Caregiver. That pretty much defines me because I have lost everything else that seems to define me.

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Caregiver. That pretty much defines me because I have lost everything else that seems to define me.

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B burnwajaco Jul 2012 · Answer 1 · 2012-07-27T13:27:08.000-0400

Hi, I am new to this thread. I am caregiver to my husband. He is 66 and acts like
an 11 year old. He had strokes in 2005. Phys. he gets around good but strokes affected him mentally. He now has frontal vascular dementia/ azd. He also has seizures from brain injury in wartime. He can be a real hand full.
I understand all that the others are dealing with. Wanda

H Hank4422 Jul 2012 · Answer 2 · 2012-07-27T14:32:16.000-0400

1. Don't feel guilty (if you can) You're only human, not some freakin' "Super-Saint"...

2. Don't know your siblings, but if they're not helping you and supporting you then shame on them! They should feel guilty!

3. It IS okay to think about yourself. You can't help anyone if you're dead of flat on your back in an ER with a heart attack.

4. I don't know if you're a saint, but certainly a decent, caring individual! (and if you're like the rest of us, a little bit of a naive, gullible doormat - use this as an opportunity to wise up and get tough! [I tell myself the same thing])

M momhouseme Jul 2012 · Answer 3 · 2012-07-27T14:32:38.000-0400

Just curious what war(s) did he serve in. He's so young to have been struck by strokes, dementia and AD. My father was in WWII and he had ptsd and depression.

J JanN Jul 2012 · Answer 4 · 2012-07-27T14:41:42.000-0400

echo echo echo - I hear the echo of all the things I think and do here - I just hope that by joining with each other we can have the strength not so much to 'carry on' but to 'survive' and thrive once we eventually get our own lives back. Hang on in there, I intend to!

B burnwajaco Jul 2012 · Answer 5 · 2012-07-27T14:54:32.000-0400

Suzmarie, He did 2 tours of duty in Viet Nam. Yes he is young for all of this.
Wanda

P patdoug Jul 2012 · Answer 6 · 2012-07-27T19:36:26.000-0400

Wow, this is great! I sure needed to read these comments today to know someone else is in my shoes. I have being caring for my 7 yr old granddaughter with Autism since she was 2 yrs old. 2 yrs ago I moved to AZ from MO to care for my dad with Alzheimer. My husband moved out here 1 yr. ago, for we are selling our dream home in MO. It's like taking care of 3, 3 yrs old sometimes and my granddaughter is being good. I'm hearing the echos too and I know there are more of me out there, doing are very best even on those really bad days. Keep the good work up!!!Hang in there, were with you.:)

P pamela12 Jul 2012 · Answer 7 · 2012-07-28T00:31:55.000-0400

I thought I was alone until I found this site. I have been taking care of my mom for 12 years. For the last 5 years in my home. I have felt very alone. My husband and son has tried to understand. But, their not here all the time. I get very little help from my sisters. So, I feel burned out, angry, guilty,like no one could possibly understand. I haven't been on this site long and this is my frist post. But, I think I found some understanding folks. Thanks for reading.

A anonymous95109 Jul 2012 · Answer 8 · 2012-07-28T04:36:32.000-0400

Hi everyone: I think terrimerrits has either been banned or left AC. If you look back at her last post, she is now under the name of anonymous and you can't click on her name. I understand that some other posts she made were reported and have been removed from their various threads.

I admire all that you do for your elders. I took care of mine for 7 years and just a couple of weeks ago placed my dad in nursing home care. It was a very hard decision to make and I dreaded doing it. I now see him all the time and he is making the adjustment. I feel bad, but his 24/7 care was taking it's toll on our health and my husband and I needed to have a life too. We retired 8 years ago and are now, for the very first time, realizing that we have an opportunity to have our own routines. We are going to have to figure out what those routines will be because from the time we retired, it's been all about my parents. My mom has passed and my dad is getting very good care in the nursing home.

I know everyone has their own journey. I hope all of you can find a way to take care of yourselves. Mary, I do worry about you. You've done so much and I wish you could recover your life. I know you will do what you can, but if you ever want to talk, just post on my wall.

Love to all of you, Cattails

B bbrady Jul 2012 · Answer 9 · 2012-07-28T19:50:53.000-0400

A note to the person calling their self anonymous... You either have lived in our shoes and decided that the walk was just to hard and long or you are the family memeber that thinks they have no responsibility to the person in need of care. I would like to think you realized the walk was just to hard for you! There is nothing wrong in finding the road too hard, to relentless, to demanding! That is what all of hope to find in this site.. Support, hope, a shoulder and an empathetic ear! You sound like you have had a bad time with whatever your life has been. The saying about "misery" loves company...does not relate to the caregivers that have given more then they have...mentally, physically and rationally. We are a family in our own rite. We understand and we stand as a unit no matter where we all might live. We are sisters and brothers here.. We are here to hold each other up not tear each other down and definitely not to make any of us feel more inadequate and helpless then we might already feel. We must stay strong and we must help each other to know that we are not alone,if only because of this site.

N N1K2R3 Jul 2012 · Answer 10 · 2012-07-29T07:59:53.000-0400

My heart goes out to all of you who are suffering due to the care of your elderly family member/ Doesn't ANYONE have the so-called Long Term Care Insurance? (private). This was a big seller back in the early 2000's. The only relief you are going to get is to PAY SOMEONE to take over the care. I don't see it any other way.....whether it be a Nursing Home, an Inhome caregiver, or Assisted Living with 24 hour watch. Money speaks. Sorry. Until this country realizes that the care of our elderly is as important and time-consuming as infant care but more draining, and therefore should be allowed under a Single Payer system of medical care, then many will suffer and suffer badly.
I'll take heat for this comment, I'm sure..

M Mary213 Jul 2012 · Answer 11 · 2012-07-29T08:53:59.000-0400

I agree with your point on long term insurance.
However, much of the healthcare our elderly receive is pretty good.
.
In my opinion, many of our elderly would have died long ago without this good healthcare, so now, we have older, sicker, more dementia than we used to. It is not that the system doesn't value older people, it is that the system is overwhelmed with needs it has never faced before.
Think about it. When you were young, did you even know about Alzheimers? Did you think that they would give chemotherapy and radiation to an 83 year old woman? Thirty years ago a broken hip was a virtual death sentence.

I dealt with geriatric care almost 30 years ago. I was in and out of hospitals and nursing homes with my grandmother. - in the big city.
This go-around, the difference is like night and day, so much improvement, so much better, gentler, cleaner, faster, overall better medical care, actual improvement and more comfort and less pain for the patients. - in a small little town in Florida.
.
The nursing home is clean all the time. The nursing home does not smell!. My mom is clean all the time. The patients in the halls are aware, friendly, they smile and they are wearing their own clothes. There are activities, a dining room that isn't horrible, pets are allowed to visit, and so on. A huge improvement in 30 years. Thirty years ago the patients in the nursing homes were really, really sick and frail and usually were not mentally sharp. Now, excepting dementia patients, their old bodies are giving out long before their minds. Dementia patients seem to be almost opposite.

The folks on this board are doing a very hard job that their parents probably never faced. I have been doing some reading on the board and I don't get a lot of complaints about the crappy medical care. Folks are generally dealing with the 24/7 care that is overwhelming them and smothering any life/fun they had before. They generally seem to just want a little help, a break, a vacation, someone to share the burden with. The folks on this board are, generally speaking, doing the day to day care at home. Single payer won't help.
If you think other government medical care systems are better, make sure you have done your reading. Read about Canada denying older people surgery because the cost-benefit ratio is not good (too old, won't get many years out of that knee replacement). Read about England that has been helping old people die without their permission. Little countries like Sweden have so little in common with the US that their system would never work here (small population, quite homogenous population, different culture).
And you may want to ask: What do other countries with government run healthcare systems do with Alzheimer patients?
.

N N1K2R3 Jul 2012 · Answer 12 · 2012-07-29T09:26:21.000-0400

Dear Mary, I stand corrected on many issues. Healthcare here is much better than most places in the world. It's the caregivers that I was addressing....these people are the burned-out crowd of people who work endlessly and take verbal and physical abuse (sometimes) when caring for their elderly relatives. As I mentioned, the only relief , as I see it now, is to pay for relief....Inhome caregivers, Nursing Homes, Assisted Living Facilities and possibly a group home. ugh.

B bbrady Jul 2012 · Answer 13 · 2012-07-29T09:26:33.000-0400

Hummm... Ok N1K2R3... You really see things in Black and White... I have a sister that sounds a lot like you.. "cut and dry"... I would venture a guess that most of the cargivers on this site are in the situation that they are because of human compassion and love for the person they are caring for. In my situation... I am caring fulltime for my daughter who is 29. Gee I guess that I never gave it a fleeting thought that my daughter would have a heart attack at age 23.. I sould have realized that my x son inlaw would screw her over and leave her in limbo for "greener pastures"... I Love my daughter.. my husband loves his daughter... but guess what... humanity doesn't live in the government. My expectations for my daughter was that she would slowly but surely get better. Get back on her feet. Be the young person I had envisioned when she was 5,10 and 23!!! NOOO... it has not happened... 6 years later... I am burnt out... crispy fried... I have no funds. I don't know where you come off thinking that all of us were just so damn stupid to ... "pre plan" for disaster. It might just be that we love our family... that we just need some relief to balance out the crap in life that we are all facing...

V victoriak68 Jul 2012 · Answer 14 · 2012-07-30T04:55:29.000-0400

N1K2R3, What's the definition of "burned out crowd". I'm sorry but I feel offended, if not for myself then for the many others on here that may or may not be burned out. I wouldn't necessarily refer to those of us that are currently caregiving for someone as the "burned-out crowd". A lot of us feel burned out a lot of days, but to label us "the burned-out crowd" is very offensive. Then to say, "The only relief you are going to get is to PAY SOMEONE to take over the care...." Wow. Yeah, we feel burned out a lot of days, but we CHOOSE to do what we do. I would prefer that you not tell me what relief is available to me. Bottom line, while I understand that your heart may be in the right place, the way you're phrasing things is going to tick number of people off.

M Mary213 Jul 2012 · Answer 15 · 2012-07-30T08:08:38.000-0400

And try to remember, people have their sick family at home because of personal finances, but usually, because they do not want to put their loved one in a NH.
,
As I said before, NH's are SO much better than they were 30 years ago, but, they are still NH. A stranger is caring for your loved one............
.
An example: when my kids were young I always wanted to stay home with them. Lots of reasons, love, compassion, happiness, responsibility, but one point that is rarely spoken of,.............at home I knew the quality of care they would receive. If they got yelled at, I knew what was said. If they got a lousy meal, at least at home I knew what that lousy meal was and I knew how much they had eaten. If they scraped their knee, I knew that it was cleaned properly and in a timely manner, and there was a kiss and a hug given. This does not mean that I hate child daycare........I have used daycare and my kids were really happy to have other kids to play with, but my daughter, for example, had diarrhea almost every Friday for months and months. The daycare was adament that staff wash their hands properly, had signs and a handwashing station, was not overstaffed, clean staff, friendly, lots of laughter in the halls, clean place, clean kids, but when she did not go to daycare, she stopped having diarrhea. So, she stopped going to daycare and she didn't have diarrhea anymore.
Folks who keep their loved ones at home think like that. Government services are not going to change that. Family and friends stepping in to help, really help, is what is needed. No government can ever do that.

Q quakerite Jul 2012 · Answer 16 · 2012-07-30T08:34:31.000-0400

Mary213 - I'm with you. However, my aunt is with me not just because of finances (what are those?) but also because nursing homes in Indiana are practially at the bottom of the list in terms of safety, cleanliness, you name it. As a nurse, I worked at a nursing home here in South Bend once - I lasted 6 days. The abuse I witnessed - physical & mental- the stealing, the absolute indifference - it was beyond appalling. So, I quit, filed a complaint with the State and 2 days later got a call from an investigator telling me she had verified every single charge I'd made, except one. And that was because the resident was too afraid to speak, for fear of repercussions. The state ended up firing every nurse and CNA, as well as some management. In a few days, the place reopened "under new management," rehired the nurses and CNAs, instituted a pizza day, and went on as before. And this is not even the worst place! But finally, I would never put my aunt anywhere. She was the first person to hold me. She was more of a mother than my own mom. No nursing home is going to make her coffee and arepas (she's Colombian originally) for breakfast, or sit up at night watching John Wayne and Robert Duvall movies eating butter pecan ice cream with her. I am part of the burned-out crowd some days, but hey, we're part Phoenix! We rise!

L ladee1 Jul 2012 · Answer 17 · 2012-07-30T08:45:43.000-0400

And I am just damned proud to be part of the 'burned out crowd'.....

H harleighkwin Jul 2012 · Answer 18 · 2012-07-30T11:42:49.000-0400

I disagree VictoriaK--I believe that you yourself haven't yet reached the 'burned-out' point that the rest of us are at...if you did, you'd understand. Do you wonder what to make for dinner every night that's tolerable with ALL the diets restrictions? Do you have a lock on the fridge, an alarm on the stove and on the doors of the house in case the Alzheimer person you're caring for gets up in the middle of the night?? Do YOU go through the morning PRAYING the person your caring for will take a nap for at least 20 minutes so YOU yourself can take a shower and wash your hair so the medical supply delivery person doesn't think you are disgusting? "Burned-Out crowd" is EXACTLY what most of us are, as N1K2R3 has said. Those of us strapped for finances have to deal with the painful realization that nursing home care isn't an option because the world is about MONEY, not people. Please understand when those of us that are dealing with the constant bowel accidents, vomit, adult diapers, bedsores, catheters, foot problems, verbal abuse, dysfunctional medical equipment, prescription drug side effects and percentage bills of things medicare 'didn't cover' ARE in fact BURNED-OUT. And I HOPE you NEVER get there!

M Mary213 Jul 2012 · Answer 19 · 2012-07-30T21:45:23.000-0400

We do not have control over the financial plans our loved ones have made. Sometimes they had no money for long term insurance. Sometimes they were foolish or short-sighted. Maybe they were too busy working to put food on the table to get financially secure and independent.......................
These great folks here step up to the plate when things get difficult, usually without thinking about themselves first. We do the best we can with what we have handed to us. We could walk away-wash our hands of it because it is "too hard" or we are "too busy"..................
Money helps a lot. A real lot. But it doesn't provide love................

A anonymous95109 Jul 2012 · Answer 20 · 2012-07-30T22:04:36.000-0400

In Victoria's defense, she's been through as much as most, starting from childhood. She may not be as burned out as others, but let's not hold that against her. She deserves better. Cattails

V victoriak68 Jul 2012 · Answer 21 · 2012-07-31T04:20:22.000-0400

harleighkwin, are you kidding me? You're going to attack me for disagreeing with me referred to as the "burned out crowd" and being told that I should dump my mom in a NH? I've been taking care of my mom for more than 10 years. YES, I know what it is to have to child proof everything and then some. To go to bed at night and PRAY that all is well when I wake up because there's no one there to take the shift when I sleep. Do I feel burned out at times? HELL YES! Do I allow it to be who I am and to control who I am? I try like hell not to. OMG, thought we were all on the same f'n side here.

V victoriak68 Jul 2012 · Answer 22 · 2012-07-31T04:24:34.000-0400

Thank you cattails. But I never said I didn't experience burn out. I have a lot of days that I feel that way, I never said that I didn't. Why am I here if I didn't??

V victoriak68 Jul 2012 · Answer 23 · 2012-07-31T04:48:42.000-0400

I'm done with this discussion. I don't like the phrase "burn-out" as it scares the hell out of me. Burn-out is a warning that is to be heeded and not ignored. To be put on the defensive because I refuse to accept the title and I'm trying like hell to avoid it. I've been needing a support group for over a year now, but have not been able to have the freedom to go to one. I thought this site was an awesome alternative for me and up until now it has been. I've seen an awesome change in me and the way I interact with my mother as a result of being here. However, I won't be judged and condescended to when all I did was defend the group. N1K2R3 suggesting that we just dump our loved ones in NH or the like offended me and I expressed that as nicely as I could.

L ladee1 Jul 2012 · Answer 24 · 2012-07-31T06:35:10.000-0400

Victoria, you don't have to go anywhere.... please listen to the many voices that speak here.... and no, you do not have to 'take on' the title of burned out.... we all have some bad times... and no, not all of us will 'dump' our loved ones in a NH... some have to place thier elders for many reasons... and that is to be supported too.... your voice is important here...
We can all be a 'testy' bunch on any given day, myself included.... so take what you need and leave the rest... one of my credo's is... "what others think of me is none of my business"... I know what I do, how I feel, what I think, and how I respond.... so take a few breaths, and get back on here and share, vent, laugh, support, all the things you've been doing..... hugs across the miles to you....

L ladee1 Jul 2012 · Answer 25 · 2012-07-31T06:41:19.000-0400

Victoria, another thought..... you owned that the term 'burned out' scaires you... that is very important.... sometimes we see that as unable to carry on, or that we have failed in some way.... no, for some it is very serious and other arrangements have to be made.... but for you, you are doing a wonderful job caring for your loved one.... and don't let that term scaire you, it only has as much power as you give it.... hang in here, we need you here.... hugs

V victoriak68 Jul 2012 · Answer 26 · 2012-07-31T09:18:11.000-0400

ladee, thank you. You definitively are a gem and then some. I really didn't mean the word "dump" as if anyone that is faced with the decision of placing a loved one in a NH is doing that. That's just how it came across to me when N1K2R3 was talking. Eventually, I'll be having to face that decision myself, because I am the only person my mother can rely on, there will come a time when I will have no choice. At this time, it's safe to assume she will live long enough. The doctor has even said that aside from her dementia she is actually in better health than she's ever been considering her age and having a heart condition. She's doing so dang good she hasn't needed but 1 nitro-glycerin pill in the last year, which is a big switch from the old days before the dementia.
Anyway, burn-out. I did get a little sensitive over that word, no question. I have reason to be sensitive over it. If I misunderstood N1K2R3's intent, my apologies. My heart was in the right place though. But that doesn't excuse harleighkwin becoming all high and mighty with me. She assumes that she knows me and my situation and knows exactly what my situation is with my mom. "I hope you never get there" is what she said in the end. OMFG! I got there a long f'n time ago. Excuse me, she "believes" she knows. *pfft*!!! She knows nothing about me and she's behaves like she's the local expert here. Oh yeah, that really pissed me off and still does. Everything she accused me of not having had experienced I've experienced and then some. I RESENT the assumptions and the presumptions and no one here has a right to lord their experiences over anyone else EVER! I may be new to this community but I've been doing the same damn thing as the rest of you for a very long time and without the beneifit of friends or my sister to support me either. My friends walked away from me when I made the decision to be my mother's full-time caregiver. No one calls, no one seems to give a crap about me. It's also completely humiliating to have my daughter look at me with pity because I was so tired I forgot to shower....for the SECOND day in a row.
I won't be rejoining this discussion, but I refuse to be chased off this site by the likes of harleighkwin.

A anonymous95109 Jul 2012 · Answer 27 · 2012-07-31T12:28:59.000-0400

Victoria: I didn't mean to imply that you are not burned out some times. There is no way you couldn't be. I see you as someone who has managed to handle many of the challenges of care giving and a life long difficult mother with exceptional grace.

Ladee is right. People do get testy sometimes, myself included. I think H is dealing with tremendous pain, anger and frustration; it pours out in her posts. It doesn't really have anything to do with you, it's just where she is in her journey.

Stick with AC. I'm glad to have you as my friend and look forward to talking more on other threads. Hugs, Cattails

P patdoug Jul 2012 · Answer 28 · 2012-07-31T16:31:23.000-0400

I'm new to this site and I'm glad to hear about someone like yourself. I have found too that I have lost friends I thought were "true friends", no one invites us over for cook-out anymore, I see them at the grocery store and it's like the best friend thing again, but I know its not real. But thats okay with me, I'm doing what I want to do by caring for my granddaughter with autism and my Dad with Alzheimer. They are the joy and important people in my life. People at the little bar where my dad goes tell me they don't know how much longer they can tolerate my Dad, well it sucks to be them cuz I will continue to take him down there as long as I can. It is something he really looks forward to in the evening, along with breakfast at Denny's Monday-Friday. I get to have breakfast at home on Sat. & Sun. I am doing what I think is best. I'm not going to wait for someone else to step in because this is my choice, plus my sisters are to selfish and let the past rule their lives. I tell them there is nothing you can do about yesterday but learn from it, live for today and don't worry about tomorrow cuz its not here yet live for today and make it the very best you can. Thanks to you too Cattails. :)

M Mary213 Jul 2012 · Answer 29 · 2012-07-31T17:14:58.000-0400

PatDoug,
I really like your attitude.
I admire your strength and determination.
I love the "it sucks to be them" !

P patdoug Jul 2012 · Answer 30 · 2012-07-31T17:21:25.000-0400

Thanks Mary. I call them my fair weather friends, with closed minds. I take each day as a new day. That's the only way I make through some days. :)

Caregiver. That pretty much defines me because I have lost everything else that seems to define me.

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