LightnLife Asked February 2022
I am a liar and bossy. Really? She is going to laugh at me when she is gone and I am going through this with my children caring for me. :-/
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I can't with it all right now. I needed to get that off my chest. I love her and I wish I would have read this forum a year ago. What are your coping strategies on a day to day basis when trying to deal with the mood swings and complete nonsense when it comes to trying to help when they don't want any? Mixed symptoms of what seems to be dementia, no diagnosis yet (though it is soon coming as to what all of this is), extreme emotions for "having their freedom taken" when it is simply us trying to care for them. What do you do when it all feels like too much?
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Uh huh. In her shoes you'd think: "they're only trying to care for me. So that's all cuddly and lovely then," would you?
When it all feels too much, as it must do and I sympathise, first of all breathe. Go into a quiet room (the utility room worked for me, if you don't count the washer as not so quiet), sit or stand, deliberately relax, breathe in through your nose and softly blow out from your mouth. You'll feel better, honest.
The next bit I am working on as a universal theory of life, and I am amazed at how many contexts it really does work in. It is the Start Again theory. If things are difficult and broadly speaking shouldn't be - e.g. putting on your pants, fitting a hearing aid, opening a carton - you're probably doing it wrong. Stop, and Start Again. The crucial part is the Stop, though. What tends to happen is that people become increasingly frustrated and angry with the task in hand, and they think they are starting again, and what they're actually doing is continuing what they were doing originally which *still* isn't working, and the more frustrated they get the more unreasonable and obstinate the immovable object (e.g. shirt button, battery compartment, walking frame, mother) becomes.
What is the difference of opinion between you actually about?
**Yes, extreme for her-as in throwing things when she feels she is being told she is wrong when it is really that someone is attempting to explain something fully to make sure she does understand and can make a fully informed choice. Uncharacteristically yelling at me, telling me to shutup, calling me names and the like. --EXTREME for her.
You said: Uh huh. In her shoes you'd think: "they're only trying to care for me. So that's all cuddly and lovely then," would you?
**I have not said this. This would be out of character for me so, if that is sarcasm, it is lost on me. I do not do sarcasm.
**I understand and teach breathing exercises to my clients. I also practice them regularly as a coping skill. Thanks for the reminder. It is helpful to have the external, supportive reminder.
What is the difference of opinion between you actually about?
**My presence. If she has an idea that anything is wrong with her she is not about to share it with anyone. She is angry because she feels her freedom is being taken from her in my presence in her home, assistance with anything she has always taken care of, any type of suggestions or even in conversations if it is not what she is thinking in the moment. Ulitmately, she cannot live alone. She does not understand many of her choices in a day can/will complicate/compromise her immediate and overall medical/mental/emotional health and well-being not to mention her financial well-being. (that is a whole other topic)
We are in the process of all the legal aspects and as I have mentioned, she has had another neuropshychological exam and we are waiting on the results.
1. Get her checked out for a Urinary Tract Infection. These can cause behavioral symptoms in elders. They can also turn into sepsis with frightening rapidity. Call her doc tomorrow to figure out how to get a sample checked and cultured.
2. If not a UTI, consider adding a geriatric psychiatrist to mom's team. The best "added value" we got was from mom's geri psychs. Meds (not "sedation", not tranqulizers, not doping her up) made a huge difference in my mom's quality of life.
And yes, walking away for 5 minutes, not to "punish" but to regroup, rethink and reset is invaluable.
We are meeting with her neurologist in a couple weeks for follow up and more information on another neuropsychological assessment that was done recently.
I walk away. Sometimes, for more than 5 minutes. She thinks I am mad, but I am not. I reassure her but I think she misreads my upsettedness as anger and it is not. I don't tell her this because she would laugh at me, but I am so unbelievably sad and distraught over this person I am getting to know who is going through so much right now and "seems" not to understand what is happening.
I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it. Medication isn't always the answer for 'behaviors', either; it's more about how YOU respond to HER that makes all the difference, since you are mom'a primary caregiver. She reacts to your emotions and that's why it's so crucial for YOU to behave a certain way in order to get HER to react in a positive fashion. Good stuff here:
The Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.” For people to understand that reality and context as perceived and experienced by a person with dementia, is altered by the dementia; and, that their reality and context is continuously changing as the dementia progresses, requires learning and an attitude shift; it is not ‘common sense.’
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
I hope this info helps you as much as it did me. Very eye-opening info.
Wishing you the best of luck with a difficult situation.
She had a good day. We managed to run an important errand out of town and I invited her to lunch. She gets so overwhelmed with the amount of food and drinks presented to the table. I just let her talk about it without offering much except "Oh, I understand" and some other benign comments to let her know I was listening.
Google D-Manose. Some folks swear by it.
If mom has dementia, she shouldn't be "driving the bus".
Work with her doctor on how to get her in when YOU think she needs to be seen.
I did read the comments and the Stop and Start again sounds good. Wish I would have heard of that a week ago.
Here’s one to start with:
https://youtu.be/WARI6N-g-0Y
I wanted to suggest having your mom tested for a UTI as well, In the elderly the UTI symptoms seem to be different from younger people. She may not have burning or frequency but yet she can have an infection. If she is acting out it’s a good thing to check as it’s often the case that dementia like symptoms are worse when the senior is dealing with an infection. If she shows sign of an infection with the dip stick test, ask the dr to run a culture so that she can be given the correct antibiotic. If it’s inconvenient to take her to a dr., an urgent care could help.
The really bad thing about a UTI is they are toxic. She can wind up in the hospital. Much easier to rule it out with a simple test and antibiotics and have a happier mom.