I think some seniors think they have a sense of beck and call entitlement without any respect for the person giving the care.

My Mom has chosen not to speak to me on a few occasions also and just gives that stare like what are you doing to me? or can't you do something to help me. When there is nothing more you can do at that moment to make there displeasure with there situation go away. I chose not to visit her for two days because of her nastyness when I sat with her at a Doctor's appointment and all she could do is moan and complain she was not being waited on soon enough. Like she was the only patient to be seen. I think of dementia as not having a good memory but I think it is more then that, if she has it, no official diagnosis has been made. Like someone on here said it is an entitlement they feel. They almost are mad at the world for still being here.

My MIL is emotionally cruel in two different ways. For one, she has a long history of using the "silent treatment" on others. She still does it with her dementia and it hurts my feelings as her caregiver. Sure, a lot of it is the disease but some of it comes quite natural to her. The other way she can be cruel is...................to change up her behaviors. Sweet to visitors, then nasty to me once they're gone. Is that sort of passive aggressive? I don't know. I try to distance myself emotionally but her bed is right smack in the middle of my living room in my small house. She can pretty much stare at me from about every angle lol. Sorry all. I'm just venting. I chose to do this and will continue to do so. Just getting it off my chest.

It is trying to say the least to see someone who needs help then refuses the work and effort on everyone's part to make that happen. I love my mother dearly but she is really testing her boundaries of control. It Is one thing when she unleashes on my sister and I we have gotten used to it well at least I have to a point but, to make everyone jump for her is getting out of control. How can someone get through to her that it is not ok to boss people around, when they are just doing their job and let them do it. Just venting, but I understand why people have to do what they do but I cannot seem to explain it to her.

I am the one who started this thread and when I read over my comments I feel bad in the way I portrayed my dad. When I attempted to do it myself, I thought I was doing the right thing but I had no idea the spectacular feat I was about to embark on by doing it with very little help. The stress was so overwhelming that I changed and was not very pleasant. It simply was not the right thing to do and when he was put in a nursing home, it still was hard to do but knowing even though nursing homes are chronically understaffed, there is at least more people to share the burden of caring for someone who has declined to such a point that are unable to anything for themselves.

Sharing the burden of caring for an elderly person is not only wise and smart, but is necessary for the caregivers mental, emotional and physical health. It is incredibly hard to watch a love one become so feeble and weak but it is a reality that will face us all and proper preparation and knowledge will help you navigate this very difficult journey with those that you deeply love.

My dad passed away about a year and a half ago and not long after he passed away, I got hit by a drunk driver resulting in a cervical herniated disc, a totaled out jeep and job lose. My life was greatly impacted by this life event.

My point is that caregivers are not wonder women or wonder men, we are just human with our own weaknesses and infirmities but some how have the uncanny ability to relate on that human level with those who declining and will eventually die.

Please understand that your needs are just as important too, even though you desire deeply to meet the needs of those you care for and love.

EmilieK, would it be possible for your mother to pay for some caregivers for her as a shut it. I'm sorry to hear that your husband is in a care facility. I read on your profile that he has cancer. I read on another thread that he has dementia. What health issues does you mother have?

I'm tired, I care for my Mom who is elderly and a shut in. I also cared for my husband who had Alzheimer's he is now in a care facility. Mom takes up most of my free time when I am not working, I clean homes. I hardly have time to visit my dear husband in the home. we have been married 37yrs.... I'm tired and lonely.

Thank you Jeanne,

If my dad were a little more independent it probably would have worked for more time but he kept falling at night when I was trying to sleep and I knew his needs obviously have changed.

As far as his airplanes I don't know at this point because he was just admitted this past Friday when my brother and his wife came to pick him up at the hospital to take him to the facility. It was about a 4 hour drive and after I spoke to my brother, he said he did ok.

I am still out here in NW PA and in the process of packing all my stuff. On Friday I will be moving back that way. So as soon as I get settled, I will go visit him. I will probably do his laundry and see him about 2-3 times a week if he wants me to.

Thank you for your kind words and yes I will keep updating.

Cindy

Cindy, thank you so much for the update! It takes real strength to not be shackled by guilt or the fear of guilt, to figure out the Right Thing (or the Least Wrong Thing) to do, and then to move forward doing it.

To be able to visit Dad as a loving daughter and to not have responsibility as a harried caregiver should be a big improvement for both of you. And if your visit occurs when he is in a bad frame of mind and he is disrespectful you can cut that visit short and tell him you will be back later "when you are feeling better."

Are you going to be able to hang some airplanes in his room?

I wish you and your dad and your brother all the best. Please continue to update us. The stress isn't over, but it should be more contained and manageable for you now. Let us know how you are doing.

Do not feel guilty. Nursing homes are not perfect, but it is a far cry from what happened to dementia patients a hundred years ago. They were placed in insane asylums, drugged, tied up and left to their own.

Just an update if anyone is interested. I moved my dad to a facility near my brother and I am moving back there with him to start over and now both of us, my brother and his family and myself can visit him on a regular basis.

Did I feel guilty about making this decision? No, because his needs have clearly changed. We have not lived together in two years, and I was unaware of his needs until he moved in with me. Clearly his health needs have changed and far out number my ability to handle them all by myself. I felt it was and is in HIS best interest and safety to be in a facility that can look after him 24 hours a day with shift change and a refreshed staff unlike myself who was sleep deprived and not very nice at times because I was so tired. Which leads me to the next question.......

Do I feel guilty about how I treated him at times (even though he treated me poorly at times)? Yes, I do, but I realize I was so tired and burnt out that I just could not handle it anymore. I was so overwhelmed that I imagined running away and disappearing. But we are still taking it one day at a time and I am relieved that my brother and his wife helped out! I am very grateful for there compassion.

So to all of you who are considering nursing home because you are burnt out.......please do not let guilt make your decision. Let common sense and wisdom make that decision for you. The best part is that I will be moving back to "civilization" (not that it is bad here because there are a lot of wonderful people here) and my dad will be there too, so I can at least still visit him on a regular basis. And now my brother and his family can visit more often as well. I was trying to arrange that for some time because I know if he went into a nursing home here in rural NW PA, I was going to move and then I would have felt guilty for leaving him here, unable to visit.

It also turns out that the doctor in the hospital (that he was admitted to), spoke with me on the phone and mentioned that he has mild demential. Periods of confusion and some memory problems, so I knew something was not quite like the dad I had known for many years.

Jeanne,

"Taking care of someone who years before was abusive or neglectful of you is beyond what is expected of you. Caring for a family member who was or is physically or psychologically abusive is dangerous. Feeling as if you want to retaliate is also dangerous. These are justifiable reasons for NOT being a caregiver."

Thanks for the quote..........the most lucid quote I ever heard!

That is why I am in the process of moving him into a nursing home and hopefully that will be soon!

Yes, Cindy, my memories of my "real mom" (as opposed to my "demented mom") are of a kind, loving, nurturing, self-effacing, non-demanding, pleasant woman. And my marriage was as far from what you describe your parents marriage to be like as you can get. Frankly, I can't imagine going through this journey with either one of them if they had been abusive.

Here is what therapist Pauline Boss has to say on the subject in her wonderful, compassionate book, "Loving Someone Who Has Dementia":

"Taking care of someone who years before was abusive or neglectful of you is beyond what is expected of you. Caring for a family member who was or is physically or psychologically abusive is dangerous. Feeling as if you want to retaliate is also dangerous. These are justifiable reasons for NOT being a caregiver."

She goes on to write that in most cases she recommends being involved in the patient's care at a distance, usually through a social worker.

Cindy and Steve, as much as I am free with advice I fully admit I don't have personal experience taking care of someone who sucked as a parent or spouse. Personally, I don't think I would do it -- at least not up close and personal, living in the same home with them.

Steve,

Thanks for your encouragement and yes you are right we do need to get away and socialize with others who are not dealing with what we are, but I was never really a social butterfly and never ran with the herds. I tend to be autonomous and I enjoy being with my cat.....believe it or not! So the lack of a social life doesn't bother me so much as the demand of constantly having to be "on" for someone else. It is draining. I am inspired by your care of your mom.....is that right? Usually men are not the caregivers cleaning up poop and bathing an adult so you are a pleasant surprise and I understand you wrote a book about the woes and humor of caregiving. We definitely need to see humor in this life and I love a good laugh!

Jeanne,

I see what you are saying about the adult with dementia can not learn like children can but my dad has at times throughout my life and in my parents marriage, been extremely insulting and disrespectful. My parents fought constantly, verbally insulting one another, fighting and when I was 11 all I ever heard was one insulting the other.........so much for the fantasy of marriage! WOW, I sure got a putrid taste in my mouth concerning marriage at a very early age. You could say I was whipped into reality quite early in my life. The drama was overwhelming and the lack of love in my house was not a disease but rather one's inability to humble themselves and forgive for the sake of peace and harmony.

But with my dad, the biggest reason I think there may be some kind of cognitive decline is because he does not sleep at night and gets hyper when he should be going to sleep like most normal people. Kind of like "sundowners". But I will continue to set boundaries and keep my distance for my emotional and mental health, otherwise they would have to commit me to an institution and throw away the key!

My grandmother had clear full blown alzheimers. She had TIA's which are basically a prelude to the big one, to which she did indeed die of. But my grandmother never knew my name when I helped my mom take care of her when I was in my early 20's. My mother chose to care for her mother in the home. She quit her job as a RN and got paid out of the will money to care for her FT. She did it for 7 years but it took it's toll on our relationship because we do not speak much anymore and have not for years.

Your idea of deferring the behavior to the "disease" necessitates good boundaries and a healthy understanding for the caregiver but in no way tolerates abusive treatment to the caregiver. And yes you are right, it is heartbreaking to see someone who was once fully functional to be fully dependent.

But I will tell you that it is unfortunate that there are many fully functional adults who still act like children by using manipulative tactics to get what they want. They are still quite immature. I have met many of them through the years. I sure hope that I always examine my motives to be sure that I am not one of them.

It seems to me that you have memories of a pleasant mother who was good to you and yes it is sad to see your mother decline in the way that she has. Dementia and Alzheimer's are sad to see especially when it is with someone we greatly admired and loved throughout our lives.

clh777, I want to respond to one aspect of your story, because I have been thinking a lot about it this weekend, and discussing it with my sister.

If Dad has dementia, how come he changes his behavior quickly when his airplanes are threatened?

Having dementia does not mean not having a brain -- it means having the brain seriously impaired. There are plaques or protein deposits or tangles or whatever the pathology is for their particular type of dementia. Even a five-year-old understands "If you continue doing A, I will start doing B," especially if they see the action and it not just words. That your father can understand that taking down the planes is painful to him and that maybe he can stop that if he stops making noise does not mean he does not have cognitive impairments. It does not even mean that the cognitive impairments aren't what caused him to make the noise in the first place. It just means in this instance he retains the reasoning power of a five-year-old. But here is the heart-breakingly sad truth: Unlike a five-year-old, he may not be capable of learning from the experience. Children become older children, with increased reasoning ability and increased coping skills. We generally don't have to teach them the same thing over and over and over. Eventually they become adults. Their reasoning capacity may even exceed ours! We do not have that to look forward to when loved ones have dementia. Their cognitive abilities are most likely going to decrease. It is heartbreaking.

Meanwhile, I agree with Dunwoody that caregivers should not tolerate abuse. The concept of "respect" might be too abstract for someone with dementia, but "no hitting" and "no making noise in the middle of the night" and other behavioral rules are certainly reasonable.

My mantra became "This is not my husband's behavior. This is the disease." That certainly didn't keep me from being blurry-eyed and slow-witted when the disease kept me from getting a good night's sleep, but it helped a lot in preventing emotional exhaustion on top of it.

Now it is my Mom whose dementia I am coping with. New mantra: "This is not Ma treating me this way. This is the disease." Heartbreaking to watch it happen to her. But I know with all my being that Ma would not treat me this way if she were fully in charge of what she is doing. Knowing that helps me emotionally. That she is still capable of the level of manipulation a grade-schooler can manage does not change the fact that she is no longer operating at her former adult level.

Yes, Cindy. Your story is sad and I can imagine you face every day not knowing what's going to hit you. We MUST find a way to protect ourselves -- whether through humor, emotional distance or some other tactic. Sure, we do whatever it takes to protect our parents and make sure they are as comfortable as possible, but after two years of this, I will be damned if I'm going to let it put ME in the hospital. Even with money tight, I now call in professional caregivers to give me a periodic breather. I go out and force myself to socialize with others -- not involved in similar situations. We all have an inner strength we often don't know exists. But it's there, but we must call it up in ourselves. God Bless you.

Steve

I wanted to talk a little about my dad. I realized when I first started posting on this forum it was more to blow off steam and vent but I just want others to know that I appreciated your responses even though I know I wasn't fully engaged because my emotions were overwhelming me.

I have since spoken to my brother and we talked for about an hour on the phone and I explained fully the situation to him especially when my dad accused me of gross things and tells others in the community behind my back. I do not trust him. My brother spoke to my dad and it helped a little because all day yesterday, he was wonderful. My dad was compliant with wearing diapers, allowing me to change his dressings for his wound care........he has a large wound on his leg to which I am taking him to the wound clinic every two weeks to be debreeded. We just went to the cardiologist and had repeat echo done and it showed pulmonary edema (he has CHF). So I know he is getting worse. I am fully aware of that and that is why he needs skilled care that I can not get him. I also know that he feels miserable, and he has communicated that to me. I am sorry he feels miserable and I understand that part. His independence has been striped from him and he is just waiting to die. But I know he is definitely taken his misery out on me and it has been overwhelming me.

Last night about 2 am, he wakes me up making all this noise and he knew I was trying to get some sleep. I had been with him ALL day helping him with anything he needed. When I asked him to get back in bed, he did comply but I took away his wheelchair because I felt he would only get back into it and do the same thing he had been doing....making so much noise. He got mad at me and purposely got out of bed and fell on the floor. I watched him do it ever so carefully so he would not hurt himself. He then proceeded to crawl (he is an amputee) out into the living room to get his chair all the while calling me nasty things and telling me he will just keep me up all night. He continued on with his verbal abuse towards me so I dared to pull out my ipod and record everything that went on.

Fortunately I remained calm by the grace of God and remained as objective as I could and I detached myself emotionally from him so I would not get upset and respond to his "behaviors".

So here is what I did........because he would not listen and kept acting like a child, I took all his model airplanes down from the ceiling that I hung up hoping he would enjoy. He is a WW II airplane lover, building them and collecting them through the years. They are expensive copies but I took them all down and told him that they are going away because he does not treat me right and I will not tolerate his abuse in my home. So I quietly went about taking each one down and funny how QUICKLY he responded by crawling back to his room to get in bed. He was suddenly VERY obedient.

Part of me is trying to understand his behaviors whether it is alzheimers or just selfishness and severe childlike behavior. I am certain he has a touch of alzheimers even though it has not been diagnosed by his primary care doctor because he is extremely active at night and remains somewhat calm in the morning and throughout the afternoon. But my question remains is if it alzheimers then how come he listened to me and I was able to reason with him when I took away his airplanes, you know just like how you would discipline a child. This is why I come to the conclusion many times that he does it on purpose to either push my buttons, get me angry with major emotional responses, and cause me severe anguish. I am sorry, but he knows what he is doing.

The hardest part for me to which I am sure most of you can relate is that I have been the one here for him for the past 6 years. I even moved out of this extremely rural area back in 2008-2009 because there was nothing to do here and I was living in the suburbs of Philly before I moved out here. When I moved away I was the only one calling him and found out that his stocking got caught in his prosthetic device and he tried the doctors office but no one would help him. I ended up driving several hours out here to take him down to the prosthetic office to get him fit for a new one. That is why I moved back here to be with him. To be fair my oldest brother and mother were coming out to see him back in the early 2000's to help him and they were involved somewhat but when dad has his leg amputated, I put myself out there to assist him and my oldest brother and mother have since moved out to Arizona realizing that because I was here it was no longer their problem so they were free to move on with their lives and live without guilt.

I do not know how much longer he has to live. I really honestly feel bad for him because I know he feels awful. He is cyanotic and I can't seem to get an pulse ox on him but his wound is improving. Maybe I should call hospice......I have been thinking of that more and more. He has a hospital bed already and he is now wearing the diapers because of incontinence.....a fairly new condition.

Dunwoody,
You are right that life is not fair. I have learned that lesson far too many times but I do know that if someone is abuses us we have every right to demand respect by clearly communicating that we will not tolerate disrespectful attitudes and behaviors.

Thank you for listening.
Cindy

I only hope I will never demand from my children what my mother expects from me. The sense that they are entitled is bullshit, especially if they sucked as parents. Life is not fair, but only we can demand respect. No one else will grant you that. Not even the parents who are supposed to be the ones who loved and supported you the most. And often never did.

Thank you so much Jessie......your encouragement means a lot. You are definitely right about the bullying. Sometimes I think I have a bully me sign on me. I have already been stalked by some guy who did not respect my will or consider my feelings. It wasn't until I called the police that he finally knew I meant business. He absolutely would not respect my will.

I have worked in many nursing homes as a CNA and some Seniors will demand all your attention even though you have 10 to 12 other patients to help. But what frustrates me the most is that I have to yell to get them to understand I am very serious.

I know what you mean. My mother and I had a day from hell. She made up reasons to be mad at me all day. I try to calmly take it, because I know she is not right mentally. The last episode tonight I told her that I needed to move out, that I couldn't live like this anymore. She suddenly got very sweet and apologetic when she thought she was losing her only chance to live independently. It sounds a lot like you're going through with your father. I don't know why they do this. It is really like bullying. Many times bullies will back down when someone stands up to them.