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People don't realize what it involves with taking care of an elderly parent. It's life changing......it's almost like a curse.......it's terrible. I have no time for myself......had to quit my job......have siblings that won't help.........my mother is in terrible condition......eyes, heart and arthritis. She is always constipated and wants milk of mag all the time. I feel like I'm trapped......no time to do anything myself. When a parent gets old....it's terrible......life is terrible.

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As caregivers, we have a bit of inside information that others who have not walked in our shoes do not have. From this experience, I choose to pass all my worldly possessions (house and any money left) to our children now. Note: I was widowed at 59 from the man of my dreams so it is just me now and I will never remarry as I refuse to replace him with someone else.) I have insisted to our children that I want to live in a nursing home rather than with them. I adore our children and they treat me like gold. That's how I want them to remember things. If I hadn't done this caregiving, I would have never thought to make such a critical decision. and I feel good about it.
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Just an update......things are still a living hell. My 88 year old mother likes to argue with me every day. Even in her old age.....the "fight in her" never left. Yes, life is bad. I'm tormented by her every day. I'm dying a little each day. Caregiving is a slow death. The curse continues.....
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I got the same feeling, beammeupscotty. I decided to ignore, especially because I am glad that people have Medicaid as a safety net in these days of high end-of-life costs. I wish there was a way to get the costs down, but I think they will only go higher.
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Seems like the comment I just read on this page about "lets hear horror stories" is throwing lighter fluid on a fire we all want to put out or at least let die down so we can calm ourselves down. It's ok to to vent and tell each other our stories, but I felt a very weird feeling when reading that comment..like someone who is getting pleasure out of pain..think about it, kind of scary. praying for you.
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Recognizing Compassion Fatigue

Compassion Fatigue symptoms are normal displays of stress resulting from the care giving work you perform on a regular basis. While the symptoms are often disruptive, depressive, and irritating, an awareness of the symptoms and their negative effect on your life can lead to positive change, personal transformation, and a new resiliency. Reaching a point where you have control over your own life choices will take time and hard work. There is no magic involved. There is only a commitment to make your life the best it can be.

Normal symptoms present in an individual include:

• Excessive blaming

• Bottled up emotions


• Isolation from others

• Receives unusual amount of complaints from others

• Voices excessive complaints about administrative functions

• Substance abuse used to mask feelings

• Compulsive behaviors such as overspending, overeating, gambling, sexual addictions

• Poor self-care (i.e., hygiene, appearance)

• Legal problems, indebtedness

• Reoccurrence of nightmares and flashbacks to traumatic event

• Chronic physical ailments such as gastrointestinal problems and recurrent colds

• Apathy, sad, no longer finds activities pleasurable

• Difficulty concentrating

• Mentally and physically tired

• Preoccupied

• In denial about problems

When Compassion Fatigue hits critical mass in the workplace, the organization itself suffers. Chronic absenteeism, spiraling Worker's Comp costs, high turnover rates, friction between employees, and friction between staff and management are among organizational symptoms that surface, creating additional stress on workers.

Healing an organization takes time, patience, and most important, commitment. An awareness of Compassion Fatigue and its far reaching effects must be present at the highest level of management and work its way down to encompass line staff, as well as volunteers. Often, the mistrust that employees feel towards management is not unfounded. Since many care giving institutions are non-profit, they inherit additional challenges such as low wages, lack of space, high management turnover rate, and constantly shifting priorities.

Organizational symptoms of Compassion Fatigue inlcude:

• High absenteeism

• Constant changes in co-workers relationships

• Inability for teams to work well together

• Desire among staff members to break company rules

• Outbreaks of aggressive behaviors among staff

• Inability of staff to complete assignments and tasks

• Inability of staff to respect and meet deadlines

• Lack of flexibility among staff members

• Negativism towards management

• Strong reluctance toward change

• Inability of staff to believe improvement is possible

• Lack of a vision for the future
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Wonderful day at the doctor today! if she is going we are not going out in hell!
I am getting up, getting dressed and coming to the party!
ONE THING I AM POSITIVE OF ..YOU CANNOT FORCE ACCEPTANCE..YOU HAVE TO HIT ABSOLUT ROCK BOTTOM OR YOUR OWN TERMS..YOU CANT FORCE IT, SO JUST WORK ON IT...
TAKE BABY STEPS!!
Lots of love n light to you all.....Juju
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Wow....so...a site just for those of us who are "blessed with the honor" of providing parental care. Honor? Yes....per the bible and I believe the Word of God. Blessing...a blessing to still have my mother with me. NO doubt or questions. Ok. That's all said and done. I'm STILL human. I still have feelings and they matter, too. I'm two months shy of 39, have no children, no boyfriend, and now mom has suffered a stroke that has left a shell of who my mom once was. I miss her so MUCH, and she is sitting right next to me most everyday. I just walked out of my job last week for my own reasons, but it was what I had thought of doing ANYway a week prior. Mom gets "too much money" to qualify for Medicare. I ain't even TRY. I already know having worked in the medical field. She DOES get good money, and it has gone FAST. Private sitter...couple that with an OLDER by 10 years brother who "helps...as it suits his schedule"...coupled THAT with me driving an hour one way to my former job out of state and back daily at 4pm to make sure the sitter goes home, mom is fed, meds taken, etc. etc. etc.....and now her sight is going quickly. "You see my eye...?" All the time...she can't help it. It's driving me NUTS....she is depressed...I ache for her...and me. I actually had a Fri to Mon kinda sorta beach wknd break and called her two of the three days....I was worried about her. She's my bestie of all besties, and needs me now more than I feel I have in me to give some days. Tears....so many of us out here, huh? Thanks...this is so hard. This is the hardest thing I've ever done.
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I want to hear Medicaid and nursing home stories.......money horror stories......how you literally got 'ripped off' by Medicaid.......let's hear it.
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Sorry about the spelling, I'm tired! Try to spell exciting!
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You go girl! sounds awesome and very positive to me. Prayer changes things. Those words, I love you, erase all of the other stuff. This is so sxciting, it is worth it all!
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ya I run on caffeine n cigarretes in this mode....normally I could go days without a cig but I am half way done with sunday pack...I know that is not good for me..ugh but I cannot tolerate anything else it seems I do need to get the water in me if nothing else! we got a big day today! and I will take us out to eat either before or after...hoping if someone else has to fix it mite taste better...idk??lol!!!
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I cant help it now....OMG my mother just greeted me in her usual way...then added out of the blue looking right into my eyes.."I love you...there Is some good stuff going on in there"...
I FREAKING KID YOU NOT....POWER OF PRAYER AND POSITIVITY!
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jujubean, try to eat little bits, drink some liquids (that's so important) and you will get your strength back. Bless your heart. No sleep and no food in your tummy makes it rough on you! I'm the same way when Momma is in the hospital or when she has one of her bad times when she can't eat and won't even get out of bed. I never drink or sleep and I get kidney stones, ugh! Make sure you drink some liquids. Love & prayers for you and your Momma
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BUT WHEN THIS IS OVER I WILL HAVE TO DEAL WITH THE INCREDIBLE GUILT THAT I WASTED A GOOD AMOUNT OF 6ys DOING THE WHY ME. THIS ISNT FAIR.. YADA YADA
WHEN IT COULD HAVE BEEN 6 YS OF WHAT WE ARE HAVING NOW!!!
AND THAT IS TIME I WILL NOT GET BACK!!!
THAT'S WHEN I WILL HAVE MY WORST NEXT CHALLENGE..
IVE DONE THIS BEFORE TAKEN A PARENT TO THE OTHER SIDE.
LEAST I GET TO PREPARE, LAST TIME IT WAS TRAMATIC!
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Im finally getting kitchen cleaned up and I notice how many barely touched dishes are..man.Im so hungry but cant seem to eat more than a few bites..nothing taste good sept top ramen so I am running on that.
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*and by flipped out I mean I really spewed the venom outta me. I cant have mom leave this world with out peace in my heart cause she has in interaction just improves everyday...my good mood is her good mood...we are doing great and boom...I broke my own moms rib then I demand full work up cuz she is not standing rite anymore since april botch and they show me a spine. why didn't they catch that when in hosp in Feb...you cant even distiguesh between vertabra...sp? anyway I rant....and I was on the pity pot and didn't research her drugs FOSOMAX, I put that job in the doc's hands! and I checked her for the lockjaw..that why she not eating good....getting a cusinart tomoro!!! after ortho appt and pick up hospital records for legal,,,,i had them copy her entire file for me. (funny the Patient Advocate had to get supervise consult on what I need to fill out to get that and would have answer on Wednesday..I smell damage control!!! cuz I just called records myself and ordered em ...they sed ok pick up at 2pm tomoro, no prob bring your POA and they are yours!

How can I figure out how to request files and they don't have a clue...and the PATIENT ADVOCATE CANT' I am down not dumb..she is stalling .they have made the last mistake with me.

So for the love of MY MOTHER get help so you are not making my mistakes please folks!!!!
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It's very hard and you have to take care of yourself or you won't be able to take care of them. I'm an only child who is having to do this for my father so I feel your pain. I hope that you can get some help and not have everything on your shoulders.
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I started out just like you have, feeling really low. My father has paranoid schizophrenia in his old age. I am the only child of 7 who was willing to take him in. I cared for him for 7 days/wk almost 3 months before raising heck. When I did, the help from siblings began, then the response was "kick him out". I couldn't do it, so he's here with me, my husband and 2 children. I don't know what the longterm will hold for any of us but I had a talk with him; and, since my sisters/brothers wouldn't take him in, not even for a day, I asked him to keep his apartment and to maintain a 4 days on and 3 days off at my house. This will give him 4 days of care and I have the weekends off. We cannot afford hospice. He's still mobile but mostly scared. I told him it's the circumstance he's in with old age and unfortunately is one that requires him to try to get a "handle" of. He's currently on meds to control the voices and he's learning to adjust to a new lifestyle. We're trying our best. This forum is so very helpful. I hope you are finding it as helpful as I am in having an outlet when you need it. Sometimes we all need a caring voice from others in our shoes. Thank you for sharing your story. I deeply, deeply empathize!
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I mean fiduciary, she has contacts for legal aid for us, and i still wondering bout 2004 thru 2011 i mean i called in them 2004, and they never offered it or i certainly would have jumped on it. She also may have contacts for our home situation too....lots issues there...roof caving in, NO DOODOO...a sinkhole that a friend actually fell in, last dec...we just walking thru yard and they gone...could have been me..what if i was alone? my bed ridden deaf dementia mom is not calling 911 I could die in my own yard if this doesn't kill me first....I often think but try not to go there..do i have a freaking black cloud cuz if i didn't have bad luck id have no luck at all. not to mention this house is not on foundations right and bad shape everything needs repair and probably lost 40 grand on it....ugh....so she will help us sort that out... what to do cut losses or fix up, etc... i got my new health aide hired today and is better schedule than one who quit last week with no notice.
And gave sr services a swift kick and t"she just had a few new things pop up" i might get respite care! Mite...she mailing packet
And i opened a can of whoopass on the hospital today....
they are who will feel my anger now...
i know i have a case i am sure, i just need strentght to do it!
and since i have no family to speak of...i called out a few friends who "always promise help and don't" to help me with ma yesterday cuz i was barely able to care for her since sat hospital....and we laffed, flipperz!
weeeeeeeee getting help....all this happening since mom got hurt and i flipped out is truly a statement to the power of positive thinking a month ago i was thinkin dark thoughts in the cocoon...now i feel empowered. that was like an epiphany or something....idk it is a miracle!! a true miracle!! now to deal with the reality of our latest blow...the mangled spine and cysts in shoulder...bonescan...the Cword was used i don't have much time to get this train back on track. I really thought i had a while till she fell 4 months ago

EVERYTHING HAPPENS FOR A REASON IS ALL I CAN FIGURE...I HOPE I SURVIVE THIS WITH A ROOF OVER MY HEAD AND MOM'S DIGNITY IN TACK....JESUS TAKE THE WHEEL!!!!
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"College" is right, VA actually start from the date you put VA claims in, and if appr'd that's the date pay starts from (retroactive). I know that because I personally have had service connected claims in for myself (as a vet). My question is willl they assist me w/my mom..(Vet Parent, not Spouse). Maybe I'll have some sort of grounds w/them since we recently got guardianship. Hummmm, you got my wheels wondering, so will call tomorrow and see if it's possible. Any funding assistance to "Vet Elderly Parent". Yes, I have savings, but I don't want to use my savings...Just looking ahead, because I know eventually we will be hiring somebody to come into the home (once her anger phase chill a little), and as last result NH. I think I'll call the 1800#, and ask tomorrow...I don't think they will...especially w/our upcoming gov furloughs, but I don't think it will hurt to ask.... I know it's a long shot but won't know till I ask. My friend gets assistance for her mom from VA, but her mom was actually married to Vet..big difference uhhhh...
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*****please anyone who is responding to my posts please go to my page, i really don't wanna come here anymore...thanks a bunch****

LOTS OF LOVE LIGHT AND HOPE TO EVERYONE AT EVERY STAGE OF THIS CRUEL CRUEL BATTLE WE SILENTLY SUFFER, I TRULY HOPE YOU FIND THE SOLUTION THAT WORKS FOR YOU, JUST DO WHAT U GOTTA DO TO MAKE IT THRU!!!
LOVE
juju
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ya thanks college we got that part but what i was wondering is cud we go from application date in 2011 back to original inquiry date and dads death when i took her in 2004??
Anyway got for hours sleep last nite thank goodness, first 3 calls...Fiduciary for VA, patient advocate at hospital and home health to see about new health concerns from last Thursday nitemare...
we are moving forward!
i am sooooo fried tho...i need rest now! and more ideas....but i unloaded on fiduciary and she sed she will help us with stuff, not sure what but help is help for now!
Back to bed for a while....
THANK YOU EVERYONE...I FELT LIKE I WAS ON A TRAIN JUST COMPLETELY OUTTA CONTROL AND JUST ABOUT ONE MONTH LATER THINGS COULD ARE COMPLETELY DIFFERENT FOR US

LOVE
juju
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JuJubean, the VA is what I was talking about, sorry I for got to state that with the other comment.
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I was told that from the day you finish all paperwork and sign all paperwork in the package that is the day that starts the time for payment if approved. We finally finished my Momma's package of papers on the 27th of March. So it should be retroactive from that day on until the approval day. That is what they will owe us in pay and should be paid in a lump sum. Then they start paying every month.
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@FedUpNow, OH how I can identify with your perdicament!!! I to am in the exact same situation!! My MIL has taken back her son. She is 93with Dementia/Stroke and other factors as well! She sees him more than I do now because he says, "She needs me, I can't not do it"!! Oh brother is right! This woman tried to hold on so tight to her son, she would even get upset when I would make his birthday cake....!!!?? We have been married 34 yrs and I still vie for his attention, well used to anyway. He has a sister who won't help unless she gets paid for it so she isn't ever there to take up slack. I just had to message you because your situation almost mirrors mine so much and I know the feelings you are going through! Even down to the "It won't be long now..."!! Oh brother,...this woman will out live me! And she is as nasty as they comenow too. She is different when it's just me, than when someone else comes she is all nicey nice! Thank you for the comment, now I know I'm not the only "so called Ungrateful DIL" out here. This is just how my MIL perceives me. Hope you get some time for you. Keep up the banter here, I do enjoy it so!!! Thanks and Bless you for your candor...:-)
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And if my brother sicked APS on me for false allegations would it be wrong to contacting them about him and the credit card theft and bad mark he did purposefully after we left the state with ma to try to get me in trouble for it...what scares me is then I have bounced checks messed a bank account for a few hundred few late fee's etc. and keep terrible records just every receipt I could manage to save in a tote in closet "the tax box" things up here n there(never purposeful) but I have. I never have been good with money and under a lot of stress... will I open a can of worms and myself end up in trouble. I have only opened one credit card ever just few months ago..for a 400 for a new tv for the house online. needed it otherwise....but my crazy brother has me scared to death the other shoe will fall!
I don't see I did anything wrong but will the law???? that scares me!!!!
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Sweet angel of mercy now I got a plan I need some sleep!
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ok lost track still no sleep...but what about MY lossed wages...why couldn't we sue as a team....idk I am desperate, I had a decent job I gave up...I would not only have a home I could pay for whatever we need like getting us the heck outta this county...the second largest beer drinking community per capita in the nation,,,someone told me I digress..anyway we could move to bigger house with fence for dogs and a room for caregiver and closer to my only support my BFF!

Hows that for the power of positive thought...is it a pipe dream, please stop me if it is, lol!!!!
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OK I would like to think there is a reason for my meltdown yesterday was to purge the anger fear from my thinking process and today I am here to ask those who care to answer me directly....
based on lawyers not able to make enough to take our case because moms punative damages would not be worth their time, if we had 58k, to pay off mortage I can guarantee a roof over my head when this is over, which is all I want and most certainly deserve for 9+ years of service....it woulda been gone in1-2 ys in the NH and I did prob 10 ys hard time it should be mine! So I am going to find the strength to fite for us somewhere somehow if I can any portion of that I will from whoever I can. And I thought I saw somewhere the VA bene may be retroactive I read somewhere..i just cant remember where I saw it. Does anyone know. I can find out bout that when she comes out. I knw they are trying to promote the benefit usage and we should have got it from the time I called to inquire what is available to ma, and burial etc we got a plot n a check maybe and sent on our way, she coulda been getting it 7 more years that is 49K...I just have no time she is a china doll and is not eating well any more I am terrified I will not pull outta the abyss in time to save myself

so anyone any idea's???
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I am so happy for you and your Momma that the VA finally approved your Aid and Attendance pension. 20 months is awful long time to wait. I'm praying for your Momma and you. That medicine is scary.
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