Your new reality.
Dealing with dementia, Alzheimer’s and cognitive impairment is wrenching. As a caregiver, you are wrestling with the loss of the person you knew and who knew you–of a relationship built on shared history. What happened to that parent or grandparent you could always count on to be deeply interested in you and your family? With early onset Alzheimer’s, the losses are even more pronounced. The roles have been dramatically upended.
Alzheimer’s, for example, is progressive. You can’t change the course of the disease, but you can change your expectations. Focusing on what your family member can do (and enjoys)—not what she can’t do—will make a difference.
Issues to Consider
Getting the facts.
Naturally, you’re overwhelmed, but now is the time to stay connected to others and to educate yourself on the disease and resources. Make sure you know what you’re facing. Learn about your parent’s disease and its typical course. If you can, anticipate issues and be ready.
What are their limitations? Are they capable of showering and feeding themselves, leaving the house, driving or doing errands? Memory issues may impair their judgment. They are more vulnerable to scammers and fraud.
Think physical safety. Is your parent all right alone, with help and/or with technology to check on them? Are there fixes you can do such as rearranging kitchen cabinets, getting rid of trip hazards (rugs or low-hanging cords), decluttering, installing motorized stairs, or converting the upstairs office into a room for live-in care?
Exploring the options.
If you need professional help, can you afford it? If not, what are the alternatives (i.e. move in with a family member, go to memory care)? Is staying home really the best for your parent, or would a place with people and activities make more sense?
Keep a list of resources so you don’t have to scramble at the last second. Not knowing where to go will limit choices.
Don’t forget your mental health.
How’s your mental state? Taking care of yourself physically and emotionally will let you be a better caregiver—and keep you healthy.
Dementia is draining for caregivers. Don’t try to do everything yourself. Appeal to each family member’s strengths and give them options. Can they arrange meals, handle Mom’s finances, visit a couple of adult day care programs, interview caregivers, explore home technology or take Dad to the doctor?
Still having fun together.
Yes, their world may be shrinking, but your family member can still have a good time—and you can still do activities together. Think about what your parent has always enjoyed—a walk on the beach, listening to music, going out to eat or being around the grandchildren.
There are creative arts programs at museums, the movies, and theatres geared to those with dementia (and their caregivers). Even when other abilities are diminished, creativity still persists. Research shows benefits from their participation in the arts include better attention, engagement and mood and the triggering of long-term memories. It can be a special way for you and your parent to connect.
More places are becoming “dementia friendly communities.” There, clerks at grocery and clothing stores, for instance, are trained to help dementia customers. Some communities have regular get-togethers around town for adults with dementia and their caregivers – something to look for in your city.