When someone you love is diagnosed with dementia, your world gets turned upside down. Navigating your new life as a caregiver can be tricky, and one of the hardest decisions is whether or not to put your loved one in a dementia care facility.
First, when they’re diagnosed, let them know you’re going to see them through this. That you will stick around no matter how rough it gets. That you love them and will laugh with them and cry with them as needed. That you will do your utmost to get them the best care possible.
Do not make promises that you will never put them in a dementia care facility. If you have to renege on that promise later, there will be no end to your guilt. You may very well be in a situation where keeping your loved one at home is best for both them and for you (remember, your life counts, too). But there are also instances where keeping them safe at home just isn’t a possibility. When my husband and I moved in with my parents to help my mom take care of my dad, we were barely able to keep up. Even with three of us on shifts watching him, he was too able to get into trouble. He was young, fit, and mobile – basically the world’s most capable and destructive 4 year old – and we were afraid he was going to hurt himself or us accidentally, so we decided we needed to find a place for him to live where he would be safe.
I do not recommend visiting facilities with your loved one. It will only scare them because, let’s be honest, even the nicest places aren’t somewhere any of us want to end up. You can explore those possibilities on your own or with a friend or family member. Having someone along with you when the time comes to visit facilities helps you talk things over and crystallize your feelings about each one. And don’t wait until the last minute to start looking. There are often long wait lists to get into dementia care facilities – particularly for men. It’s better to get on a list early and turn it down if you’re not ready to place them there than to be scrambling.
Consider visiting places you liked a second time – this time, unannounced. How things are working when they’re expecting you may not be the same as when they aren’t anticipating showing things in their best light. Aim for a meal time as that seems to be a good indicator of how residents are treated. Are they sitting there not eating or being fed? Are they wandering around not eating? If they are, are the staff yelling at them to sit down, or are they using creative ways to redirect them? Does the food look edible? Is there a nutritionist on staff? My dad gained a TON of weight when he first moved in, in part because his meds made him thirsty and they’d give him juice instead of water. Because his disease affected his appestat (the part of the brain that tells you you’re full), he would eat and eat and eat, so they’d feed and feed and feed. If you put the food in front of him, he’d gobble it up. They didn’t seem to realize that just because he snarfed it down didn’t mean he was really hungry for more.
Watch how the staff interact with residents closely. Some people were made to do the job of working with the demented, others, not so much. Are there staff members sitting around reading the paper and ignoring the residents? Do the staff help each other problem solve? If a CNA is struggling to get a resident out of a chair, does someone come to his or her aid? If a staff member is unable to get a resident to do something, do they keep repeating the same thing louder and louder or say things like, “Don’t you remember – we talked about this yesterday?” There are, sadly, some people who just really don’t get it. They don’t understand the concept of redirecting or soothing. They are frustrated when the residents don’t remember that you told them the same thing 6 times already. The staff that are really great are the ones who can laugh it off that it’s the 80th time they’ve had to say something, or who try to figure out what’s agitating a resident and soothe them. The ones who can make the crankypants residents laugh with a hug are geniuses.
Depending on the way your loved one’s dementia has progressed, they may do better with smaller spaces or they may need the room to roam. Some people with dementia need to pace, so finding a space with both room to move inside and a safe place to wander outside is key. My dad’s place has a large, open common room with lounge chairs, regular chairs and tables with puzzles and activities, a dining room, and a couple TV’s, as well as a music room and a sun room. Outside, there is a fenced in yard with sidewalks. The busier residents can do laps both inside and out, which helps with their agitation. Other dementia patients may need smaller, more confined spaces to feel safe. If you’ve been living with them at all, you’ll know which seems better suited for your loved one. Having a couple different rooms for activities helps break up the day, especially for more agitated residents.
Other small details that will aid in your loved one’s comfort: large name plates or “memory boxes” by their doors are helpful in getting them to identify a room as their own. We’ve put photos and items that mean something to my dad in the memory box. It both helps him find his room, and lets other people know a little bit about him, reminding them that he was a fully functioning person once upon a time. If the facility doesn’t have that option, consider making a sign for the door to help your loved one identify their room. Another detail is multiple bathrooms near the common area. Ideally, there will be more than just a bathroom in the private or semiprivate room in case of bathroom emergencies.
Make sure the majority of residents aren’t wandering around in their pajamas. If they are, inquire about how often they’re getting bathed and changed. When we first moved my dad in, we had an issue because he wanted to shower daily and they only bathed the residents twice a week. We were able to work out a system of getting him up early to bathe each day so he was happy, but it took some convincing the staff. When they figured out how agitated he got when he couldn’t start the day with a shower, they became much more receptive to the idea.
Ask about what activities are provided. Is there a calendar of activities that gets sent to families so that you’ll know when good times to visit might be (either to avoid the activity or fill in with some entertainment between activities, or even to come participate in them with your loved one)? Is there any kind of regular music program? There have been several documentaries that have come out showing just how helpful music can be in making someone with dementia happy and more communicative. With my dad, he can barely speak anymore, but he can still sing some song lyrics with us, and I feel like he’s more alert if he’s been listening to music.
Does the facility restrain residents? I have mixed feelings about this one. Ideally, no, you don’t want residents restrained to a bed or a chair. Restraints don’t make for happy people, no matter their condition. But there are times that I wish it were an option. My dad has fallen out of bed several times and bruised himself up nicely. Bedrails are considered to be a form of restraint, and because his facility is a restraint-free facility, it means we can’t do anything other than put down some mats on the floor next to his bed in case he does fall. Similarly, other residents have taken falls because they get out of their beds or wheelchairs, not realizing they aren’t able to walk anymore. It’s one of those questions that doesn’t have a good answer. Do we keep them free and “independent” and risk them hurting themselves, or do we confine them and risk them being unhappy? You lose either way.
What are the long term care options? This is a big one. If the resident becomes harder to physically manage, will they have to be moved to another facility like a skilled nursing center? What happens if the resident becomes violent? What happens if they get injured? Will someone accompany them to the hospital should an emergency arise (appallingly, the answer is usually “no”)?
And lastly, is the facility you’re considering somewhere you will be okay visiting your loved one? If not, then it’s not the right place for them. If you hate being there, don’t put them there. Even if you’re sure you’ve picked a good place, you need to visit often and randomly. Your loved one can no longer advocate for him or herself, so you need to constantly monitor them and make sure they’re being cared for. Your job as caretaker does not end once they’re in a dementia care facility.
Make sure they’ve got clothes that fit as their weight fluctuates. (We’ve got several sizes of pants and shirts as my dad has ballooned up and now is shrinking down. For awhile he was having bathroom issues and would end up peeing or pooping into his shoes – that’s a whole other post – and often his feet were swelling and he couldn’t get in and out of the shoes he had. Our solution ended up being crocs – he can get his feet in and out without too much difficulty, there’s a strap on the back to hold them on, and you can hose them down if there’s a bathroom accident. I don’t recommend flip flops because they make the residents more prone to falling.) Make sure they’re being changed regularly if they’re in diapers. Monitor their weight and eating. If choking is an issue, make sure staff are cutting the food up or switching to thickened liquids. Make sure their skin and nails are properly cared for. Jagged fingernails lead to injuries. So does dry skin. Check for bedsores if they’re no longer mobile. Make sure your loved one’s room is clean. Make sure they’re being included in any activities that might interest them. In short, everything you’d want someone monitoring for you if you had dementia.
And most importantly, speak up and ask questions. If you feel that anything isn’t quite right, inquire about it. Go over people’s heads if necessary. You are, still, the person that loves them most and is responsible for making sure they get the care they deserve.