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Thread: What's Happening in our Caregiving World?

  1. #11
    Distinguished Community Member tic chick's Avatar
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    dear karen ,

    i'm sorry mr. q is still not feeling well. i hope you DO get answers in new orleans!

    it is strange about your mil not saying anything and then thanking you for the visit. and you're right. don't try and wrap your brain around this disease cause you will get all tangled up .

    i think my mom was in 1958 yesterday. when i came in she said, "oh hello, baby." i am beginning to think this is less a term of affection as it is the way she sees me...as a child.

    she asked me if i had fun at grandma's that day. i can't play 1958 or 1964. i play right now. so i answered, "mom, i don't know why you're asking if i had fun at grandma's because grandma is dead." my mom was kind of quiet after that. she said, "i forget a lot, i don't know why." but she didn't seem so upset about it. she talked about working at the hospital and liking her job and everyone liking her.

    she had complaints about the aide that wakes her up in the morning and gets her dressed and moving. today she didn't want to get out of bed at all. so they left her in bed. the aide came in and i told her my mom was complaining about her, but i smiled when i said it cause i know the aide is just trying to get my mom out of bed and moving. the aide asked me about 2 names my mom keeps saying. i told the aide they were the first names of her mother and father. i think it's odd that my mom calls her parents by their first names instead of "my mother or my father". but that's another thing i'm not going to worry about cause i have no answers. the aide said my mom wore her winer coat all day the previous day and she put some things in a bag cause she was ready to go home. so they let her wear the coat.

    she also mentioned getting out of the nursing home, but she only said one sentence about it. she seems to have lost the urgency to get out of the nursing home, she is forgetting more and more. and in a way, it looks like a blessing because she seems more at peace. not anxious about the future.

    so, i will officially say my mom is worse in memory, but better in attitude or peaceful status. the bad and the good. i feel she won't miss me if i don't come and visit her sometimes, because i think she sees me as a child and a child can't come to the nursing home without their parents.

    my mom is far away from here and i'm glad because she is less fearful.

    i can do nothing about it.

    i can do nothing about it...

    but grieve.

    thank you for sharing and caring ,
    jeannie
    Last edited by tic chick; 09-09-2011 at 07:52 AM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  2. #12
    Distinguished Community Member tic chick's Avatar
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    hey everyone!

    my mom called me monday...well, she went to the nurse's station and asked the nurse to call me. i guess they know the people up there have advanced dementia and prolly can't use the phone themselves.

    so, i had a totally incomprehensible talk with my mom. "first you go and then i'll follow". other weird stuff. the words made sense, but i had NO idea what she was talking about or what she meant.

    my sister was there sunday and called me to tell me mom didn't want to wake up to visit with her. my sister was there around noon and i don't think mom knew who my sister was.

    it seems to me it's almost the bottom of the hill for my mom. more bad days then good days. less memory of her family.

    is it wrong for me to hope the cancer causes her to die before she is just a confused and/or silent body sitting in a wheelchair or laying in bed?

    thank you for sharing and caring ,
    jeannie
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  3. #13
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    No it is not wrong to wish the cancer would take your mom before she loses ever joy & dignity. I would never have thought I would feel that way when we started down this road with my MIL in 05. I feel guilty about it at times but I have often wished the cancer diagnosis had been correct about my MIL because they said it would be quick & they could control the pain. Now she will moan but can not tell you she is hurting. My MIL was at 80 what most folks are in their 60's, she also never wanted to burden anyone with her problems. She will still sorta smile when someone speaks and we get some sort of goodbye but in between nothing. She just stares into space, not a book or the tv and the fact that she doesn't reply to her own name just kills me.If I say it loud enough she will but I don't think she knows that is her name. All the years with the AD were not bad it is just this last one where she doesn't seem to enjoy anything and can't move anything but one hand a bit that I wish she had not had to go through.
    I'm not going to lie I feel like a horrible person right now. Mr.Q has been so sick this week and we have this huge burden/choice in regards to his health looming before us. I'm dreading the trip to New Orleans. I want to go see my MIL but I just feel that I'm going to loose it if I go to the NH. I'm afraid I will start crying and not be able to stop.

  4. #14
    Distinguished Community Member tic chick's Avatar
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    thank you, karen for your thoughtful words .

    you can cry, karen. i didn't know you had such a big problem looming ahead of you. would you care to share anymore?

    and please don't feel guilty if you can't visit your mil for awhile because of mr. q's probs. you have to prioritize sometimes and mr. q needs your support right now. i know there might come a time when i won't be able to visit my mom like i do now. it's not that you don't love them, it's that you still have your OWN life to lead and that's okay because trying to do everything for everyone just makes you crazy. your mil will not get any better if you are miserable, that's the way i see things now. i have my own life. my mom had a life before and now it's changed to this one. nothing i can do about that. i can sit home and be miserable or do nothing and be depressed, but it won't make her any better. i just have to do what i need to do here, sometimes.

    karen, i pray that things aren't as bad as they sound for mr. q and i pray you both have the strength to make good decisions.

    take care of yourself and mr. q ,
    jeannie
    Last edited by tic chick; 09-17-2011 at 07:18 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  5. #15
    Distinguished Community Member tic chick's Avatar
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    hey everyone !

    hey, you know i miss you joy and julia and pati . your words of comfort or support or encoragement mean so much to me. please start posting here again.

    well, i just couldn't deal with my mom's visit yesterday or write anything yesterday. there is a nurse's aide that my mom calls "mother" because the aide makes her get dressed in the morning and generally tries to get her out of bed and doing something, even if it's only roaming the halls. so, since my mom calls the aide "mother" i call the aide "grandma" when i see her as a joke. and she laughs because she's prolly 20+ years younger than me.

    the aide told me that the day before my mom had her knees bent up and her feet on the bed and she said she was in labor giving birth to "jean". well, that is me, so i figured she regressed about 4 years the past week, cause last week it seemed like she was in 1958. so, i found my mom waiting in front of the elevator and my husband and i took her to the sunroom and we sat and talked. my mom was talking about this little girl hiding from my mother's mother because she didn't know if her mother would want her to have this little girl. and she kept talking that they were looking for her and she was hiding in a good place cause she didn't want to go home. and i knew my mom was talking about me. i might have an idea of what she meant, but i'm not sure since i don't have memories of hiding anywhere. but it made me upset and i started crying under my glasses so i left the room for a couple minutes and just went out in the hallway. then i came back.

    there was a woman in the room, she was in a different type wheelchair because her legs were straight out in front of her, as if she were sitting up in bed. she kept saying, "i want to go somewhere, someone please help me." well, a lot of patients say similar things, but i decided to ask her where she wanted to go, so i could see if i got an intelligible answer. so i asked the woman, "where do you want to go?" and she said, "bless your heart. i want to go to karaoke at 230PM and it's time now." and it was 230pm. so i wheeled her out into the hallway and the aide that was doing karaoke was coming and said she would take her. i told the aide the woman was anxious to not miss it.

    so, it was getting time for us to go and i thought i would take my mom to karaoke. my mom said you had to have a partner, i think she meant a date...lol. i said, no, you can just go by yourself. so we went down to the karaoke room and i sang karaoke for about 15-20 minutes with the group. my mom remembered some words to "hey jude" the beatles song. so, i left her there after a few more songs and she seemed okay.

    that's what i want the aides to do...just get her involved in something because she usually enjoys herself once she gets involved.

    i hate to see this decline in my mom, cause i know she had an unpleasant childhood and if those memories come back she will be distressed like she was yesterday.

    but there is nothing i can do. there is nothing i can do.

    so i just couldn't handle it yesterday. the only good part was karaoke, because i do enjoy singing and i have a good voice.

    thank you for caring and sharing ,
    jeannie
    Last edited by tic chick; 09-23-2011 at 07:29 AM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  6. #16
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    Jeannie,I don't want you to think I've deserted you on this forum! I'm trying to get used to the new site (should say trying to accept it's here & nothing I can do about it).

    I used to write about my mom & my housemate seeming to have some type of dementia. I don't feel it's appropriate here for those of you dealing with Alz. my heart aches for what these visits to the NH do. I'm glad you've decided you don't need to visit every week. and the guilt Karen feels when she just can't make it to her MIL's room or has to put her DH before his mother is tragic.

    I can only read & feel blessed I'm not in any of your shoes. My housemate is getting more & more forgetful nowadays & as for my mom? I don't call her as often. if I thought for one minute she enjoyed me calling it would be different.

    when I read that we are now looking @ a future of 10 million (or is 100 million?) having Alz. in the future it makes me furious. why can't they find the cause? before we'd heard the word Alzeimer(sp) it was just referred to as dementia. did they come up with a special word to sell/promote new drugs? as far as I know it cannot even be confirmed until the person is dead & an autopsy performed?

    I guess I see a dim future for far too many of us. in other words it's depressing.

    maybe I feel I have nothing to offer,just some cyber ((((hugs)))) and know I care & wish you all could be spared this heartache. Pati

  7. #17
    Distinguished Community Member tic chick's Avatar
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    pati ,

    i kind of thought you couldn't find this forum because it is way down the page and you have to really look for it. no, i didn't think you deserted me, you are too good of a friend and person to do that, but it was getting kind of lonely with just me and karen posting.

    pati, if you want to, just start a thread called "my mom" like your other one was called and write a short first post. i will transfer all the posts we made on it from the old forum to this one. i think it's very appropriate for you to write about your fears about your mom and about your hm. it does sound like your mom does have dementia, but i don't know since you also said she isn't taking her thyroid meds anymore and one of the side effects of doing that are a poor memory. i know you live far away from your parents and i know what it's like to not want to talk to someone, but i worry that one day you are going to get a call out of the blue and you're going to have to make some tough decisions with your sibs as to what to do with either or both your mom and dad. that's usually the way things happen if parents are living alone and family doesn't see them very often, so they don't notice the little things they do daily that don't quite add up to having full mental faculties.

    i've always loved my mom cause she is my mother, but i've never liked her as a person. i find it strange that i am so emotional about all of this...of course i pity my mom for having this happen to her cause it is so terrrible. maybe all the anger is gone and now all i can feel is the love i have for her and that's probably good.

    pati, i am sure they are working feverishly for treatments for alzheimer's disease. it would put a great strain on states and on other's for them to have to shoulder the burden of caring for us baby boomer's, the biggest generation, who are now at the age where alzheimer's is beginning to strike us. i read the other day that glen campbell, the singer, has been diagnosed with early alzheimer's. yes, the only way they can tell for sure if a person had alzheimer's dementia is if they did an autopsy of the person's brain when they died. but, they can do memory tests and brain scans that pick up early signs of dementia. also your medical history matters. like puddykat has had strokes, so she has vascular dementia. there are about 7 different types of dementia, all from different causes all with close to the same effects. so all dementia's aren't from alzheimer's disease but alz. disease is a form of dementia.

    pati, you just coming by and giving cyber hugs is enough, but you have more to add than you think.

    thank you for sharing and caring ,
    jeannie
    Last edited by tic chick; 09-26-2011 at 03:29 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  8. #18
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    Default wondered if we all had to scroll down to find this forum

    Jeannie,it did take me awhile to figure out "the scroll".

    my brother has been living with my parent's for several years now. I've let my dad know that I keep in touch with the neighbor lady. his mind is just fine for his age. I never question what he thinks of mom's mind however. that might shut a door afterall,and I believe he would say something if he was concerned. as you said when you live with someone 24/7 you do notice the little changes.

    thanks for offering to bring up my mom's thread but right now I don't care to reread it. same with my housemate. none of us can control the future. I've learned alot from all of you here.

    my neighbor's dad has Alz. (he's in Michigan & on Aricept). I always ask her how he's doing. fortunately he has family there for help & to support her mom.

    as for my housemate? well I'm figuring out how to circumvent some of his memory lapses. since he does most of the grocery shopping I've begun to write out the entire word rather than use shortcuts,he always brings home something that catches his eye......well his money so not worth a fuss if it will never get eaten.

    I also love my mom but have never liked her. she's not a likable person which is sad. when I'm talking to her & she seems to be in "today" I try to let her know I appreciate what she taught me in the past such as how to clean thoroughly. I only do this if it's sincere. I doubt if she gets much thanks from anyone else.

    one day I asked how I came to be born in a little town in WA. not sure if her story was correct but it was interesting & gave me some insight into how alone & trapped she must have felt. the older I get the more I understand her behavior over the years.

    here's one of those cyber ((((hugs))))Pati

  9. #19
    Distinguished Community Member tic chick's Avatar
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    hey pati !

    i knew you had the neighbor lady watching your parents, but i forgot about your brother. i'm glad you've learned so much from us and you're right...there is nothing you can do when people you care about get dementia. i have to keep reminding myself that daily.

    it's strange that you mentioned that you asked your mother the story of how you were born in a small town in WA. when my mom was talking last week about me hiding from my mother's mother (my grandma), she was talking about her being pregnant with me and unmarried. back in 1954 that was a social stigma and i knew my grandma would never have let my mom have me unless my mom was married and that's why my mom and dad got married. i got upset because i figured out in a few minutes of my mom talking to me last week how scared she felt being pregnant and that i was "hidden" inside her because she didn't want my grandma to find out she was pregnant.

    so, my mom had an aide call me today and she sounded like she did about a year ago. scared and yelling and wanting to go home. but this time when i answered the phone, she said, "who is this?", and i said it was "jean" and my mom said "who?" and i said "your daughter." she said she was crying because she just realized her mother and father had died and noone told her. she asked if i went to the funeral. so, i told her that her father died over 40 yrs. ago in 1969, when i was in high school and she said, "oh, yeah it was a long time ago." but she didn't remember how my grandma died in 1981. so i told her it was after i had my middle child and that she was working at the hospital where her mother died and that she was with her shortly before she died. she didn't remember that at all.

    than she started yelling about going home and i didn't want to deal with that, so i told her to give the phone to a nurse. i talked to an aide and told her my mom was really agitated for it being only 430pm and asked her if they could give her some xanax and calm her down if she hadn't had any in a while. she has the prescription written so the nurses can give it to her anytime she seems anxious.

    so, as i said in the previous post, my mom seems to be forgetting more and more lately.

    as i said, i hope this cancer or her heart problems cause her death before her brain is a shell containing nothing but pain or gibberish in it.

    i cannot do anything about this. i cannot do anything about this.

    thank you for sharing and caring,
    jeannie
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  10. #20
    Distinguished Community Member Jo6's Avatar
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    Default hello everybody

    Well I finally found you all, but may never get out! I feel so sad reading about all the problems you fine friends are trying to get thru. I know we discussed this before, but it is still hard to become your mother and she becomes your daughter. I still remember vividly the day the sky fell in on me when I realized this had happened with my own mom. It also happened with Mary too. Heartbreaking, that's all I know to call it.

    Jeannie, I haven't forgotten you. I see you are going thru some very hard times. Never knowing what you will find when you go. Feeling so down when you leave, many times I just had to pull over to the side of the road and cry my eyes out before I could go on.

    Pati, I don't feel like I have anything to offer these days, but I think about it and I realize you and I both have things to offer. Of course our love, caring how each and every one is doing, who knows, we may have a light bulb come on and something special may just tumble out of our mouth's. lol

    I'm having a hard time trying to deal with Lady Caroline's death. She died Oct. 1, 2010. My birthday is Oct. 3rd. I entered the hospital on Oct. 4th. 2010, stayed 10 days. I am just now beginning to deal with all of that. then Mary died in May, it was a rough year. Ken is doing much better trying to deal with his Mom's death. More so his ugly siblings. I just pretend to listen and let him talk it out. If it drags on I try to change the subject.

    Karen & Jan, my thoughts have been for you too. If there are new people I care about you too.

    Jeannie, sometimes we just have to find a place to stick those thoughts, but I don't have a clue where to stick them!! you asked one day if it was wrong to pray your Mom would go on quiet and easy with the cancer and not live forever in that mixed up world of nothing. My opinion would be that it wouldn't be wrong. We hate to see how they lose all memory of their former life. Their former life may not have been so great though. As you can see, I'm still trying to plow thru all this.

    I love you all and if I can do any thing for any of you please tell me so. My prayers and thoughts are with you all.

    all my love, Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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