Ask Miriam – August 2024
Dear Miriam,
I am almost 80 years old and in pretty good shape for my age, but my wife, who is 81, was recently diagnosed with dementia. We have an appointment scheduled with a neurologist who will hopefully be able to tell us more, but in the meantime, I am completely stressed out. My wife follows me everywhere around the house and I can never get a moment to myself. She even tries to follow me into the bathroom – when I don’t let her in, she waits for me outside the door, Needless to say, she listens in on everything I say on the phone and she is always interrupting, thinks I am talking about her, and doesn’t give me any privacy or peace. I read that one of the symptoms of the disease is that the person doesn’t even know that they have anything wrong with them, and that is my wife exactly. I know I shouldn’t yell, but sometimes I just get so frustrated that she won’t leave me alone. What can I do?
—Desperate Caregiver
Dear Desperate,
Thank you for reaching out. It’s such a challenging time when a loved one has been diagnosed with dementia and the journey is just beginning. It’s completely normal to feel frustrated and overwhelmed. And it’s important to know that with dementia, your wife is losing the ability to understand and change her own ways of thinking, speaking, and acting due to the changes in her brain.
What your wife is doing is called “shadowing” and it is very common. She may feel frightened or confused even in the familiar environment of your home, and she sees you as a source of comfort and security. Knowing this may help you to be more patient with her, and perhaps you can redirect her when she is anxious, following or interrupting you. For example, you could give her certain tasks that she is still able to handle, such as watering all the plants or setting the table before meals.
In order to provide you with some relief and time to yourself, consider respite care, which is time when you, as the primary caregiver, can relax and do your own activities you enjoy. Think about friends or relatives who might be able to take your wife out for a meal or spend some time with her, even just once a week for a couple of hours. Agencies are another option, and some organizations provide grants for temporary respite care. In addition, look into adult day programs for your wife. These would provide her with routine and socialization, as well as give you a break from caregiving.
When you go to the doctor, be sure to bring up the symptoms of shadowing and anxiety she is experiencing. There may be medications or other recommendations that would be helpful. In addition, a structured daily routine and your ability to respond in a calm manner when she is agitated will help to keep her calm. Using redirection and distraction will also help you to manage her behavior without getting upset with her.
Consider joining a support group. Sharing your experiences with other caregivers who are going through similar situations may help you feel less stressed. Be kind and compassionate with yourself and know that it takes time to adjust to being a caregiver and to learn how to better cope. For more information about respite, adult day programs, support groups, and more, call the Alzheimer’s Los Angeles Helpline at 844-435-7259.
Best,
Miriam
Questions for Miriam can be sent to askmiriam@alzla.org.