As a caregiver, managing and adjusting to the changes that occur for a person with dementia, such as Alzheimer’s, can sometimes feel like a full-time job. Just when you think you’ve learned to accommodate one change, another change pops up.
And, in a person with dementia, change is inevitable. The type and speed of the changes vary from person to person, but the progression of the disease will result at some point in a person’s loss of ability to perform many tasks or physical activities they previously were able to perform.
For Deena, the change in her ability to walk independently and the increasing risk of falling caused a significant shift in our day-to-day lives. Simple activities, a trip to the grocery store, a walk to the mailbox, became fraught with tension as I was constantly trying to prevent the next fall.
The decision to finally sell our motorhome, which had been a source of such happiness and relaxation, really was driven by Deena’s instability on her feet. I was terrified that she would fall either going into or coming out of the RV. And since falls, even simple falls, can have a catastrophic outcome, I knew that our camping adventures had come to an end.
The decision was hard for both of us, although truthfully by that point I’m not sure how much Deena really understood. But she could tell that a major chapter in our life was closing and tried to push back. It was a difficult, though right decision, that I knew I had to make with or without Deena’s agreement.
Overtime, I’ve come to understand that there are some changes in day-to-day activities that commonly occur for a person with dementia can be extremely difficult to accept. These changes can represent a significant loss of independence and people are often loath to accept to them.
Consequently, it may fall to the caregiver to manage these changes so that the person with dementia and others around them stay safe and secure. It’s not easy to hold the line when someone wants to do something that they can’t safely do anymore. I know the temptation to cave into their demands rather than have another battle. But when the person with dementia isn’t able to make good, rational decisions then someone else has to. And that someone is often the caregiver.
Like all of the life-style changes that come with dementia’s progression, the person with dementia perceives the change as a loss, while the caregiver may perceive the change as an additional burden that they have to bear.
And while both perceptions may be equally true, neither perception can be the reason to ignore the reality of the change. When the person with dementia is no longer capable of understanding the increasing risk to themselves or others to continue a specific activity, driving, managing finances, managing medication, someone else must step in.
So, as the caregiver, ask yourself these questions:
• What are the potential outcomes if the activity in question is allowed to continue?
• Is the potential for a serious outcome high enough to tackle the issue?
• How will you feel if you ignore the problem to avoid a confrontation and the worst-case scenario occurs?
If you don’t know the answers to these, and other questions, seek input from family, friends, professionals. Make sure you’ve thought through the problem before beginning any intervention to avoid surprises. Engage others to support you and the person with dementia, as you acknowledge the tremendous loss that the change represents.
Sometimes life requires that you step up and do the tough stuff, make the hard decisions that may create conflict. As I sometimes say, “You have to love them enough to make them mad” if the decision is in everyone’s best long-term interest.