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Part of the problem in dealing with dementia patients is “attitude”, they are usually negative. Due care requires a major effort already in day-to-day demands, any negativism is just one thing to face. Understanding its origin can help to make it more acceptable and sometimes even avoid it.
The article “notion of time in dealing with dementia patient”, I say to live without short-term memory obliges the dementia patient to live only in the present moment. That means they have little sense of why things happen because they can not remember what was just happening. The whole idea of cause and effect disappears so they come to believe that anything can happen. Memory loss is so destabilizing that it is difficult for these patients to be positive. Then, with no memory, they can not prepare themselves for the upcoming event, they have the impression that things keep happening to them against their will. This is especially true of “control freaks” like my mother. Since she can no longer control things, her idea of the perfect day is one where we stay home all day. Her sigh of pleasure is audible when I announce that there are no plans for that day.
For caregivers, this can be a little depressing because it means that each proposed activity is going to be met with various reactions go from reluctant “OK” to all the “Not today, my back is killing me “. In my case, I have learned that my mother will always say yes to the breakfast table, but then try to take down the last moment. Knowing this, even I can be surprised. The other day I saw that it was a book sale in the library 30 min. away. I knew my mother could handle this length of trip where we were doing just the same trip last week just to buy yarn. My mother also used to be a librarian and is / was an avid reader. (It’s hard to read a novel when you can not remember what you just read.) The breakfast table she was very enthusiastic although she did keep focused on that I was the one who wanted to go and she wanted to do something for me. I heard the alarms go off in my head but decided to push on; after all, my pile of thrillers had indeed reduced to nothing and spend the whole day in the house is not my idea of entertainment.
After two reminders, my mother was finally dressed and we left. I was convinced that she would come up with the usual claim her to return home before we get to the highway, but she did not. 10 minutes into the ride we had run out of conversation, 20 minutes journey she began to ask how much longer it would be and I could sense her starting to tense up. I suggested that we stop for coffee and she snapped at me that it was better to get this over with. On the side, I was trying to be Zen; after all, we had the pleasure; any books would be a luxury. As soon as possible, I started oohing and aahing on how well the library was given the size of the book sales return, etc. When we pulled into the handicapped parking space right next to the door, I thought she might actually refuse to get out of the car. I could see that she was seething.
For me, of course, there was no reason for her reaction, but it was pretty clear what was going on in her mind, this was not the usual our library, ride in a place she did not know was scary, the time it took was like an eternity. I “cheerfully” took out Walker and its our reusable bags shopping, chatting all the time about how great this was and how I had really run out of books etc. When we first went in, she was looking so angry that I decided to go for it on her own, so she could feel more independent and I could get down to my own choice; I knew my time was limited. As expected, she chose only books that were familiar (ie we have them at home). Fortunately, she had decided to budget herself to $ 4 so that meant only 8 books. (She groused to me at “our” library, secondhand books are only 25c.) When I saw originally her choice, I decided to mention that we had two of them at home so she said to take them out of the pile and she would choose another. I did little fingers would be (my father was a wizard) and spent two more. This was of course replaced with 4 more “repeats”, but now she feels much safer. Walking among the tables allowed her to present themselves with the place in half an hour we were there and she does love books. Then, too, the fact that I finished choosing my books at the same time she did, it was very pleasing to her. Learning that we had got 33 books for $ 16.50 amazed her and put a very positive light on our little outing.
So was it worth it? After all, I had spent the entire trip wondering if we’d actually get a sale. The time of the sale was spent trying to keep an eye on my mother and still trying to choose books for me. On the other hand, my mother’s relief on the way back that everything had gone well, the obvious. Gone was the silence that had marked the outward journey: She spoke of scattered rain showers that we kept going through, she spoke about the agreement that we had (each time asking me numbers), she talked about the restaurant where we were going to eat (we ate finally home). Even a few days after, when she saw me reading a book, she would ask if it was from the “journey”. How she remembered the trip, I do not know, but it would definitely be a good stimulus and every little thing helps.
So yes, it is worth it when you become a caregiver, you have decided that the other person is worth to care. Caring for someone with dementia means trying to keep them as much themselves as they once were, allowing them to connect to their former selves as long as possible. (Short-term memory may be gone but basic knowledge and long-term memory often subsist to a good degree.) This requires that you gently push them to do what they used to enjoy. Again it will not stimulate them, they are just terrible. When these patients say no to your recommendations, you must remember that it really is not that they are being negative, it is often that they do not understand what is going to happen or how else to express their fears. It is not really negativism, it just looks pretty much like it.
I have adapted the way I talk to my mother:
– I do not usually ask her if she would like to go to the grocery store. Despite the fact that this is an activity that she enjoys (the only one in which she is very comfortable because she knows the store as well), she will try to delay. I say more: we need this or that, shall we go to Publix or Walmart? This is good because it focuses her thoughts (rather than her fear) function and gives her the feeling that she is the one to decide, which is positive.
– I avoid imposing a choice of 3 things because she can definitely get lost. I noticed early on that when I invited her to choose from two, she would usually choose another. Obviously! It requires less thought to say the last word she heard. So now, to balance out the two types of ice to keep, I just edit a series I invite them in. Funny how it keeps our stock evenly balanced!
– I was not going anywhere for no reason because my mother has not forgotten how to ask why? (Since she does not want to venture out anyway). Personally, I think some of my excuses are pretty flimsy, but without my mother has difficulty evaluating it and is willing to accept the idea of my value, importance and urgency. With no sense of time and no less, it is difficult to prioritize things or events. This allows me to get us out of the house to buy one skein of yarn for a baby blanket that I’m going to do next for my grandchild due in 6 months!
Recall that NO is an expression of fear or ignorance but a no, is a good way to learn how to circumvent the problem. In the beginning, it may feel like lying or deception, but when you see what you can do with it, it can solve a lot of problems. The most important person in the caregiver / patient relationship is the caregiver, so give yourself a break when you can. The patient is certainly not going to remember the little falsehoods and you may even start to feel that you are master of the situation. Do not let the NO defeat you, but consider it a challenge!
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Source by Catherine Warner