Dementia, in any form, is devastating to everyone touched. I know it is - for two years we took care of my husband's grandfather while he slowly deteriorated from this terrible thing.
I have relatives dealing with it even as we speak.
It's all-encompassing for anyone who is doing the care-giving, plus so emotionally taxing. Suddenly the parent that has always taken care of you, is needing you to take care of them, eventually in even the most basic of functions. You wake up one morning, and your parent has forgotten where they are, what day it is, why you're in the house, and eventually, even more devastating, they forget who you even are.
It's so stressful, it's like living in a pressure cooker all the time. Your loved one cannot be left alone in a room, because who knows what they'll do. You're reduced to treating them like they're two years old - when you've had a lifetime of being taught to treat them with respect and honor. There's stuff that goes on in this process that none of the rest of y'all want to know about - not criminal, mind you, just things that no one else wants to deal with, but it has to be done. So now you feel guilty on top of it all.
And there's no relief.
They can't be taken to a senior daycare, because those facilities don't manage people who can't remember to take themselves to the bathroom. Not to mention the fact that often added activity makes their dementia worse for that day, sometimes a couple days after, as well.
You might not be able to afford in home care - we had a nurse come in for a little while each day, but it became so expensive we finally had to let her go. We probably could have afforded someone who wasn't a nurse, but we decided to take on the care ourselves. The money just wasn't there to afford outside, long-term help.
It was absolutely exhausting, and took our entire family pitching in. There was myself, my mother-in-law, my husband, and our two oldest daughters helped with the watching part. In the past I've been a registered CNA, so I understand daily personal care-giving. My mother-in-law is a registered nurse, so she had quality healthcare training. I cannot imagine what people are going through who have no formal care-giving training. And believe me, I DO understand what I mean when I say I canNOT imagine. I know there's a whole other level of fear, trepidation, worry, stress, and outright terror involved if you come into this situation without feeling adequately prepared.
And in it all, there's no one else who can help.
Each time something new happened with grandpa we'd realize that we had to step it up a level.
Grandpa had these collections of penknives - we eventually had to hide them all. Each time we turned around he'd have another one, and he'd be trying to cut something up - usually the tops off his socks. We don't know why he'd do that, but we couldn't just let him continue. I remember we'd follow him around watching like a hawk until he put that penknife down, then grab it when he wasn't looking and hide it from him. We finally had to scour every drawer, shelf, and cubbyhole in the house looking for those penknives because he seemed able to pull them out of thin air. It would have been comical if it weren't so terribly tragic.
Once he got hold of the handset of the phone, and would not release it to anyone. He hit the talk button, too, so no one could call in to the house for a few hours. When he finally let it go, we realized we had to start putting the handset out of his reach.
It was at this point that all sharp objects were put in a back area that he couldn't get to. All forks, knives of any sort, kitchen or otherwise, letter-openers, everything. The area of the house that he could access had to be completely childproofed - and that's a ton of work in a house they'd been living in for fifty years.
For awhile there he realized he was missing things, he knew we were hiding things from him, and it got him angry.
This man had spent a lifetime being unfailingly kind, even-tempered, the one his family could rely on to be their rock, the one that could handle any task he put his hands to. But it got to the point where he could no longer remember how to control his own emotions. It was devastating for him, it was devastating for us. He wasn't always kind anymore. He sometimes said things we hadn't thought would ever come out of his mouth. And we had to let it all roll off our backs - each day, all day.
It's not easy to write about this, not easy to think about, not easy to deal with. Let me tell you though, it's much, much harder to live with it in your house, day in, day out, night in, night out, every second. No one wants to come over, because no one else wants to see this loved one in this state, either. You can't go out, because they can't be left alone, and too much extra activity wears him out, and makes his dementia worse that day - and probably for a couple days afterward.
But I'm not writing this just to vent. I'm writing this in the hopes that it encourages someone, even one person, to reach beyond yourself for a little while.
The people you know dealing with this right now need your help.
You might say that you don't know how to deal with someone like that. Well, the ones living with it didn't know how to deal with it either, but they are in a situation that they cannot get out of, and they feel guilty for WANTING to get out of it.
Volunteer to go over there and sit with their loved one for a little while. They'll probably refuse the first time or two that you offer. Keep offering, and if you're a real close friend of the family, or another relative, just show up. Let them know you understand their sweet loved one might cuss them out until they're blue in the face. Let them know you understand you might have to clean up a mess. Let them know you understand that you might have to keep yourself out of arm's reach, because the grip on that fragile-looking senior citizen is INCREDIBLE, and you do not want to have to extricate yourself from it.
Other relatives living in the area? Be available! Show up and just start cleaning the house. Believe me, they need it. Don't judge when the house smells bad - because sometimes it will. Just help. Take out the trash. Sweep the floor. Clean the toilet. Clean out the refrigerator. Dust something. Go BUY GROCERIES. Oh goodness - some of these basic things just no longer showed up on our radar, and they'd get forgotten, and then there's something else to feel guilty about, making us feel like we'd failed.
When we were going through this with Grandpa, we had one relative that committed to taking him to his doctor's appointments for us. What a blessing this was! And just one example of a creative way to help a family that desperately needed help.
Oh how I wish everyone understood these things. I can't tell you how many times I've heard stories of people in this sort of situation, and there's other family nearby - like within a five or six minute drive from the house - and the other relatives almost never show up. I know it's usually not out of malice, or intentionally being neglectful - they aren't trying to ignore, they just have their own lives and their own things they do. It's not like they're sitting at home doing nothing - usually. Most often, these other relatives feel as if they CAN'T handle what's going on. They believe they are not ABLE to help, that they don't know what to do.
What they forget, I think, is that the family living in the house often feel the exact same way. They feel they are out of their element, all of this is beyond their capability, above what they can handle. They don't know what they're doing either. All they need is someone else to take a little bit of some of it off their shoulders. To stand next to them, maybe hold their hand, pray with them, talk to them, remember who they are.
Think about it.....these families are YOUR family. The ones living there in the house with the loved one afflicted with dementia are hurting. They are in desperate need of a respite - and respite care doesn't take on the intensive type watchcare that most of these people need. Not to mention the fact that respite care is not cheap - in any way, shape, or form.
They are in desperate need of being able to get out of the house, with the knowledge that their loved one is being watched lovingly, by another responsible person. Or maybe they just need to go in their own room and take a nap. Seriously - nap time is important!
Give them an hour or two of your time. Don't isolate them. Be a support. I know you're busy. I know you have legitimate things that you have to take care of or your own household will fall apart. I get that. Your family gets that. But find some slot of time you can give this hurting, desperate family of your relatives.
Show them you love them.
Show that you care.
To those living in this situation - you ARE understood. There ARE others who have gone through the same thing. There IS help. When someone offers you help, take them up on it. Don't be so independent that you think no one else can do what you're doing. They CAN. Let them.
AND cookies for everyone who actually read all the way through this long long blog post.