Need help caring for my father with Alzheimer's
Answered by David Troxel
My dad is 70 and has a rare form of Alzheimer’s. He has been bedridden for the past 5 years. My Mom works full time and looks after him. She is up at 3:30 changes dad and leaves for work by 4:30. She works all day and gets home by 4:30–5:00. She cleans the house, feeds my dad, and looks after any personal needs my dad has.
She checks in on her 90 year old mother and runs any errands she needs done. She gets ready for the next day, gets my dad taken care of before bed, and gets to bed by 10:30–11:00. She is usually up at least 3 times a night with Dad, then it starts all over again.
We help as much as we can with Dad, the house, and emotional support. Mom is 67 and can’t afford to retire because of the situation with Dad. Going into a home is not an option.
I am scared that Mom is going to kill herself looking after dad but trying to find any government funding has been a frustrating and a fruitless endeavor.
Any resources that you could point us to would be greatly appreciated. Thank you.
My late mentor and friend Dr. William Markesbery of the University of Kentucky Alzheimer’s Center got it right when he said that caregivers (like your mother) are today’s modern saints. It is amazing that your mother does all that she does.
I share your concerns that your mother’s actions (and potential lack of sleep) could damage her health and well-being. A few thoughts:
Have you been able to, as a family, engage your mother in a discussion of the situation and to share your concerns? Sometimes caregivers like your mother are so caught up in their role that they shut the door to options. A hard, but important question to ask is this: “Mom, what would happen to dad if something happened to you?” Sometimes this discussion can lead to a Plan B, one involving getting more help.
I would contact the local Alzheimer’s Association for advice about local resources—try to get your mom to a support group and if she can’t attend, go yourself. Consider checking with an elder law attorney or private geriatric care manager to see if there are some benefits that might work for your situation.
You mention your dad is bed ridden. Has he been able to get to a doctor? What is his overall quality of life like? You may want to consult Hospice for an evaluation.
Finally you say that placement in a “home” is not an option. Why not? Even if promises have been made your father might be do well in a nursing home that can provide him with good care and some socialization. Ask yourself, what would Dad have wanted? Would he have wanted your mom to sacrifice her own health and wellbeing or would he have wanted her to get some help (or consider a placement).
I know sometimes adult children don’t have a lot say—perhaps your mother won’t make a change, even one that seems needed. In this case, do your best to give unconditional love and support to your mom—lots of hugs, a trip to the local ice-cream parlor, a massage or other small gestures will let her know that she is very much appreciated.
There will likely come a time when she is more open to help.