When is it Time for Assisted Living or Memory Care?

Making the Decision Most Caregivers Dread a Little Easier (I Hope)

Photo by In the Now Mag on Unsplash

My mother talks about living in an assisted living facility as if it’s a done deal. She seems to believe that it will become necessary for her to be there some day. I honestly don’t know.

The funny thing about it is that she never, and mean never wanted to put Dad in a facility. Her plan was for him to live out his days here, at home. She still fantasizes about an alternate ending to Dad’s life where we brought him home to die instead of leaving him in memory care.

I try to remind her how difficult his care had become. He was 100% in depends, had a permanent catheter, could barely walk after three weeks in the hospital, and had cognitively declined by leaps and bounds in the last five or six weeks of his life.

So, I fail to understand why it’s okay for her to go to assisted living, but it wasn’t okay for him.

I thought today might be a good day to talk about how to know if and when it’s time for your loved one to move from your care to that of experienced caregivers at an assisted living or memory care facility.

Sign #1: The Home Environment is No Longer Safe

We have a neighbor a couple of doors down whose mother lives about an hour or so away. The mother is in her late 80’s I believe, and her husband (not the father of my neighbor) is well into his nineties.

My neighbor and his brother got access to her MyChart account so they could keep track of how many times she was being admitted to the hospital. She had been falling more often and her husband was not always letting them know. In fact, he often didn’t.

The two sons went to her home and moved things around in an attempt to make it safer for her. Additionally, they began bringing meals up for the husband to prepare, as it seemed he wasn’t feeding her, or himself, very well either.

They also reached out to the husband’s son and asked him to intervene, which he tried to do.

After a particularly bad fall, she was placed in a skilled nursing facility for rehabilitation, and then into assisted living.

Unfortunately, the husband, who seems to have some dementia of his own, took her home. The sons, unable to do much, are frustrated and constantly worried about their mother.

If ever there was an example of an unsafe environment, this is it. Partly because of the way the home is kept and laid out, but also because she essentially has no caregiver. The husband thinks he’s caring for her, but he isn’t, and he gets very ugly with people when they try to point it out.

Other examples of an unsafe environment may include homes with lots of steps to navigate, uneven or very slippery floors, and so on.

Safety concerns also arise if your loved one is prone to wandering, and that wandering extends beyond your front door. Our little town has ankle bracelets for people who need them, like my brother’s stepson who has autism, or elderly people with dementia.

Another safety problem is a loved one who insists on trying to use the appliances. Not remembering that you can’t put metal into a microwave, or setting an unusually long time to cook something can both cause problems, as can leaving an oven or stovetop on when not in use.

I also realized this one on the night I had to call the police to take Dad to the ER - kitchen knives and even scissors can be very dangerous. If Dad had remembered that either were in the kitchen, we would have had a catheter disaster because he was looking for both.

Sign #2: A Medical Professional Tells You So

I have heard horror stories about people admitting their loved ones into the hospital for one reason or another, hoping that the hospitalization will lead to a facility placement, only to be told they could take their loved one back home.

The night we had Dad taken to the hospital, I was ready for this battle. I had even looked it up, and in Ohio, you can refuse to take someone home from the hospital if you believe you cannot care for them properly. I knew I had a legal leg to stand on and I planed to stand on that baby if I needed to.

But, fortunately, the doctor told me that Dad wasn’t going home. She said he was a danger to himself and to Mom and me as well. I wasn’t about to argue, in fact, I believe that I even thanked her in my sleep-deprived stupor.

If a medical professional tells you it’s time, then it’s time. They are aware of more of what can go wrong when your loved one’s dementia continues to decline. You may think you know your loved one very well, and you probably do, but you don’t know the disease as well as the doctor does.

At first, with Dad, we were told that he would need to go to a rehabilitation facility for a few weeks because he had been in bed for two weeks. My brother and I visited a few and had our choice all picked out, then everything went to hell in a hand basket.

Dad became violent again and they had to add Seroquil to his medication regimen. The hospital psychiatrist, who was awesome, informed me a few days later that she was only willing to release Dad to a locked-down memory care unit.

That changed everything as many facilities consider Seroquil to be a ‘chemical restraint’, however, I’d been talking to one facility and they didn’t care if he was on it.

We went through the gyrations and he was accepted a few days later. Even though he was only there for twelve days, I still believe it was the best thing for him. Mom disagrees and wishes we’d brought him home. She remembers the good and has forgotten the bad.

Sign #3: A Continuous Stream of Health Issues

As dementia progresses, different systems of the body may be impacted, and there may come a point at which the care required goes beyond your abilities and means.

Some issues just happen as the body and brain decline, making it time to make a decision.

Weight loss is common as dementia progresses. Some of the physical and mental changes that occur as the disease progresses may lead to a loss of appetite. Sometimes, it’s as simple as a medication and a change might be possible, but often, it’s the progression of the disease.

Another red flag is decreased mobility. For some caregivers, this might not be an issue. It totally depends on several factors, but the most important is whether the caregiver can manage this decreased mobility.

I can’t see my mother being able to lift my father into a wheelchair or get him off the floor. She simply doesn’t have the strength, and quite frankly, I’m not sure I would have either.

Mom and I are about the same size and weigh roughly the same. I have a little more confidence in my ability to help her up off of the floor, but I know for a fact that it’s very difficult for me to push her in a wheel chair.

She bought one a few years ago when she had foot surgery. It was, after all, craft show season and she wasn’t about to miss out. Not only could I barely push her, but I almost dumped her out of the thing when we came upon a poorly built sidewalk ramp that had a big hole at the bottom of it.

If her mobility became an issue, at the least, we’d need help getting her around.

Sign #4: Significant Behavioral Changes

There is a house across the street that we jokingly called the dementia house for a while because two consecutive owners developed dementia while living there. The first gentleman’s story isn’t one I recall, but the second story, I do recall.

This man had been a fairly nice person, until he wasn’t. I wasn’t living here at that time, so I didn’t see him every day, but whenever I did stop by, he was standing in their garage lifting weights.

I was told he had dementia, and this seemed to be an activity he enjoyed, so that’s what he did.

Then, Mom told me that he had been hospitalized and was being moved to memory care - in Cincinnati. I don’t know if you’re familiar with Ohio geography, but you can draw a wavy line from Cleveland through Columbus to Cincinnati, and there’s roughly two to two-and-a-half hours between each, depending on where you start and end up.

It turns out that his wife had gone out shopping one day, as wives are prone to doing. When she got home, he didn’t recognize her and he pushed her down their stairs. The home is a ranch-style home with an open staircase to the basement very near the garage entrance.

She was seriously injured and thankfully recovered. Of course, he was scared, as you would expect, when a stranger entered his home, but she couldn’t continue living like that. Eventually, he would accidentally cause her even more harm.

Cincinnati was where their son lived, so she moved him into a memory care facility there and moved to Florida. Don’t ask. I don’t know why.

People with dementia can develop undesirable behaviors that you cannot control, even with medication. Dad was on such high doses of antipsychotics when he died, that it was really mind-blowing. He’d been the gentlest of souls…until he wasn’t.

Sign #5: When Your Health is Suffering

My grandfather didn’t have dementia, but he had a host of medical problems. He was a truck driver for his entire life, as was his wife. That’s how they met. I should back up and say she was like his fifth or sixth wife, but that’s beside the point.

After he retired from long-haul trucking, he worked for his brother’s trucking business hauling fuel oil to local farmers. On one such delivery, the driveway gave way under his truck. It was that point when you pull into a drive that has a ditch to either side and usually some sort of metal pipe holding up a few inches or so of gravel. Yeah, that gave way.

The result for him was probably a dozen years of health issues, many weeks in the hospital, and a tremendous strain on his wife. She was a dear, sweet woman, and she wanted so badly to take care of him, but she had a stroke and other health issues. Grandpa D never went into assisted living, but he should have. She nearly killed herself taking care of him.

When she was out of commission, someone else stepped in to help, but clearly, the burden was too much for her. She lived maybe ten years after his passing and we visited her a few times after.

As caregivers, we cannot ignore our own health. It’s even more important as we take on that caregiver role, and yet, I’m guilty of not doing my best at it myself.

I need new knees - both of them. My left knee has a partial replacement that is nearly fifteen years old. They have a ten to twelve year life span. And not getting it replaced yet has limited how much walking I can do. The right knee isn’t as bad. However, I don’t see a time in the foreseeable future when I can get it done.

Mom has her pacemaker battery replacement next week, a dental procedure that will require two appointments, and then the eye surgery that didn’t happen a few weeks ago still needs to be done.

I also have limits on how far into winter I’ll go for knee surgery. I had a meniscus repair done once in October and then, three months later, slipped on ice and tore it again. If I can get her eyes done and get her somewhat back on her feet, I can maybe get my left knee done in October or maybe November. In Ohio, we don’t generally have ice yet until December/January.

I get that there are challenges to taking care of yourself. I really do. As I look to these knees, I realize that Mom isn’t driving any longer - she surrendered her driver’s license just this month at renewal. She also can’t take Charli for the longer walks she needs in the morning to get all of her business taken care of. Surgery for me means enlisting the help of multiple people…I can hardly wait.

And yet, if I don’t take care of my knees, I’m going to have increasing difficulty walking. I’d also rather get them done while Mom’s brain health is as good as it is. One less thing to worry about.

Before I let go of this topic, your mental health is also of great importance. As your loved one’s dementia declines, your mental health may decline too. It’s part of grieving.

When you get into trouble is when you’re exhausted and feeling so overwhelmed that you can’t even think of what you should be doing for either of you. In this state, you are not an effective caregiver.

Sign #6: Twenty-Four Hour Care is Required

What I mean by this is that for some people with dementia, there is no down-time. Dad was this way for the last five or so days he was home.

I’ve talked before about what I call Ring Camera PTSD. I had a camera in their bedroom because Dad was falling out of bed and we wanted to see how it was happening.

As it turned out, he slept in a sort of fetal position with his bum hanging off the bed, so when he would roll over, he’d fall out. The funny/strange thing about it is that after he fell and cracked his head open on a night stand, I took him to the doctor and they ordered tests. He had a CT scan and an MRI.

He never fell out of bed again. Nobody did anything other than tests, but that was the end of it.

Anyway, during those last five days at home, he couldn’t sleep. At first, it was because he felt the need to urinate, but he couldn’t go. That’s what led to the catheter.

The following nights it was because he didn’t understand what his catheter was for and he kept getting up. He was not sleeping at night for more than fifteen minutes at a stretch.

Mom was beyond exhausted, as was I. If I didn’t get up when I heard him, I heard her down there yelling at him. I know she was just exhausted and frustrated, but she wasn’t helping. Her lack of patience is a big reason why she asked me to move in.

We would get him into bed and he’d be right back out very shortly after.

The last night he was home, it just became too much, with the hallucinations, delusions, and constant activity.

And yet, some people live with that every night. I don’t know how. If your loved one is someone who isn’t sleeping, they need care where caregivers are taking shifts and everyone is fresh at 3:00 a.m. You simply cannot keep going on no sleep.

Alternatives to Memory Care or Assisted Living

If you truly do not want to put your loved one in memory care or assisted living, you must then make a decision to bring in professional help. There are tons of services out there that do just that.

The challenge becomes finding someone who fits your situation and can help you. Not every caregiver is a proper fit, so don’t be afraid to try a few different people if it seems like things aren’t working out.

We had neighbors down the street, a couple - both now gone. The wife had experienced a terrible run of health, getting long-term COVID, breaking a hip and a wrist, and other problems. Eventually, she was moved to a care facility. Her husband, meanwhile, developed dementia that progressed rapidly, or else he hid it well.

I saw him all the time because they had a little wiener dog, Patches, who was the cutest thing ever, topping off at probably fifteen pounds with about 100 pounds of attitude. As the neighborhood story goes, he fell one evening near his recliner and couldn’t get up. A trusted neighbor who had spoken with his children said that he sat there for a day or so before his son came for a visit and found him.

After hospitalization, he came back home, but he had full-time in home care until his passing some months later.

Our neighbor directly to the north has someone who comes in for about five or so hours a day. She’s a lovely young woman who does some cleaning and waters her flowers. I don’t know what else she does. This neighbor has permanent oxygen and serious back issues. She also has the local grocery store deliver. I don’t know if they’re bringing prepared meals or groceries - they do both.

She’s trying to stay at home as long as she can, and I’m glad she found someone who helps her.

I believe both neighbors had private caregivers through services. I never saw any sort of branding to their vehicles so I can’t be sure. It’s worth evaluating the cost of having someone come in versus memory care or assisted living.

It’s also possible that you just need someone at night so you can sleep. Of course, you’ll need a separate bedroom for yourself so you can sleep, but that’s an option too. My plan with Mom is to have someone come in and help, should the need arise.

Wrapping Up

In some ways, COVID helped us develop a world in which it’s easier to take care of our loved ones. We have grocery delivery services, video calls with medical professionals, and a host of resources like support groups at our fingertips.

But nothing beats good care, and there may come a point at which you cannot provide the care your loved one needs.

It’s nothing to be ashamed of or embarrassed about. It’s the progression of the disease pitted against what any normal human being can withstand, physically and emotionally.

Is it easy to move your loved one into a care facility or assisted living? Heck no, but at some point, we must all realize that the care required goes beyond our own abilities. At that point, you aren’t doing your loved one any good by sitting in denial.

Right now, Mom seems amenable to the idea of assisted living, but as she declines, I wonder if that will change.

I know already that she’s going to be meaner than Dad was. I’ve seen it. Mean, I can handle, especially if I understand that it’s the disease talking. What I won’t tolerate, again, is violence.

This is not an easy decision. If you have supportive family, talk it over with them and see what they think. You can also discuss it with your loved one’s PCP to see what they think.

And finally, a social worker can be a great resource because they don’t have any emotions in the situation. They aren’t emotionally attached to your loved one and can see the situation without bias.

I hope you don’t need to make this decision. I hope I don’t need to make this decision, and I especially hope my kids don’t need to, but it’s out there and it could happen. I hope these guidelines help you make a more informed decision!