Dear Dr. Yael,
I am writing to you about the trauma of being married for over 50 years to a man whom I love who was diagnosed with Alzheimer’s about five years ago. My wonderful marriage is now a disaster. My husband tries to put on a show publicly, but when we are alone he curses and screams at me. It is like being in prison. We had a great marriage for many years and we have amazing children who are happily married. I, unfortunately, have friends who have gone through the same situation. I need to find coverage if I want to go out and life is so challenging. Our children feel that I must watch him all the time and they try to help us.
I feel so trapped. Please give me some ideas on how to handle this situation. I love reading your column.
A Fan
Dear A Fan,
Alzheimer’s is a challenging disease for the patient as well the spouse. Alzheimer’s disease changes many aspects of a relationship. The person with Alzheimer’s disease still needs love and affection. However, it becomes challenging to show love to someone who is screaming at you. You may have lost the companionship and friendship that you once shared. Your roles have also changed as suddenly you have to assume your role as well as your spouse’s role. Perhaps your husband always looked after the finances and now you find that you have to do this task. Since making all these decisions can be overwhelming, you should try to either get outside professional help and/or engage your children in assisting you with this task. You may also find that relationships with friends and family members have changed. People may be shying away from you since they feel uncomfortable about what to say. You may have to initiate relationships with people and invite people over. If it’s too difficult for you to host others, you must get outside help and try to socialize outside by going out with friends. I know getting outside help is easier said than done, but perhaps your children can help you find an aide that you can employ regularly so you can get out a few hours every day. It is imperative that you get out of the house, so that you do not get depressed.
You must take care of yourself! You don’t want to lose yourself. As the caregiver, you must not fall into the trap of not caring for yourself. You do not want to get sick yourself emotionally or physically.
As far as your children are concerned, they probably feel guilty and want to do more in this challenging situation. The Alzheimer’s Society can help, and you should contact them to see if they can offer you some support.
There are several feelings that caregivers and family members feel when dealing with an Alzheimer’s patient. Guilt, grief, loss, and anger are feelings that are common in dealing with this situation. Let’s discuss tips for success in this very challenging situation. A sense of humor can help. Try to laugh with your spouse about things that occur or old familiar jokes or situations. Be careful never to laugh at your spouse. The person struggling with Alzheimer’s can be paranoid or upset. You need to exert extreme sensitivity to using humor in a productive manner.
It is imperative that you remember that it is the disease, not your spouse, that is the problem. The anger and spiteful remarks are coming from the disease, not your spouse. Try to continue to strive for a healthy relationship. Hold his hand, wink at him, and try to make him feel good about himself. This will be very difficult for you, but it will also help you maintain some sort of normalcy when things are calm. If you can focus on the fact that it is the disease, not you or your spouse, it may help you not feel as bad when those insults are being said.
Don’t do this all on your own. Try to get outside help. When people offer to help, take them up on it. Don’t try to be a superwoman. You need to recharge your batteries and feed yourself emotionally (a lot) in order to make this situation livable. The more you fill up your own tank the better you will be able to navigate the situation.
I wish you hatzlacha in dealing with this very challenging situation!! May Hashem give you the strength you need to continue taking care of your husband and to better emotionally and physically!
