This as-told-to essay is based on a conversation with Wendy Rowland, 53, who lives in Mississippi. Rowland, who was a stay-at-home mom, returned to work in her 50s to help pay for her husband’s long-term care, as he suffers from early-onset dementia. This interview has been edited for length and clarity.
My husband has early-onset Lewy body dementia. He is 59 and has been in a memory care facility for over two years now. We have already used his 401(k), and I sold the house we had for over 20 years. Once the money from that is gone, I’m not sure what will happen.
We met at the same printing company in Memphis. My husband had been printing since he was 18. We had a strong suspicion that his job may have had something to do with his condition because of all the chemicals. He worked in brand labels. I worked until our first son was born. I had another son from a previous relationship.
We started to notice things that were going on in his early 50s. He would try to do things he had done a million times over the course of his life, and they would come out a little backward. The rest of the family would say, “Oh, that’s just him.” I would reply, “No, it’s not really.”
We noticed this most clearly when he was driving. He would make turns in front of others, and the accidents started happening. He would also fix a water line incorrectly. All of his wires were getting crossed.
There were vacations we would go on a little before his diagnosis, when he would wander off or get agitated because he thought he had left something somewhere. He was let go from his job, and that’s when we went for his official diagnosis.
His mother was diagnosed around the same time as him. He had two kids, a wife of 20-something years, the house in the country that he always wanted, and the boat he always wanted. He did everything that he was supposed to do, and then life happened.
His specific dementia is not as planned out as Alzheimer’s. There aren’t specific stages. You can see him one day, and he’s one person, and you meet him later in the day, and he’s another. With Lewy body dementia, they don’t necessarily forget who someone is, and if you talk to him enough about someone, he can answer things about them.
His physical health has gone down for a while. He was in hospice and was losing weight. They took him out of hospice, and he’s a little more stable than he was. We believe his condition might be progressing more now, but there isn’t a way to actually know what stage he’s at. Things can change from one minute to another.
Right before all of this, we pretty much decided to separate, and the paperwork had already been filled out. It was in his best interest that I stay and make sure he was taken care of. I wasn’t going to leave that to our son or his sister, who was already dealing with their mother.
I had put cameras in the house to make sure he wasn’t wandering out. Still, he had hallucinations that made it hard for me to leave him. I would come home some days, and my furniture would be outside. There were knives and a pivot cutter on the table one night when I got home, and at that point, when it became dangerous, that’s when I started searching for a new research facility and got a neurologist involved.
I pay $6,750 a month for his facility. We got him in when there was a price lock, so we know that won’t go up for us. I pay for his medicine and doctors visits, essentially whatever Medicare doesn’t cover. I bring toiletries and pay for his visits to have his nails cut, which cost $60. He does get disability, but that doesn’t even cover half of his facility, as he gets $2,700 a month after Medicare gets taken out.
There hasn’t been a whole lot of information out there unless you go to an elder law attorney. I’ve navigated this mostly on my own. It’s more than a lot of people can take, and it was almost more than I could take. It was a really dark time when everything first started, but I knew I had to keep it together at least a little to take care of everything.
I had to go back to work, which was fine, but I hadn’t worked in 20-something years because I was taking care of the kids and the house. A friend knew of an opening and got me an interview, which I was grateful for because it would’ve been very difficult for me to find something where I would make enough to keep the house as long as I did. You don’t think about these things when you’re taking care of your family because that’s what you’re supposed to be doing.
As his condition progressed, we had to sell our house. We had it built back in 2004, and the area we were in had grown a lot, so I was able to make a substantial amount off the house. I was able to put a nice chunk down on a new townhouse in Mississippi just south of the Tennessee border, which made my house note about $800 a month.
I live about three and a half hours away from him. My granddaughter still lives near him, and I’ll often make trips to see him and do what he needs.
There’s no joy, and it’s hard for me to say that because you would hope there would be some moment here and there, given the nature of our relationship. It’s a lot of frustration. I’m not angry at him for getting sick, but you’re angry that you’re in this situation at an age where you’re not even thinking that could remotely happen. I feel bad about this resentment, but I don’t think it’s going to change.
He was putting money in his 401(k), but you don’t often think about long-term care insurance because you don’t know if and when you’ll get dementia. We’ve valued having financial advisors to talk about what to do with his 401(k) when looking for facilities. But I had no clue at first who anyone was to talk to, so I could get all this information. It would’ve been easier to learn some of this before the process started.
I hope nothing like that happens with me, and if it does, I don’t know if I would want anybody else to go through the same thing of having to figure out what to do with me. This has made me a little more cautious about my money in case I need a nest egg. At this point, though, when life is more than halfway over, there are only so many things that I can do to be prepared.
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