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Caregiver hell

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Old 03-12-2008, 12:21 AM   #1
Join Date: Mar 2008
Location: Vancouver, BC, Canada
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extremelytired HB User
Caregiver hell

This is my first visit to this site but I need to "talk" to someone. I'm an only child and have been taking care of my mother in my home for 3 years. She had a severe stroke and had to give up her home and move to a new city - that she hates - to live with me. She refuses to go into a NH and feels that it is my duty to take care of her. She cannot bathe or toilet herself. Nor dress herslf. Or get into or out of bed. The stroke has severely affected her speech. BUT she understands everything. My mother is very demanding and requires my attention more and more. I'm unable to leave her for even an hour and have had to hire people to be with her when I go out. Very expensive to say the least and I'm reaching the point where I can't afford any more help. I'm at the end of my rope. She gets up to toilet every 1 to 1 1/2 hours at night. So I haven't had 8 hours sleep in a couple of years. I have only had 6 days off since 2004 and then I had to make phone calls to the respite location she was at as they couldn't quite get their act together and she was unable to communicate all of her needs. I'm exhaused, resentful, depressed, sore, and angry. Not a nice place to be. I wouldn't wish this life on my worst enemy. And that's the truth. Sorry for rambling but there is so much to say I don't know where to start.

Last edited by extremelytired; 03-12-2008 at 09:48 AM. Reason: spelling

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Old 03-12-2008, 04:28 PM   #2
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Re: Caregiver hell

Hello extremely,

Have you spoken to her physicians about this?

If not, try conveying this to them.

Would the health care system in your locale provide for a nurse or helper a few days per week?

What you call rambling, I consider as communicating your thoughts; not excessive in the least bit.

Have you ever tried to compassionately express the toll all of this is taking on you? Food for thought.

Take care.


Old 03-12-2008, 05:26 PM   #3
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rdyrmsg HB User
Re: Caregiver hell

Am sorry that you are going through this but your story is a very familiar one.
At some point you MUST save yourself and that means Mom will HAVE to go to a NH. This must happen over and above her protesting, guilt trips, whatever. Sometimes it is difficult to remember who (and I say this very carefully)is the adult and in charge here; that be you.
Do enlist the help of her doctors.
What I did was make an appointment in my mother's name, didn't tell her, and showed up myself. Once everything was clear - - she was not there to run any kind of interference after all :-) - -plans were made and subsequently carried out.
Did she "hate" it? of course. And at some time any one of us might.
A very difficult happening? Yes. But TOTALLY necessary for your survival.
Keep writing here. You will find A LOT of support.

Old 03-12-2008, 09:45 PM   #4
Join Date: Mar 2008
Location: Standish, MI USA
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rundr HB User
Re: Caregiver hell

First off let me say I know first had how difficult it is to take care of a loved one who had declined!! I took care of my grandmother for 3 years before she had to go into a nursing home!! I am also a nursing assistant in a nursing home, so like I said, I know first hand how you are feeling. You are not alone in feeling like life has delt you a crappy hand! You feel like you cant go on, then the feelings of guilt overshadow those thoughts about placing your mom in a home! You are correct when you say you cant do it alone. God bless you for doing it this long!! Unfortuniatly, the fact is your mom needs more care, and if you cannot afford home health, than the nursing home is where she needs to be. They have (most homes do) thearpy that could help your mom more than what you can. I know its a scarry thought for you both. You not knowing how she will be taken care of, and for her, leaving her life as she knows it. My grandmother was extremly upset when my mother and my Aunt told her she had to go into a home. But let me tell you what....when she got in there and settled in, she ended up thanking us for making her go. She was around peers her own age that were going threw what she was going threw, and she recieved the medical attention she needed. (my grandmother suffered a stroke that paralized her entire right side, speech, vision lang. and bowel were also effected) before she passed away at the young age of 94(lol) she had regained 95% of everything! If it wasnt for the nursing, her quality of life would have been much worse, and we probably wouldnt have had her for as long as we did!! Dont feel bad, or like you are alone, because most of the familys that I have talked to have felt the same way you do. Your job now is to find a reputable home, and look into what can be done for your mom. You being stressed out isnt helping you, or her. You do have a life hun, and you shouldnt feel guilty for wanting to live it!! God Bless, and good luck!!

Old 03-14-2008, 01:58 AM   #5
Join Date: Feb 2008
Location: Galloway, NJ, USA
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Marywoo HB User
Re: Caregiver hell

extremly,let me first say YOU ARE A SAINT,and your mom is blessed to have you.caregiving in my opinion is the ultimate sacrifice,my dad had alszheimers for 10 years in the house and it just about killed me.I realize now we kept him home to long out of comletely robbed my mom of her health and took a big mental toll on me,each patient is different his case was extreme,when we finally put him in the nursing home i would go visit him and just sit there and cry,but now looking back I honestly realize we kept him home way to long,you should not be embarassed or feel any guilt if you must make this choice,if i had to make the choice again my father would have gone in the home alot sooner,they are better equipped to deal with these problems and you could go see him dailey.I think my mom would not have passed so soon had we not had all that stress,Iam not saying to put her in nursing home just saying you would have nothing to feel guilty about.My daughter is 21 and works as a c.n.a. in the nursing home and she is wonderful with her patients,Iam very proud of her she really has the heart for that job,if you do have to put her in a facility, just makesure her c.n.a. is there for the right reason (in other words not for the money) and honestly she will be better off.can I ask how old you are?please dont be afraid to ask for help their is always someone on hear willing to listen. GOD BLESS YOU you sound like a great child. iam praying for you. marywoo

Old 03-14-2008, 03:08 AM   #6
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Re: Caregiver hell

Hello extremely,

If you are stuck between a rock and a hard place, remember that you have to figure out what is best for the both of you.

Take care.


Old 03-16-2008, 06:57 PM   #7
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SherryAnne HB User
Unhappy Re: Caregiver hell

WOW....I see that I am not alone in CAREGIVE HELL!!! I take care of my mom who was dying of extensive small cell lung cancer....but now cancer mets have disappeared and tumor in lung 1/3 original size. Doctors say "miracle". That would be great if that were the only thing wrong with her. Unfortunatly, and please don't take this the wrong way, but it would have been a blessing if the cancer took her life as it was supposed to. The other health issues she has now (neuropathy in leg) there isn't even anything that will dull the pain let alone take it away. Believe she now has lymphedema along with many other issues. She is already an amputee of the right leg for the past 14 years. Not looking for the left leg now. The list just goes on and on and one and on!!!!!! And, yes, I am her primary caregiver.
She is completely miserable and has made me the same way on the roller coaster ride for the past 14 months. Mom has lived with me and my family for the past 5 years, but I've been taking care of her for the past 10 years.
I am also tired, frustrated, angry....but most of all, I am so ticked off that I have had to miss so many functions in my kids' last years here of high school that I just cry constantly. THIS JUST ISN"T FAIR.

Oh, and a NH is out of the question. Not only does she not want to go to one but I can't even put her in one because her name was on the deed to my home just a year ago. They will put leins on my home(and the money will have to be repaid prior to selling) or I will have to pay about 9,000 per month they charge. I cannot afford either option. I am totally screwed here!
Talk about being trapped. I am as trapped as they come!!!
I can just feel the anger coming out in this post and I am really sorry about that.

Anyway, didn't really mean to get into all of that...just wanted to let everyone here know they certainly are not alone.

Old 03-22-2008, 07:16 PM   #8
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TopamaxKillsMe HB User
Re: Caregiver hell

I can completely relate to a few people on this thread. I wanted to move my mother out to LA because my siblings weren't doing anything for her in Florida but because of the fact that she's a charity case at her hospital, I was afraid to bring her out and have to find a new hematologist that I trust. So I made the big mistake of moving to Florida, a state I left almost twenty years ago with no intent of coming back to.

My mother's health has improved since I moved here but all I hear are critical statements from her mouth. I tell her something, she disagrees and insists that she's right so I let it go. Then she'll tell me how the people from her church do so much more for her and then (and this is what really irritates me) she says she's doing me a favor because I don't have to pay rent.

A) If I was still in LA, I'd be working and therefore would be able to pay my rent and I wouldn't have my mommy treating me like she did when I was 14. I"m 40 now.

B) I can't find a job here because my market is in Entertainment and this town is all about insurance and healthcare, two fields I know nothing about, and

C) All I do for her shouldn't make rent an issue. I spend most of my time waiting on her, taking her to and from the hospital (if I don't stay with her the whole time because I have work to do, look out, here comes the guilt).

D) If she wasn't so difficult then maybe, just maybe, my siblings would have offered to help her. Even though they don't, she bends over backwards to get them to come out every couple of months for some meaningless conversation. I don't even speak to my sister anymore.

I don't understand how I've inherited this. I am not the child that chose to stay in this state so why then did I come back here? For my mother. If she showed any sign or appreciated, didn't whine incessantly about every single thing, then it wouldn't be so discouraging.

I really wish I would've stayed in LA and let nature takes it's course in terms of my mother's health. I feel terrible saying that but I just want to be free again.

I wish I could hug all of you. I know exactly what you're going through and it's brutal.

Old 08-16-2008, 09:25 PM   #9
Join Date: Aug 2008
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mystie64 HB User
Re: Caregiver hell

for those of you caring for a parent who wants you to be their caregiver , if parent is agreeable sit down with a lawyer ,you can do promisary notes against their home,parent signs this note ea month for care, add it up 24/7 with a health care agency is sometimes 22.00 per hour which you are providing, in no time you will have eaten up the price of the home in services, in other words you have a lien against parents home if they still own one in their name, because your not getting paid for this service at the time, being POA helps in case parent becomes incapable of signing, long as your still caring for them you can sign notes, if parent does have to enter a NH your lein comes first, to try claim $ for your services later their usually aren't any funds left , COVER YOURSELF,please speak with an elder lawyer pertaining to this, everyones circimstances are different, aggravates me when 1 of 3 or 4 sibblings has to undertake this job giving up their life, job, ruining own health while other sibblings go on with their job, travel, then have their hand held out wanting their share of estate, i repeat get your own laywer if parent has one, just my two cents worth

Old 08-24-2008, 07:16 AM   #10
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SherryAnne HB User
Re: Caregiver hell

Hi Everyone....Since my last post here in mid March, a lot has happened. I feel the need to redeem myself because I can see now the entire picture of being a sole caregiver.

I continued to take care of my mom until the angels came on July 18 to take my Mom to Heaven with GOD for all of eternity. It was the most difficult job
I have ever been given in life so far. There were certainly many days when I felt completely miserable for various reasons. But I am glad those feelings always passed away quickly with my prayers. In my Mom's last month of life, she suffered terribly with pain from the cancer. She bacame bedridden as she could no longer eat and probably died of starvation. It was very difficult for me to watch...but also very humbling. I know now that each and every day that I struggled with having to take care of her was worth every miniute of my time and effort. I loved my Mom so much I can't even express it in words. She was always a good mother and I miss her terribly.

Now that Mom is in Heaven, God has blessed me with such PEACE in my heart that I am forever grateful. So just keep in mind that as you are caregiving, that is the greatest gift you can give someone.

My prayers are with all the Caregivers for strength each and every day.
May GOD Bless all of you.

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