Jan 222014
 

Charles WarnerTwo years ago, at the age of 69, I was diagnosed with Alzheimer’s disease. Shortly after receiving the diagnosis, I began to think a lot about the future. The more I thought about the future, the more I realized that I needed to implement plans for the inevitable progression of the disease while I had the ability to do so. This also seemed much more proactive than just sitting around worrying about having Alzheimer’s.

Prior to my diagnosis, I was a practicing attorney in civil litigation for 45 years.  During my career, I did not worry too much about what the future held for me and my family. I simply assumed that I would sell my law practice, and, on occasion, hire myself out as a private mediator of legal disputes. I had been working as a mediator for many years and was certain that I would continue after I closed my actual law office. That, of course, did not turn out as expected.

Accept Your Diagnosis        

As a person living with Alzheimer’s, I have learned that acceptance is essential in making meaningful plans for the future. I know it may be difficult, but accepting the reality of the diagnosis is absolutely necessary to enable those of us living in the early stage of the disease to take the appropriate steps to plan for the future. You want to do this now while you still have the capacity to make your wishes known and have them memorialized in legal documents. While it is important to plan for the future, do not let the fear of the future ruin the life you can live now before the disease progresses.

What does it mean to “plan for the future?” In my opinion, among other things, this means to see to your estate planning. Estate planning is the preparation of wills, trusts, advanced health care directives, and generally what you wish to have happen with all of your assets and possessions upon incapacity and/or death. Collaboration with a legal professional is not required in order to plan for your legal and financial future. You can find copies of advance directives and other estate planning forms through the American Bar Association, office supply stores and your state’s health department or local library.

If you choose to work with a professional, a well-qualified legal advisor can help you prepare the required documents.  Locate an elder law attorney who has expertise in the preparation of the documents necessary to carry out your wishes as to the disposition of your real and personal property. Attorneys doing this type of work usually describe themselves as having expertise in “Estates and Trusts.”

Family and Financial Matters

Discuss your estate plan with your family.  Make a list of the assets you possess. What are they worth? Use the legal and financial worksheet to help you organize this information and share it with your family or your lawyer of choice.

I personally found a great deal of peace in completing the legal documents. It has been completed and implemented now and I no longer have to worry about it. Those of us with Alzheimer’s are better off looking at what we have left… not obsessing about that we have lost.

 

Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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  25 Responses to “Making Plans for the Future After an Alzheimer’s Diagnosis”

  1. This happens to be my brother, so I cannot say that I can be wholly objective. But I think this is excellent advice. I can attest that he lives by this: "Those of us with Alzheimer’s are better off looking at what we have left… not obsessing about that we have lost." I have only had to deal with prostate cancer, but that experience did convince me that acceptance is the key.

  2. Great post, Chuck! You are an inspiring advocate for those with a similar diagnosis and their family members.

    I would like to add one more thing that people with an Alzheimer's diagnosis should consider – making plans for companion animals. There are many resources out there now, including rescue groups that you might want to contact and set up a plan for companion animals who may need someone else to care for them at some point in some circumstances. As a volunteer with such a group, I can say that we are often called in to help and it's always better if something is set up beforehand so that the transition can be as easy as possible for both the person and the animal.

    Thanks for being such a positive role model, Chuck. I look forward to more posts from you!

  3. As usual, Chuck, you are eloquent and yet your advice speaks to anyone and everyone who has the misfortune to have to deal with the realities of Alzheimer's. As both Dave and I have stated; you are an amazing man and your attitude speaks of your grace in facing a diagnosis that none of us wants to hear! You and Lisa are an amazing couple and she has been "a rock" during this time, helping to make decisions that will benefit both of you.

    I can't begin to tell you how honored we were that you officiated at our recent wedding! Keep up the fight!

  4. Chuck,
    Life has handed you and your family a big bag of lemons, and with that bag of lemons, you have courageously decided to make lemonade for all of us!
    Thank you for sharing your valuable knowledge and your journey !

  5. Great article. More importantly, it resonates with the underlying wisdom that comes from acceptance. Carpe Diem.

  6. http://alzreflection.blog.com/
    Here is the link to my new Mindful and Spiritual Living with Alzheimer's Blog. Your thoughts are welcome!!!

    Lou A. Bordisso, Ed.D., LMFT

    • Hi Lou,

      I am a retired LMFT. I noticed my memory was slipping and being a "need to know person" I was tested a year ago last June, and was diagnosed with MCI. Overall I have handled it well, yet when I see another "slip" as in an occasional wrong word slipping out, or mistakes when typing, and word finding it is a reminder of progression, which always starts me thinking. Luckily I am an optimist, and that is a help. My husband is a wonderful man, and is very supportive.

      I am part of a study at MA General in Boston, mainly because I have three children and nine grandchildren.

      I just happened onto your blog and this is my first time.

  7. I am sorry about Chuck's diagnosis. He did not mention whether he has long term care insurance.

    Planning should start before I diagnosis. It is too late to insure against the enormous cost of providing
    services after a diagnosis.

    I cared for my Mom for two years. I bought her coverage 17 years earlier and we did all her legal documents before her the onset of her dementia. I was able to keep her at home until her death with the help of an excellent personal live in companion through a home care agency. In her memory I wrote, My Million Dollar Mom which chronicles her life and the time I cared for her.

  8. We did all of the above, however, money for my husbands' care is the big concern.Without long term healthcare insurance I worry every day about the future .
    "Come grow old with me, the best is yet to be " Not so anymore.

  9. I concur with what Mr. Warner has said. My husband was diagnosed "officially" at age 58. Last spring, when he was 60, we got together with an elder law attorney and did all our estate planning–and just in time. In the last 8-10 months, his condition has deteriorated to the point he needs someone with him all day while I work (I am 11 years younger). Wading through paperwork on my own to qualify him for the Medicaid Choice program has been arduous, but having an established relationship with a lawyer and all our ducks in row helped tremendously.

  10. Hi Chuck, Thank you so much for your information. It is good advice. At the same time I would like to encourage you to check out Dr Mary Newport's helpful research and information on utube. Best Wishes and God Bless you, Deb

  11. Your decisions and attitudes are full of wisdom and mental equilibrium. Congratulations. A similar thing happened to me and my husband. He was a practicing UROLOGIST for 40 years and always thought he would die with his boots on. But…, 5 years ago he suffered an ischemic stroke, which although for the mercy of God did leave him physically fit…, he lost a lot of vocabulary and of course we had to close the practice for good. Now I have become the house-manager and I have my hands full. Your advise is very helpful and I will continue to seek my goal which is to have all documents ready for when the moment to depart comes for any of us. Oh…, I got cancer one year after his illness and also God has healed me miraculously but I always have this hunch in my mind…. "Put your estate in order whie you still have time" And I am certainly doing it !!!!

    GOD BLESS YOU… Best Wishes and Good Health. Pray fervently to our Lord Jesus and maybe your illness will depart completely.. Who knows, Just HAVE FAITH> CHEERS!!!

  12. In 1995 my Mother and Father took it upon there selves to get there documents in order –In 1997 my Father took sick and within a month was passed away–At that time I saw a difference in my Mother-it was me who had to move in and care for my Mother due to her medical and financial care taking a while to get a diagnose —doctors telling me she had diabetes-Not–moved to Pennsylvania to care and be with her every day and every minute– still all the doctor said was she will be ok—after getting her home and rehab her everyday(me) doing it –finally sent her to a senior center hoping that this would help(what I didn't know was that they had diagnosed my Mother with vascular dementia–AT THE-(University of Pennsylvania/PresbyterianHospital)in Philadelphia. sent my Mother to a senior center( a woman from a local center called police and SAID i ABUSED HER I was put out of my home leaving her alone with ever animal trying to get a will written.

  13. Thank you, Chuck, for all the information. My Dad had Alzheimer's and thought to do his estate planning in the early stages. Thanks to that, our family still owns his beloved lake house.

  14. Excellent advice – as far as it goes.
    However, when it comes to memory loss,I am glad that:
    (a) I wrote my memoirs shortly after I retired [shortly before in fact, because I was afraid of upsetting some colleagues with more recent events ;-) ];
    (b) I became reasonably sophisticated with the use of Google.
    It is – or was – now I take it for granted – a godsend that these two sources are available to me. I refer to then as my third and fourth cerebral hemispheres.

  15. I have a strong family history of the disease. It started with my Aunty, then my Mom, then my cousin and then my sister who passed away last year, 2012. I am 63. I was already concerned about slight memory changes when I was 60. I had been monitoring myself. I concluded that most people would put the changes down to normal forgetfulness that comes with age. However, I knew better. I did a tremendous amount of research; watched Charlie Rose on PBS when he had the panel of experts on the show. I contacted an eminent professor and I took action immediately. Today, I am 64. Have been on Aricept for a year. I am well. I take care of myself, my home, my finances and my cats. I handle my own savings portfolio. In short my memory is far better than many who are much younger. I am hopeful, yet I have no illusions of what the future holds. All my ducks are lined up as far as investments, my Will are concerned. I am in the hands of an eminent Dr. in New York, even though I live in Vermont. I used to live in New York and am very familiar with the city. I still drive in the City (like a true New Yorker navigating the traffic better than a cab driver. I have always enjoyed good health. I eat healthy food, am engaged and spend a lot of time doing research online and doing puzzles as well. In short, I feel that I am very fortunate to have caught the signs so early. I look forward to the future, yet I have no illusions. A cure will be found in the very near future, within the next 10 years at least. For those who are concerned about their memory, do not ignore the signs, take immediate action before it's too late.

  16. Thank you for your letter! My husband was diagnosed at age 69 and he is in denial. I notice him not making wise decisions and I am scared for him. Recently he was in a car accident and I fear he will continue to drive. His driving was not good before now I am scared for him. He is in denial and tells our friends I made up his diagnosis. Even thou I have an MRI and a wonderful neurologist. My question is how can I help him realize he should not be driving. We have our legal papers all under control due to my persistence before he was diagnosed. God bless and thanks for your letter and your planning and coming to act before is to late!

    Sincerely

    R Formanek

    • Reina,
      You need to make sure he cannot get the keys to his car—any car. Fortunately, after my husband had a stroke, the doctor signed the papers so he would not be able to drive. A few years later, he was diagnosed with Alzheimer's. Think how you will feel if he has another accident and someone loses his or her life. Also your own safety. My husband is now in a Nursing Facility getting the proper care I never could have given him at home. He fell at home and from the hospital he went into the N.F.
      Remember YOU have to take care of yourself. At this stage, your husband does not understand what you are aware of.

      Carolyn

  17. Thanks for the information. I have started planning as I have this disease in the family & I'm now 72. It's a scary thing to face but its is much better to plan for the future of your assets on what & where they are going. This just reminds me to get goin & finish what I have started.
    Thanks again for the infor.
    Sylvia

  18. I was diagnosed with early onset of alhiemers in 2009 at 54 the youngist in Washington st. There is a new medication out that can help. It it is called Namenda. So ig you are having memory problems go to your Dr. Tell them about it. Namenda will keep it from getting worse.

  19. I think it is extremely important that you make your wishes known in writing about having or not having a brain autopsy done after your death.

  20. Strong post Chuck. Brave too. I wish you well on your journey. I saw my father go through this same path before such pro-active measures had complimented the reactive shock of the diagnosis and the conditions agonizing path. In April, my book, Forgotten Sundays (Running Press) will be released. It delves into the challenges facing all the lives touched by Alzheimer's disease.
    Here's a link to the book: http://amzn.to/LySKaU I hope my insights and experiences can be of use to you on your journey.

  21. Strong post Chuck. Brave too. I wish you well on your journey. I saw my father go through this same path before such pro-active measures had complimented the reactive shock of the diagnosis and the conditions agonizing path. In April

  22. My sister died from Alzheimer's disease about a month ago 02.08.14. Today I heard on the news that thousands of people die everyday from Alzheimer's disease, but it does not say that on the death certificate. That is like a slap in the face to my sister and her family who watched her waste away. This has upset me more than anyone can know.

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