JOAN’S BLOG – WED/THUR, FEBRUARY 17/18, 2010 – ALMOST EVERYTHING YOU ALWAYS WANTED TO KNOW ABOUT ALZHEIMER’S DISEASE AND MARRIAGE, BUT DIDN’T KNOW TO ASK.

The motto of this website is “Our Issues are Unique”. Indeed they are, as no one but another spouse could relate to the emotions of having a spouse with Alzheimer’s Disease. My latest thoughts have been about everything I did not know about Alzheimer’s Disease and the toll it would take on my marriage when this journey started. As I mentioned in my Welcome Blog of July 07, my only knowledge of an Alzheimer marriage was Nancy Reagan staring up adoringly at her husband. Thus, everything the disease brought to my marriage was an utter and complete shock to me. Since then, I have made it my mission to educate and inform as many spouses as possible about what to expect when Alzheimer’s Disease comes into their marriage. With that idea in mind, I have come up with a basic list that I feel should be given to every “newbie” AD spouse, not to frighten them, but to reassure them that what is happening and the emotions they are feeling are “normal” under the circumstances; that they should not feel guilty or alone; that their issues are shared by every Alzheimer Spouse. Please add your own ideas to my list on the message boards.

• Alzheimer’s Disease is not just about memory loss. Early symptoms are often personality changes – irrationality; irritability; anger; temper tantrums; loss of reasoning ability. If you notice such a change in your spouse, head to a neurologist that specializes in dementia before you call the divorce attorney.

• Your relationship WILL change. You will fight those changes with every breath you have, trying to return it to the way it used to be.  Although exhausting and heartbreaking, that fight is another “normal” part of being an Alzheimer spouse. Alzheimer’s Disease is going to win, but you will find ways of accepting or adjusting to the relationship changes. 

• You can no longer solve marital problems the way you used to. One of the first abilities a person with Alzheimer’s Disease will lose is the ability to reason. We say – “The reason button is broken. It cannot be fixed.” Therefore you will not be able to compromise, discuss issues rationally, or even argue rationally. Walking away from solving problems together is one of the most difficult tasks an Alzheimer spouse must learn to do. You cannot argue with a person with Alzheimer’s Disease. They have tunnel vision, and cannot see any point of view but their own.

• There may be a period of time in which you may not like the spouse Alzheimer’s Disease has given you – do not feel guilty – we all go through it. 

• You may experience one or more of a range of emotions – confusion, anger, loneliness, sadness, guilt, and depression. We all do – you are not crazy; you are not a bad person. These emotions come with the territory of being an Alzheimer Spouse.

• Your spouse will slowly regress emotionally. You will recognize the same stubbornness, rebellion, self involvement, and concrete thinking that you saw in your children as they were growing up.  

• Friends will distance themselves. As your spouse is less able to understand and engage in adult conversation or participate in the physical and mental activities you once enjoyed with friends, they will disappear. But you will make new friends in the Alzheimer’s Community who will be there to understand and support you.

• Family may be in denial – Most people with Alzheimer’s Disease are expert at hiding their symptoms and behaviors for years from those who do not live with them. Expect to hear – “Well, I don’t see anything wrong with him/her.” Expect to hear it A LOT. You can try to educate them about the disease, but the fact is that until your spouse’s condition progresses to the point that it is so severe, it cannot be denied, those in denial will remain so. 

• Finances will suffer – Alzheimer’s Care is expensive. Retain the services of a certified elder law attorney and take his/her advice as to how to handle your finances, including applying for Medicaid.

• You cannot go through this journey alone. Seek education and support. Read everything you can about the disease. Keep in contact with the neurologist treating your spouse. Contact the Alzheimer’s Association for information and support groups in your area. Join a support group.  

• Give yourself a break – find a non-Alzheimer activity that you enjoy and participate in it – book club, card night, quilting, fishing, hobby club, golf. You will need to make a life for yourself when your caregiving days are over – prepare NOW, so you are not totally adrift when the time comes.

• Your role will evolve from spouse to caregiver. 

• You will find strength in yourself you never knew was there. Reach out to others with your knowledge and experience. It will give you purpose, satisfaction, and comfort.

• Remember – you are not alone. This website provides a wealth of information and support. Become a member of www.thealzheimerspouse.com and take advantage of all it has to offer spouses of Alzheimer patients. 

Add to my list on the message boards: Joan’s Wednesday Blog – Everything You Wanted to Know about AD and Marriage. 

Feedback to joan@thealzheimerspouse.com

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©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved                                  

 The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.           

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