November is National Family Caregivers Month.
For 11 years, I was the primary caregiver for my husband, who was gravely ill the entire time. That experience taught me a great deal about my own resilience and the complex nature and redemptive qualities of love.
Now I counsel other caregiving wives through their own epic experiences with seriously ill partners, and have written a book about it as well.
Given that November is National Family Caregivers Month and Alzheimer’s Disease Awareness Month, it’s a good time for women in that very challenging role to know that there are ways you can help a husband live with Alzheimer’s — and still maintain some sweetness, love, and compassion in your marriage.
First of all, I’ve “been there.” I married a man 16 years my senior, and a month after proposing, he was diagnosed with colon cancer, with only a 20 percent survival prospect. Following surgery and chemo for a year, he not only survived but was pronounced “cured” after five years.
After the cancer, though, he developed congestive heart failure. He declined dramatically for four more years until he was fortunate enough to receive a heart transplant. Following the transplant, a variety of body systems began to fail, resulting in his needing dialysis, having severe osteoarthritis, frequent bouts of gout, chronic urinary tract infections, a poorly functioning colon, diverticulosis and diverticular bleeds, hernias, chronic eyelid infections, skin cancers, fluctuating blood pressure, depression, a sleep disorder, free-floating blood clots, a choking disorder, and Parkinson’s disease.
During those 11 years and up until his death, he also had intermittent diminished mental functioning. I was his primary caregiver.
Through my work as a board-certified medical psychotherapist, and while writing The Caregiving Wife’s Handbook, I have heard the stories of many women whose husbands suffer from Alzheimer’s and dementia. Perhaps you’ve noticed that your spouse is forgetting to do things for which he’s responsible, or that he no longer attends to his basic care. He may be experiencing either temporary or permanent diminished mental capacity from psychological or medical conditions. Alzheimer’s, a special focus this month, may certainly be a cause.
No matter the reason, at the very least, this is disconcerting to us, but it may become frustrating, infuriating, and frightening as well. There are things you can do about it. Diminished mental capacity is a great concern to the caregiving wife.
Here are some strategies and tips that I’ve learned:
1. Be honest with yourself. How serious is it? Are these just little things or does he no longer know what day it is, where he is, how to care for himself, or who the people are in his environment? Without judgment, consider if you are blowing the problem out of proportion or, alternatively, minimizing it so you don’t have to deal with unpleasant possibilities. You’ll be better able to handle this if you’re realistically interpreting the behaviors you see. But you may not know how. In order to know that — and then, what to do about it — you need to find out what’s causing it.
2. Have a professional determine the cause. Obviously, there will be very different ways to handle mental limitations caused by depression or overmedicating as opposed to those caused by Alzheimer’s. A diagnosis and professional guidance will help you know what to expect with these mental complications. This will allow you to determine if what you are expecting of your husband is reasonable.
3. Work together, rather than enabling or controlling. Don’t do for him what he really can and should do for himself. This enabling will create an invalid. Don’t micro-manage what he’s able to do. Agree on what you’ll expect of each other and what you are willing to do and not do. Topics can include legal and financial matters, household management, visitors, sleep, and sex, among others. In my book and the work I do with caregivers, I show how to raise issues, have problem-solving discussions with him, and create useful Understandings.
4. Deal with your emotions. If you don’t, they’ll bleed into your care of him, possibly damaging both of you. Emotions are neither good nor bad, they just are. And you’ve likely got a lot of strong ones now, and with good reason. If you’re angry, don’t be mean or passive-aggressive. Find healthy ways to release the anger. If you’re afraid, discuss that with him, if appropriate. In confidence, share your strongest emotions with a close friend so those emotions don’t eat you up. Take care of yourself. If you do less enabling and micro-managing with everything and everybody, you’ll create more energy for yourself and you’ll have less anger.
5. Organize yourself so you can organize him. If he reaches a point where micro-managing is appropriate, start looking at systems to supplement his memory. White down things he’s forgetting. Get a large calendar or white board to post activities for the day or week. If your husband forgets and repeatedly asks, keep directing him to those devices. If he makes some of his meals, prepare a list of items he should include. Create medication lists or special pillboxes, including the amount and dosage time. Put a clock nearby — and even set the alarm. Tape-record answers to things he frequently asks. Organize drawers and closets into sets, or complete ensembles, of clothing rather than having socks in one place and tee shirts, shorts, shirts, pants, and belts in others. As you organize, also make his environment safe.
Mental confusion and diminished mental capacity have a variety of causes. These can lead to strong emotions on our part as we try to navigate addressing the behaviors and solving the problems inherent with this.
Following some practical steps can make the entire process easier and more comfortable for both of you.