Caring for Loved Ones

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    Caring for Loved Ones

    My grandfather is very quickly losing it. I don't think he has long left, but he's starting to confuse everything and everyone. Short term memory is good, long term memories are melting.

    I just don't know what's better - should I correct him? Or indulge in his new reality?

    The last thing I want is for him to experience any pain or fear.
    When he leaves this world, I want him to be in a place of love and peace.

    He asked me why everyone kept telling him they were somebody else. All I could say was, I don't know, but they're all here because they love you and isn't that what counts?

     
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    Re: Caring for Loved Ones

    My grandmother kinda slipped into a self imposed dementia the last couple years of her life.  She would talk about needing to get home to 'the baby', and we would gently correct her and she would nod her head, yeah I know.  Closer to the end, we didn't bother trying to pull her back into reality.  She was having fun where she was, so we let it be.  It's hard though...very very hard.  RIP Myrtle Mae!

    Funny story: we went to see her at her nursing home and she showed us a picture 'of her and her friends'  she wanted us to see what beautiful hair she had when she was younger.......It was a picture of 'the last supper' and she was pointing to Jesus as though it was her.  It was sad, but in a way we all kinda chuckled about it.
     
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    In Response to Caring for Loved Ones:
    All I could say was, I don't know, but they're all here because they love you and isn't that what counts?
    Posted by ItDoesntMatterWhatIThink


    I love that line...that sounds like the perfect thing to say!
     
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    Re: Caring for Loved Ones

    It was really weird with my grandmother...because sometimes she would be right there with us and the next time she would talk about all the cute men chasing after her, lol
     
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    Re: Caring for Loved Ones

    Dimmers- you can correct them but they aren't going to remember next time. My grandmother and some very close family friends have dealt or are dealing with dementia. Brett's grandmother has it as well and think Brett is her husband. She asks why he won't take her home and she think the nursing home she is in is evil.

    It's sad to watch and go through it...
     
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    Re: Caring for Loved Ones

    With my mom, it was definitely caused by the change in medication.  Within a 2 week period she just really lost control, paranoid, anxious, delusional.  It was frighting, she ended up in the hospital for 2 weeks.  Once she stopped taking the medicine that was causing it she has slowly improved.  I worry she'll never be 100% again.

    I wonder if your grandfather has had any change in medication lately?  might be worth asking.

    Sorry you are going through this :(
     
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    In Response to Re: Caring for Loved Ones:
    It was really weird with my grandmother...because sometimes she would be right there with us and the next time she would talk about all the cute men chasing after her, lol
    Posted by jdrotten


    That's how it is with my grandfather. He'll ask when they're getting back. And I'll say when who's getting back? He'll respond the astronauts...

    Yesterday he said we had to get out of the hospital and go home so we could take the van and start delivering people all the goodwill I make.

    But then we can have a normal conversation, and he'll have clear memories of recent events. And when he misspeaks, I can tell he knows. It's just breaking my heart.
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    With my mom, it was definitely caused by the change in medication.  Within a 2 week period she just really lost control, paranoid, anxious, delusional.  It was frighting, she ended up in the hospital for 2 weeks.  Once she stopped taking the medicine that was causing it she has slowly improved.  I worry she'll never be 100% again. I wonder if your grandfather has had any change in medication lately?  might be worth asking. Sorry you are going through this :(
    Posted by jdrotten


    That was my gut reaction, too. I thought UTI, or med change - but no, his meds are consistent. He did have an infection - that's what they're treating him for now, and he had an MRI last night to rule out anything else. My brother is meeting with the doctors today to go over that today.
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    Dimmers- you can correct them but they aren't going to remember next time. My grandmother and some very close family friends have dealt or are dealing with dementia. Brett's grandmother has it as well and think Brett is her husband. She asks why he won't take her home and she think the nursing home she is in is evil. It's sad to watch and go through it...
    Posted by Honeyes


    Thanks, Honey - that's what I was thinking.

    It's probably just best to agree and make them comfortable, don't you think?

    My grandfather said he was starting training tomorrow and they were going to show him how to jump over fences (he is an amputee). I told him I thought he'd be really good at that.

    I feel bad lying , but I think this may be the one time where it actually IS better than any alternative.
     
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    Re: Caring for Loved Ones

    I'm sorry Dimmers- it's heartbreaking. My grandmother stopped knowing who I was, she thought I was just some random woman coming to vist. she would tell me so many stories about her house and cooking dinner (at the nursing home) and about needing to get ready for her husband to come home(who wouldn't be).

    But other times we could have a completely normal conversation and she knew who I was and why I was there.
     
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    Re: Caring for Loved Ones

    Exactly, when he is lucid talk to him but if he is in his other world I would just go with it. It's tough but it's for the best I think and you can make it fun by participating
     
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    In Response to Re: Caring for Loved Ones:
    With my mom, it was definitely caused by the change in medication.  Within a 2 week period she just really lost control, paranoid, anxious, delusional.  It was frighting, she ended up in the hospital for 2 weeks.  Once she stopped taking the medicine that was causing it she has slowly improved.  I worry she'll never be 100% again. I wonder if your grandfather has had any change in medication lately?  might be worth asking. Sorry you are going through this :(
    Posted by jdrotten


    JD, I'm sorry to hear about your mom. She is doing better, though, huh?
    It's amazing how a little chemical here or there can wreak havoc on your body.
    Is she in a good place now? How are you doing?
     
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    Re: Caring for Loved Ones

    I spoke with my mom for 30 minutes a couple weeks ago, and we had the same 5 minute conversation over and over and over.  It just wasn't sticking and she really didn't seem to be aware.

    This week I spoke to her and she was able to speak about her week and seemed to remember everything pretty well.  She can't drive anymore though, like I said she'll get lost a mile from home(she's lived in the same area for 50 years).  My step-father has to give her her medicine or she'll just keep taking it over and over.

    Breaks my heart...she's alway been one of my best friends
     
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    In Response to Re: Caring for Loved Ones:
    I spoke with my mom for 30 minutes a couple weeks ago, and we had the same 5 minute conversation over and over and over.  It just wasn't sticking and she really didn't seem to be aware. This week I spoke to her and she was able to speak about her week and seemed to remember everything pretty well.  She can't drive anymore though, like I said she'll get lost a mile from home(she's lived in the same area for 50 years).  My step-father has to give her her medicine or she'll just keep taking it over and over. Breaks my heart...she's alway been one of my best friends
    Posted by jdrotten


    Well that's still pretty severe, but it seems like a positive turn.
    It is so sweet you call her your best friend :-)
    But of course I can see how that makes it incredibly hard on you.

    Does she seem scared or confused often? Or is she just kind of... detached?
     
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    In Response to Re: Caring for Loved Ones:
    In Response to Re: Caring for Loved Ones : JD, I'm sorry to hear about your mom. She is doing better, though, huh? It's amazing how a little chemical here or there can wreak havoc on your body. Is she in a good place now? How are you doing?
    Posted by ItDoesntMatterWhatIThink

    She is doing better, but progress has slowed.  I don't think she is going to improve any more than she has.  Thankfully, my stepfather is great...he's the 'hold your purse' kinda guy.  Thing is he just hit 84 and had a mild heart attack last summer, so even he is on the frail side.  It's one of the things that make me want to move 'home' to DC.  I hate living so far away from her right now, but it's really not an option.

    yea, my mom's always been my buddy going back to college.  It's hard right now as I'm going through a divorce and I really can't talk to her about it.  She's just to emotionally frail still.  I'm ok, it's just one of those things in life we all go through at one point or the other. :-/
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    In Response to Re: Caring for Loved Ones : Well that's still pretty severe, but it seems like a positive turn. It is so sweet you call her your best friend :-) But of course I can see how that makes it incredibly hard on you. Does she seem scared or confused often? Or is she just kind of... detached?
    Posted by ItDoesntMatterWhatIThink

    She does ok when she is with someone, but if she leaves the house alone she gets scared and confused very quickly.

    How about your granddad, does he seem scared?
     
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    Re: Caring for Loved Ones

    In Response to Caring for Loved Ones:
    My grandfather is very quickly losing it. I don't think he has long left, but he's starting to confuse everything and everyone. Short term memory is good, long term memories are melting. I just don't know what's better - should I correct him? Or indulge in his new reality? The last thing I want is for him to experience any pain or fear. When he leaves this world, I want him to be in a place of love and peace. He asked me why everyone kept telling him they were somebody else. All I could say was, I don't know, but they're all here because they love you and isn't that what counts?
    Posted by ItDoesntMatterWhatIThink

    Hi Dimmy,
    Sorry to hear your Grandpa has onset dementia.  It's a complicated cognitive condition, as you know, and even after diagnosis, a person can go on "horizontally" (meaning, not get worse) for long periods of time, but at some point, begin to degenerate and then,  plateau again.  I used to think it was just a degenerative condition, but it can plateau, and is not predictable in that way.

    I think it helps to think of it (and the words I always use) are that the "wiring gets crossed" but that the person is still in there, absolutely.   You have no way of knowing how bad the person, in your case, your Grandpa, feels, knowing he's not making sense, or if he knows he's not making sense.  That is the big trick.  Just always assume  he's in there somewhere, even if he's not making sense.  Next thing he might say might make perfect sense.   His wiring isn't predictable. 

    He's got his dignity, no matter what, and all you need to think about is preserving his dignity.   I am sure you do that. 

    Dementia is a process.  I think you'll really benefit from reading up on it a bit.  ALso, your HMO website might have some literature on it.  There are also support boards you can get on (amazing ones, in fact) with people who post that are experiencing the same thing with grandparents, parents, and other loved ones.  You will see how prevalent it is, and how many care takers are out there struggling.

    My cousin works with people with cognitive problems, and I can't believe the stories she tells.  Like, some of them act like they are totally out of it for days on end, and then one day it's like "Hi Nancy!  Where ya been?  What's for lunch?" --- huh?   Incredible. 

    Sorry for long-winded post.  I know you love your grandfather and it's hard.   I have a good feeling you have the intuition to know what to say and do.   Take care.  xox
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    In Response to Re: Caring for Loved Ones : She does ok when she is with someone, but if she leaves the house alone she gets scared and confused very quickly. How about your granddad, does he seem scared?
    Posted by jdrotten

    hey jd,

    You've certainly had plenty of tough stuff going on in your life, and I hope you are taking care of yourself, because you must feel lots of stress. 

    My neighbor who is in her 80's finally had things come to a head one day when she fell.  I had called her a few times when she didn't take her newspaper in to see if she was ok, but then one day I saw her son come over, then an ambulance ... etc.  She can no longer drive (thank g*d, she was scaring me that she was still driving) and she repeats herself a lot, but still has an incredible sense of humor!  

    But she does get confused.  Her kids just got her a microwave  (her first one, she's never owned one!) and she called me to ask me to come over and help her figure it out.  I felt so bad!!  How can a woman in her 80's start learning a microwave now?  All she wanted to do was use her toaster oven!!  She's definitely confused and embarrassed. 

    Sorry your mother is getting to that point.  If she still lives alone, do you have the VNA or anyone like that come in to check on her?  Gee, with your young kids and all that other stuff, you probably feel like you need to clone yourself.  I hope you have some additional support. 

     I've had some sad times myself (my Dad died a few years ago and it wasn't dementia-related, but it was health related) and I do relate to the world differently now. 

    Have to get on track this afternoon, but I wanted to offer you some support.   See you over at WA for a little distraction!   YF
     
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    Re: Caring for Loved Ones

    Dimmy,
    My mother was much the same as your grandfather is now. She was getting somewhat forgetful and had a few lapses in judgement but was still capable of living in independent living (her strong choice.) Then she fell and, long story, broke each hip, about two months apart in time. The drugs from the surgeries had a very negative effect on her mind and she also had been perhaps more demented than we had realized.
    We had to put her in skilled nursing after that due to lack of safety awareness. We were very lucky that her dementia did not make her violent or extremely paranoid. She did, as others above have written, cycle a lot. Her neurologist said her mental status would be a slow decline, with spikes of ups and downs, and that is what happened. She would be better some days than others, knew most of us at the beginning, and over time lost recognition of people, finally knowing only my sister who lived close by, and then not knowing her.
    I have been told that the point where you realize that your relative no longer recognizes you is extremely painful. I didn't experience that because I was always the black sheep so my mother was actually nicer and more polite :-)
    My sister and I read an article about dealing with a demented person and it strongly suggested that you don't correct the person or try to re-orient them. Go with the flow, unless harm might occur (like trying to get out of bed or running off with the car keys.) With my mother she lost her memories in reverse order, so by the end she only had memories of her childhood and her siblings. So we talked to her about that.
    She had some episodes of disorientation that made her fearful. We insisted she stay in the same room the entire time she was in skilled nursing so she didn't have to adjust to a new environment. Usually she could be calmed down with a visit or a call from my sister.
    I think what you said to your grandfather was nice. The idea is to keep him comfortable and safe and feeling loved and supported.
    Others have posted some stories...you have to have a sense of humor to deal with a demented loved one. Here's one story...I'll post others later if I can think of them.
    I was visiting my mother and we were sitting in the common room of her "pod" of the facility. She told me that we were in a train station, waiting for my brother and uncle to arrive. She pointed to the clock on the wall and told me to watch it because they were coming soon. Another resident had just finished lunch and was being helped up by a male aide. He noticed her pants were sliding down and grabbed the back of the waist and pulled them back up. My mother watched this and she said, huffily: "We must not be in the United States!" I asked her why she thought were were not in the US. She said: "Well, in the United States no Gentleman would ever pull up the back of a Lady's pants!!!"
    If I can find that article my sis sent I'll scan and post.
    You're doing the right thing by visiting and adapting to the mood and relative orientedness of the day.
    Hugs.
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    In Response to Caring for Loved Ones : Hi Dimmy, Sorry to hear your Grandpa has onset dementia.  It's a complicated cognitive condition, as you know, and even after diagnosis, a person can go on "horizontally" (meaning, not get worse) for long periods of time, but at some point, begin to degenerate and then,  plateau again.  I used to think it was just a degenerative condition, but it can plateau, and is not predictable in that way. I think it helps to think of it (and the words I always use) are that the "wiring gets crossed" but that the person is still in there, absolutely.   You have no way of knowing how bad the person, in your case, your Grandpa, feels, knowing he's not making sense, or if he knows he's not making sense.  That is the big trick.  Just always assume  he's in there somewhere, even if he's not making sense.  Next thing he might say might make perfect sense.   His wiring isn't predictable.  He's got his dignity, no matter what, and all you need to think about is preserving his dignity.   I am sure you do that.  Dementia is a process.  I think you'll really benefit from reading up on it a bit.  ALso, your HMO website might have some literature on it.  There are also support boards you can get on (amazing ones, in fact) with people who post that are experiencing the same thing with grandparents, parents, and other loved ones.  You will see how prevalent it is, and how many care takers are out there struggling. My cousin works with people with cognitive problems, and I can't believe the stories she tells.  Like, some of them act like they are totally out of it for days on end, and then one day it's like "Hi Nancy!  Where ya been?  What's for lunch?" --- huh?   Incredible.  Sorry for long-winded post.  I know you love your grandfather and it's hard.   I have a good feeling you have the intuition to know what to say and do.   Take care.  xox
    Posted by yogafriend


    Wow, Yogafriend - thank you so much. I definitely know he's there. I might do some reading on the internet when I get home later. There's just not enough time to read and analyze a book, which is why I reached out for real world experiences. I am humbled and honored that you took the time to respond. I really appreciate it. He was a radio man in the war. He'd appreciate the crossed wires analogy. Smile
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    In Response to Re: Caring for Loved Ones : She does ok when she is with someone, but if she leaves the house alone she gets scared and confused very quickly. How about your granddad, does he seem scared?
    Posted by jdrotten


    He keeps wanting to go home. Even when he's home. I think that means he's at least a little scared, or uncomfortable.
    That's where I lose the focus, too.
    I caught him trying to call the police the other morning because everyone kept telling him he was home when he wasn't. And if he called the police, they'd take him home.
    I told him, no, that if he wanted to go somewhere, I'd take him, but if he called the police they'd take him to the hospital and then it would be a while before he DID get home. I felt like I was scolding him, making his fear worse, even, but I didn't know how to resolve the situation.
    It's times like that I'm not sure if I should say, I'll call the police... and then tell him they're on their way and hope he forgets.
    That's kind of a moot point now since he's in the hospital and most likely won't be leaving again.
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    In Response to Re: Caring for Loved Ones : She is doing better, but progress has slowed.  I don't think she is going to improve any more than she has.  Thankfully, my stepfather is great...he's the 'hold your purse' kinda guy.  Thing is he just hit 84 and had a mild heart attack last summer, so even he is on the frail side.  It's one of the things that make me want to move 'home' to DC.  I hate living so far away from her right now, but it's really not an option. yea, my mom's always been my buddy going back to college.  It's hard right now as I'm going through a divorce and I really can't talk to her about it.  She's just to emotionally frail still.  I'm ok, it's just one of those things in life we all go through at one point or the other. :-/
    Posted by jdrotten


    You can always talk to her in spirit :-)
    I know it's not the same, but it might help you feel better anyway.
     
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    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    We were very lucky that her dementia did not make her violent or extremely paranoid. She did, as others above have written, cycle a lot. My sister and I read an article about dealing with a demented person and it strongly suggested that you don't correct the person or try to re-orient them. Go with the flow, unless harm might occur (like trying to get out of bed or running off with the car keys.) With my mother she lost her memories in reverse order, so by the end she only had memories of her childhood and her siblings. So we talked to her about that. She had some episodes of disorientation that made her fearful. We insisted she stay in the same room the entire time she was in skilled nursing so she didn't have to adjust to a new environment. ...you have to have a sense of humor to deal with a demented loved one.  Hugs.
    Posted by Green-Mountain-Views


    Thank you, GMV! What a very poignant story - very similar indeed to what I'm expecting to experience these next few weeks with my grandfather.
    You sound like you handled it marvelously, and I'll think of the pulling the pants down story when I try to keep my sense of humor.

    My grandfather was complaining about the food, so I when I left I told him to call me if he wanted me to bring him anything better than those "inedible balls of meat" and he found that quite humorous.

    He's very intent on making sure that everyone is happy, so I feel like he's feeling himself slip away. Maybe just holding a hand and cracking a joke helps.

    I know this question might be different because of our genders, but I've found also that I can't necessarily control my crying in front of him. Is this good/bad?? Any feedback there?

    AND- a sincere and heartfelt thank you for any and all feedback (to everyone here). These are the things that string us random pieces of energy together as a network of people, sharing and learning together.
     
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    Re: Caring for Loved Ones

    You're very welcome, Dims.

    We didn't always do as well as we would have liked, but we did well overall.

    I think holding a hand and making jokes are wonderful. We often brought "props", like vacation pictures and pictures of family outings and things like that so we'd have something to talk about that was positive in nature. My mother was nuts about photographs and animals, so we'd bring great postcards and calendars and stuff. If he's allowed to have treats, that can be nice. We used to bring my mother a chocolate or coffee smoothie when she didn't want to eat and she'd be thrilled.

    The crying may abate on its own as you get further from the initial shock of the onset. We used to have to have excuses so we could go outside and cry...or go get some fresh air and roll our eyes at something she had said. The more useful and in control I felt the less I felt like crying.

    We just visited my 93 y/o uncle who is not the least bit demented but we found it was easier to talk to him about the "old days" than anything current....except NASCAR, which we know nothing about lol. We got some precious stories about his being "reassigned" during WWII due to not getting along with his Lieutenant, who put him on a train and sent him to Louisiana to repair trucks for the next four years. My family is famously stubborn so I can just imagine what went on. We got a good chuckle out of that.

    The complaining about the food is pretty standard....whether the food is OK or not. Just listen and if you hear something that makes you think he needs a dietary change (too hard to chew, choking, allergy) you can flag that for the nursing staff.

    Hope this isn't TMI. Gotta sign off and do some other stuff :-)

    You are a devoted grandchild IMO.

    Post to my profile anytime and I'll get back to you.
     
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    Re: Caring for Loved Ones

    Dimmy,
    Sorry to hear about this.  The MRI's are good because they need to figure out which type of dementia it is.  Alzheimers, although thats usually slower onset, vascular dementia, maybe there was a stroke or a series of mini strokes that no one was aware of?  Hopefully they can get him on some meds asap if hes not already.  The meds dont work miracles but they can help a little and they can slow down the progression a little.  You asked if you should try to correct him and the answer to that is no.  Its like talking/working with schizophrenics.  He is living in an alternate reality and correcting him will only aggitate or make him more confused and you want to make him as comfortable as possible.  All you can do is agree with him and try to address his concerns as best you can.  You mentioned that he wasnt getting out of the hospital but I'm guessing he'll go to a nursing home of some sort.  Its sad, but its a good thing because you dont want to have to worry about him being home by himself or presumably putting that stress on your grandmother or other family members 24/7. 
     
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