solutions that work for us. The ideas presented may just be what someone else has been looking for. In the same vein, your experience may help with some of my readers’ dilemmas.

 

 


Dear Ann:

 

         I just finished reading your articles regarding Bikur Cholim. (December 8-29). They’re excellent. I really received a better understanding and insight about visiting a sick person. I believe part of the dilemma we have with visiting the sick, is that we want to spend time with the person to show we care.  But on the other hand, what can we really do for the sick person other than discuss the “situation,” a topic that, as you point out, is probably uncomfortable and not something he/she really wants to discuss.

 

         As a solution, I have found that if I ask the person if he wants to hear a short Chanoch Teller story or a read newspaper article, I can spend a somewhat substantial time (not just 90 seconds) with the person and still not infringe on his privacy or state of mind.

 

         Please continue your good work.

 

Shea Klein

 

 


         Thank you for your kind response. I think your idea is great. Many of us just don’t know what to say when we visit the sick. Because of this, we may ask inappropriate questions out of our own nervousness or lack of understanding or avoid visiting all together. Bringing something to share with the choleh that is of interest and keeps his/her mind off the illness is a wonderful idea. Whether it is something you read and then possibly discuss or share (humorous or serious) or an interesting Dvar Torah, what you select to share also helps keep the visit to a comfortable amount of time, as well.

 

Ann


 


 


Dear Ann,

 

         Thank you very much. You perform a tremendous service for the well-spouse community with your column. I don’t know what I’d do without it. As the working wife of a husband with Parkinson’s disease, I appreciate your column. However, readers would benefit if, in addition to the personal stories, your column contained information about estate planning, Medicaid eligibility and other practical resources.

 

         The well spouse suffers because of the sadistic health care system in the United States that forces people to become impoverished in order to receive coverage for custodial care (nursing home) or home health care.

 

         Under the twisted logic of this system, people who are crippled by Parkinson’s, Alzheimer’s, MS, ALS, Arthritis, Dementia, etc. aren’t entitled to reimbursement for care needed to assist them with activities of daily living.

 

         It is very disappointing to see how apathetic people in the U.S. are. And no efforts are being made to change this system and expand the services that are covered by exorbitantly expensive private health care insurance (I pay $2,000.00 per month out of pocket) or by Medicare. Politicians are completely silent on this issue.

 

         The well spouse has two choices: to have no life and work to financially support the family and care for the sick spouse, and hold onto the money for your children to inherit – or get a life, send your spouse to a nursing home and lose all of your money. The community spouse is entitled to very, very little, and Medicaid even goes after real property now.

 

        Unfortunately, divorce may be the answer in many cases, for financial survival. The well spouse community needs practical advice, not just commiserating with others similarly situated, as they are portrayed in your column. I hope you print this e-mail in your column.

 

(Unsigned)

 

 


Dear Well Spouse,

 

         I fully understand the dilemma you find yourself in, as do most well spouses, because we have all suffered similarly. Even divorce is not the option that you think. It is my understanding that the government will take into consideration how long you have been divorced and charge you accordingly for your ex spouse’s care. The longer the divorce is in place, the less you pay. I wish I had the expertise to help you – and all of us, through this mega-financial burden we face.

 

         I invite any financial consultants, lawyers or anyone with experience in lowering the financial burden of well spouses to write to me with their suggestions.

 

        Meanwhile, I’d like to refer you to the articles I have written on wills (2/20/04); asset inventories (2/27/04); power of attorney (9/30/05); joint accounts (12/31/04); the purchase of impossible-to-find, accessible materials (2/24/06); death and retirement benefits 12/2/05); pensions(11/25/05); disability insurance (19/19/03) – to name a few articles that did deal with practical financial planning advise that you may have missed. I hope they can be of some help.

 

         I also feel that we can all learn from each other’s experiences. Just knowing someone else is in the same situation and sharing the same feelings have helped many of my readers, emotionally. Many of the situations our peers shared have helped others handle that situation better when faced with something similar. It is also my goal not to “just commiserate” but to make those outside the well spouse community aware of what we deal with.

 

         Perhaps their awareness will eventually change the apathy you mention and make our politicians more responsive to our plight, thus changing the very situation in which you, and all of us living with chronic illness, find ourselves.

 

Ann


 


         You can reach me at annnovick@hotmail.com

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More Articles from Ann Novick

When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

Printed from: http://www.jewishpress.com/sections/magazine/my-readers-write/2007/02/21/

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