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gigglebox,

I've spent 20 years in the trenches. I know how hard and abusive it is. My life has been threatened twice. My wife has suffered much verbal abuse some of which was exactly like her family of origin. Our two boys have been made to feel like orphans. We've hardly been to church on a regular basis for the last 7 years, carry a lot post traumatic church experience pain which means that when our buttons get pushed we just stay away from church. We are still Christians, but not so religious and we enjoy the freedom to live as normal people. Eastern TN, Eastern KY, all of WV, Western NC, remote rural areas of NC, anything almost east of I-95 NC, etc. but even in the urban areas too. Not everything that glitters about a church means it's warm and loving on the inside.
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People mean well, but I am sure we caregivers all wonder to ourselves just how many times we will be able to force speak a creative response to "how is your spouse doing?" as to avoid the ackwardness at work of coming right out and saying he or she is never going to be the same again, will never be able to work again, and is not the same person I married thus I am trudging on out of duty, love and irreparable loss to just keep a grip on my own sanity and in hopes of keeping our marital home until our child(ren) are out of the house as to resemble some level of normalcy for their sakes.
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awww mscrysti.. you are such a sweetie. I understand what you are saying. random people speak up, invariably asking the stupidest of questions like "how are you doing ?" * (" how do you think im doing? 'I'm worn to a frazzle and my Moms dying in excruciating pain") but I just say " oh were doing fine".
sanity is a commodity that is fleeting when you are someones 24/7/365 everything caregiver. Love, Yes. Duty Yes, easy Hell no!
you are a brave soul and your Hubby and Kids are lucky to have you. My heart goes out to you. i'm here. every day. because this is my only link to sanity amongst people who can even conceive of what we go through as caregivers. Keep Going strong. Vent here all you want and we will listen. I will listen. ~ nutz
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my church is right here in my home . i talk to the lord right here in my home .
i ve been to church many years ago and didnt care too much for preacher pointin fingers at whoever showed up , i thought we re not suppose to judge poeple ...
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Heard you on that lhardebeck..."wherever two or more shall gather so shall I be" I think the vast majority of churches are more about man's law than God's, and or about the money.
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some says you have to go to the lords house which is a church . i had to laugh at that one cuz my home is gods house too . :-) my home is where the heart is . my family ..
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Yvonne,
I can truly relate to your original statement on this thread. When people ask and you hope they will give a supportive answer they give some thoughtless response. I've learned in the last three years that it is best to vent here where people can understand the challenges of caregiving. I have gotten to the point I really don't share much of the day to day caregiving with anyone since all I get are negative reactions. This site has truly been a life saver to me. And I mean "life saver" since I have gone through severe bouts a depression through my caregiving journey.

Keep talking and venting on this site and it will help. Also, contact any and every agency you can find to get some respite care. Check the Aging Commission for your state and county. You can't take care of your husband unless you try get yourself some rest. We aren't the enegizer bunnies, our batteries do run out and we need to be recharged.

I'll keep looking for your posts! Dtflex
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Yes, we do need our rest... and I see that so many of you have that relationship with the Lord. God's house is inside your heart indeed. I am praying for all of you and your many connections with others, good and bad.
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I really and truly don't understand what a lot of you are going through - you have seen it much worse than me... and been through much worse than me.. Points well taken Crowe - it's all about balance in a sense.. and you seem to have the balance for you. As for the "FINE" comment, I know what we all want to say! Glad that we have this place to post it! GRRR when you need to!
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YVONNE:

In learning how to die we might also be taught to live. All the "God talk" you keep hearing is designed to give you strength and help you develop the appropriate attitude to death and dying. But when a painful loss seems to be looming over the horizon, however, some people come up and mechanically utter the "right" things that make you feel even worse. They've already said it, but don't realize that the smart thing to do is back off a little and let you do the necessary soul searching to get through this.

When you're running from yourself there's no place to hide. Religion, then, would be nothing but a refuge at this point. The unconditional love you have for your husband is your "rock," and even though you're tired surrender is not an option for you. You'll never forgive yourself if you did.

Always at your service,

-- ED
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The right things are hard to say.. and we are all imperfect..
Hope that you have had a better day today, Yvonne.
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My favorite saying is "God helps those who help themselves." We can't expect God or anyone else to come to our rescue. It's up to us to deal with all that has dropped in our laps. It's hard to not get depressed or feel like this nightmare will never end, but we've all made it this far and will continue doing what we do, until we are no longer needed. We are all stronger than we think! It's up to us to make our own good times. Tell rude jokes or laugh at and with the person you are caring for. I find when Mom gets really nasty, or does something really gross, I get silly and start to laugh my a** off. This usually gets her laughing too. Sometimes it just pisses her off, but it sure makes me feel better!
I guess what I'm trying to say is, we've all been there and we all realize at some point, that it's up to us to find ways to help ourselves to a few moments of peace. It's not just going to magically happen.
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Depending on the person telling me of their misfortune...I sometimes offer to "break God's kneecaps on your behalf." That lets the person know I am not blowing them off, that I realize they are in a serious situation...and they sometimes laugh. They know I am open to serious conversation. I have done this with a friend considering suicide, even. (She didn't).

It's that hardest thing to bear something unbearable and then have to swat away platitudes is an extra burden.

Storyteller Laura Simms made me post a story on her website called the Tree that Absorbed Tears. A young bride got stuck marrying a man who started to abuse her. Her mother visited, and the daughter poured out her sorrows. The mother said to find a tree in the forest, and each day to unburden her heart to the tree. So the daughter did.

When the mother visited a few months later, she asked if the situation had changed with the husband. No, he was still beating her, but somehow the daughter was bearing up with more courage and strength.

Then they both went to see the tree. It had died. The bride's tears had killed it. There was proof to the daughter that her pain was real, witnessed by the death of the tree.

The storytellers who then discussed this story broke into two camps. One side made rainbows rise from the mist of her tears, moss grow on the wood, birds nest in the bough, flowers bloom at the base. They wanted a good result to come from the suffering.

The other half of us defended the death of the tree. Some events are so painful that there should be just witness to them.

That story has helped me bear the difficulties of 8 years of sole 24/7 caregiving, after the grief giving up all I had created for "my" life.
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There should have been three camps not just two. The third camp would've been my choice. Get rid of the abuser, forget the tree.
And no where in the Bible does it say 'God helps those who help themselves'. Just like it doesn't say that 'money is the root of all evil' It's the 'LOVE OF MONEY' Both of these sayings are misquoted from the Bible. If we're supposed to 'help' ourselves, then what's with this verse?
Hebrews 4:16:
Let us therefore come boldly to the throne of grace, that we may obtain mercy, and find grace to help in time of need.

Doesn't mean that life doesn't suck like a vacuum at times though.
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'God helps those who help themselves' is usually attributed to Ben Franklin, quoted in Poor Richard's Almanac in 1757. In actuality, it originated from Algernon Sydney in 1698 in an article titled Discourses Concerning Government.

However, if we ask God to help us and do nothing to see what outside resources are available, it's like asking God to help us find a job, but then doing nothing as if God in going to bring employers to us or like trusting God to help us on an exam, but not studying for it. I liken this to the story about the Christian who died and went to heaven very angry before God after dying in a horrible flood. He said, God I asked you and trusted you to save me from that mess. God's reply was, an announcement was made to evacuate; vans came buy for those who needed help to get out; when you were on the roof; there was a rescue boat that came by; but you said no to every one of these opportunities to get out. Sometimes people can fall into the trap of being overly passive in their faith to the point of inactivity and mental lethargy.
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That's right, Sir. Even faith, without works is dead. We have to act on what we believe...and everyone believes something. We make choices everyday. The choices one makes reveal what he believes. However, rather than argue about theology, I think those of us who believe in God would rather just pray for those in need, try to be supportive and encouraging, and lift up another having difficulty with caregiving struggles, which are common to all men. Whether or not someone believes as we do or not, is not the purpose of this site. It is to be of help to one another. If it encourages another to hear that a loving God cares and wants to help them, wonderful. But not all believe. I've never seen a tree care about or help another. God uses people to show his love unto them, and sometimes serve in more tangible ways.
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When we send prayers up, blessings come down... I pray for all of you - you have blessed my life with your postings, your theories, your venting, your ranting and raging... you make me realize that I am not alone... we must put our faith over feeelings - faith in God and in the goodness of the angels that He sends our way. PRAYERS UP, BLESSINGS DOWN.

Ecclesiastes 4:9-10 (New International Version)

9 Two are better than one,
because they have a good return for their work:

10 If one falls down,
his friend can help him up.
But pity the man who falls
and has no one to help him up!

Let's lift one another up in prayer.. and stay out of our pity party of a pit! Cry if you need to, laugh if you must... get it off your shoulders, fellow caregivers!
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Precious Sister, thank you for that! Love you. Love you trying to encourage us to stay out of the pit. The valley seems so dark sometimes, and the climb up on slippery sides. Thanks for your encouragement. God bless you for that.
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Okay one thing I am going to say about the God factor...isn't that supposed to be about loving one another...? Okay now by saying that these people that say meaningless things to you while you are struggling with real urgency at home is the real deal, not their useless statements - so ignore what morons say, you know what is important and what is not and unhelpful unthoughtful speech usually comes from those who are either dimwitted or narcissitc. Period...you keep caring for your husband the best you can - hold your head high and say everyday to yourself I WILL BE A SURVIVOR...yes everyday I WILL BE A SURVIVOR...and then you also have us and not those other morons,...see didn't I make that simple,...big smiley :-)
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Touche'!, PirateGal. :>)
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I agree, people say some of the most insensitive comments at a time when we need to hear something uplifting. I'm included in the above statement. I don't know how many times, but I know I have. Maybe we need to brainstorm and make a list of what to say. Right now I am drawing a blank. All I can give is a BIG HUG to everyone on this site.
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My situation is with my 97 year old mother-in-law. There are certain people who do try to tell me I'm "learning something". No I'm NOT!!
I hear you loud and clear and I'm so sorry you're hurting.
Whenever I hear a story like yours, I just tell the person that I'll be praying for a speedy recovery and offer some help....not that they'll take me up on it, but I think it's nice to hear. Bless you, Yvonne, for all you endure.
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You want to hear another gross story? The other day, my m-i-l had gone to the bathroom (b/r) and washed her hands and I left her down there in the b/r while she was brushing her teeth. She seemed steady on her feet that morning. My husband came down first to check on her, and I followed after I heard him say, "Mom--you can't do that!" When I got downstairs, I saw him getting a bucket and preparing it for cleaning so I went str8 to the b/r. She had pooped on top of the toilet seat, on the toilet seat, on the rim of the base of the toilet. There was poop that slid down the front of the toilet and then I saw a BIG glob on the b/r floor. Then I took a second look at her, she had it dried on her legs, there was a big glob in her DEPENDS disposable underwear (du) and on her pj bottoms. I got all the poop up & cleaned her up while my husband cleaned the floor afterwards. FUN!!! FUN!!! FUN!!!
On another day, she needed to go to the b/r, so I helped her over to the b/r and she was given a piece of tp to wipe with. To make a long story short, she asked--"Where's my vagina and butt?" I answered, "down below" and pointed to the area.
She said, "Nuh, uh--and pointed and said, it's over there on the table." I told her, "It's part of your body!"
At different points, she asks Jesus to help her. This is not a life. It's DEFINITELY not the life I want for myself when I get older.
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Got to love those gross poop stories!!! Mom was sick with the poops for a week, in January. Well, I got sick too. My siblings that never help unless I beg, finally got a taste of what I've been dealing with for 2 years. As they told me of their exploits with Mom, I just laughed! It was fun to see them all grossed out!! I can't even begin to imagine all the people who work in nursing homes and clean up after strangers all day long.
I used to gag and get all grossed out, now it's just another part of my day. Pretty sad!!!
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(depend, depends, depends...yep I had a day when I found poop from bed to floor, to all over bathroom floor all over legs...yep p---u!)
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Mom was finished with her bath, was sitting on the bed. She asked me (in a whispered voice), I have to go poop. I said, Okay Mom, lets go. She said, NO....I have to go just on one side, how do I do that? I just laughed and laughed. I told her it's okay, it will come out just the same.
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I'd like to shoot up a flare for the "God is teaching us something" side (after shooting it down many posts ago.) Sure it's annoying when people learn about what we are doing and mouth a "helpful" platitude in return. GRRRR. My own blog is called "When does the glad start" in response to a friend who emailed me "One day you'll be glad you did this for your Mother" (and I shot back "When does the glad start?")

If we can whack away all the pain of the sacrifices, the financial ruin, the emotional rollercoaster, the abandonment, the loneliness, the (fill in the blank), the BS and the real poop...there is something about this long term caregiving which does build CHARACTER.

Was thinking on creating a line of t-shirts with the saying
"I am a caregiver..."
CHARACTER
starts where
CONVENIENCE
e n d s

I am going to put my other saying on a separate post, in case certain words get censored...
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T-shirt saying Number TWO (no pun intended, oh well, sure intend it)

"I am a caregiver..."
CHARACTER
starts where
THE CRAP
b e g i n s
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I know it made me appreciate WORK..,it is soooo much easier than being with my mom. LOL
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You know the "this is it" point where I realized CHARACTER? When Mom's public guardian called and told me that Mom had run out of money and they were throwing a nursing home as a Medicaid patient "so get her ready to go." Just like that!

Suddenly the MOI that usually bemoaned how $10 day (my pay) didn't buy squat, and that I had no time for myself, and nobody helping me...I found myself offering to give up that money, go on early Social Security, give up the days at Mom's day care center...to save money to keep Mom in her home for the rest of her life. "It isn't enough," she said. "Get her ready to go."

Turns out the PG's trust dept had bungled in how they requested funds from Mom's reverse mortgage, and the financial picture changed for the better so that danger passed.

But meanwhile, the genie had been let out of the bottle...more like The Hulk. I knew what I was made of...even if it was a little green.
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