I couldn’t resist putting this FANTASTIC photo of my dad and me and in this post. When the going gets tough…and with a progressive neurological disease, it gets tougher each day, I try to remember the good days. This was one of those.
Today was one of those days that reminds me that there are great things about assisted living facilities and not-so-great things. It’s a good to always remember that it isn’t going to be the same experience as if you were taking care of your loved one. And that can be a GOOD thing because, as is the case with my dad, I couldn’t possibly handle his needs because he requires complete 100% care. He can do nothing for himself at this stage. If you are thinking about whether to place your loved one in a facility or try to cobble together aids to help your loved one stay in his/her own home, let me give you some frontline expertise.
In an assisted living facility, there is a community. People need to be around others. They need to feel as if they are part of something bigger than themselves. Even if they no longer communicate or independently move about the planet, just having others in the room, having activities going on and other types of stimulation will add years to your loved one’s life.
And beyond years, it will add life to those years.
If you find a place, as I have with Daylesford Crossing, where the staff truly love being with the residents, it rubs off. Today I witnessed two staff people singing at the top of their lungs as they walked down the hallway. They were having fun and when the residents see that joy, it transmits to them. I have seen it in action. One day, the music was on and the woman who is in charge of keeping the rooms clean was literally dancing with her mop to a Motown tune. It was hysterical! When shopping for a facility, try to come at different times of the day and catch the staff who work the different shifts. It will give you a good feeling as to whether this is a place that people come to live…or to die.
Now…the cons of living in a facility.
I have to remind myself that this is not a nursing home. I specifically did not want to put my dad in a nursing home until it was absolutely necessary. So I cannot expect nursing home care in an assisted living facility. This means that I have to be more vigilant, have more of a presence so that when there is a shift…a change in his behavior, his mobility, or his cognitive abilities, it will probably be me who will see it first. Even though others may notice something unless it is a really BIG change they are not likely to mention it. Why? Because they have (in my father’s case) 18 others they are caring for and there are multiple shifts caring for these people. You’d like to think that they are attentive, but they just cannot be as attentive as you can be. So don’t assume that by placing your loved one in a facility that you are off the hook. You absolutely need to be present as much as you can so you can notice these types of changes. Don’t assume they will tell you (they might…but it might be 2 weeks later than you would have noticed).
This week’s events showcased this perfectly. Beginning on Monday morning (3 days ago) I noticed a change in my dad’s abilities. He was sleeping way more than usual during the day. He had a great deal of difficulty rising from his wheelchair to walk (something he did twice a day, for exercise), really couldn’t walk at all and cognitively he was more confused. His vision even seemed worse. I chalked it up to maybe a bad night sleep. So I said nothing. I came the next day in the afternoon to see if there was any improvement. There was not. Same thing on Wednesday. I finally started asking around. It turns out the exercise physiologist who works with him to assist him on his walks was having the same difficulty as I was. Also, the several CNAs who work directly with him caring for him also noticed a change. No one said a word to me. As I collected my data, I saw enough to concern me. So I called his doc who suggested getting him assessed.
We did that today and the nurse does not think it is a neurological issue; she thinks it might be as simple as a UTI (something he is prone to get). I normally can tell when he has a UTI because his behavior gets combative (not his usual personality). I wasn’t seeing that. Apparently, a UTI can show symptoms like I was seeing….so we are off to collect a sample and see what it shows.
The bottom line is I went through an emotional roller coaster these last few days thinking the end was nigh because I thought he may have had a TIA (a mini-stroke) or some other neurological mishap. I still don’t know for sure, but I feel more confident that it might just be a UTI.
If I hadn’t raised the red flag up the pole, this would have gone on for another week or two before it got REALLY bad. So, the message is: