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In reality, I'm more concerned for those who believe the claptrap than the one who posts it.
I was a caregiver, to the max. I single-handedly took care of a large man who had both legs amputated due to lupus. I was the ONLY person in the house with him. I cooked for him. I bathed him. I wiped his butt. I put up with his tantrums when he would get off his meds. I called the fire department when he launched himself out of bed because he thought he wasn't getting enough attention. I also took care of his large house and 2.5 acres, along with several dogs.
I'm not at all the type to call for help, especially the fire department, but there were a few times it was either that or let my friend lay on the floor for eternity. It wasn't like I dumped him in daycare or any other kind of alphabet living center. I might have but he wanted to be home with his beloved dogs and property. It was just the two of us. Even his mostly estranged family never came to visit him. Not once. I have insight that would make heads spin and I have GREAT empathy for real caregivers.
That's all, in part, what makes this thread so laughable.
I think there are many people who would love to hear your perspective on in-home, hands on caregiving, especially dealing with the physical aspects of it.
Yep, it feels like things are settling into a groove.
This is nearly a year since my dad died. He was definitely "the patriarch" of the family, and a real father figure to my adult kids.
One reason I've shared all this is to point out that sometimes the death of a parent/grandparent sends ripples throughout the family - and sometimes it sends a tidal wave. I never expected the tidal wave for some reason, and it wasn't just with other family members, it was also within myself.
Thanks for updating us, Kathryn.
It took me a full year after my mother died to even begin to feel like life was anything like normal. And I didn't have all the stressors you had during that period. It's been almost 18 months now and I still feel upset/frustrated at not being able to call Mom when I want to talk to her or discuss things with her.
I understand that each of us can only post about our own experiences, and that doing so may help others who find themselves in similar circumstances. Thinking about others' experiences can help us clarify our own situations too.
With all the modern medicine we have today we would think doctors would be able to diagnose his problem and get on with fixing it!
It seems to be getting worse instead of better! (modern medicine) I've known of several people here lately that have things that no doctor can figure out, nor fix.
It took me a full year after my mother died to even begin to feel like life was anything like normal. And I didn't have all the stressors you had during that period. It's been almost 18 months now and I still feel upset/frustrated at not being able to call Mom when I want to talk to her or discuss things with her.
I understand that each of us can only post about our own experiences, and that doing so may help others who find themselves in similar circumstances. Thinking about others' experiences can help us clarify our own situations too.
Oh my gosh, you're so right about missing those calls - I can't tell you how many times I've wished and YEARNED for the ability to just pick up the phone and hear my dad's voice.
I hate to admit it, but sometimes I drive past their former home and wave and cry out, "Hi, Dad! I love you!" It killed me to clean out that house and sell it. I walked through the empty rooms and just talked to my dad and cried. I closed my eyes and called out, "Dad, I'm here!" and I swear I expected him to answer.
When the movers cleaned out his office, I walked in and could see the imprint of where his desk and chair had sat, and I thought of all the times I had sat in that office with him, late into the night, sharing a bottle of wine and watching crazy YouTube videos and laughing our heads off. And on the floor was a chip - just one chip - which he'd dropped as he sat there, probably sending an email to someone or watching Vince Gill videos - and I just started crying again. I miss him so much. Sometimes I listen to his last phone message to me and occasionally I scroll through his funny text messages again. I can't believe he's just not in this world anymore.
But I'm getting acclimated to it.
Sometimes I also have this crazy urge to turn into my mom's apartment complex when I'm driving past it, run into her room, and flop down with my head in her lap on the sofa and just pour my heart out to her. And then I remember that I have NEVER been able to do that. But it's a nice fantasy. I am learning how to give up those sorts of wishes but it's hard.
In reality, I'm more concerned for those who believe the claptrap than the one who posts it.
I was a caregiver, to the max. I single-handedly took care of a large man who had both legs amputated due to lupus. I was the ONLY person in the house with him. I cooked for him. I bathed him. I wiped his butt. I put up with his tantrums when he would get off his meds. I called the fire department when he launched himself out of bed because he thought he wasn't getting enough attention. I also took care of his large house and 2.5 acres, along with several dogs.
I'm not at all the type to call for help, especially the fire department, but there were a few times it was either that or let my friend lay on the floor for eternity. It wasn't like I dumped him in daycare or any other kind of alphabet living center. I might have but he wanted to be home with his beloved dogs and property. It was just the two of us. Even his mostly estranged family never came to visit him. Not once. I have insight that would make heads spin and I have GREAT empathy for real caregivers.
That's all, in part, what makes this thread so laughable.
Quote:
Originally Posted by Tams here
Thank you for your insight and perspective! I get what you're saying. I am again in the midst (third time in three years) of helping my dad care for my mother at home who is in the later stages of Alzheimers.
Perhaps you could start a thread at some point. You do write very well and are articulate. It would be interesting to me to see more of the other side of caregiving. Those of us who choose to keep our loved ones at home even into the toughest times. I don't see much of that on here. I know I have PLENTY of insight that will spin heads too.
A thread describing end-stage care on this forum would be a plus. I'm not a caregiver although read both for background to pass on to a cousin who cared for my aunt with dementia who's just now entered an ALF *and* because I'm the parent of an only child. Redoing planning that was last undertaken about 20 years ago is on the to-do list for this Fall.
I'm guessing that many in the throws of intense hands-on caregiving often don't post simply because they are too exhausted at the time or perhaps too discouraged. All too many - and here I include myself - have this hope bordering on an illusion that we'll be able to care for ourselves. Perhaps some deflation would be in order.
A thread describing end-stage care on this forum would be a plus. I'm not a caregiver although read both for background to pass on to a cousin who cared for my aunt with dementia who's just now entered an ALF *and* because I'm the parent of an only child. Redoing planning that was last undertaken about 20 years ago is on the to-do list for this Fall.
I'm guessing that many in the throws of intense hands-on caregiving often don't post simply because they are too exhausted at the time or perhaps too discouraged. All too many - and here I include myself - have this hope bordering on an illusion that we'll be able to care for ourselves. Perhaps some deflation would be in order.
When you are in the midst of the end stages of caregiver you're exhausted. It doesn't seem real. I think it would be too hard and too personal for most caregivers to post about the experience.
1) Mom took her meds last night, which make her sleepy and that's why she's supposed to take them and then just go to bed - she is a fall risk anyway and meds that make her groggy make her even more of a fall risk. However, instead of going to bed, she decided to go to a bible study that's at her facility. Now, I love that she's trying to get more involved. But I got a call from the facility because they were concerned. They didn't know about this particular side effect of the meds, and she doesn't usually go to evening activities, so they've never seen how groggy the meds make her. They told me that she had to be taking by wheelchair back to her room because she was just "incredibly tired."
They wanted to know what they should do - should I come over and check on her, should we get a sitter to sit with her through the night, etc? When I told them about the meds they said oh, that made sense and they promised to go check on her in about half an hour. She was asleep - on her sofa as usual because she won't sleep in her bed. Well, on her loveseat, which means she can't stretch out on it so she lays there half propped up with her feet dangling and then her feet swell up and then they hurt and then her doctor tells her she has to sleep in her bed and then she says she will but she never does...round and round.
I've seen her after she's taken her meds - within half an hour, she is groggy, even on a low dose, which is why she does need to go to bed instead of to evening activities once she takes them. She takes them about 6:30 - because 7 is her usual "bedtime." (Loveseat time.)
I'm going to go see her today and I'm sure she'll tell me about her ride in the wheelchair (she really, really wants a wheelchair and has been trying to score one for years now). I'm also sure she'll be fine. My prediction is that I'll go by there, she'll be acting frail and "peaked" and talking in a weak voice and then I'll say "Well, I wanted to see if you wanted to go shopping, but I guess you're feeling too poorly," and she'll perk up and say, "Well, I think I can drag myself out."
2. I got a call late last night from my SIL. She took my brother back to the hospital because he was so groggy and out of it. He has lost another FOUR POUNDS since Monday so that makes about 51 pounds lost. They called the specialist who is supposed to see him in a few days about 2 hours away (in the next state) and the specialist said, "Tell them to get over here tonight and we're admitting him." THANK GOD. So he's finally admitted to a better hospital with a specialist and they are going to run every test known to man on him over the next few days. They were pumping him full of fluids when I talked with them last night. He sounded terrible physically - very weak and groggy - but also very relieved emotionally. My sweet SIL was so relieved she was almost giddy.
I am relieved too - we will know a lot more in a few days.
Thank goodness they found a good specialist and that he is getting right on it.
The wondering and waiting is the worst part. Try to immerse yourself in a good movie or book to keep your mind off it. If I lived near you I'd be dragging you to the cinema.
Thank goodness they found a good specialist and that he is getting right on it.
The wondering and waiting is the worst part. Try to immerse yourself in a good movie or book to keep your mind off it. If I lived near you I'd be dragging you to the cinema.
LOL my best friend and I went to the movies the other day and saw absolutely THE WORST MOVIE OF ALL TIME. Seriously, it dethroned my formerly "worst movie I've ever seen" which was a 1950s movie that was about spy stuff in WW2, called "Heroes Die Young" (words don't do justice to just how bad this movie is, but the one we just saw is worse).
The movie we saw was "Mother!" OMG. About half way into it, my friend turned to me and said, "I never walk out of movies but do you want to walk out of this one?" "Heck, no!" I said, "I have got to see if there is any redeeming of it!" I wish we'd walked out then, because one of the most disgusting scenes I've ever witnessed happened shortly after that.
It was absolutely the most unpleasant movie experience I've ever had - but on the positive side, we started just laughing at it - and so did other people in the audience - and then we decided that we definitely needed a drink after that and went to a restaurant and had a glass of wine and told everyone around us about how awful the movie was and by the time I got home my sides hurt from laughing so much!
And in response to some of the comments saying "Of course people didn't like it - they didn't understand it and you have to be intelligent to understand it," Yeah. I GOT it. I still thought it was stupid. Worst. Script. And. Plot. Ever.
Anyway, yes, I feel a LOT better now that my very sick brother is in better hands. I think he is, anyway. At least he finally got someone's attention. My SIL told me that the past few days she's been checking on him periodically to be sure he's still breathing. That's a terrible feeling. I've felt completely helpless over here many states away. I've felt like just bolting up there but honestly, I couldn't have done anything but get in the way and raise hell up there and probably tick a bunch of people off!
I teach a class this morning - it's the first class of the semester for me to teach and I'm super excited! It's part of a job training program for disadvantaged women and I love the organization. Anyway, after the class I'll go see my mom and I'll be sure to drag the wheelchair out of her room if it's still in there. She wants one so badly. She thinks sitting in one makes her look heroic. She doesn't seem to realize that once you start living life in a wheelchair, you often never get out of it. All her doctors have been adamant that she NOT get a wheelchair.
Thank you for your insight and perspective! I get what you're saying. I am again in the midst (third time in three years) of helping my dad care for my mother at home who is in the later stages of Alzheimers.
Perhaps you could start a thread at some point. You do write very well and are articulate. It would be interesting to me to see more of the other side of caregiving. Those of us who choose to keep our loved ones at home even into the toughest times. I don't see much of that on here. I know I have PLENTY of insight that will spin heads too.
Too much water under the bridge, too much "social media hogging" going on. When every new thread gets shoved aside so someone can blog their every little move and thought, none of which has a single thing to do with actual caregiving, there's not much point. When my caregiving days were over, I very quickly moved on and chose to not dwell on it. I'm sure I bored enough of my friends back then; there's no reason to dredge it all back up and bore a new bunch of people, lol.
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