By the time we realized that Dad needed as much help as he did, he had been living alone for at least thirteen years. In that time, the fabric of his house had started to fail, and a lot of the appliances had stopped working – including the furnace. Ever the stoic, Dad insisted that he was fine with just the fireplace and a space heater, as well as the multiple layers of flannel shirts he had taken to wearing. What he had probably forgotten, however, was that an unheated house in Seattle quickly becomes a moldy, damp house in Seattle, which is what we faced when we stepped in.
We found an amazing live-in caregiver, Del, who moved in with my dad in November, 2003. Poor Del was a good and patient man because he had to live in that cold, musty environment for six months, largely since I was still too afraid of Dad’s opinion and authority to insist that he hand over his checkbook and let me buy a heater. By the time I moved in with Dad, I had gathered the courage and cojones to take over the money and I had a new heater installed, since there was no way I was living there without one. It helped, but the damage had already been done, of course – by the lack of a furnace, as well as the old, leaky roof – and the sheer age of the house. Although livable, it was not the safest environment anymore.
I’ve noticed that many of my friends are beginning to face health and care issues related to their parents. Some of my friends are facing parental dementia or some other illness or injury, others are just facing aging parents and an inability to keep living alone, sometimes with a side of the same clutter, dirt, disrepair, and unhealthy living environment that I faced with Dad. Suddenly they are worrying about how their parents are living, and asking themselves what happens next and where their parents might go.
One of the main questions I get asked by those friends or by my support group members involves care facilities. Institutionalizing our loved ones is one of the hardest, most emotionally gut-wrenching decisions and knowing when to consider a move to a facility as well as how to find the right one is not easy. I lived in the house with Dad for almost two years before making the final decision to move him into a facility. I had always known that I lacked the ability to care for Dad throughout the course of his dementia – among other things, I knew I couldn’t change my own father’s diapers or lift him in and out of bed – and had planned for his eventual move.
I decided to move him when I did, largely because I was tired of worrying about where we were living; whether something else would break, or stop working, or fall off of it, or fall on one of us. It was still musty and uncomfortable, despite the furnace, and difficult to take care of. I also worried something might happen when I was too far away or unable to reach him. I spent much of the time I wasn’t at the house expecting a phone call about the house, or about Dad. In the end, it wasn’t Dad that got too broken down – it was the house – and my ability to put up with all of it.
Facilities historically have had a bad rap, which I can understand, but a lot of that comes from old information or no information. There are more – and better – facilities than there were even ten years ago when I was looking, and you can usually find one that suits budget, interests and healthcare needs. Of course, we would love to age and perhaps die in our own homes but there can actually be many reasons why a facility is the best choice for everyone involved.
In our case – as in many others – it was an unsafe or unhealthy environment that encouraged the move. It can be difficult for an ill or elderly person who is alone to make sure they are taking their medications properly, or getting enough to eat and a facility will make sure it happens; Dad was basically eating bread, cookies and soda when I took over and his poor nutrition may have contributed to his decline. For the elderly or ill, house repairs can be dangerous or just too difficult to do or pay for and as I experienced, a non-cared for house can quickly become an unstable and unsafe house. In addition, money for electricity – and heat – can sometimes be lacking.
Sometimes, there is just nobody able to live in and give care, or nobody who wants to. Living with an ill person and being a caregiver is one of the most difficult jobs ever; many people decide they either can’t do it or have reached their limit after months or years on the job yet they still hesitate to investigate other options because of shame or guilt or because they promised never to consider it. I’ve seen situations change suddenly, though, and usually at some ungodly hour of the morning or some other spectacularly bad time, which is what happened to us and why I encourage people to always investigate options in care and respite in advance.
I know its a tough thing to consider, but I can tell you from personal experience that its one of the best conversations for a family to have. And that happens to be one of the huge positives of facility care: families can go back to being families, not caregiver/care receiver. I know I definitely felt that to be the case. I liked being able to be with Dad and have fun and enjoy each other’s company without always thinking like a caregiver. It did take Dad a while to adjust. I found that bringing his favorite art and pieces of furniture, as well as his cat, Mow, helped make things more familiar and more home-like.
Both Del and now Greg have taken far better care of Dad than I ever could, with more patience, tolerance, and skill: I know that if something happened to him and I couldn’t get there, there would always be someone caring with Dad. There are no certainties, of course, but on the whole, facilities can be a positive thing; safe, comfortable, intact, warm, and full of food and care – all in one place. To me, home isn’t necessarily a place but is truly where the heart – and the heat – is, where you’re most comfortable, both physically and emotionally. I’m pretty sure Dad feels at home.