For a while, you probably noticed the warning signs. You may not have recognized that your loved one forgetting the story she just told you and telling it again and then again was an ominous red flag. Your older parent might have forgotten to pay a bill or to do the usual housekeeping chores. When you finally got your somewhat confused mom, for example, to a doctor and she underwent a full exam, some objective conclusions were reached. The doctor kindly told you the bad news: it's dementia. Her short term memory is poor and she did not do well on the measures of normal cognitive function. What are you supposed to do now?
When we see this in our work at AgingParents.com, it is not difficult to give objective advice to families who seek it. We know the red flags, and we can offer a plan for the path forward. And then it happened to us.
With my husband's and my own expertise in aging issues we had a pretty good idea that what we were seeing in his mother, Alice, was pointing in a direction we didn't want to go: down the dementia path. But her decline from her previously exemplary health was rapid and undeniable. In the space of three months, she went from doing pretty well at 95 to a near total loss of independence. The speed of the decline seemed to be triggered initially by decreased vision. She has a common condition, age-related macular degeneration, that steadily diminishes vision in many older adults. When she lost vision almost totally in one eye and the other wasn't doing well either, despite treatment, Alice was understandably depressed. Maybe the emotional aspect of feeling helpless was a factor. Perhaps it was also that her hearing got worse, even with the hearing aids and volume enhanced phone. When she asked for help at her apartment, we knew there had been a dramatic shift: this was a person who got rid of any temporary help just as fast as she could. Not his time. She declared emphatically that she needed help. That was a total about-face for her. All of this was a shock, even though aging is our field.
Help was put in place with a wonderful caregiver part time. Now we are at a point of transition to full time, and into the evening hours. Alice needs help getting dressed in the morning. She can get around with her walker and make it to the dining room in her seniors' complex but she needs help with bathing and keeping track of her medications too. Someone needs to be there morning, noon and night to ensure that she takes the meds as ordered. This will mean three caregivers, each with a different set of duties. She is okay after she gets to bed at night. For now. Coordination of all of the workers takes family involvement.
There are important lessons to be learned from this experience, worth passing on to anyone in this situation. Here are some takeaways I hope all will consider.
- When you see things like your aging parent repeating one's self again and again, forgetting basics, getting medications mixed up and needing help with bathing, dressing and such, these are your red flags. Your aging parent is losing independence. Work on integrating help into your loved one's life. Talk about it. Interview home care workers. Get a budget planned. Accept that these signs are telling you that your loved one is changing.
- Make sure someone else is managing your loved one's money. If she can't keep track of which story she just told you, she can't keep track of finances either. Get control out of the hands of a person who is no longer capable of being safe with money and be sure a competent, honest person steps into that role.
- Go over the advance healthcare directive and review what your aging parent wants at the end of life. Things can change. Do this while he can still make decisions and understand what the paper means. If an updated directive (also called a healthcare power of attorney or healthcare proxy) is needed, get it done now. He may lose capacity to change it later if he is clear about updating it now. Don't wait.
- Be prepared for the increase in costs for the caregivers. For Alice, the cost of her senior's apartment, with services is about $6,000 a month. The primary, 5 days a week caregiver added another $2,000 to the monthly expense. The other caregivers, just for specific chores, will add another $1,000 a month, bringing the total monthly expense for maintaining Alice at her apartment to $9,000 a month. That does not include any skilled nursing or care from anyone professionally licensed. And it is not 24/7 care.
Over 5.5 million people in the U.S. are diagnosed with Alzheimer's disease or a related dementia. For those 85 and up, the odds are about one in three of developing the disease. Alice made it rather far, reaching 95 before we saw the unmistakable signs. Now that we know she is on this course we are her advocates for safety and comfort. If a question of dementia arises in your family, a great resource for you is the Alzheimer's Association, or you can find free articles, videos and checklists at AgingParents.com.
