When do you say "this is bigger than we can handle" while caring for someone with dementia?

1 answer | Last updated: Sep 29, 2016
Karmarcas asked...

I'm new - just joined yesterday - but so glad I found you. My Step-father (82) has dementia and my Mother (75) is primary caregiver. We are all nearby and visit and help almost daily. After reading about usual symptomology in dementia, I learned per your articles that his condition is further along than his PCP, who says, "oh he's fine". Mom has been telling us lately, that he's not fine. And after spending a week with them, he's not fine. We moved them closer so that we can keep an even closer eye on things. Today I rec'd a call from my brother that Pappy has been laying on the floor at the new house for over 6 hours. Mom is too tiny to get him up and family is on the way over now to help. Between the shouting, inappropriate behavior, refusing to eat and bathe, when do you say "this is bigger than we can handle"? I am currently reaching out to the office of senior services in their area, to get assistance for bathing and respite care. But I think that my Mother is about to break. I appreciate any guidance you can give.

Expert Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

Caring for a loved one with dementia is overwhelming for anybody who tries to do it all by themselves. There's no doubt that your mother needs help. Aside from everything else, tell her she must to call 911 next time your stepfather suffers a fall. The EMTs will check him for injuries and if he appears to be unharmed, they will simply help him up off the floor.

Many people believe that dementia is part of "normal aging." Whereas some forgetfulness is normal as we get older, Alzheimer's and related dementia are not part of "normal aging." It's particularly disturbing that your stepfather's symptoms were minimized or ignored by his doctor. He should have been given a thorough physical to eliminate reversible conditions that mimic dementia, among them vitamin deficiencies, low-grade infections, drug interactions, and dehydration, all of which can be very subtle and can occur even with the best of care.

Your stepfather's behavior certainly indicates that he is well advanced in his dementia, possibly of the Alzheimer's type, and ought to be seen by a specialist, such as a geriatrician, psychiatrist, or neurologist for a proper evaluation and medical protocol, if indicated.

Presently your mother is at risk. Your stepfather won't mean to hurt your mother, but his dementia/Alzheimer's has robbed him of reason and he may strike out at her any time. Because of the disparity in their sizes I would be very concerned about her physical safety.

All indications are that it's time for your stepfather to move to a facility that specializes in Alzheimer's care. Many families are resistant to the idea of placing a loved one in a care facility; people still think of horror stories of elder abuse and neglect. Fortunately things have improved greatly and these occurrences are indeed rare nowadays. It's not unusual for people to improve once they've settled into a special care home. Your mother may reject the thought of giving up her role as caregiver, but it's time for your stepfather to live in a place where staff and caregivers are trained in Alzheimer's care. This will allow your mother to let someone else deal with the bathing, eating, and behavior issues. She can still visit as much as she wants, but she will be able to resume a normal life of her own. Remind her that the happier she is, the better she can be there for both of them.

You've already contacted the local senior services. They may be a good source for information on long-term care. You can also contact the Ombudsman's office at your state's agency on aging for lists of facilities in your area and ask their advice. They probably cannot give you outright recommendations, but they should be willing to sit down with your mother to give her tips on what to look for in her search. The health department should make available to you their surveys of facilities.

More immediately, suggest to your mother that she joins a support group. The local Alzheimer's Association's can provide her with a list (you should be able to access this information online as well: www.alz.org.) The association has a 24/7 helpline: 800-272-3900.

Best of luck to all of you.