By Esther Mann, LCSW
My husband is 67 years old and I’m 60. We’ve been married for close to 40 years and have always had a wonderful marriage. I adore my husband.
For the past five years or so, we’ve both noticed that our memories are not what they used to be. For years we’ve joked that neither of us could remember names of movies, books, even people we knew. It was an annoying reality in our lives, but as I spoke to friends, it seemed as though we were not alone. It was a fact of aging, like needing stronger and stronger reading glasses.
However, over the past year or so, it has seemed that Joe, my husband, was progressing faster than I and was suddenly asking me the same question over and over again. At first I joked about it but soon I realized that it was no joke. I was noticing other problems with his memory, and even his thought processes seemed off to me. I decided that something more was happening with Joe.
So Joe and I made an appointment with a neurologist, and after a few visits we were told that he is in the early stages of Alzheimer’s. I just couldn’t believe the diagnosis. He is young, active, and smart. I felt certain that the doctor was wrong, and I took Joe to another neurologist, who unfortunately said the same thing.
Joe’s father died of this disease maybe a dozen years ago, so we are both well aware of what a horrific illness it is and what both Joe and I will have to deal with. We are both in a panic. I’m already seeing a steady decline in his condition, and though he got involved in a program that is supposed to be helpful and he is on medication, he is clearly on that slippery slope.
I’m writing in to you because I’m feeling like a really horrible person. Up until recently, I’ve lived a wonderful life. I had so much freedom and the financial ability to do whatever I wanted, whenever I wanted. Joe was working until recently. Particularly once our children were all out of the house, I did my thing and loved every moment of it.
Now I find I am sometimes giving myself permission to meet up with a friend or go shopping, but then feeling guilty about leaving Joe home alone. Or else I force myself to stay home with him and then I feel angry at him. I know that this illness isn’t his fault, and I wouldn’t wish it on my worst enemy. But I can’t seem to control the anger from coming up. I yell at Joe sometimes, when he can’t communicate with me properly. I feel like a shrew, and hate myself afterwards.
I don’t know where to put myself that will feel comfortable. I know the road that lies ahead for Joe, and it kills me to think about what he will go through. I know that he’ll be in the best hands professionally, and it will be what it will be. I pray for some kind of breakthrough or miracle, but know that it probably won’t happen.
This is an unpredictable time. I’m behaving in ways that I never thought possible. Most of the time I’m compassionate and helpful toward Joe. But those times when I turn into an angry beast, I don’t recognize myself and even become afraid of myself, wondering what I’ll be like as Joe becomes even more ill.
Do you have any advice for me so that I can remain normal during this time, which I know can last for many years? How can I be the best me that I can—mainly for Joe’s sake, but for my own as well? I don’t want to hate myself, which is starting to happen. I want to feel proud that I was the best wife I could possibly be for Joe, which is what he deserves.
I’m so sorry to hear about Joe’s situation. All disease is awful, but there is something about Alzheimer’s that is particularly cruel and unforgiving. Especially in someone so young—and Joe is really quite young to be diagnosed with this disease. It’s a heartbreak.
It seems your real question to me is about the anger that you find yourself filling up with and the way in which it is turning you into a person you don’t recognize.
I think it’s important for you to understand that your angry response to Joe’s diagnosis is absolutely natural and normal. Who wouldn’t be angry? The two of you had a wonderful marriage together for many years and suddenly the rug is being pulled out from under both of you. Your precious union is under attack and being ripped away. And there seems to be little you can do to stop the siege from continuing.
I’m sure you are also angry about seeing Joe suffer and knowing full well what lies ahead of him. You’ve seen firsthand the ravages of this disease, and it is an ugly picture. Again, your feelings of helplessness, of being unable to fix the situation and freeze time, is understandably creating a sense of outrage within you.
There is anger over realizing that life as you know it will never be quite the same again—a stark reality that in your case is something worth mourning over. Apparently you had quite the life. You were blessed with a wonderful marriage and a lifestyle that filled you completely and left you wanting for nothing. You had quite the run!
I understand your feelings of anger. What you do with them, however, is another story. I know that I don’t need to tell you that it’s not OK to yell at Joe or even to go to a place of resentment toward him. He’s suffering enough and is probably still at the stage where he is aware of his condition and his progressive losses and also aware of how he is holding you back and compromising your lifestyle.
You need to get yourself into a support group ASAP. Only by surrounding yourself with others who are experiencing exactly what you are experiencing will you be able to sit with your feelings in a safe place and express your sadness over your impending losses. You will also be able to express your anger within such a group as well, but this is more about feeling sad over how your life has been derailed. When you are sad, it’s a passive emotion and so you don’t feel like you are doing anything about it. When you express anger, it feels like you are doing something and therefore feels as if you have some control over the situation. Right now, sadly, Alzheimer’s holds all the control, and that’s a difficult truth to accept.
Within a support group, you will also be able to share helpful ideas and practical solutions. You will be able to network and find that you are being understood and not judged. It will feel like a home away from home. You will make new friends, some young like yourself and some old. But all of them will be people with whom you will be able to connect heart to heart.
Secondly, though you’ve mentioned that Joe is already in a “program,” be sure to research what is available for someone in the early stages of this illness and encourage him to attend the various programs that are available in your community. He too will benefit from the stimulation and also from being with others who are in a similar situation. We all need support from like-minded individuals.
Finally, it’s important for you to decide what your obligations are toward Joe but also, equally important, what your obligations are toward yourself. You then need to commit to a schedule that allows you to be loving and attentive toward Joe but also allows you downtime and, yes, even a little fun. If you allow yourself to do—without feelings of guilt—at least some of the things that were routine for you before Joe got sick, you will be a much better wife when you are spending time with him.
Details of how and when to find appropriate help for Joe can also be found by speaking to people in your support group. All your questions can be answered there.
I’m not here to sugarcoat your situation. It’s a toughie and it’s not going to get any easier. You have to accept that there will be many times when you will feel extremely depressed for both Joe and for yourself. Why wouldn’t you be? And that’s OK. As long as you allow it to pass through you and not totally pull you permanently under.
After hooking into a support group and following some of my other suggestions, if you find that you are still frantically mourning the loss of the life you enjoyed for so many years together with Joe and are lashing out at both him and yourself because of your anger and frustration, you may need to reach out to a therapist who can help you grapple with this reality and enable you to adapt to your situation as well as possible.
I wish you strength for your journey through this difficult time. Let all of the beautiful memories of happy times spent with Joe sustain you. Allow your children, friends, and even professionals into your life, as it sometimes takes a village to work through the challenges. Remember, you don’t have to be a saint. But you do want to remain kind and respectful toward this man who was your world for so many years and would continue to be so, if only he could.
Esther Mann, LCSW, is a psychotherapist in Lawrence. Esther works with individuals and couples. She can be reached at email@example.com or 516-314-2295.