In public my Mother is so nice. She becomes the person I know. As soon as we get back into the car or back at home, she reverts right back into her meaness, complaining about everything, worried about her candy being stolen , hating my step son, my partner etc. Is this normal for a person with Dimentia? Do they have the presence of mind to know they should behave in public?
Showtime is not a bad thing. I think it is great if they can hold it together long enough to attend a grandchild's graduation, or to have a pleasant conversation with a visitor.
But showtiming can be very frustrating for caregivers. First, if the loved one can be that nice to the visitor, why can't she be that nice to me? Sorry, no can do. The "normal looking" behavior is an exception. The dementia behavior is now the norm. We can't expect exceptions to go on all day everyday. That truly is beyond their control.
And also, it is hard on the caregiver's credibility. Early in my husband's dementia my sisters would visit for brief periods and go away thinking, "Well, he is not so bad. I'm surprised Jeanne is having such a hard time dealing with this." Argh! Caregivers need validation, too, and to have outsiders think we are exaggerating or just plain wimpy is not pleasant!
My suggestion is to enjoy each episode of showtiming as it occurs. Since there is nothing you can do to change this, bask in her niceness in public. Just realize the on-and-off "normal" behavior is the exception and it has nothing to do with whom she loves best or who deserves her best behavior.
She is pushed to her emotional limit when the caregivers, nurses or doctors want to examine her. She won't let them touch her. They have on at least on one occasion given her an anti-anxiety medication prior to a Doctor visit and it didn't help relieve her anxiety.
It is sad to listen to, but when I discuss her behavior with the staff, they tell me Mom is always pleasant and funny and they enjoy her. Thank God for that. I don't mind if she blows off steam to me, if it makes life easier to deal with. Now that I think about this, she has always been that way. Way nicer in public than behind closed doors. Mom has had dementia for several years but has always managed to keep it together. Good luck.
This is teh hardest thing I have ever had to do. I feel my sanity slipping away. I never knew I could ever hate my Mom just for a few moments. But lyesterday, I did. Ths disease is so damn ugly and sad. My number 1 support system has been my Mom. My Mom is already dead. The person in her now is a stranger to me. I wish, and prey, for the strength to help my Mom live the rest of her life with dignity and love .....I miss my Mom so much....
Lost is California....
The true thing you said? This is the hardest thing you've ever had to do. Hard, but not impossible.
Sandfox, the demands they make on us are exhausting, aren't they? It is possible that your mother is seeking attention by her behavior, and I guess that in itself can be part of some kinds of dementia. It is also possible that the nearly unbelievable fluctuations in abilities are part of the dementia. It can really help our understanding (and coping skills!) to know what kind of dementia our loved one has, and what is "normal" for that. As I understand it, in Alzheimer's the patient losses larger and larger blocks of memories over time. For a while they may be living in their own 40s, then their 30s, etc. When they are in their childhood in their minds, then "childish" behavior like attention-getting behavior can be common. Lewy Body Dementia does not have this gradual and predictable going backwards in time, but it has pretty amazing fluctuations in cognitive abilities. Some days my husband can use the remote, and some days he simply cannot. This has got nothing to do with wanting attention in his case -- his brain functioning is just that variable. Poor dear can't help it, and he'd desperately like to be independent in using the tv. The bathroom rush jobs are very real and very sad for everyone concerned. The brain simply can't process the signal from the bowels or kidneys in a timely manner. I try to take this in stride and when I need to help clean up after the rush wasn't fast enough I try to be reassuring and let my husband know this is not his fault or any big disaster. (MInd you, what I am saying may not exactly match what I am feeling, but my calm acceptable is good for both of us.)
Joyce, it is sometimes hard to distinguish between dementia behavior and just more of same from lifelong habits. In a way ( a LIMITED way), having the difficult behaviors come out at home can be lucky. One caregiver in my local group had a husband who was as nice as pie at home alone with her. But he had aggression and other unacceptable behaviors in his day program and had to be withdrawn. She's glad he's pleasant with her but not particularly glad she has to be with him around the clock!
quakerite, I, too, thank the gods for eyes that roll!
Waverun, I am so glad you have an appointment with Adult Psychiatric for her today and I sincerely hope that helps you both. Might I also suggest getting some counselling for yourself? As you recognize, you have experienced painful losses. And there is no recognized way to mourn. No one is sending flowers, there was no little notice in the paper, friends aren't dropping in to hug you and offer a hot dish or a bowl of Jell-o with fruit cocktail. And yet your number one support system is dead. How very very hard dementia is on the family! I know that you REALLY do not want to pinch your mother or take your frustrations out on her in any way. You deserve some counselling to help you manage these very challenging situations. And please stop back and let us know how the appoint went.
Quagmire, you are definitely correct that a difference between public and private behavior is not limited to dementia, and narcissistic personality disorder is notorious for it. But in the early stages a dementia patient can control behavior in short bursts, usually reserved for public display. They can, with great effort, pull their act together for a visitor or a doctor, etc. This is not narcissistic on their part, and it is how they'd like to be all the time, but cannot sustain it. I feel really and truly sorry for family members of someone with narcissistic personality disorder who also develops dementia. OMG!
vhope00, dementia gets my vote for the worst disease also! I am so glad you are now able to enjoy the moments when your Real Mom is present. Many caregivers say that is what keeps them going.
greatat61, I can relate to your mom, both in her embarrassment over inappropriate behavior and in her being a nervous wreck trying to take care of him. I hope that now that she doesn't have to do the hands-on caregiving and that he is in a place where he behavior is understood she is able to relax a little and enjoy any moments when her Real Husband is present.
Next week our daughter and I are taking my husband on a week-long cruise. I know that he will be show-timing like crazy and will be on his best behavior. I also don't expect he can sustain that for a whole week. I am printing up some business card sized notices that say "Thanks for you patience. My husband has Lewy Body Dementia" (with a set for daughter, too.) If there are instances where his lack of inhibition might offend or hurt someone this small explanantion might help smooth it over. I have not tried this yet, but another caregiver in my group used the idea on a trip. She only handed out a couple of cards but was glad she had them. I really believe that most people are very kind when they realize we caregivers are coping with something that can't be helped. I'll report back if we need to use the cards!
This led to him slapping her (his words) when "she wouldn't shut up". My father didn't/couldn't deal well with the extra responsibilities he had to take-on (which she had done for years), or the extra care she needed, or the changes that came with the disease and her. He could never comprehend the disease, referring to the situation as..."she's just being stubborn."
If others here have a similar situation where one parent is caring for another with dementia or Alzheimer's, be aware that caregivers, young or old, can be driven to anger, resentment, neglect and quite possibly abuse. It's understandable. This ugly disease can bring out the ugly in even the most patient and docile and loving person providing care or attention...behind closed doors...
Thank you all for the rsponses..I will check back in. Bless our parents as they are so helpless and lost too.
God bless you all and I'm praying for you if you will pray for me!
To Waverun: get as much help as you can, take breaks, pray a lot and TRY to get enough sleep. Hope some meds help her calm down some, but sooner or later, you (alone) won't be able to give her what she needs. We can't "fix" them as much as we try. I struggle with trying to be in "her world", but it's easier on us both when I do! :-)
Do you know what kind of dementia Mother most likely has? Have you had discussions with her doctor? I think you'll feel much more comfortable in your caregiving role as you learn what to expect and ways to minimize her impact on your well-being. I won't promise you that you'll never lock yourself in the bathroom and cry again, but the caregiving role can get better, even though your mother will not.
Best wishes to you, bekwalk,!
Some information to include: Who has POA? Who are these relatives that won't let the money be spent?
A weekend is a long time to "show-time" and if it is happening, it is no wonder that it takes her a long time to get back to "normal" for her. I wonder if it is partly show-timing and partly wishful thinking on the relative's part. The longer they can deny the problems, the more justified they can feel about not spending the money. By the way, are these folks by any chance expecting to inherit from MIL?
Many aspects of dementia behavior, such as delusions or show-timing or sundowning, are not limited to a single kind of dementia.
Alzheimer's is the most widely known form of progressive dementia, but it accounts for only about 60% of all cases. That means that nearly half of the dementia caregivers on this site are dealing with some other kind of dementia. That doesn't mean we can't learn anything from the ALZ organization. I just mention this because if you find information about Alzheimers that just doesn't fit your loved one, don't be surprised or dismayed. Your loved one may have a different type of dementia. Take what fits and works for you.
And I agree with you, lildeb. Education is the single most valuable tool in caring for someone with any kind of dementia.
My mother awakens in a sweet mood and then turns into a monster. Insults me, calls me ugly, skinny, tells me she wants me dead of a terrible disease. Sometimes it goes on all day long. I, too am lost. I close my bedroom door and keep my two little dogs in with me when she has these outbursts. She bangs and bangs, slams her mini walker into the door, I sit on the floor with my feet against the door, praying she goes away, perhaps forever. She turns the bathroom light off while I'm taking a bath (the switch is outside the door). I had to buy a lamp to keep in the bathroom. She, too, was my best friend, my only support system. The only difference is my mother doesn't care when I place my hands on my head, all she cares about is herself and the so called "person I am suppose, here to strictly take care of her." Ouside the apartment, she's still crazy. When we take a cab somewhere she calms down. She has been a horror show to every doctor we've seen. She's OK with her PCP, but that was over a month ago. She hits the woman that does her hair and uses foul language. Says terrible things to the hha and then apologizes when we tell her what she's done. I spoke to her psychiatrist today and he said to increase the resperdol to 2 (0.25mg) three times a day. The HHA just left and my darling mother just scratched my hand badly. I really think this pill is making her worse sometimes and I told him that. I have two job interviews tomorrow. Nice, scratches on my arms and hands. Something has to give. I really don't want her around anymore. She's too bitter and hateful. Of course there are those moments of, "Oh honey, you look so tired, why don't you rest for a while." Thank goodness she is now in her bedroom lying down. The psychiatrist told me that this causes her pain too, that is why it's best to try to calm her down. I pray to god that my little dogs and I survive this never ending nightmare. She said this to me last night, "I don't know what's wrong with me, I am just not right." This disease is worse then then any disease known to man.
This disease is worse than any disease known to man.
Something has to give.
This is painful to Mother, too. She can't help it. You love her. But the bottom line is that no one has to tolerate abuse. You are being abused and something has to give. I know that adjusting her medications is one attempt at making something give. But it is not sufficient. Something else seriously has to give.
Forgive me if you've told us this before. I participate in a lot of threads and my memory isn't as keen as it once was. (Is dementia contageous?) Why are you and your mother living together? What alternatives have you explored?
Bless all of us caretakers.