QUESTION for anyone & everyone!!

Discussion in 'Caregivers' started by Milo83, May 10, 2002.

  1. Milo83

    Milo83 New Member

    Hi Everyone,
    I have posted on here a few times before..To give you a brief summary of my problem..I took care of my mom for 5yrs after the death of my dad..Approx. 1 1/2yrs ago, she took real ill and needed surgery and then had to go to nursing home..She really will never be able to leave nursing home, but no one ever told her, just said she has to take it day by day & so on..Mom is legally blind, suffers from dementia, can not walk without use of walker and someone right by her side holding on to her..She is starting to question if she will ever get out of there..I personally feel I can't hurt her like that & say, no you will most likely be here the rest of your life..I could bring her home, but she needs 24/7care & would have to do it all by myself..
    MY QUESTION: Shouldn't it be the Dr. who tries to explain to my mother why she can't come home..That she needs 24 hr care, the kind a nursing home can provide..The nursing faciltiy she is in is really great..But just the other day at a meeting for my mother, they seemed like I should be the one responsible for telling her..We were just letting her think, we take it day by day..But now her roommate just passed away, and my mom thinks she has some terminal disease and she is dying and that is why she can't come home..
    ANY SUGGESTIONS AT ALL WOULD BE TRULY APPRECIATED..Sorry this was so long...Looking forward to hearing from some of you..
    Take Care...Best Wishes...
  2. Shirl

    Shirl New Member

    Donna, my Mom was a person that was extremely
    afraid of dying all her life. She went to one funeral in her life, her own.

    When we found out she had cancer, and only had a few months to live, we did not tell her. She stayed with my brother and we let her think that she was just recovering from the operation (they operated on her for gall bladder, and it was cancer, fast moving and nothing to be done).

    As it happened she only lived for three weeks after the operation. But she died in a more peaceful way thinking she would go home as soon as she was well.

    This happend thirty years ago, and I am not sorry that we deceived her. She was not the type of personality that could have handled the truth, the fear alone would have tormented her in her last few weeks of life.

    The decision is yours, and you know the type of person your Mom is. So you can only gleam from our own experiences here.

    Take care, and I will offer a prayer for you and your Mom, if you want me too.

    Shalom, Shirl

  3. Milo83

    Milo83 New Member

    I want to "Thank Everyone" for your replies..Yes, I do know my mother better than anyone when it comes to how her mind works and her health issues..I strongly feel that she should not be told, her chances of coming home are next to nothing..I will not personally tell her because I know she will give up then..And the Drs. can not directly come out and tell her without my permission..In the past few weeks she has "perked" up a little..By that I mean, I think she is putting more effort in making the place her home, going to activities and things like that..Up until a few weeks ago, she refused to leave her room, except for lunch in the dining room..Just have to take it one day at a time...
    Thanks again...Take Care Everyone!!!
  4. Milo83

    Milo83 New Member

    Hi everyone..Just wanted to update you on my Mom a little..The past week or so she is going up & down when it comes to how she is feeling..They put her back in physical therapy for awhile because she hangs her head so much that sometimes it is even difficult for her to eat or for someone to try to help her..One day she will walk OK, (with use of walker and someone holding on to her with a transfer belt); the next day it seems like her knees just buckle and she is ready to go down..I am also noticing signs of labored breathing even when just sitting in wheelchair at nursing home..She keeps telling me, no more tests, no surgeries..She will keep her head straight for awhile and then she lets it hang again, but I truly believe that is partly due to her short term memory loss & dementia..She can't remember to do what they tell her in therapy..I really had troubling dealing with her in the nursing home over the weekend, maybe because it was a holiday weekend..I do take her out, every once in awhile, but I need my husband's help, & he had to help out another family member this week..We just lost my husband's brother on May 2, at the age of 53..So my husband is trying to help his wife with opening of her pool and stuff..Can't be everywhere at the same time..I just wish we had some Magic Solution to everything!!But as I tell Mom we have to take each day at a time..
    Sometimes she is content with that answer, other times she says, I'm coming home, I want out..I just keep telling her, well we have to get you better first..I can't tell her, "you're never coming home"; I just can't..Well I think I've vented enough..But many thanks to all who have answered my posts, & thanks for your concern..
    Take care........Donna
  5. paintergal

    paintergal New Member

    Hey Donna.
    Just found this forum today. Sounds like you n me have a lot in common. Here's my story. Father died in 95. Mom (84 soon) lived independently since then until this year. Has diabetes, high blood pressure, periferal vascular disease and our personal favorite: dementia. (Probably also a little mental illness thrown in for good measure.) Mom has always been a pain in the ––– and has had severe emotional problems all her life. With her developing dementia, it's 100 times worse. No one wants her. Everyone was secretly hoping she'd die quickly of a heart attack to make it easy on everybody. I know how that sounds, but it's the truth. This past January, she needed a vascular operation and needed to be off her feet for a while and rehab. I volunteered to put my life on hold, fly across the country to assist her at home and living for a while. I hadn't seen her for about a year in person, but was shocked by what I saw first hand behind closed doors. (All the typical developing dementia symptoms.) I knew it was time to get her into assisted living, but I had to get her here on my turf first. I'm her appointed POA/guardian, so it made sense to move her here to California. She arrived April 20th with my brother escorting her. I placed her in a board and care home nearby and within two weeks, she fell and broke her hip. She had hip replacement surgery May 1st, developed a MRSI infection (if you're lucky, there's only one antibiotic known to man that will kill it) had surgery #2 two weeks later to clean out the wound because she infected it by picking and scratching and constantly pulling off the dressing, and surgery #3 to yank out the infected hip prosthesis and replace that with an antibiotic coated one to help kill the staph infection. That took place last Friday. Meanwhile during all her hospital and rehab stays, she tore out all her IV's, and drainage tubes, managed to break free of her physical restraints (tore off one of the straps), cussed, spit and sruck out at her nurses, physical therapist, and surgeon, slammed her doctor in the head with the TV remote/call button, refused to eat, drink and take meds. Other than that, she's been the model patient and has only been given Haldol twice! Every time the phone rings, I cringe. I took her out of the board and care home she was at for 2 weeks because they didn't inform me she had fallen and I found out by accident that she broke her hip. I don't exactly know what's to become of my mother because I don't know how this nightmare is going to end. I take it day by day. I have only my husband (who is wonderful) for any support. All the remaining family is back east. They call and inquire about her, but all I ever have is bad news to report. I find myself sleeping more than I ever have I guess to cope with the emotional drain. My back is killing me, too. I see her every day for a couple of hours, but I just sit there doing puzzels in a book I got for her to pass the time. I say a lot of "uh huh's" and "that's too bad's". Doing the right thing is hard sometimes and I often pray to God for mercy for her and for me and my husband. This infection can kill you and she doesn't have a clue. I'm so tired. How did you ever manage 5 YEARS with your mother living with you? There's no way I could do that. I am a professional painter and haven't touched a canvas since last November. I'm so unhappy because all I wanted to do was help her and now my life is turned upside down because of her.
  6. Milo83

    Milo83 New Member

    Hi..I can fully understand where you are coming from..Those 5yrs of my life were H*** at times..
    She was not that sick then, but always complained about something or the other, ran her to all kinds of drs. and they would find nothing..My mother has also had emotional problems since I was a kid, but always refused professional help (therapy)..She would always try to tell my husband, son, and myself what to do..There were times when we would go away for a whole day and when we got back, she would do the silent routine with us..But yet she would tell her few friends she has, that we have our own life, we should just go..She would also tell everyone that she helped me with household chores..The most the woman ever did was empty the dishwasher and make her bed..She never even did 1 single piece of laundry..Yes, at times I hated it, but I also love my Mother and thought I can do this..There were many times when I would end up in a panic because she was driving me nuts..
    Even though she has been in the nursing home for over a year, she still tries to lay guilt trips on me..I'm trying, and think I'm getting a little better at not letting her do that to me..The nurses in the home even tell me, she is not like that until she sees me or talks to me..She says it's my responsiblity to take care of her..When her mother was still living, she even refused to take her for a day, so her sister could go away once in awhile..I just can't be responsible for her 24/7 anymore..I feel bad that things have happened and she has to be in a nursing home, but it was not my fault..I have some health problems of my own, but that doesn't matter to her, she is suppossed to come first no matter what..My father would have never put up with her s***..My father was totally different, he died in Feb. of 96..
    I have a brother who lives 2 doors away from me, but he never even came to see her when I had her home last year for 12 days between surgeries..
    Now he might visit her once a week at the nursing home..I can't believe the nursing home did not call you immediately when your mother fell..My mother has already fallen and they immediately called me, one time she just scraped her leg on the side of the bed or something and they called to let me know right away..And my mother was never really hurt..The home where my Mom is in is really great, nothing is too much trouble for them..Well I hope to hear more from you..Gotta run for now..You said your family is from the east..I'm from PA...Take Care..Hang in there!!
    Believe me, I know how it is!!!!!!Donna
  7. paintergal

    paintergal New Member

    I learned a while ago not to let my mother get to my heart. I think because I spent so many years living apart from her I began to heal and have my own life. It took many years of reading self-help books and inspirational pieces, meditation and prayer that got me to a point where I am my own person and she can't hurt me personally any more. I know it may sound cold and uncaring, but I look at my mother almost as a stranger to me now and it helps me to come to grips with this whole situation even tho it's really hard. Mother's and daughters have a certain bond from birth. That bond can be good or bad depending on the personalities of each. Ours has never been good and she used to push my buttons a lot like your mom does to you now. The part that I think that probably hurts you the most is knowing everything you do for her is trashed and you begin to think others (family and people around her) believe her and not you. My mother does that with me, too and I just blow it off now and chalk it up to her mental illness and dementia. I don't care what others believe or disbelieve about me anymore. I can't change her behavior others beliefs. I have my life and you have yours. Do the best you can and know that it may never be enough for your mother no matter what you do. My favorite saying over the years about my mother has been: "No matter what I do, no matter how good I do it and no matter how often I do it, it's never enough." You say you love your mother, Donna. I used to say that, too. But over the past few years I've been questioning that sentiment and wonder if I really do, or if I can't bring myself to say I don't and may never have. I know I don't hate her, but I'm not sure if I really love her, either.

    By the way, I saw her yesterday in the hospital and the infection is still there. I wonder when they will finally say there's nothing more we can do. Hello, Hospice? -Tina

    PS My brother's good for s***, too.
  8. Milo83

    Milo83 New Member

    Just thought I'd let you know I was thinking of you and wondering how your Mom is doing..Is she still in the hospital..If she survives this serious infection and they release her from the hospital, where will she be going then..I would think then she would qualify for a regular nursing home, (if that is what you would want to do)..I always thought by this time in my life, things would be going fairly well, my son is getting older (he will be 16 next month), and that I would have some time to myself..It seems as though I'm starting all over again with Mom..Even though she is in a nursing home, I still have to deal with everything for her, I'm her POA..She wants to come home so bad, but I can't do that to myself, nor my husband and son anymore..There were many of nights when we had dinner that my son did not eat because she would start something with him at the dinner table, stupid things..My husband has done everything in his power to do things for my mother, but he says this time, there is no way (with my own health issues) that I can take care of her..He says if it comes down to it, he will tell her..I said no, just let it go, I'll handle it..Right now the nursing home and anyone that knows her just tells her we have to take one day at a time..She only has 2 friends that keep in touch with her, and the one always says there is no way I could do it..Like you said, I always did my best, but nothing was ever enough for her..My dad was totally different..He died of cancer in 96 and never once complained to anyone..He was a quite guy and never butted in anyone's business, but yet you knew he loved you and would be there for you in any way he could..I could go on and on about my Mom..You know at one time, she lived right across the street from me when my son was only about 2yrs old..My husband and I never depended on anyone to watch him, we worked things out for ourselves..But should we have had any type of emergency or wanted to go out for our anniversary or something, & I would ask her to watch my son, most of the time, she would say, no I can't, I'm too sick or come up with some type of excuse..She was the type of grandmother that never really wanted to spend quality time with my son, only wanted to hand him money now and then..Now my husband's parents were just the opposite, they spend quality time with him, played games with him, but if we were ever short on money, they would never let us down as far as my son goes..But they just didn't hand it out, and think that would make everything alright..Understand what I'm saying..Well I think I took up enough of your time..I would really like to keep in touch with you, so please post again and let me know how things are going..
    Take Care........Donna
  9. paintergal

    paintergal New Member

    Hi Donna.

    Well, thanks for your concern and thoughts about this situation of mine. She is out of the hospital...again...and is now in a skilled nursing facility trying to fight this infection. I have a feeling this is where she will spend her last days. After four major surgeries this year, her mind is really trashed. A chunk of her disappears after every one. I spoke with her occupational therapist yesterday and told her the whole story. And it's a sad one, let me tell you. I also spoke with her doctor assigned to her there. Finally a doctor who understands the entire situation and is sensitive to her quality of life. The first Monday after the weekend she got here to California, I took her to the bank and had them notarize a bunch of documents for us including a Durable Power of Attorney for Healthcare. I look back now and think how lucky I am to have that document now because in one short month she's become totally unable to think coherently. As her agent I can fulfill her wishes for her if this infection is deemed incurable. Yesterday I went to see her and to sign all the paperwork (at least 30 pages of it) and the first thing she said to me was "I'm supposed to be dead by now. Why am I still here?"

    Please don't take this the wrong way, but after reading your note to me and others you've posted on this site, I get the feeling you have the need to justify your reasons for keeping your Mom in the nursing home. There is this unwritten "rule" that says if there is a daughter in the family it is her job to care for her parents in their last days. Funny how often sons get out of this duty most times. Sort of like how Mothers get custody of children in divorce cases. It's this "nurturing thing" that women are supposed to instinctively have and if we dare go against this "rule", others or even WE OURSELVES feel as if we're not doing the right thing. People in your family probably don't judge you as harshly as you judge yourself about the choices you've made regarding your mother. You have done plenty. I recognize that and I barely know you. The trick is for YOU to realize that about yourself and to quit beating yourself up about it. I'm no Freud, but I think by continually pointing out all the reasons why you need to keep her in the nursing home, you are trying to convince YOURSELF that you are doing the best you can for her. If you can just accept the situation as it is, and accept your role in it as it is, I guarantee a huge weight will be lifted from your shoulders. Don't let your mother control your life anymore. You have a beautiful family who needs YOU. Don't let your mother consume your life. It's not fair to them. If your mother, like mine, did not take the time to become the best she could be in her lifetime on this earth, it's not our problem to try and make it right for them. That is sad and painful at times. But it's the reality of it. Our mothers have run out of time and there's no fixing what could have begun years ago. DO NOT FEEL GUILTY. This is not your fault. Keep her comfortable as possible where she is. Living with you will not change how happy or unhappy she is now. If she is not happy where she is, she will not be happy with you, either. And in the process, your life will be miserable and so will your family's. Sounds like she's a chronic complainer like my mother and if she lives with you, she will find new things to complain about and you will hear them over and over and over again.

    You must be the one to tell her that she cannot live with you. I finally got the courage to tell my mother one day and found that I had to repeat it several times until she finally got it. It went something like this: "I'm sorry, Mom, but you can't live with me. I have my own life and you have yours. I have important resposibilities and other people are counting on me besides you. You have to try and understand this and I'm sorry if it makes you unhappy. But I need my life and my family needs me. I'm sorry your life was not a happy one and it seems to you that I don't care. But I do and I hope you can find it in your heart to understand my situation, too. If you can't, you can't I guess, but I'm doing the best I can for you and I do care." You cannot pass the buck Donna and have the nursing home tell her this for you. It must come from your own lips if you want to make it the truth for her as well as for yourself.

    Cut the cord, Donna and save your energy for yourself and those in your family who will benefit from your love and care. Especially your son who will be on his own soon and not at your side much longer. Think about what I've said and really try to see the truth and get the courage to say what needs to be said. As painful as that may be. You are a GOOD daughter. Believe it!

    Take care,
  10. Milo83

    Milo83 New Member

    I want to "Thank You" from the bottom of my heart..I think your last posting was something that I really needed to hear..Maybe it's because we really don't know each other that it really sunk into this head of mine..There is no doubt in my mind that everything you posted is the honest truth for me to think about..Tina, it really helped me, after just reading it, I felt stronger and know what I have to do and what I don't have to do..I have done all I can do and will continue to do what I can to make Mom comfortable..But I know exactly where you are coming from, thanks again..
    I also know exactly what you mean about signing all of those papers for her to enter a nursing home..In the past 1 1/2years I have had to sign so many papers..They also have to contact me, when anything needs to be done to my mother because she is not capable of making decisions for herself anymore..I really have to run for now, but please keep in touch and let me know how things are going...Take Care...Donna
  11. paintergal

    paintergal New Member

    Hi Donna.

    Sometimes it takes a stranger to point out things that should be obvious to all of us. I'm glad my comments to you were helpful and got you to think about your situation from another perspective. That's why I personally like finding forums like this. I've received lots of help and advice myself from this and other sites in other areas of my life. One thing crossed my mind after reading your posts and others' replies to them. That is, how many people patted you on the back saying what a devoted daughter you are and how much you sacrifice and stuff along those lines. It occurred to me that by saying these things to you, as well meaning as they were, they were actually perpetuating your circumstance. What I mean to say is by "routing you on", they were confirming your role as the "good daughter" and if you thought or acted contrary to this sentiment, you would (in your mind) be a bad and uncaring daughter. And you wouldn't want to be that. No one does. Then I come along and say, you don't have to be a martyr to be a good daughter. And I think you may have been searching and hoping for someone to actually say something like that to finally validate your true feelings about the situation. This is why I think you may have been feeling guilty. You were torn between your true feelings and others/societies definition of what a good daughter should be.

    I must confess, I printed out my post to you as advice for myself as well because by writing it to you I may have been also writing it for me. I read it for inspiration from time to time. All we can do is our best for the ones we love and care about, but we must put it all into perspective and know we are only human. We must put our priorities in order and our main priority should be ourselves then our immediate family and then everyone else.

    So, in a way Donna you've helped me a little too. Have a good one and enjoy yourself today!
  12. doris

    doris New Member

    Hi Donna and everyone,
    I just now found this wonderful site and I care about each of you. Donna,my mom was legally blind, had fallen and broke her hip and suffered from dementia. My brother and I cared for her in my home for many years until she fell. We had to put her in a nursing home and it broke our hearts. She passed away from final stages of Alz. Dec. 2000. She was there 2 years and we visited her every day. I still have guilt feelings about placing her there but I could not physically take care of her anymore. I would cry before I went in and again when I left and it was a devastating time for all of us. I keep beating myself up wondering if I had taken care of her would she still be here and it still breaks my heart to have seen her suffer the deterioration and I still see the fear in her eyes from being in the nursing home. They are all horrible and believe me, we know as we tried 5 different ones. My brother has aids and is quite ill and suffers from terrible depression. They have tried every anti-depressant there is but nothing seems to help because of the aid medicines he takes. He has been HIV Positive for l0plus years and I have another heartache coming watching him deteriorate. My wonderful husband of 32 years passed away from stomach cancer at only 49 years old. I took care of him until the day he died. That was l6 years ago. Thank God for my wonderful family, (I have 3 children and 7 grandchildren and they are all here in Town). My companion for the last l0 years has been diagnosed with early stage of Alz. and is now on Aricept and all the pain of seeing this happen is being relived. He has the short term memory loss and gets confused easily. I try to not take the things he says and does personally but it is hard. He is in denial about the Alz. and when he can't find something, he will tell me I had it last and gets angry if me or his son make a decision for him. He can't even concentrate to balance his checkbook or write a check and any paperwork is out of the question. He should not be driving and he is forever losing things, wallet, keys, anything he once had in his hands. I know exactly what is coming next as I went through it with my mom and I ask God for patience and understanding but it is rough. I keep telling myself no one should have to see their loved ones suffering and this is my fourth time through this. What's that old saying, what does't kill you, makes you stronger!!. I will be 65 in August and have never been sick a day in my life and I will never take that for granted. I thank God every single day for this great gift,but I also take very good care of myself. I think when you see those you love die it gives you a strong message to take care of yourself. As for your mom, I don't think you should try to explain anything to her. Her thought process is going and she is living in the moment. Whatever upsets her is only mementary and I remember mom's phyciatrist telling my brother and I when you have dementia your emotions are blown way out of proportion. Our mom would cry hysterically for no reason and the next moment she would not even know she had been crying. If we left to go get a drink of water while visiting her, when we would come back she would think we just walked in the door for the first time. Just be there and hold her hand and tell her you love her and will be there for her and tell her you don't have all the answers to her questions. My mom eventually stopped asking as she was going further into her own little world. I think that is how God protects them until he takes them home. I hope some of this helps. Everyone is different and I know how helpless you feel. My prayers are with you.
    Sincerely, Doris
  13. Milo83

    Milo83 New Member

    Hi Doris..Welcome..Oh my gosh, after reading your post, I feel blessed..You have really gone through some tough times in your life..You are one terrific person..I also want to Thank You for all that you wrote, it really does make me feel better when I have contact with someone that had to keep their loved one in a nursing home..I must admit the nursing home that my Mom is in is pretty good compared to some..They really go out of their way to help the patient with things they would not have to do, like some of the aids bring snacks for my mom, just go sit and talk with her when they have a little time..Even though I do keep my Mom well stocked with pretzels, candy, crackers, etc..My Mom is one who really likes her snacks..They have so many activites where my Mom is, a lot of which mom can not participate in, due to her eyesight, but then they usually have someone come in weekly to entertain with music, one thing that Mom can still enjoy..I'm so sorry to hear about your brother, and your companion of 10yrs..It's so sad that they can not find an antidepressant to help your brother..
    I also suffer from anxiety/depression/panic disorder, even though I do not suffer from AIDS I know how frustrating it was to finally find one that would help me & not give me horrible side effects..They always say God never gives us more than we can handle, there are times when I do question that..I don't visit my Mom every day, but about 3xweekly, and when I don't visit, I call her atleast 2xdaily, sometimes she is OK on the phone and others she is completly out of it..I have 1 brother, but he only visits once a week (if that)..I'm 48yrs old and have a son who will turn 16 next month..I try my best to keep everyone happy..I know my Mom tells me they don't feed her sometimes, and then when I look at her menu, and I say "oh, they had chicken yesterday, then she says, Oh, yes I ate that..It is such a horrible disease..I still try to bring my Mom home for holidays and in the summer for a few hours, but she really tires easily and usually is ready to go back..Even though she often talks of wanting to come home..
    I want to "Thank You" for sharing your life with me..I hope you will keep me posted..Best of Luck to you and your family..You are in my prayers and thoughts...Take Care...I really have to go for now..........Donna