Perhaps the most common question my clients ask me when dealing with a loved one with dementia is this: when is the right time to move? Ultimately, this question can only be answered by the family and is an intensely personal decision.
But let me give you some rules and guidelines that may help guide your decision. I’m going to break this presentation into three parts. First are three instances when I think a move is mandatory. Second, are the reasons I see that commonly trigger a move, and third are some general observations on the decision-making process.
When a Move is Mandatory
There are three instances when I think a move is mandatory. First is when someone with dementia is a danger to themselves or others. Examples include someone who may wander away from the house, or leave the stove on, or are an extreme fall risk.
A second mandatory reason someone needs to move is when they would be healthier in a community. This scenario is more common with individuals who aren’t married and are practicing extreme self-neglect. They may not be taking their medications properly, if at all. They may not be feeding themselves or be so isolated in front of the TV that the situation isn’t healthy.
The third reason for a mandatory move is when there are caregiver issues. Think of an 85-year-old wife who can no longer care for her 90-year-old husband because she has health issues of her own. Another example is when the caregiver is an adult child who works and can no longer afford the increasing amount of care required by the aging parent while they are at work. So, these are the three mandatory reasons someone has to move—danger to themselves, self-neglect, and caregiver issues.
Common Triggers for a Move
Incontinence
Now I’m going to discuss the common reasons I see when families move their loved ones to memory care. The first is incontinence. Everybody has their line in the sand. Most people will put up with pull-ups and messiness, but full-on incontinence, whether bladder or bowel, is often too much for loved ones.
Caregiver Sleep
The second reason relates to sleep, specifically not getting enough of it because the loved one with dementia wakes them up multiple of times a night. I see this scenario when the loved one gets up constantly through the night to go to the bathroom and is a fall risk. Or where the loved one in his confusion gets up at night and turns on all the lights and rummages around the house.
Mobility Issues
A third trigger for a family to seek memory care involves mobility issues. Sometimes the loved one is too big to help up off the floor. Other times the loved one is a huge fall risk, but because their memory is so poor, they still try and stand up like they were 20 years younger, forgetting their frailty, and consequently fall all the time.
General Overwhelm
The fourth trigger is general overwhelm. This happens when the caregiving needs for the loved one simply get to be too much. One example I see is where the anxiety a loved one experiences because of their dementia is such that they can’t let their spouse out of their sight, even for a moment. In this scenario, they insist on not being more than 6 feet away from the spouse at all times, and the spouse can’t even go to the bathroom alone. In another scenario, the loved one is constantly moving, rummaging, and creating minor mayhem unless supervised at all times. The commonality in these scenarios is the constant low-level stress simply becomes too much for the spouse or caregiver.
Caregiver Health
This leads us to the final trigger for a move, which is caregiver health. Oftentimes a spouse has old-age-related infirmities that make it impossible to perform the necessary caregiving tasks. A prime example is an 85-year-old woman whose own mobility issues make caregiving unsafe for both her and her spouse. Other times a husband may need surgery, and not be able to take care of his wife with dementia for an extended period of time, which is a natural point to make a move. I see a lot of instances where a spouse unwisely risks their own health to be a caregiver. Eventually, this often leads to a crisis.
Comments on the Decision-Making Process
Now I’ve given you rules for when a move is mandatory, and triggers that impel families to move a loved one. Next, let me give you some comments on the move.
I always advise my clients that it is better to move too early than too late. If you move after a crisis such as a hospitalization, the resident won’t be able to adapt as well as they might have before the crisis, when their cognitive abilities were stronger. Therefore by moving “too early” you may give up some perceived quality of life on the front end, but you gain quality of life on the back end.
Second, most of my clients say they wish they had moved earlier. This is true because once a new resident is settled in, the family realizes he is at least as happy as he was at home, and that their lives are significantly less stressful. Did you know the average stay in a Memory Care is only 18 months? To me, this demonstrates the fact most families wait too long to move their loved one. Also, the decision to move is never easy, so sometimes you just have to rip the band-aid off.
Third, you need to be aware of the fact a move is as much an emotional decision as a caregiving decision. And no matter when or where you move your loved one, I can tell you from personal experience that you will always have a twinge of guilt that you didn’t manage your loved one’s disease process better, smarter, longer, etc. That’s just our human nature, to want to do a great job for our loved one who has an odious disease that we can’t control.
Finally, let me emphasize a move is the family’s decision. Just because you have begun the process of exploring your Memory Care options does not mean you have any obligation to move. I always recommend people look at communities well in advance of an anticipated move, simply because it is always a powerful advantage to know your options before the crunch time caused by an inevitable crisis.
As ever, if you need help moving a loved one to assisted living, independent living, or memory care, please call me at (512) 630-7133.