Caregiving 101: Part Five: Living Situations

When I took over as primary caregiver for my dad, my immediate concern was moving him. He lived alone in an apartment, almost an hour away from me, and he wasn’t safe where he was. At the time, I knew nothing about what help or places were available to people in his situation. My first step was taking him to a neurology appointment and, after listening to my concerns, the doctor agreed that he shouldn’t be living by himself. Other than that, she had no help to give. But it was enough to convince my dad, kicking and screaming, that a move needed to happen.

I reached out to his social worker for help and was quickly overwhelmed with the information I was sent and how useless it all seemed. There was both too much to look through and understand and too little help on how to do so. How would my dad function in an assisted living facility as opposed to an adult family home? How would the finances work? What was going to be done with the lifetime’s worth of stuff he’d accumulated? What about his current lease and bills? It was all the hassle of moving with many other unknowns thrown into the mix.

I want to talk about this specific topic because I think it’s one of the biggest universal decisions that you will make as a caregiver and involves a colossal amount of stress. Ultimately, it does come down to what’s best for you and for your family and your charge, but that never makes it easier.

There was never a question of me living with my dad and taking care of him myself. I was renting a tiny room and his apartment was small and far away. I wouldn’t have known what to do anyway. I felt woefully ill-equipped and ill-informed for any caregiving, let alone twenty-four-hour care. A lot of guilt came from that. If you’re close to your charge, you might feel like sending them to a facility of any kind might communicate that you’re abandoning them or that you don’t care. This is just not true, so don’t allow yourself to believe it for even a moment. You’ve got to make the decision about what is going to be best for everyone and it will look different for you than it did for me.

It can vary even within the same family. My grandmother was ninety-five when my grandfather passed away. She didn’t want to leave her home, so for two years, my mother, siblings, and I took turns staying the night at her house, and she spent the weekends at my mother’s house. That wasn’t sustainable forever. After two years, my mom moved in with my grandma to take care of her. Without a doubt it was the right choice, but it didn’t remain that way. It got too hard on both of them, especially with my mother working full-time.

A few years later, she hired in-house help during the day, to cook and clean while she was gone. But soon, even that wasn’t enough. The toil and strain on my mom was too much. In January of 2015 (the same month my dad was diagnosed) we moved my grandma into her adult family home where she lived until her death in 2021. She didn’t want to move, but eventually she adjusted. The home suited her needs with more one-on-one care, built in friends, and a cozier feel.

The decision you make isn’t set in stone. You can change things as needed and as you can bear it. Some of you might have the perfect living situation and/or skills and personality and energy required to be able to take care of someone at home until they pass away. But that’s not true for everyone and there’s no shame in that. You’re always making the best decision at a particular time, and, if it’s not working out, you can change it.

I eventually came to the decision that an assisted living facility was the best place for my dad. He needed someplace that would do all the cooking for him and make sure he took his medication. I also didn’t want him driving anymore considering how much he got lost. At the time, he was still capable of taking care of his own hygiene and getting around. My other hope was that in living with a community he might be able to be more social and make friends. These are the types of things I urge you to consider when making your decision. What are your highest priorities and what place will best suit those needs? It will never be a perfect fit, but you’re looking for the best possible option.

Getting him there was a bit of a nightmare. He didn’t want to go. He thought I was sticking him in jail and he didn’t want to get rid of any of his things. It was a really hard, emotional decision for him. While I appreciated that, I was stuck in the position of being the ‘bad parent’ to my own father, and making the decision that was best for him. Because of that, I know you will struggle with actually making the change. It’s very hard to put into action a plan you agonize over. I think it was almost fortunate that due to finances and breaking his current lease, I had very limited time in which to make the decision. It all happened within the space of a few months. It was good for both of us because it forced us to make decisions and transition sooner than we would have thought we were ready for.

Despite the help I had, I wouldn’t wish the four days it took to move him and get all his stuff taken care of on anyone. If you can afford it, I highly suggest hiring movers. And, if you can, get your charge settled in their new place first, and then go back and finish taking care of the old place. Once my dad got to his new apartment, I think he settled in fairly quickly. Part of the reason was that, as his memory failed, he lived in the present. Remembering never happened correctly and his brain pieced together fragments to help him deal with his reality. Soon, for him, he’d always lived there, and it was his normal.

Of course, that didn’t mean he wanted change. We moved him in October of 2015 and in August of 2017 we needed to move him again. At this point in his disease, he was still physically very mobile, but doing his own laundry, or remembering to shower or shave, was almost impossible. I got a call from the facility telling me they were worried because he loved to go outside and wave to the cars on the street and he’d almost been hit several times. He was now a danger to himself and others.

Our answer was to move him into the full memory-care portion of the facility, which meant he would not be able to leave unless he was with someone. The doors were locked and there was a code to get in and out. It was much smaller and there were dedicated nurses and caregivers who not only provided meals and medication, but helped with showers and toileting as necessary. This move was for his safety and less difficult logistically, but still involved the same level of anxiety regarding the decision, how it would affect him, the finances, and so many other things.

This move also cemented that he was getting worse in every way. There was so much less stimulation available in the memory-care unit, and I considered whether it would be best to try an adult family home option so he would have more personalized care. Ultimately, I decided against it because he was still too physically mobile and would be considered a flight risk. Also, this way he could stay in the same building and I hoped it would be familiar to him.

He was there less than a year before his behavior became so erratic that they wanted me to send him to a psychiatric hospital so they could do med changes on site, trying to find the right dose to help him feel safe and calm. That was another decision I truly wrestled with, especially because the idea of medicating him has always felt controversial. I’m not against medication, but I didn’t want to drug him into submission. I wanted him to be able to feel like himself as long as possible. After many conversations with the facility and others, I agreed to do it. And it was another headache and complicated logistical situation, but we moved him. He was there less than two months before they told me that he was so far gone they wanted to move him back to his home and start hospice. That decision was actually less painful for me because I could see myself that it was the right call. He was in hospice from Thursday afternoon and died on Saturday night.

There will be multiple stages, not just in your charge’s progression, but in what’s right for them and what’s needed for you during them. The main thing I want to impart to you is that though you will feel guilt for those decisions, especially when it’s to have them live somewhere else, please don’t let that guilt define you. I’ve said it before, but even those trained at facilities don’t know what they’re getting into. The amount of staff turnover I’ve seen for both my dad and my grandma is staggering. Caregiving is one of the hardest professions in the world, so even though we’d like to think that our relationship and love is enough, it isn’t. People need professional care for serious illnesses/injuries. If you can provide that in your home, I’m glad for you. But there was no way that I could do that. There were a lot of things my dad and others said to me, especially during that first move, that made me feel awful. But it came down to me needing to discern what was best for us, even if I didn’t know what the outcome would be.

Sometimes I think about the decision to move him to the psychiatric hospital and I wonder if moving him there was what killed him. I could very well wallow in that question of what if, but I choose not to. We’re not talking about death or grief at the moment, but I felt true peace knowing that his dying sooner was actually better for him. Even though that would never have been my intention, in a backwards way, I actually hope I did ease his suffering by my decision.

I don’t know what will be right for you and your charge, but I pray you won’t be too overwhelmed by the options and by the decisions that rest on your shoulders. Don’t let your expectations of what should happen—what society or culture or even well-meaning family members think—dictate the truth you know for the two of you and any other involved family. There is no guilt in your decision, there is only the present information you have, just like in every decision you’ll ever make. None of us knows the future. We can only do our best in the present, and be flexible to change if necessary. 

Lastly, and most importantly, pray. God is the ultimate decider of our futures and the only one who knows what is going to happen and can best provide a path toward it. You can seek the advice of others, especially those who have been through it before, but make sure you set aside time to pray and ask for guidance. Let God direct you and He will provide the peace regarding your decisions and their outcomes. If you’ve surrendered your life to Him, this is the only way to make any kind of choice. He is bigger than our mistakes and our misjudgments and the best way to avoid those is to develop the ability to hear His Spirit. Let Him be the peacemaker for you in this stressful situation.