"It isn't your mother; it's the disease"

  1. 60

    Only nice people get Alzheimer's? Really?

    I wish I had a dollar for every time my motherís or my mother-in-lawís bad behavior prompted a nurse or a CNA somewhere to tell me that. Mom curses at me and tells me Iím ugly and stupid -- the nurse sighs sympathetically and says ďthatís not your mother, thatís the disease.Ē Meaning Alzheimerís. My mother-in-law kicks, screams, spits, scratches and bites when the urge strikes her. And the CNA helpfully tells my sister-in-law ďItís not your mother. Thatís the disease.Ē

    Surely it cannot be that only NICE people get Alzheimerís. Because, as my sister-in-law told one gaping-jawed CNA ďThatís not the disease, thatís my mother.Ē

    Believe it or not, I really understand how devastating it can be to have a cherished and beloved parent who has always treated you with loving kindness suddenly turn on you with threats and violence. I donít ďget itĒ, I suppose, because I havenít had that experience. But it is a commonly written-about experience. New York magazine writers who have lost a parent to Alzheimerís can wax eloquently for a few thousand words about how their wonderful, thoughtful and beloved parent lost first the memories and then the personality that made them so wonderful, thoughtful and cherished. But for my husband, my sister-in-law and me, the experience is quite different. The parent who terrorized us and beat us as children, judged and condemned us as young adults and treated us to screaming and manipulation were we ever unwary enough to darken their door as responsible adults isnít a commonly journalized theme.

    Iíve had two and a half years of a loving, positive relationship with my mother -- two and a half out of 56. Itís a wrenching loss to realize thatís gone forever. But I didnít really have a chance to get used to it or take it for granted. No one ever talks about this experience.

    Iím constantly amazed at how many people -- in this case, my GYN -- judge me for not bringing my mother into my home to take care of her. Or for not visiting her more than a few times a year. They donít understand, but theyíre ready and willing to judge. My mother is a thousand miles away; it costs me nearly that many dollars every time I visit her. My sister-in-law gets the same cold stares and incredulity from strangers who are hearing for the first time about her experience dealing with a parent with Alzheimerís. Strangely, no one judges my husband. But thatís another essay.

    To the student nurse who looked askance at my sister-in-law when she did visit her mother after a few months respite from the constant crying, screaming and demands: Sometimes thereís a reason these ďdarlingĒ old people donít have very many visitors, and it isnít that their children are selfish or ungrateful. Sometimes itís self preservation. To the GYN who couldnít understand how anyone could leave their parent in a ďhomeĒ: when that parent kicked you out of their home when you were 15 or made that home so frightening that you left willingly at 17, the last thing you want to do in their ďgolden yearsĒ is welcome them into yours.

    And to anyone who has ever said to me or my husband that ďIt isnít your mother, itís the diseaseĒ: Sometimes it isnít the disease. Itís my mother.
    sbostonRN, kaliRN, Mattews, and 57 others like this.

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  2. About Ruby Vee

    Ruby has lots of experience in ICU nursing -- and with relatives who have Alzheimer's.

    Ruby Vee has '38' year(s) of experience and specializes in 'ICU/CCU'. From 'the Midwest'; Joined Jun '02; Posts: 8,615; Likes: 31,147.

    Read more articles from Ruby Vee

    31 Comments so far...

  3. 4
    All I can say is hugs to you Ruby
    sharpeimom, finn55, Ruby Vee, and 1 other like this.
  4. 9
    I can tell you have been through a lot. I actually admire you because I think you are a survivor. It sounds like you are doing your best. What else can you do. By the way, my mom is in a home also with dementia and the big A. She has been pleasant most the time but there has been periods of agitation. She was a loving mother and did everything right and she still ended up in a home. She is there not because I am a bad daughter but because she needs to be safe. Anyone who has any opinions about "how I could possible do that" please keep quite about it. This is difficult enough for me and my family, all of us doing our level best with her, without remarks from people who have no skin in the game. PS Thanks for reminding me what a lucky person I was to have hit the jackpot in the mother lottery. If there is one thing we can not do it is pick our parents. I advise anyone who got less than perfect parents do what Ruby does and survive and prosper as best as possible. PS Don't be to hard on staff that make the text book approved statement. It is what all the EXPERTS tell you to say.
  5. 20
    All I can say is AMEN sister! I was always reminding my team not to judge that family/family member who visits very little..or at all. Some of the residents had sons, daughters, grandchildren, siblings etc that NO ONE realized b/c they never came around. I would always hear "how can she live with herself..she rarely comes around and never stays more than 1/2 hour"

    I would gently remind them that they did not know the person that, that son/daughter etc knew. That there might be a reason they never come around..or very little. That "sweet, loving" little old lady or man might have been a tyrant in their younger years..they might have been physically and/or mentally abusive to the kids etc. And even if miss sally or mr joe are 'with it' A&O x3, and are just the sweetest most loving people to us..that might not be how they were toward the family (funny thing about that..you never know what goes on inside someones home!)

    No one understands my distant and somewhat cold attitude toward my own mother..she truely is one of the nicest most loving and giving person ever..to OTHER people..NOT to my sister or me! And sadly, I can say with almost 100% certainity, that me and my sister will be "those daughters" who rarely come around and only stay for a short period of time.

    ...you don't know..what you don't know. So don't judge that absentee family member!
    kaliRN, gaylarn4, nursingmama417, and 17 others like this.
  6. 11
    Quote from oramar
    i can tell you have been through a lot. i actually admire you because i think you are a survivor. it sounds like you are doing your best. what else can you do. by the way, my mom is in a home also with dementia and the big a. she has been pleasant most the time but there has been periods of agitation. she was a loving mother and did everything right and she still ended up in a home. she is there not because i am a bad daughter but because she needs to be safe. anyone who has any opinions about "how i could possible do that" please keep quite about it. this is difficult enough for me and my family, all of us doing our level best with her, without remarks from people who have no skin in the game. ps thanks for reminding me what a lucky person i was to have hit the jackpot in the mother lottery. if there is one thing we can not do it is pick our parents. i advise anyone who got less than perfect parents do what ruby does and survive and prosper as best as possible. ps don't be to hard on staff that make the text book approved statement. it is what all the experts tell you to say.
    both my mother and my mother-in-law need to be safe, too. they wandered. i'm just shocked to learn -- as it seems you have, too -- how many people have such strong opinions on a situation they know nothing about and have no stake in.
    gaylarn4, Ruthiegal, brian, and 8 others like this.
  7. 8
    Quote from ct pixie
    all i can say is amen sister! i was always reminding my team not to judge that family/family member who visits very little..or at all. some of the residents had sons, daughters, grandchildren, siblings etc that no one realized b/c they never came around. i would always hear "how can she live with herself..she rarely comes around and never stays more than 1/2 hour"

    i would gently remind them that they did not know the person that, that son/daughter etc knew. that there might be a reason they never come around..or very little. that "sweet, loving" little old lady or man might have been a tyrant in their younger years..they might have been physically and/or mentally abusive to the kids etc. and even if miss sally or mr joe are 'with it' a&o x3, and are just the sweetest most loving people to us..that might not be how they were toward the family (funny thing about that..you never know what goes on inside someones home!)

    no one understands my distant and somewhat cold attitude toward my own mother..she truely is one of the nicest most loving and giving person ever..to other people..not to my sister or me! and sadly, i can say with almost 100% certainity, that me and my sister will be "those daughters" who rarely come around and only stay for a short period of time.

    ...you don't know..what you don't know. so don't judge that absentee family member!
    if it were financially feasible, i'd visit more than three or four times a year. i know my mother is frightened of her situation, and for the past couple of years she's been great to me. but by the time i pay for flight, rental car, hotel and meals, that's all i can manage even though i've racked up balances on my credit cards visiting mom. i have a good job and a decent income -- many folks don't have that and thus can visit even less frequently.

    and then there's the issue that you pointed out -- no one knows what goes on in someone else's home. even if you think you know that granny sue was the nicest and sweetest lady in the neighborhood, she may have been emotionally, verbally and physically abusive to her kids . . . and maybe still is. you just don't know.

    it's not just the staff at the nursing homes or alfs who judge -- my hairdresser, my gyn, a couple of co-workers, strangers on the internet and a woman i struck up a conversation with while stranded overnight in an airport. not to mention my husbands numerous aunts, uncles and cousins . . . many of whom knew his mother kicked him out when he was just a kid, knew that she abandoned her kids with her sisters for years at a time and knew that she beat them. most of my aunts and cousins have dealt with my uncles who had alzheimer's. in seems strange to say, but i'm really fortunate in that regard. more than one aunt slipped up to me at dad's funeral and told me not to let anyone tell me i wasn't doing the right thing by moving mom into an alf.

    if you and your sister are in that situation and don't visit as often, i hope you're the benificiary of some of that same compassion. thank you.
    Ruthiegal, sharpeimom, brian, and 5 others like this.
  8. 5
    There's really no reason your GYN or anyone else has to know your mother is in a home, is there?

    I know your history with your mom from reading your articles and I know it all weighs heavily on you and you have a lot of hurt and anger inside.

    But talking to strangers about it means you're bound to get varied responses, some not to your liking. So why invite trouble? Just blow off steam here, maybe, and don't deal with live people about it. Maybe that will be easier.
    gaylarn4, dimpledRN, Julie19, and 2 others like this.
  9. 12
    I was once told a story about a woman that was raped by her father, and she became pregnant as a teenager and forced into an abortion. Yes, how DARE she not visit her poor old father! I try to not make assumptions about a persons reasons for not visiting their parents.
    kaliRN, gaylarn4, Ruthiegal, and 9 others like this.
  10. 7
    I never assume it's the family being "mean".
    Old does not equal sainthood.
    I have seen far far far too many elderly, who look "cute as pie", that were actually terrorists to their children.
    Had a very sweet looking old man who would look at you with puppy-dog eyes, begging for pity and hugs. If you knew what he had done to his daughter, you would NOT think it was so tragic that he was alone and that his family couldn't give two s***s about what happens to him.
    I'll even place bets there is a darn good reason 90% of the time that family chooses to stay away.
    Yes, I'm a cynic.
    gaylarn4, Sugarcoma, mmiriamasher, and 4 others like this.
  11. 16
    Although I was blessed with a truly wonderful mother and always had a loving respectful relationship with her the same could not be said of her mother. My grandmother terrorized, abused and vilified my mother her entire life. Granny treated her three sons well and treated her daughter like crap. The stories of abuse were horrific and the saddest part to me was how my grandfather justified my mothers suffering in the name of preserving his marriage. He had gone through a traumatic divorce in his childhood (in early 20th century divorce was a scandal) and for fear of experiencing the social stigma of his wife leaving him he allowed his wife to mistreat one of their children.

    People from outside the family constantly praised my grandmothers "good works", charitable efforts and fine moral standards. If they could have heard how my grandmother talked about her peers, how she mocked, disrespected and cursed them to make herself feel superior I think they would have seen her with an unjaundiced eye. My grandmother only backed down from two people in her life: my father and myself. She made the mistake of speaking harshly about my mom to my father at the beginning of their courtship and he blocked my grandmother from our home for years; actually until my mother asked him to relent years later. She said a truly vile thing about my mother to me when I was 16. I slapped the taste out of her mouth. I am not particularly proud of being physically aggressive but it shocked my grandmother so badly she walked on eggshells around me the rest of her life.

    When my grandmother was terminal and needed more physical care than my grandfather could give she begged to move in with my parents. I was years out of home but I came home as much as possible to help my mom and to keep an eye on my grandmother. After Granny had been there about 3 weeks I came to visit to find my mother sobbing and my grandmother cussing at my dads's boss on the phone. I took the phone out of her bedroom, sat my mom and dad down and told them Granny was leaving. Then I told Granny she was leaving just as soon as I arranged a placement at a local nursing home. She turned pale and said nothing.

    We did visit her regularly until she died because my mother still hoped for acceptance I guess and she still harbored some love for my grandmother. I did hear the aides talking outside the room a few times about how mean my grandmother was. And surprisingly hardly any of her old cronies could be bothered to come see her in her final days. Seems she had started letting her true nature show as she got sicker and folks stayed away.

    Sorry for the long story. I have waited for years to write about that. The lessons I learned from my grandmothers cruelty were many but some of the pertinent ones are that my mother made a conscious choice to not be abusive to her child despite how horrible her childhood was, that many people can be weak for fear of being alone (my grandfather) and that eventually ones true nature will show through. So I never judge anyone for not visiting their elderly or their disabled family members because I don't know what might have happened behind closed doors.

    So Ruby do not feel guilty nor that you are not doing enough. You are doing what you can given the circumstances and at least you are according your mother and mother in law dignity by ensuring they are in a safe, secure and appropriate place receiving professional care. You really don't owe them more than that no matter what anyone else says. It is not the childs duty to care for the parent but rather the parents obligation to be the best parent they can be to their child IMHO.
    gaylarn4, Ruthiegal, sharpeimom, and 13 others like this.


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