How do you handle a misbehaving parent? My Mom has ALZ and lives with us whenever we have company in she refuses to look at them or answer any question that is asked. We just had company in for a week and she got to the point where she would not even look at me, I had to bend down to see her face. I know she was upset because they were here and now that they are gone she is attempting to be pleasant but I'm mad at her. How can she say 'oh your company is gone' when she refused to acknowledge them? I already feel as though I have no life because of her so I'm not about to stop having company visit us but it really bothers me the way she treats them so badly. Naturally the visitors understand her condition but they tire of the treatment as well....then it's the 'poor you doing all this for her - you have no time for yourself..etc..etc' attitude which I hate.
As to your question...my LO does the same thing, but worse...he makes racially and socially offense comments in order to piss the family/visitors off enough that they will leave. What I did...was pull each one aside and explain to them that he WILL say something so offensive at some point that you will be shocked. Know it. Expect it. Ignore it. It seems to have given the family some sort of feeling of impowerment and it's been working great. I give him a short verbal 'correction' (Weewee, you can't say that. It is inappropriate.); do not reply to any response he gives and then divert him with a question about food or tv.
withdrawing from social interactions is normal with dementia - even at the earlier stages.
Demboots, where are you? Have you decided to abandon this site because you no longer read the words that you feel you deserve to hear, words that support your unrealistic expectations of the behaviour of a person with a neurogenerative disease? Do you want us to actually support those unrealistic expectations? I think (again, MY opinion) that your mother would probably be better off in a nursing home. At least there she would have a fighting chance of getting care from those who do not resent her very existence.
We as caregivers are all experiencing the same emotions & feelings but how we differ is the fine details & at what point we are at in our own lives. It's like the stages of grief. We are all grieving. We all put our lives on hold but the world keeps on moving around us. Because of this, the direction of our lives are altered. This doesn't make one person more special than the next. Also, we are losing a loved one. It is a loss. It hurts. It needs to be dealt with. There is the denial, the guilt, the anger and until we can understand and accept the situation we are now in at present, we will be forever lost. It's a process one has to work through. Anger is a very powerful emotion & until one faces reality, it will cripple you & the person one is caring for.
People, please don't come in after my earlier response & mistake my tone for harshness & rudeness. Well, the first graph, yes, but I was trying to make a point. The rest, you can't please everyone with delicate sensibilities in this world. Why try?
See, we are all unique individuals. It is illustrated how we approach these boards. There are people who choose to answer a question by actually not answering at all. One instead essentially shares the same situation they're in. It leaves (at least this reader) the comfort that one is not alone. There are others who choose to answer by further insight. By the time I answered, there were already enough good insight about dealing with ALZ. I wanted to talk about the disease itself. That is really the issue. I also did not want to respond in such that I am enabling someone to continue to wallow in self-pity. I just wanted to offer insight into the disease because it is a losing battle but accepting it doesn't have to be. I admit, I started my answer with "Really?" because I wanted to evoke a certain response. I wanted to fire Demboots up. That is how one's true nature comes out. Again, that is how one's true nature comes out. She showed her true colors. Does one want to be receptive to information & insight & face it head on or shallow, enabled & stunted. I wanted to explain the disease process because for me, knowledge helps with understanding & that leads to acceptance of why things are why they are & why they can't be changed. That is where the power lies. It helped me to move on. Sure, I vent. I just choose to divulge to those who directly impact my life. If this makes for a superior attitude, then I say to that person, get out of your comfort zone. Don't agree to just agree. Challenge yourself. You may learn something. Don't enable someone to be emotionally stunted. That is a disservice to mankind. A thinking person or someone who truly wants help will be receptive to all information, process it and make it work for the reality they are in. If one listens but doesn't hear, one can't move one. Especially to someone who comes across as self-centered.
What do people truly want as a response to a question? Read all the responses by Demboots. She is trying to evoke as she says "tough love" to someone who is essentially mentally inferior to her now. It's unrealistic & cruel. This is not the coming of the minds of two equal adults. Like I said in my earlier post, one has a neurodegenerative disease. Big difference.
Demboots, I hope you are not bullying your mother with ALZ. There is so much anger & resentment in your words & mindset when you are challenged. It has to go somewhere & it is usually directed to the source. You should take advice from someone who has way more experience than you do or just as the casual observer. Lose the "I, I, I, me, me, me attitude." Stop your whining. You come across as senseless & you sound like your heart isn't in it to be a caregiver because with all you say you've researched, you would know caregiving is about giving of one's self. It is a selfless act. You shouldn't expect to be always rewarded for every good deed you do. Your reward should be knowing you made a difference in someone who needed your help. You made the decision to care for your mother. If you are so unhappy, get out now. It will benefit both of you in the long run. Things are going to get a lot more challenging. Believe me.
The next day I reread her message and felt only anger. Demboots accused some of us of being rude and harsh. Does she not think that HER response was also rude and harsh? Like so many of us do, I took precious time out of my very scarce "me time" to respond a fellow caregiver--NOT to be rude or harsh but to provide information that has helped me in the past.
Demboots, you are not the only one who has gone through what you tell us you have gone through to support your mother. Many of us have been doing it for a lot longer than you. Many of us have also given up lucrative employment (in my case it was also a $150,000 basic salary in a very prestigious career). Some us have made the choice to stay at home to be the caregiver. Some of us have had that choice thrust upon us. None of us really WANT to be caregivers. We would prefer our loved ones to die in their beds aged 100, smiling sweetly all the time (!) but it is not going to happen.
Yes, I agree that your situation is unique to you. I cannot understand it. But I know what MY situation is like and I know what helped me in other similar situations--help which I will gladly share with anyone. (And I will tell you that the book I suggested, out of the MANY books and articles that I have read, DID make a difference to my mindset and attitude.) Readers can make another choice about given advice or suggestions--take it or leave it. Let me assure you, being a member of this forum for a number of years and having read much advice, some good, some not so good, but also from some very wise caregivers, I truly believe that everyone who responds does so out of compassion and a desire to help--not be "rude and harsh". I did not waken up last week and think "I must be harsh and rude to someone on the Aging Forum today". I don't think that any of us do so.
And Demboots, if and when you read this, please be aware that I have, once again, taken up some of my precious "me time" in an attempt to comfort you with the assurance that we are not all "out to get you". I hope you believe me and continue to visit this site to vent, to moan and groan, even to record your victories (there WILL be some)-- and maybe even give some of us the benefit of your wide experience and what worked for you. (For example did "the time spent in ALZ glasses" make any difference to how you understood dementia? What did you find out about the medications you researched? What have you done to improve your health? Is it working? (Poor health is common problem for many of us). These are things that some of us, at least, want to know.)
To get back to your original question: I wish I knew what to suggest. I don't have that problem. I wish my husband COULD be rude to visitors except (a) we don't get visitors anymore (and we have no family at all in Canada) and (b) slowly, but surely his voice is disappearing altogether. For someone whose career depended on his voice--he taught languages at university for more than 40 years--this is a double blow for both of us.
What helps me is "Those who care, don't care."
Mama has always been a very loving and caring woman and she now lives somewhat in a little world all her own. As another poster commented, the Mama I knew is forever gone and I think it has taken me a lot of years to accept that. We don't get a lot of visitors, for which I am finally thankful, at first it made me angry, but I also noticed that Mama did not like most of our visitors, even though she was one of those who always opened our home to everyone freely...you could walk in here and immediately she would make you feel that you were part of our family. now she does not become vocally rowdy, other than an occasional ugly word (which she has never done in her life) and people who hear her do that think it is so "cute" or funny...it is just hurtful to me because this is not who she is.
I had invited a cousin to stay a few days with us this past weekend plus a couple of days and this is a cousin whom my Mama has always loved very much. I was amazed at how quickly she became weary of her. (I guess I did too to be honest because she was a handful) but Mama actually stopped eating (she has nothing but ensure now but that is her eating) but just flat out refused to eat....two days in a row, no matter how hard I tried...I offered it but she refused and I have learned to just offer it and let it be....(Mama is also totally bedfast to the point that she cannot lift her arms or assist me in any way)....anywhoooo, I finally knew I needed to get my cousin home, so even though she hinted to stay another day or so, I quickly began gathering her things and took her home while Mama was napping...
Sure enough, when I got home, and Mama knew it was just me and her, she began to drink her ensure again....I guess I somewhat wish Mama would yell at someone...I miss her voice so much...
So while I can't identify with your particular exact situation, I do understand the total frustration you may be feeling...and I hope it helps to know that sadly, your loved one truly can't help it...I have had to realize that, otherwise I don't think I would have ever come to terms with such a severe change in her personality...I know it doesn't help much...but hopefully it's something....
And the rudeness issue...I do understand that too....when I have had particularly trying times or periods of time, some of our advice or comments may come across as rude or harsh or bossy...I hope I have not made you feel that way...Truly none of us can totally feel your pain because each of our situations, though very similar in many ways, can be so widely varying it is incomprehensible...I hope you will stay...there are a lot of sweet wonderful folks on here....I think all of us care...we are all just different in how we try to show it.... :)
Today Mom was rude to her caregivers, would not even look at them. Then last Friday she kicked her bath mat and threw things in her bathroom because her caregiver wanted her to take her shower and apparently she did not. I'm guessing behavior is due to her not being the center of my attention but she is the center of attention for her caregivers. Today I told her if she continues to be combative and not treat them nice she was going to have to go to a nursing home because I can't and won't give up anymore of my life for her. I feel like I'm doing tough love!!!
You need to stop thinking like a healthy adult with all reasoning & thought but as someone with a neurodegenerative disease. This is your mother's mindset & why she is acting the way she does. It's not a conscience choice. The topography of the brain of an ALZ patient vs. a healthy individual (like yourself) is great. Look up "cerebral atrophy" so you can get a visual. Notice the tissue loss. Again, notice the tissue loss. As the disease progresses, so will the spacing & "holes" appear. When we lose brain tissue, cells are lost or the connections between them are damaged. This is brain damage. When you speak of moodiness & behavioral changes, this is why your mother is acting like she does. Again, it is not a conscience choice. This is something she cannot control, however it may seem. Sadly, at this stage, the disease has progressed & will continue to worsen. She will come to a point where she won't be able to say anything. Are you going to then say she is being rude & ungrateful for all the sacrifices you have done for her because she won't speak to you?
You also need to realize that the mother you once knew is lost. I think that is hardest of all. On the outside, sure, she is an adult & it carries a lifetime of memories. However, on the inside, she is like a child. Each day, it's like taking a step backwards. She interacts with you because you are part of her long-term memory. You are familiar to her. You bring her comfort & she is dependant on you. When your friends come over, these people are "strangers" to her & are part of her short-term memory. It is a change & it makes her uncomfortable. ALZ patients need simplified routines. When that gets disrupted, she doesn't have the reasoning to be cordial & "behave" like you want. It's worse than being a kid because you can get kids to behave. Also, because she can't articulate with words, she is expressing herself the only way she can. (Just a side note: Ever notice how people interact w/ the elderly. How they talk in a "baby" voice to them & say things like "look how cute he/she is" & "he/she is sooo adorable." Really? Let's be dignified when we talk to the aging population.) Your mother can't interact with people like she used to. She senses that in her own way.
If your visitors really understand, they wouldn't be getting annoyed. Guess what, it's not their problem but shame on them all the more if they can't be more understanding. It's 24 hours for you & for them a short while. You hate their attitude? Be direct & say something that lets their jaws drop. One less thing you'll have to worry about. You don't like how your mother interacts with your guests, then separate them. She will not be the one to change because she just can't.
It is really hard to deal with someone with ALZ & age-related dementia. I often question am I the better caregiver because I know my grandfather. I know my grandmother. I am not some stranger coming in. I have memories & they are my elders- the (grand) parent & I'm the kid. I think the thing you need to do is separate the reasoning from reality. Accept that the roles are now reversed.
Your mom isn't who she used to be. You can still have people over, but I would stop with the week long overnight houseguests. Besides the old saying about houseguests and bread, they both get stale after 3 days.
Offer to pay for their hotel due to the situation at home, many people do that for out of town guests anyway for much less dire reasons.
You absolutely do have every right to invite people to your house. It is incredibly annoying when you get the sympathy/pity bit shoved up your nose by your understanding friends. It is embarrassing and tiresome when your previously polite, socially skilled parent suddenly trots out incredibly personal remarks and/or cold shoulders your guests. So I agree with everything you've said, I really like Terry's suggestion of calling in a "minder" to help, and in conclusion: this is probably just one more thing to feel justly pissed off with AD about. It too will pass.
And then again, there's the old "mind over matter" consolation. Guests who mind don't matter. Guests who matter don't mind. Please accept a shoulder rub from me - and don't stop inviting people round!