Something that all care partners have to contend with, sooner or later, is helping their loved one move from one place to another. This can involve moving from a bed to a chair, getting up from a chair so that she can walk to the bathroom, getting out of the car, and so on. One important thing for a care partner to consider here is not only to accomplish this without injuring the loved one, but also so as not to become injured yourself. You can’t do your mother any good if you”re down in the back or otherwise incapacitated.
Perseveration is a behavior in which a person repeats a particular word or phrase, action or behavior, or emotion. Typically, the behavior persists long after it is either useful or meaningful, and the person has no conscious control over it. A common example of perseveration is when a person asks the same question repeatedly during the course of an hour, or a day, much to the frustration of those who have provided an answer time after time. However, it is important to remember that we all display perseverative behaviors from time to time. They only become a problem when they disrupt the lives of the individual who exhibits them, or those who are around him, or else is injurious to his health in some way. (3)
As those who read this site on a regular basis are undoubtedly aware, I am currently working on a major revision/update that will hopefully provide a useful service to persons with dementia, and their families and care partners. I know that most of these readers are not prone to comment on what they read, but I’m asking everyone to take a few minutes to answer some questions that will help me know exactly what services are desired, and what priority is placed on their availability. (You see, I can guess what I think is wanted/needed in this area, but it would help me to know what the people who actually use this site want.)
So please take a moment to answer the following questions, in the comments section. If you don’t want your answers seen by others, feel free to send them to me privately at firstname.lastname@example.org. Again, this is your website. Please help me to know what you’re looking for, and what you’d like to see in the future.
1. Tell me a little bit about yourself. What is your approximate age and location? Are you a person with dementia, or a family member or care partner, a profesional, or someone who is just curious and would like to know more?
2. List the 3 most important reasons you go onto the internet (and not just this website), related to dementia. This could be things like:
~ I have a particular form of dementia, or my family member has it, or I take care of someone who has it, or some other reason. Iwould like to know more about it.
~ My doctor used this really big word, and I don’t understand what it means.
~ I have a problem with something, or the person I care for has a problem, and I would like to know what to do about it.
~ Is there a cure or a treatment for my disorder? What is being done to find one?
~ I would like to be able to communicate with others who have my problem, for information and support.
~ I wish I could talk to a professional about my disorder, without having to make a doctor’s appointment.
~ I want to know how to find a nursing home for my loved one.
~ I found something that works really well to help with a particular problem, and I would like to share it with others.
~ And so on.
3. What is one of the biggest things that bothers you about websites that claim to give information about dementia?
Thank you for your help and support. I look forward to hearing from you.
Okay, for a while now I’ve been talking about the new website that I’m creating, which will eventually replace this one. (And be even bigger and better!) If you would like to receive updates as to how things are coming over there, and possibly have access to some special offerings that won’t be available to everyone, then please take minute to register by clicking on the photo below. So, come on along and find out what all the excitement is about!
It’s hard to believe it, but this site has been in existence almost three years now. In May of 2015, I began an experiment which was partly a hobby, and partly a way for me to answer a need I had to help the community more than what I was able to do in my daily work. I really had no idea what I was doing, or where I was going with the site. I just let it develop as it might, and soon it began to take on a life of its own. Now, there are almost 300 posts on a variety of topics. Over 100 people have chosen to “follow” the site, and citizens of almost 80 countries have read my words. (The thought of those last two statistics is quite humbling.)
It’s not uncommon for persons with dementia to reach a stage where they become easily disoriented. They have difficulty recognizing, or remembering, where they are, who the people are that they see around them, and what day or time it is. This can lead to confusion and even aggression as the person tries to sort out her environment.
It is important to use both visual and auditory cues to assist a person who is easily disoriented. Many hospitals and long-term care facilities are now placing a board in the person’s room which contains the day and date, as well as the names of who will be providing care for the person on that day. This is a great thing, if the person is still able to read and also remember to look at the board for assistance. But, too many times, I have entered someone’s room only to find that the board has not been updated in several days.
A calendar (with large print, if necessary) and a clock are also essentials for helping a person stay oriented. It might be helpful to mark off the days on a calendar, so the person can quickly determine which of those 30 days it is at the moment. Of course, it is important to stay current on this task.
And with so many staff members working in a long-term care facility, it can’t be assumed that a resident will remember the name of each and every one. If the person has consistent caregivers, meaning that the same small group of staff members is assigned to his unit every day, she will usually learn to identify most of them by name. But it can’t be assumed that she will do so. Here is where name tags are critical. And it doesn’t hurt, either, for caregivers to introduce themselves when they enter a room, especially if the resident is paying attention elsewhere or is sleeping. It also can be confusing when a person knocks on the door to the bathroom, to ask if one is finished with the job, if you don’t know who is there. Talk about lack of privacy!
I came across this video today, while surfing the web. Those of you who visit this site on a regular basis will recall that I’ve written a couple of times about country music singer Glen Campbell and his battle with Alzheimer’s Disease. This was his last recording, completed last year just before he retired from performing publicly. I have to admit that I had tears in my eyes while listening to it. Especially when you consider what the man was going through, I think it’s pure genius.
I’d love to know what you think.
Glen Campbell – I’m Not Gonna Miss You: http://youtu.be/U8TsAh-zYFI