October 14, 2017 – Like I say in the original blog from November 2014, the biggest thing I want to share with caregivers or people who know someone with Dementia is D O N O T C O R R E C T T H E M.
Right now, I don’t mind it too much if you help me remember things I seem to have forgotten or get wrong. As time progresses in my dementia journey there will come a time when I want you to really pay attention to this blog post’s information. For now, just don’t make me feel foolish because I don’t remember. Even now, sometimes as soon as you or I say something, a lot of times I don’t remember what you or I just said. So, you correcting me about something I just said (that I don’t remember), makes me even more confused.
It hurts the feelings of a dementia patient when you make them feel foolish, or correct them like they should know better. I know my poor mama did not know better as time went on and it seems I won’t either. Getting into their “special little world” will come later in this blog series.
Here’s the original 10.14.14 blog post:
Thanks for coming back. I feel like Alzheimer’s caregivers and loved ones are connected with each other like a family because no one else really understands what it’s like. Reach out to others that you may know in this family of ours to ask questions and learn what to expect as time goes on. A dear senior gentleman at our church allowed my sister and I to visit him and his wife (who had Alzheimer’s and was just a few days from her death) and ask our questions. It is a very shocking thing to see someone with this disease near the end of their life. I truly believe we were better prepared to handle the end of our mother’s life because he allowed us to come talk and see his wife. We all need each other so if your loved one is near the end and you know of a caregiver near the beginning of the process. please open your heart and home to them so they can learn from you and be better prepared.
One of the important reasons for as many people as possible to be more aware of Alzheimer’s, is that:
By 2050, the number of people age 65 and older with Alzheimer’s disease is estimated to triple, from 5 million to as many as 16 million, unless medical breakthroughs prevent, slow or stop the disease. Alzheimer’s is the sixth leading cause of death in the United States. One in three seniors die who have Alzheimer’s or another dementia. Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but survival can range from 4-20 years, depending on age and other health conditions. (source: empowher.com)
If you learn only one thing from this and future blogs about dementia, it is what I am going to talk about today.
- Your loved one will begin to tell you stories over and over and over, etc. etc. etc.
- They may ask the same question over and over and over even after you’ve answered them.
- You will tell them something one minute and the next thing you know it. they ask you about what you just told them in a way that you know means they didn’t remember you just told them.
- Your loved one will call common objects by incorrect names or will call you the name of her brother or her other child.
This list can go on and on.
WHAT I WANT YOU TO KNOW QUITE CLEARLY IS
D O N O T C O R R E C T T H E M
You may get aggravated by these actions of theirs but that is NOTHING compared to the hurt, depression, confusion and sadness you cause them by saying things like “I already told you that mama” or “How many times are you going to ask me that” or “Her name is not Susie it’s Donna, you know that daddy” or any other variation of correcting them.
Not correcting them is very difficult, especially early on when you don’t really know that the reason they are saying these things is something they can’t help. You don’t know they have dementia, you just think they’re forgetful and that you are helping them by reminding them what the correct thing is.
My strong recommendation is once something like that happens several times make every effort within your control to STOP CORRECTING THEM. One source I researched said to just smile and love them. They are not going to remember this information you just gave them very long but they will feel and maybe remember the hurt and sadness you caused. Don’t come back and tell them you are sorry, they won’t know what you are talking about and this will cause them more confusion.
Below is one of the most pleadingly direct, true poems from the perspective of a person with Alzheimer’s:
That information is very basic. and I hope. to the point. A lot more information can be found on the internet. A look at communicating with your loved one that goes way beyond the scope of my simple “DO NOT CORRECT THEM” was found on the Lewy Body Dementia Association, Inc. (Lewy Body is a form of dementia) website and I’ve included it below.
COMMUNICATING EFFECTIVELY WITH THE PERSON WHO HAS DEMENTIA
As a person’s condition progresses, his or her ability to communicate diminishes. Understanding the effects of the disease will help you communicate as effectively as possible for as long as possible
Your loved one may:
- Be unable to remember names, thoughts or memories
- Use the wrong words or invent words
- Mispronounce or repeat words
- Have difficulty organizing thoughts
- May be easily distracted
- Use more nonverbal gesture
- Lose ability to reason and understand
- Use language that is more direct or accusatory
- May become withdrawn and speak very little
Medications and other health problems also may affect communication. If you notice significant or abrupt changes in your loved one’s ability to communicate, talk to his or her physician.
Tips for better communication Although you may find these changes frustrating and even alarming, you can counter them. Consider using these tips to improve communication with your loved one:
- Make the effort. When communicating becomes difficult, your first response may be to stop. Recognize that communicating effectively may take more time and energy. Making the effort will help you sustain this vital aspect of your relationship with your loved one as well as preserve your loved one’s dignity.
- Try to understand. Rather than correcting mispronunciations or inaccurate statements, recognize that your loved one may no longer be able to consistently come up with the right words, or may have trouble comprehending what you’re saying. Be patient and use phrases such as “I’m sorry, could you repeat that?” or keep the flow of conversation going by providing the elusive word.
- Speak slowly, calmly and quietly. This will allow the person time to process what you are saying. People with dementia often watch our non-verbal cues (facial expression, body language, tone of voice) to interpret what we are saying and may mirror our mood.
- Avoid quizzing, testing or trying to teach the person to remember. These techniques won’t work and will only serve to embarrass and humiliate. Imagine the feelings associated with not being able to recall a child’s name during such a test. Instead of saying, “Do you know who this is?”, try “Here is your granddaughter Susan who has come to visit.”
- Reassure and comfort. Do not reality orient. The person may be worried about the children, parents, going “home” even if living at home or going to work even if long retired. Trying to convince them of the truth is generally fruitless and can be frustrating or even frightening. Jump into their world and help to make it less frightening by providing lots of reassurance. For example, if your loved one is worried because the children are not home from school yet, provide an explanation that might be acceptable and reassuring such as, “the children are staying at a friends house tonight, they are having a nice time”. If your loved one does not recognize you, go along with it or try stepping out of the room and announce your identity upon your return.
- Be aware of your nonverbal communication. Speak slowly, calmly and in a normal volume. People with dementia can be sensitive to changes in mood, voice, posture or facial expression. You can do wonders to ease tension by smiling at a frustrating moment. If you have difficulty understanding what your loved one is saying, listen for the feelings behind what he or she is trying to communicate and validate those feelings. For example, say, “I know that you’re frustrated right now” or “I’m glad you’re so happy today.”
- Forgive yourself when you don’t always respond appropriately. You may find it difficult to communicate with as much understanding and patience as you’d like to. Keep in mind that because of the memory loss, your loved one is unlikely to remember everything you say.
- Simplify your communication. Stand directly in front of your loved one and make eye contact. Communicate one idea at a time and use simple instructions. Try breaking even simple tasks into one-step commands. If you’re helping with a task, let your loved one know what you’re going to do next. If possible, demonstrate what you want your loved one to do — such as brushing teeth or putting on a jacket. If you must repeat things, try to use the same words. If your loved one doesn’t understand a second time, then try rewording. Avoid abstract concepts, which your loved one may find difficult to grasp. For example, phrases such as “jump into bed” can be confusing. Instead, use direct statements such as “it’s time to get into bed.”
- Validate the feeling behind the words. Even if you are unable to understand what is being communicated, look at the non-verbal signs of emotion. Is she upset? Joyful? Afraid? Respond accordingly providing lots of affection and comfort.
- Reminiscence can be very useful and validating. Persons with dementia usually retain their memories from long ago. Discussing these memories and prior accomplishments often provide a sense of security.
- Do not try to argue or reason with the person. Their ability to reason is no longer there, and the person will not be able to remember your reasoning or rationally weigh your points. Do not argue with the person over what they see, hear or feel. If the person is seeing things you don’t see, reassure him and respond to his or her feelings about it. Remember that these ideas or hallucinations are very real to the person who is experiencing them. Rather, offer reassurance and validation (e.g., “I know this is troubling for you, let me see if I can help”).
- Reduce clutter, extraneous noises or confusing aspects in the environment. Check out any real basis to the person’s fear. For example, the person may “hear people” in the next room because the TV is on.
- If the person misplaced something and thinks you or someone else “stole it,” offer to help look for the item. Keep track of frequent hiding places, and if possible keep duplicates of the item.
- Accept changes. Keep in mind that the changes you see and hear in your loved one are a result of the disease, not of your loved one trying to be difficult or hurtful. When your loved one says inappropriate things, remember it’s the disease talking. Try not to take it personally.
Even when your loved one no longer responds in the way he or she once did, your efforts to communicate will help to keep him or her engaged in life for as long as possible.
LAST NOTE FROM ME: This is related to the orange colored sentences underlined above. Remember that they are not going to come back into your world, the real world, so learn early on to live with them in whatever little bizarre world their deteriorating brain is creating for them. Even though they may have periodic lucid moments or even hours they eventually go back to their little bizarre world so when they do, go with them. Living in their world (when you are with them) is the kindest, more loving thing you can do for them and it will eliminate a lot of frustration on your part.
Please come back next time when I’ll share the a video I recently saw for the first time about how their vision changes as the disease progresses. It’s one of the things I truly wish I had known when mama was suffering with Alzheimer’s. I’ll also share with you the seven stages of Alzheimer’s and a video I found that depicts the stages using dance.
Please let me know if you are in need of prayer for yourself in your role as a caregiver or if you have any specific questions. Send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not an expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I won’t improve but will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is firstname.lastname@example.org if that is an easier way to communicate.
Isaiah 41:10: “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand” (NLT).
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