Q. My mother, Mary, is in a world of her own. I call it “Mary-land.” She often walks around in circles fussing about the “people who are breaking into the house.” We live in a quiet safe neighborhood, which hasn’t had a break-in in at least fifty years! She’s exhausted, disheveled, and constantly afraid. She is in no way the strong, vibrant person I remember my mother to be.
Things would have been a tad bit better if dad was available to help. My father, Peter, is delusional, agitated, and abusive at times, like a bad drunk, but without the alcohol. He too was diagnosed with Alzheimer’s, a year after she was. So, here I am with two parents, both of whom barely resemble the parents I grew up with.
As you can imagine, watching both your parents lose mental competency is a heart-wrenching journey. I feel like I’m going through an extended grieving process with no closure in sight. My patience is certainly being tested every day, but I try to keep my chin up as best as I can. There are few positive moments here and there, when I bring my children over to see them and when mom tells me on occasion that she loves me. What advice would you give someone in my situation as far as dealing with this scenario and planning for the future? Also, am I more likely to get Alzheimer’s if both my parents have it? Thanks for your help!
A. I’m sorry to hear about your difficult situation.
As you may be aware, people are living longer and the chances of being diagnosed with Alzheimer’s has become more and more common. Currently, an estimated 5.8 million Americans of all ages are living with Alzheimer’s disease in 2019. This number is expected to balloon to 14 million by 2050, according to the Alzheimer’s Association. Yet little seems to have been written about both spouses simultaneously suffering from the disease.
“I’ve seen a number of adult children that have not one but two parents with dementia,” said Dr. Daniel I. Kaufer, a neurologist and director of the memory disorders program at the University of North Carolina in Chapel Hill. “With the sheer numbers of people who are going to develop dementia, it’s going to happen more and more,” Dr. Kaufer said. He sometimes calls it “the double-parent dementia dilemma.”
When Both Spouses Have a Dementia Diagnosis
When it comes to dementia, two people with a diagnosis can be affected in different ways. For instance, even if both partners have an Alzheimer’s diagnosis, they can differ based on the stage of one person’s disease in relation to their partner’s, their respective ages, the dynamics of the relationship before the disease, their physical health needs and the personalities of each spouse – all of which might all have a bearing on their shared experience.
It’s not surprising that a dual diagnosis can create some complicated dynamics within a relationship between the spouses and with caregivers and family members. In some instances, when both partners are accepting of their diagnosis and are willing to accept support, things could work well for the short term. Some couples may even be able to mutually compensate for each other’s difficulties.
Unfortunately for other couples, the fact that they both have Alzheimer’s can make individual care for each of them much more difficult than if they were living independently. Issues are compounded because each person not only has impaired judgement about their own abilities, but they might also lack insight into their partner’s problems. Be sure to keep a close eye on your parents to determine whether they can live together under one roof or if they need independent care, whether you can continue caring for them, and what the plans are for future care.
Caring for Two Parents with Alzheimer’s
Caring for a loved one with Alzheimer’s disease can have high physical, emotional, and financial costs. And this is just one parent or loved one. If you have two loved ones with Alzheimer’s, the demands of day-to-day care, changes in family roles, and decisions about placement in a care facility can be quite difficult, as you are well aware. Good coping skills, a strong support network, and respite care are ways that can help caregivers handle the stress of caring for loved ones with Alzheimer’s disease.
Below are other evidence-based approaches that can help:
• Maintain a strong network of friends and loved ones: People with compassionate and supportive friends and family seem to be able to maintain a better quality of life than those who experience misunderstanding and withdrawal. The relationship with a person’s spouse or partner is also important, for love and support.
• Become knowledgeable about the disease and what to expect: Becoming well-informed about the disease is an important long-term strategy. Programs that teach families about the various stages of Alzheimer’s and about ways to deal with difficult behaviors and other caregiving challenges can certainly help. Remember, Alzheimer’s and other dementias are not the same for everyone, as I described earlier, so it’s not just what you read. You are also learning just by being there.
• Stay physically active: Doing so provides innumerable physical and emotional benefits for caregivers.
• Try to have patience with the situation and yourself: Get help specific to your situation. Consider the Alzheimer’s Association’s “Caregiver Stress Check,” Alzheimer’s Navigator, and these free e-learning workshops.
• Provide daily structure. You may need to spend more time with your parents and rebalance your own life. It may take some trial and error. What do your parents like to do? What can they still do well? Are they “sundowning,” feeling more confused or aggressive during the late afternoon and evening? Build in lots of time for what used to be quick tasks, like showers, getting dressed, and eating.
• Practice self-care: Carve out some time for daily self-care and at least a 24-hour break once a week. Sometimes it’s enough just to take 5 minutes to breathe and remind yourself about all the things you do well. Put self-care — such as exercising or meditation — on your list and treat it like any other important appointment. If you don’t know how to meditate, please click here for an excellent free e-book that will quickly explain the benefits of meditation, and quickly teach you with several different meditation techniques.
• Join a support group: Some caregivers have found that joining a support group is a critical lifeline. These support groups allow caregivers to find respite, express concerns, share experiences, get tips, and receive emotional comfort. Many organizations sponsor in-person and online support groups, including groups for people with early-stage Alzheimer’s and their families.
Researchers are continuing to look for new and better ways to support caregivers, and we will certainly keep you up to date with new findings. Hopefully some of the things listed above will help you maintain your sanity!
Will I Get Alzheimer’s If Both My Parents Have It?
You asked if Alzheimer’s is hereditary, and if you have more of a chance of getting it if both your parents have it. Heredity is certainly a risk factor for Alzheimer’s. However, a small percentage of Alzheimer’s cases are caused by heredity alone. Here are some other major risk factors for Alzheimer’s:
• Age;
• Family history;
• Traumatic brain injury;
• Cardiovascular disease;
• Smoking tobacco;
• Obesity and diabetes;
• Autoimmune disease.
From consuming more nuts and fish to taking a brisk walk each day, our recent article provides tips to help you stave off Alzheimer’s.
Next Steps in Your Situation
Your own health can suffer when you are struggling with caring for yourself, and caring for a loved one, let alone two. If you are coming to the end of your rope with caregiving, you need to get help or consider memory care or nursing home care for your parents. Do it for your family and do it for yourself.
Persons with Alzheimer’s and other forms of dementia and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If you have a loved one who is suffering from Alzheimer’s or any other type of dementia, please call us to make an appointment for an initial consultation:
Medicaid Asset Protection Attorney Fairfax: 703-691-1888
Medicaid Asset Protection Attorney Fredericksburg: 540-479-143
Medicaid Asset Protection Attorney Rockville: 301-519-8041
Medicaid Asset Protection Attorney DC: 202-587-2797
About Evan H Farr, CELA, CAP
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