I've been taking care of my mother, who has dementia, for a few years now. She started showing serious signs of dementia back in 2011, but some precipitous symptoms before that. It started off with driving the car up onto the curb, forgetting her car keys, being unable to figure out how to use her cell phone. Then she began to have hallucinations, scary ones; the kind that had me talking to the police in the middle of the night, explaining that my mother hears and sees things that do not exist.
It forced me to face many issues. You learn a lot, let's put it that way. You learn about the condition that you (and your parent) are dealing with and you learn about yourself. You learn some things are possible and some are not at all. It opens a world of fear, understanding, guilt, regret, anger and helplessness. Sorry, but those are the facts. There's nothing really good about dementia. It creates deterioration for both victim and care provider.
But there are ways to ease the burden. Let's first look briefly at the signs and symptoms of dementia and then look at ways to make it easier caring for someone with the condition.
Signs Of Dementia
It can creep up on you. At first she seems normal but then suddenly begins to forget big things, can't schedule appointments and starts seeing things that aren't there. For this reason it's often delineated as the first stage of dementia that there is no dementia; so you can differentiate between what was normal and when dementia started.
Here are the basic signs that someone has dementia:
- Memory loss.
- Trouble remembering recent events or recognizing people.
- Communication problems. Mumbling and slurring of words and even using the wrong words.
- Lowered comprehension or no comprehension.
- Anxiety and agitation.
- Judgement impairment.
- Mood swings.
- Difficulty with personal care.
So, with my mother I've dealt with all these issues and the tips I offer below are related to all these symptoms of dementia.
Here some basic tips for taking care of someone with dementia, specifically oriented to those who are caring for a parent with dementia. This kind of care brings up personal issues and entails dealing with unpredictable and strange behavior. I have explanations below for why I use these "techniques" when caring for my mother. The idea is to make things easier for the both of you, both care provider and cared-for.
- Don't tell her too soon when an appointment is coming up. This might or might not be applicable to you. My mother has almost constant anxiety and agitation, always anticipating what's going to happen next or what is supposed to happen next. She goes to a day care program regularly. The day, or days, before it is time for her to go, she will keep asking me when it is time to go, especially if someone has already told her she will need to go on (scheduled) day. Telling her ahead of time generally just increases her anticipation and anxiety. I literally tell her within about 30 minutes before it is time for her to go; this gives her just enough time to get ready and go. Otherwise, typically, she will ask me all night the night before, even stay up late worrying about it, and then not get up and go in the morning when it's actually time.
- Use a white board. This is good for the basics. Like--"Your daughter is coming to visit on Thursday". Strangely enough, it works for things like that, that are not necessarily regularly scheduled activities, but appointments that she will continually ask about when she knows they are coming up. Having her refer to the white board is a good way to re-assure her and help you save on your own energy and time.
- Deal with your mortality issues. They are going to come up. You are watching your parent die. You are getting older. It's like they are dead already because much of them is gone. They can't do what they used to do, they have no fight in them anymore and it even seems their personality has disappeared. You are dealing with death. Try to understand it, try to figure out why we fear it so much.
- Consider yourself and not just them. Depending on what your relationship is with your parent, you are liable to always feel sorry for them and give up all your time and energy to them and slowly watch yourself deteriorate along with them. The problem is, that destroys the both of you. Get help if you can, and make sure the help is used. Get them on the bus to go to the day care program. Make sure the respite worker takes them out. It will help both of you. They will stay active and you will get a break. You will have a much harder time taking care of them otherwise; which is worse for them too.
- Make breaks count. When you do get a break, make it count. Do something you really want to do. Get away. Visit friends. Get some work done that is important to you. Lounge around and watch TV and eat snacks. Don't waste a moment that you finally have for yourself.
- Assign an area to keep things. People with dementia tend to lose things all the time. They lose keys, cell phones, brushes, eye-glasses, pill bottles. Keep these important things in a location where you can keep track of them and you can get them for your Mom (or Dad) when they need it.
- Work on the relationship. It might be too late for your parent to understand the relationship the two of you have between each other, but it's not too late for you. You are going to be forced to face it. This is the end. This is why that mortality issue is so pertinent and at the forefront. This is the end of a relationship and all the pain is going to come out. If not, then congratulations, you are super human. But for us mortals this will have to be an opportunity for us to sort through our relationship issues with a dying parent.
- Understand it won't get better. This is truly a lesson in helplessness. If you are used to finding answers, then you will be sadly disappointed here. Dementia is something that can't be fixed and it gets worse. This is a situation that will never change and will continue to devolve. Accept that from the beginning and you will be less disappointed. Then you know that you have to find ways to make it better, but not fix it.
So, if you are taking care of a parent with dementia, number one rule as far as I'm concerned is to take care of yourself. If you collapse or have a breakdown, then you're no good to yourself or the one you care for. Understand this is a condition that will not change or get better. Find out how to make it easier on the both of you. And get help. Seek it out and find it, it's on the internet and there are local agencies that offer services for those with dementia and their care providers.