Did you caregivers ever know that you're my heroes?

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I've been browsing topics here for a few days. You are all heroes. I am thankful that there is a place where I can come and see that I am not the only one struggling with trying to care for a loved one with dignity no matter what disgusting things happen.

I am jointly assisting my mother in caring for my grandmother who is 89. She is in home hospice for never-"end"ing stage heart disease, stroke, and dementia. I've been living and caring for her now for 20 months and I am tired.

I noticed something today that inspired me to write and thank the "stress relief and inspiration" crew for their candid descriptions of everyday life and cheer you on with the challenges you face.

I keep up with my children, some friends and family in other social media like FB. Since moving in to help care for Grandma, I've taken my life underground. I have found that I can't commit my thoughts and feelings to paper or status without chipping away at my Grandmother's dignity. If I do mention in passing that I've had a hard day, it isn't unusual for someone to pipe up and tell me how happy I should be that Gran is still alive and how wonderful she is. I'm happy already. She is wonderful. (She is really wonderful telling me the same story over and over again while picking poop out from under her finger nails. *sigh* That reminds me that it is time for ME to trim her nails again so she doesn't pick her nose with her fecal finger and get ANOTHER nosebleed). I'd get really friggin happy if the nieces who comment that they are so happy would volunteer to come over and stand in for one of us for just one day instead of just paying me lip service about how happy I should be that she is alive.

My Grandmother is respected and well loved in the community. Out of respect for her and to honor her privacy, I don't feel like I can share my challenges with anyone who knows us. Everyone shares their status. "I got a friggin flat tire today", "my child goes through so many diapers that…", "You'll never believe what 'insert name of child here' did today..", "I'm pulling my last hair out with 'insert'. All of this is socially acceptable conversation and most people don't hesitate to comment on with words of encouragement or commiseration. If I was to tell anyone (outside of my own mother or husband) what Grandma did today or how I felt about something I had to do, the comment would be viewed as nasty, depressing, or over-sharing. No one enjoys a downer and until they become caregivers themselves, they won't be able to understand why caregivers need to vent.

My child once played with poop making a horrible mess in the bathroom. It was awful and I didn't like that I had to clean up the mess. I've told that story many times to the amusement of many other mothers. My daughter learned not to do that again, because she could. Fast forward to the present….my Grandmother won't wipe her own rear end with more than ONE square of toilet paper. Left alone in the bathroom she will end up covered in her own feces. She can't be left alone anymore in the bathroom because she will do bad things. Things she wouldn't do if it wasn't for the dementia…things that no one wants me to say out-loud. Grandmother's capacity will not improve, she will only further decline. No one wants to hear that story.

I love my Grandmother, but I don't love the fact that my mother and I have to schedule an appointment with each other just to go outside for air. We have to monitor Grandma 24-7 on a baby monitor that feels like a shackle. My mother and I are becoming strangers because when one of us is "on duty" the other one wants to be as far from Grandma as possible for sanity. In 2 years I've been out with my mother alone for fun one time. I'd rather lay in front of a speeding bus than change her adult diaper one more time, but I know I have to.

There is more to my story but I digress. I've felt isolated for so long. There hasn't been an area where I could read or share with others when I'm tired. Care-giving is such a quiet and unsung occupation. Family care-giving is un-paid, we don't contribute to our own retirement, and frequently give up our own healthcare in exchange for stress, fatigue, and postponement of our own enjoyment.

Thank you for allowing me to read your stories and snippets. I feel for all of you and your situations. I know I'm not alone in feeling frustration. I feel stronger knowing that there are others that understand what I cannot share in a media other than this one. I thank you for listening. Now Grandma is calling me, God help me she has to poop again.

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I feel you 100% on this. I'm going through VERY similar things with caring for my 82 y/o grandmother (i.e. feces in places it should't be, not being able to fully express myself in my status updates)....hang in there. Just remember there's many other's dealing with the same things. I'm here if you ever need to vent. Thanks for the post. -Christa
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allshegot:

Your comment just made me remember the way she was. The delicious holiday meals seasoned just right...mouthwatering dessert prepared with love. OMG the chocolate popsicles she'd make for me to share with the neighbor. Her healing kisses for my boo-boos when I skinned my knees and elbows. The shining face in the audience present at every school concert. The person holding my baby that agreed that I had produced the most perfect child in the world (next to myself of course). The hum of heartwarming conversation that was generally all about me, her Granddaughter, her heart and her joy. Her love for me was totally unconditional. Damn my Grandma loves me and she is (was) my most favorite person in the world.

Now the tables are turned. Gran doesn't always remember who I am. The 47 year old person I am is unfamiliar to she who best remembers me as a child in 1970. It ticks me off sometimes when she thinks she remembers my dog. I believe my Grandma loves me but the conversation is now all about her, her aches, her pains, her last doo-doo, her mother, her father, her, her, her. We both don't get enough sleep.

It must be hard to be her. Undoubtedly it is harder to be her in this situation than it is for me. No, it has to be equally hard for the two of us to be in this situation. I cannot rob myself of the raw feelings I have for how hard this journey I am taking with her actually is. When we reach the end of our marathon together, the top of the mountain where our paths will split forever, I hope I feel peaceful. I hope I feel some sort of relief and can look back knowing that I made things better and eased her confusion and pain.

I am really facing some raw issues since I started this thread. I’m feeling the pain of setting aside individuality in a ME society and totally putting my awareness inside of another person for an extended period of time. When I look at myself with her eyes, do I like what I see? Maybe that is the subject for another thread. I have to think about that for a while.
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Yes, other people have no idea. They get to go back home to their things and their lives, they probably don't stay for longer cause that's about all they can handle they just wont admit it. Stay strong, its hard but we continue on. We love them anyway. I have said before its not her that I get worn out from,its the situation. I miss the way she was.
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HB:

Ouch!

Your love for your Grandmother might hurt sometimes, but it's unconditional and forgiving.

YOU, my dear lady, are my hero ... and the epitome of what caregiving is all about.

Thanks for sharing!

-- ED
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wuvsicecream: wow...now you have woke up another piece of the puzzle for me too. Other people's perception of what daily care for the elderly with dementia actually is. We live here everyday and try to steer Grandma in conversation and help her remember how to take care of basic human needs that other people don't give a thought to.

Grandma has the short term memory of a fruit fly. I'm so hungry! That yellow thing looks good. (nom nom nom). I'm so hungry! That brown thing looks so good (nom nom nom). Why aren't you letting me eat? I can't remember when I last ate and I'm starving. (I guess some people forget to eat, and some people forget that they JUST DID EAT) She does however remember 1930 like it was yesterday and she saw her mother last night (she's been dead since 1974). Oh, and she remembers that she used to like to drive...where are the car keys? She wants to drive today. She can't remember how to clean her hiney now, I'd be real surprised if she knew where to find the key ignition.

Today seems so permanent and life long. We are doing the same thing today that we did yesterday and it is boring, lonely and frequently thankless. Instead of dreaming of tomorrow's possibilities we are dreading another day like today.

Why doesn't our family or friend understand that it isn't the first week, first month, or first season, that begins to wear us down? It is the cumulative effect of basically living someone elses life with them to the exclusion of your own for extended periods of time that can chip away at the edges of even the strongest person. Take off the rose-colored glasses and smell that adult diaper with me for a year, and please do that when you'd really prefer to be somewhere else. Stay here for more than 3 hours and let me go to the bookstore. Please God let me go to the bookstore and get something other than "How to deal with Dementia today".

When someone comes to visit us. They look at Grandma and think big deal...I could do this today, she's cute! Sure she is...doddering and forgetful but that can be cute. It is for the first 5000 times. Our visitors are experiencing the dream. The warm hug. The misleading feeling that all is certainly well. Routine is comforting to the elderly. My Grandma loves to be in her own home surrounded by her own stuff. When I moved in here I sold or gave away most of my stuff to fit into her house and not upset the main floor where she lives. Her routine, her life is what we live at the moment. It is boring to the point of insanity for me. I don't think too many folks other than a caregiver understands the sacrifice of self that occurs in a dementia situation.

I had no idea that I could be so strong and so weak at the same time. Such a contrast in the same person. Human spirit is weird. I know I'm doing the best I can for Grandma. She is essentially bed-bound at night with bed rails since her strength is so low and her back is so bad, this is probably the blessing that allows us to keep her at home. She can wake us up with her disorientation, but can't roam. I don't think we could do as well with her if she was a roamer.

I am in awe of your story. You were so strong when no one expected that you could be. The voice of reason for someone who once guided you through the maze of childhood when she could no longer navigate the rapids of life. There is a peace in knowing that you stood tall, when other people didn't even understand the rules of engagement.

Thank you for your comments! I'm going to hug my Grandma today. It's my turn to watch her in an hour.

Stay strong heroes! Hug yourself today if you have to. There is no one on earth who needs a pat on the back more than a caregiver.
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This subject starting with heros has struck a nerve in me. The reality of my Mom having dementia was quite an eye opener for me. I am the baby of the family my brother the oldest and sister middle child. I was always the one who lived for happiness and just took things in stride but never cracked under pressure. Lived for today but always made sure I stayed afloat in ruff waters. What I am trying to say is... I appeared to be weak and unstable but in reality to everyones surprize, including myself, I was the heart, the strength, and most open minded person in the family. I had to fight my family to do what was right for my mom. It knew the real situation and they all just wanted to pretend like it is a dream like they would wake up and it would be over. I was told you can't do it, like we had another choice. Someone needed to think for Mom but I was the only one who got that. I gained more from the experience than I ever thought. I am so glad I am here for Mom as she was always for me. Mom is now in NH and the caring never ends. Fighting and caring for her selflessly gives me a peace of mind I will never regret.
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Thank you so much for your comments :D

To Paula1258: I am so sorry for your loss. As hard as it gets to take care of Grandma here, as tired as my mother gets, she dreads the day that she finally passes. I don't think any of us can really be ready for the role we eventually play in the care of an aging parent (or family member), the stress reaction we have to the changes this forces to our lives, the guilt we secretly feel for wishing it was over, and the shock and loss we feel when it is finally over. I salute you Paula and hope you have peace.

To allshesgot: It certainly isn't easy without support and yes you can build a wing on a home with less money than it takes to put someone in a long term nursing facility. I thought I knew what I was getting myself into when I moved in here but I didn't have a clue. (I totally needed to buy a vowel!) I had no idea that Gran would have so many setbacks and yo-yo herself back, her doctor thinks she "is strong like bull" but then again she is so fragile a fall would put us in a much worse place. We are over vigilant to try and ensure that she doesn't break a hip. There were times I had to let my kids cry it out and settle themselves down at bedtime after they wanted "one more TV show" or "another glass of water" yet we'd be seen as negligent or mean if we let Grandma call us more than a few times. Honestly she can sound like the bleating of a sheep in a barnyard if we don't immediately answer her call. I thought I was checking in for a short duty, instead I'm ringing out year number 2 and saying hello to year number 3...I'd love for her to live forever, I'd love for her to go on to her greater glory. I'd love for my friends to listen to me without looking at me like I have two heads. My Mom is expecting me to care for her like this if she should have a stroke, I really hope that doesn't happen. I can't think about that now or I'll melt.

Annie123: After a hard day "in the house" I'm certain heaven is the last place I'll be heading. I hope it is the actions we perform each day that count and NOT the things I'm thinking while I'm trying to be gentle. It is so hard to maintain the facade of normalicy "How is your Grandma?" Oh Grandma is just great! No problems at all.....instead of...well how much time do you have? Grandma didn't remember me yesterday...in fact I'm pretty sure she doesn't remember you, but hey, she DOES remember my dog. In fact she says it is her dog, she doesn't remember where the dog came from but it's been here since the last time her father visited 60 years ago.BAHAHAHA! Come visit....seriously you'll be entertained. Like I said it is so much easier to say....Oh Gran is great. /hugs to you Annie!

Bobbi321: What can I say to you? You crack me up! You made me feel human when I seriously felt like I had nothing left to give. I suppose I will never underestimate the power of a laugh. You are priceless.

To all...I'll write again. Grandma like all other seriously ill folks with dementia has become quite a puzzle to me. I totally can't understand what makes her do what she does, or the stories she concocts to cover her bizarre behavior. Her health is important it is serious business taking care of her, but what the hell....some of it has to be funny otherwise I'll lose my friggin mind.
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I know how you feel, and ditto on the fb thing. i cant even mention her name or post a family moment with her pic in it for fear I will get a response or it will set off rumors again like when my husbands aunt moved in with us. Since we live in a small town and her and her husband were once wealthy( and i say once because after all of his dialyisis and nurseing home care she didnt have much left for taking care of her) we were the target of a nasty ruumor about how we were only doing to somehow take advantage of her. Hello i have been a cna for 10 yrs and have always helped take care of our aging family. never accepted a dime from any of them. she built her own area 400 square feet(small bath,small bedtoom without closet,and living room area). The bad thing was the only people who had a problem with it and was saying this to people was a close couple friend that we had. She was fortunate to be able to make her own space. we have 5 kids with 3 bedroom house so she wanted her own space and it was cheaper to build than 6 months of nursing home care. The woman that said this just completly made up some stuff when people questioned her theory like that we were charging her rent and my husband never wanted anything to do with her(his aunt) before this, (she was like his 2nd mother), It made us look really bad. She has absolutly no clue what we were taking on. I knew what i was getting into but you cant say no. She has nobody else and as aggrevated and tired as I get i wouldnt have said no. This was just what had to be done after her stroke. For some reason people who have never done has no idea what it feels like when you just need a min and cant get one. Or what its like to not know when life is going to get bacdk to normal, and they have no idea what its like to not have a social life. And her actions made that even worse because instead of getting support and help from my friends i got rumors and ridicule. This is a wonderful place where i can come and read other stories and not feel alone or like some kind of monster for being grossed out or wishing it would be over soon. Lots of valuble info here to.
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you are ahero for caring for your love one and i can relate tothe stress and burn out a care giver goes through fo for 1 year i took care of mymom i lost her December 10 she was 92 yrs old. I never thought I say this i miss this challange i feel so lost without her i got relly burnt out at th endShe needed 24 hour care and was too difficult for any one to handle her. I can relate to being stressed out althe time allI did was yell alot weh my mom moved in with me i was her full time care giver my life changed ididnt have a life anymore I love my mom dearly I miss her
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ps:
thanks so much for the hug. It really made my day!
lovbob
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