Her mind is a jumble of thoughts that misfire and get hung up midway. She’ll start a task and forget what she was doing somewhere in the process. The other day I came in and she had all the ingredients spread out on the counter, she just didn’t have any idea how to put them together. She wanted to make a sandwich for her husband of 67 years. She’s probably made a thousand over the course of their marriage, this day the how-to’s of assembly escaped her.
She’s highly sensitive, aware of changes in the moods of those around her. Her feelings are easily hurt and she isn’t shy about expressing herself. I visit with her several times a week including one evening when the goal is to get her fed and dressed for bed. Getting dressed is a long process. It’s a series of repetitive steps that have to be done in a certain order. She can usually stay on task but there have been exceptions.
One day last week she insisted that she had to take her pants off over her sneakers. I had to explain why that would not work, she remained stubborn about it. Then it clicked for me, she must have been afraid of something. Fear is usually the root cause of her resistance. Earlier that week, her husband commented that he couldn’t tie her shoes any more, he was physically not able to do it. This is why she wanted to take her pants off over her sneakers, she was afraid of being shoe-less. Once I explained that I would put her sneakers back on, she complied.
She has dementia, a moderate case. The thing about dementia is that it only gets worse, never better. Sure there are days when she is more lucid but her baseline status will only descend from here. Any major change such as the death of her husband or a move at this stage will hasten the spiral and she’s one of the lucky ones.
Her family is engaged and loving. She sees a relative at least five times a week and speaks with them a minimum of three times a day for medication reminders. Companions like me visit her each weekday. She has a small army of compassionate caregivers and she still lives with her husband. There are millions of people facing this condition without these benefits, what will happen to them?
It’s estimated that 9 million Americans are living with some form of dementia. They don’t all have the financial and familial resources to remain safe and comfortable. Families are stretched thin trying to triage caregiving while managing their own lives including; children, careers, personal illnesses and a home.
This situation will overwhelm our healthcare system within the next decade and beyond. Dementia, including Alzheimer’s, effects one in nine people after age 65 and that rate increases with age. People 85 and older have somewhere between a 30 – 50% chance of acquiring some form of dementia. This condition is impacting more people as life expectancy increases.
What can you do to prepare for this? I suggest having direct conversations with aging loved ones while they are well. Discuss specifics of financial resources, care preferences and have an Advanced Medical Directive and a Will. All adults should have these preferences documented.
If someone has been diagnosed, you may want to tour some facilities that specialize or have a wing dedicated to memory care. If you have a male loved that will need these services, get them on a waiting list as soon as it is reasonable. Many facilities have beds that are assigned male or female. Since women tend to outlive men, they have historically had more beds available to them. It can take years for a male patient to get into his desired facility due to a lack of available beds.
Many people opt to care for loved ones at home due to financial, emotional or other reasons. It’s wonderful if you can find a caregiver within the family. At some point that person will need assistance as well. AARP has put together a thoughtful list of resources for caregivers.
To all the caregivers reading this, you are not alone. Please take a moment for yourself to find support. When you need help, ask for it from those that can assist. That may be an individual, an agency or a non-profit organization. When you don’t need help, prepare for when you do, your work is so important. Self-care is not indulgent, it is a necessity.
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