She's too weak to walk with her walker or stand so I can help her toilet but if she's left on her own she gets up and out the door? WTheck? "I'm just so tired." On and on and on and on - anytime I need her to eat or transfer from wheelchair to recliner or transfer to toilet or stand and brush her teeth or ANYTHING. Now if I have to take her somewhere, doctor, church, store, cemetery (I swear if I told her we were going someplace to be drawn and quartered) she can stand and practically run down the hall. If she is hanging on to a grab bar and I want her to sit down in the wheelchair because we are both falling towards the tub she can hold us BOTH up by the grip of one, trembling, 87 year old hand. She gets in a cycle of self-pity, crying and whining about fillintheblank and it just shatters everyone around her, but if it is just us and I tell her to can it 'cuz I'm not buying it she brightens right up and proceeds to call me all 13 words you can't say on television. Is it just me? Is she capable of tailoring her responses for JUST ME? The doc says it's the disease, she just doesn't know what she's doing. I am having a VERY hard time buying that as she is pi-ti-ful for everyone (and they all buy it and feel awful for her and pet and try to console) but I have found she is IN-consolable when she is like that. So I make her mad and she snaps right out of it and fires up at me and then she is good for a while. What gives? Oh, she's 87, about an early 6 on the 1 to 7 scale for Alzheimer's, she still knows who we all are, I am her daughter-in-law (friends and prayer partners for 30 years) and primary caregiver.
She will be totally helpless and unable to even lift her hand to put food to her mouth but put a cookie or piece of chocolate within reach and she snatches it so fast that you don't even see her hand move.
She is too weak to do anything but has the hand strength of a sliverback gorilla - especially when I am trying to mover and don't realize that she has a death grip on a fixed object.
She can't remember how to do simple tasks or follow instructions given a minute ago but has managed to formulate lies (that, of course, I have caught her in) when she needs to. Example - I didn't give your brother my credit card number, he must have still had it written down from a while ago - LIE. Her caregiver had just told me that she had given it over the phone that day. She didn't forget, she lied so I would not yell at her.
No, Runaway, it is not just the disease. I think the disease exaggerates the personality traits but she is still in there sometimes, pulling the strings when she wants to.
Bless you -- you and I are standing in the same pair of shoes. I'm convinced Mama is going to outlive us all out of sheer spite!
Sorry, I guess I'm rambling, but this is one reason (my reason) why some people try to continue to care for their LO and "put up with" their bad behavior.
There are as many reasons as there are people. Financial concerns, legal issues, family problems...................................and the list goes on.
So, I told my daughter last night to go in and try to get her to speak. I stood in the shadows. It took my daughter less than 30 second to get my mother to say very clearly what she had done during the day.
Yes, sometimes the behavior looks manipulative. But if you examine it, it is more like the manipulation that a four-year-old would try. It is not the sophisticated ploy that a healthy adult would try. (Although someone who has been manipulative all their life may still retain some subtlety.)
My husband had dementia. His brain was damaged. In fact, his neurologist (a researcher with access to diagnostic scanning devices not yet in widespread use) shared with me a colored picture of a section of his brain, and also what a normal brain looks like. Yup, there was damage.
Upon autopsy his brain was found to have very defuse "Lewy bodies" -- all over his brain, confirming his diagnosis. The damage could easily be seen and counted by those trained to look for it.
His behavior was not always under his control. And he was unable to learn new things. Telling him "in no uncertain terms their behavior WILL NOT BE TOLERATED," would not teach him to not do it again. He might understand and want to please me, but he would soon forget. Tough love for those with damaged brain is just cruel and doesn't accomplish anything.
But there was some behavior I would not tolerate. In his belligerent period he threatened to push me. If that had escalated and continued I could not have tolerated it. But I wouldn't have tried to teach him to stop. That is pointless. I would have arranged for placement for him (assuming doctors could not solve it with medications.)
I'm amazed that some people can care for a narcissistic parent. I really don't think I could tolerate that. (But you never know until you are in the situation.)
I did not stay with my husband or care for my mother out of a sense of duty. I did it in love. Each of us has different tolerance levels, different boundaries we need to maintain.
You may not give a hoot what the reason for the behavior is, Riley, but the fact is that dementia (or any kind of damage to the brain) is not the same as a broken arm or respiratory illness.
Those lewy bodies (tiny masses of a protein) that caused my husband's dementia also causes Parkinson's disease.
If your loved one had Parkinson's and sometimes could stand up and walk and sometimes needed help, sometimes had very shaky hands and spilled beverages but sometimes could drink just fine, would you assume she was being manipulative? Would you tell her in no uncertain terms her behavior WILL NOT BE TOLERATED and she has to stop falling and keep her hands from shaking?
(Sorry this is so long, but it really hits one of my hot buttons.)
Here is an AC article on the subject. Scroll down past the insert ad to read the entire article. https://www.agingcare.com/articles/dementia-behavior-manipulation-154554.htm
When a doctor says the person's behavior is due to dementia,( brain damage), then, we as caregivers are bound to adjust ourselves to this mindset. If we are impatient, we must muster it. If we are thin skinned, we must get tougher. If we are confused, we must learn more. And then if the challenge is too great, we must place the care of the LO somewhere where there are those who can do it properly.
Expecting the disabled person with brain damage to get with the program is not helpful or feasible. It's not about us, it's about them. I don't think there are any situations where the disabled, brain damaged patient's care is contingent on their good behavior. Regardless, they must be dealt withy love, care, compassion and patience. That's why they have laws about it.
See All Answers