Needing to vent: Our parents are like children.

Carol,
I want to thank you for this site. This has helped me so much I can not put it into words. I needed someone to talk to that listens. It is hard for me to get out to a local support group. But I can get on here when I have the spare time. I can see I am not the only one in this situation. Most of all I can converse with others. Some sites do not let you do that. They are invitation only. What good is that? Invitation only sounds like they chose who has the problems and who doesn't sounds fishy to me.
Thanks again Carol.

Roxie, you made my day! I know how hard it is to get out to groups. Groups are great, but wouldn't have worked with me with all of my elders and my kids (one who was sick all the time).

This site has a really good community and I'm so happy to be part of it. Stick with us, Roxie, and you'll have people to talk to who understand. We can't fix your problems, but we can help shoulder the load, and maybe make some helpful suggestions along the way.

Take care of yourself,
Carol

won't say who this is directed at as it can apply to eveyone from time to time, myself included.

when I last posted, I was hoping to draw attention to the fact that it seems that occasionally people's heartfelt pleas for a kind word after a hard day or validation are nothing more than a springboard to launch into a new thread about your own experiences. I love all of you on this board dearly, but it is really hard when I post, having gone through hell, and somebody chimes in with comments that don't acknowledge what I just said, but moves onto their own post consisting of hi to all their friends .....

I am not being negative, just trying to point out that sometimes the people who are the most prolific posters ignore, or drown out an actual cry for some type of help or comfort. Nobody is bad - just maybe they don't recognize what the poster is communicating.

Perhaps this site can develop sometype of emoticons, or way of signaling what each of us is feeling, We could click boxes like - sad, happy, just saying hi, meltdown, need help - what do you think?

I hope that if you are responding to a post, you will try to understand what the person is really saying. I got over my triple whammy day - which is always on my own shoulders. I do not have anyone else to help - I have been through a lot. All I have is brains guts & heart.

take care all of you -- see you later. Gotta go and talk to my dog - who atleast listens. lol

This has not been a good day, as if there wasn't enough to deal with, washed a load of my good clothes and forgot lipstick in pocket and it got all over all of them, have tried everything and five washings, got most of it out, but it started my day the wrong way. As I vented before, my husband has Parkinson's with Dementia and he has also had a bad day of not comprehending and you have to keep repeating and explaining over and over. He writes checks to all of these sucker contest entries and had asked him not to write anymore but found out he is doing it again., He has his own account but does not have that kind of money to waste.
He is such a dear and I don't want to deny him his pleasure of getting mail. He treats it as if he is going to his office to work.
He is on oxygen and cannot sleep in the bed all night so is up and down. Can't think of any food he wants so hard to do a meal as he will only eat a few bites but can devour a whole bag of Werthers' whatever he wants.
I just need someone I could sit down and have a conversation about anything and
it not have to be explained. Sorry guys had to put this down. Betty

Cat
I to am looking for a source that will enlighten me on what more to expect from the disease my husband and I are dealing with. Like, what are the stages of Parkinson's or dementia my husband is 87 years old. Some days he still has the
great sense of humor I fell in love with, other days he doesn't comprehend a simple sentence.

Everyone keeps saying keep your chin up, know where I can buy a neckbrace cheap.

My stomach stays in knots and nausea and doc has tried all kinds of meds to keep me going so I can take care of Earl.

Hang in there and welcome to my world.

OOH forgot to tell you ladies that yes there is something about the anistiesa that affects the brain. you may want to talk to the dr about it. I also forgot to tell you all how much I need you and love reading them then i know i can handle anything im sorry we have to go though this . woulnt it be great if we could meet in person and laugh and have fun its been so long since ive been truly happy maybe i never have growing up with this crazy family . thanks again mia

Hi Betty,
I'm assuming you've gone to www.parkinsons.org? If not, please use that resource. Also, hopefully there is a local Parkinson's organization near you. If not, check with the Alzheimer's association, as at least you'll be getting information on dementia. I write a great deal about dementia on mindingoureldersblogs.com. Some of that may help, too. I've had four types of dementia to handle with my elders, though Parkinson's wasn't one of them. There are many things in common among them, and about 20% of Parkinson's patients also get Alzheimer's.
Carol

Hi Cat,
You've had a rough day, like all the others it seems. Any site will have cross talk among those who "know" each other better, so maybe that's the best reason for starting a new thread on a specific topic. The threads get long and then get more disorganzied. How about starting a thread on an issue that is at the top of your list? It's worth a try, anyway.
Carol

195Austin
I'm new to this site and it's a lifesaver for us caregivers.
Mylife4

Welcome, and please keep coming back. Let us know how you are doing.
Carol

Hello Cat,
Please feel free to tell us about your day. I am so sorry I or anyone else did not respond to your post as we should have. I will pay more attention to the individual post for now on myself. Just hang in there. I know that easier said than done. I have had days I absolutely was ready to pull my hair out. I felt there was no one that could understand or even wanted to listen to my troubles. Then one day it started getting better. So please voice your concerns your fears, or anything that is bothering you. That is what this site is all about. We understand your pain, your bad days, your happy days, and we are hear to listen. We can not give you the right answer but we can listen and tell you what we did in that particular situation. Or you may be able to help us get through a very rough time. I know for a fact the people on this site has helped me very much during my very bad days. I wonder if that is why I am feeling better today. So I hope I can do the same for someone else.
Please Cat keep coming back to the site and posting.

Cat,
I also apologize if I in some way did not validate your feelings. I guess the automatic reaction to a post is to respond with a corresponding situation of our own. We all have different needs, so I'll try to be a better listener. I hope this was a good day for you.
Brendalou

You are all such warm, wonderful people. I think, too, that the natural response is to relate a similar experience, because we think that may give people comfort in knowing they are not alone with their pain. Often that is the right response and helps.

But sometimes all people want is to be heard and hear back "I'm sorry you're having such a rough day." It's often hard to know what will best help someone. Everyone tries their best. Contratulations to you all for your big hearts.
Carol

To Minding Our Elders
I could not agree more, if I had had this site a couple of years ago I would not have had so many meltdowns or flown off the handle--Bless you

You've already made my day, Austin. What a gift you are to this community.
Carol

Cat--I'm goimg to rent life is beautiful and hang in there and keep connecting sand venting you have many others that care-I have been through the wars with my husband inculeing today. Roxie I wish for you for many good days--Bwthrs- hang in there with Johnie

As I read all of the emotions, pains, problems and just day-to-day living adjustments, I have to say that after 15 years of caregiving, I am now at the angry stage. I feel that I have been robbed of my career, my enjoyment of life, caring for a mother who really never appreciated me, siblings who cut me out of their life, and a husband with prostate cancer, depriving me of marital relations.

I want to get all of the caregiving organizations together, along with caregivers who don't belong to any organization and have them organize into a Political Action Group, where we force the federal and state government to give us help.

How many of you have lost your insurance and can't get new insurance because of pre-existing conditions? How many of your children have suffered because you spent too much time with caregiving responsibilities while they were growing up? What about the discension in the house because of the time spent away from your family? What do you do after your parent has died (or husband) and you can't find a job, especially with this recession? Where do we go for help? So many people say try Alzheimer's Association or another group specific to a disease, but other than becoming educated about the disease, I don't feel like I have any friends or hope or help. I am falling into a deep depression which is something that I have fought long and hard to avoid.

Any help you could give would be appreciated.

Recovery

Every word you say is true. Many of us develop auto-immune diseases (I have rheumatoid arthritis). I was divorced during the years when I was caring for my parents and my mother-in-law (I was the only person she knew, and I cared for her until she died). I had to find a non-freelance job at age 56, so I could get group insurance for me and for my son who has many pre-existing illnesses.

There are people in congress working on these issues. Amy Klobuchar of Minnesota is one. She is a member of the "sandwhich generation," too, trying to juggle kids, husband and parents, so she listens. You may want to go on her Web site and see if you can send the message above to her people. You wrote it so well. At least you will feel you've made a political connection.

Keep coming back. We know your pain even though we can't fix it. Many of us struggle financially because of all we gave up. We have no Social Security to speak of, since we don't get that as caregivers. We have no retirement. You are so right. Get political! AARP is also active on that front.

Best,
Carol

I tolally agree,I pay a goodly amount for 15 hrs a week for care for my husband how about the other hours when it's just me. I plan to call the people in my area who got elected or want to this year what they are doing for us caregivers. In our local paper was a story about a man who cared for his frail parents and when he went to work for 4-6 hrs he left them in coffee shops with a newspaper and a cup of coffee to share and he was reported to social services anyway one hot day he left them in his car for 3 hrs. His Mom was able to get out but his father was not able-there was mental issues as well as psyicial- with both.The father died befor the 3 hrs. were up. Fianally caregiving was brought up in the local news. I called the reporter thanking her for the artical and to please continue to address this issue.

hi everyone, well i am finally getting a day off. Johnny's kids finally came and got him yesterday evening but they are bringing him back today. I am so happy that they can finally take 24 hours out of their busy schedules to spend with their father. I know what you mean about being at the angry stage. Every place I go for so kind of financial help I seem to be turned down. Johnny never worked at jobs where he paid into social security so I'm having a hard time with that, I've looked into help from my local goverment and been turned down there also. I finally had to get an attorney to work on this for me. It's not fair to me and my husband to have to spend every penny that we have been able to save because of the life chooses that Johnny made. We have a sister-in-law that is addicted to oxycoten (not sure how to spell it) but she gets over $900 a month from social security and she doesn't deserve it because there is nothing wrong with her. I would just like to know why it is so easy for some people to get it and so hard for others. I'm angry with his kids because they don't help us with anything for their father either. I don't regret taking Johnny into our home to care for him. When we decided to do this we talked to his kids and they all promised to help me with him but they don't. Oh by the way, they really gave me a dirty look yesterday when I told them that I had Power of Attorney for Johnny. So I'm sure that there will be some talking going on today about me with all of them.
Well I guess I have gone on long enough about my problems. I am just so glad to have some place to go and vent the feelings that I am having. Thank you so much for creating this site.

Brenda

Funny how the people who won't help in other ways don't like the caregiver to have POA in order to pay the care receiver's bills. Hang in, Brenda. This is a tough one, but you will survive.
Carol

Roxie, have your tried, through your Area Agency on Aging or an area social service agency (we have Lutheran Social Services around here), or through your state human services, to see if there are support groups you can go to?

You need to get out and talking with people who understand (as you see on this group) is key. If you can find a physical support group, too, it would help. Otherwise, see if your state human services can give you a counselor for awhile so you can vent with them. You need to talk it out with people who don't judge you.
Carol

Carol,
All I have done is look in the newspapers in our area. I will check with the area agencies. Yes I need to get out, but of course that is not always easy. My husband will stay with mom only is he is not working. He comes home at night, eats and just goes to bed. He helps by fixing mom lunches on the week ends, but then in the middle of the night he will say, "I heard your mom moving around" I tell him well go check on her. "No" he says. Then I must get up when he is already up and see if she is ok. And she usually is.
Then last month my 22 year old daughter decides she is getting married in Sept. of this year. In a town 10 hours from us. She lives with us right now. I should have been excited, but I could only think "another thing I have to do" I did not tell her that of course. After the marriage she will live with us for 6 months then move with her husband in Hawaii. Then when he gets out of the service in Aug. of next year. She plans on moving back in with us until they can find a place. Most people would be excited about a wedding, but I am not at this time. I do not know if Mom can make the trip or if she will be well at the time.
Since I am talking so much now I must look for additional help at home through counseling. I thought about going to a counselor, but we can not afford the expense. I do not work, but have returned to a community college to help me through these times. Maybe I can make money later. But the school is also costing us, but I can not stay at home 24/7 I need a break.
I tell my family I need a break away from the house, but they just look at me and say ok when do you want to go to Walmart. Please....Walmart I mean away from here for a week-end. They just look at me like here she goes again "whining"
I will quit now before I write another chapter.

Hi Roxie,
I know about the guilt of thinking "I should be happy this is happening, but I can't because it's one more thing to do and I'm passed my limit." That kind of thing, short-term, is life. Long-term, it's a pathway to depression and health issues for you.

Your state human services (you should be able to find a number on a state Web site) should be able to direct you to some counseling resources that are free or sliding scale.

Go to Wal-Mart??? That's not a vacation, that's one more thing to do! People who aren't caregivers really don't know what it's like to be on call 24/7. There's no getting away from it, mentally, even if you can grab some sleep.

Do try your local helpline, even if it's for alcohol. They are all informed about all issues so they should be able to get you a number. You may have to follow a trail, but you'll find something.

Some states have 211 set up lke 911 - it will one day be national, we hope. If that works, you'll get a menu of all kinds of services to choose from, so listen to that. If you don't have that, check with your county or state social or human services. There has to be help for you.

And keep coming here. We understand.
Carol

Bwthrs

I am so glad you finally got a day at first did you say -now what am I going to do with myself you probably filled it with have to do things and got exhausted-I use to
until our elder lawyer told our son 60 per cent of caregivers die before the ones they are caring for and I said to myself I have not lived yet. That was awake up call, now my husband is in short term nursing home and I'm going to meet with 3 friends from nursing school that I have not seen in almost 50 yrs upstate for 3 days and I don't feel at all guilty I'm going to enjoy every minute of it--my friend could not believe I was really going to do it--I had talked about it for years.

Carol, I think that we all go through the periods where we think that we are losing control and can't take it anymore. Yet, we are the heros. We are the ones that keep getting up every day and take one more step to do one more responsibility or duty. It is who we are. We are special and unique and we rarely take the time to pat our selves on the back to say, wow, I am doing a great job, no matter what anyone else thinks. If it wasn't for me, my mother would have been alone in a nursing home for 10 years, with infrequent visits and would die alone. At least I know that I keep showing up like a bad penny just to check on her. It is the one thing that we have: our integrity and morals. It doesn't help much, but a little bit.

Recovery.

In the end, you'll find it helps alot. You will have your self-respect. You are so bright and have so much to give, I just know you will go on to help other caregivers. I know that "running on empty" is why I wrote my book, so I could tell my stories and those of other caregivers. It's why I began an elder care column in a newspaper, when I thought, intellectually, "Why do I want to do this? It's taken 20 years of my life already!" And it's why I started my Web site and blogs. It's about a need to share what I've learned, and also, I imagine, to make some sense out of all of those years when I wasn't doing what others did or thought I should do.

You are ripe for helping others. It's so exciting. Please do everything you can to take care of yourself physically and emotionally. Stepping out and helping other caregivers will help refuel you. Congratulations!
Carol

Carol- MOE
What is the name of your book-I would like to read it.

It's Minding Our Elders: Caregivers Share Their Personal Stories. It's available on Amazon or you can click a link on my Web site at www.mindingourelders.com. You may enjoy the Web site and blog, as well. I link to this forum from my site and my blogs.

Carol

Hello friends!
Well, I have hund on to the rope, tied a big knot in it, but I feel myself slipping! Today, I literally don't know what to do. I usually feel pretty much in control, or at least know what is going on with my mom, but I am at a loss. Maybe someone caan give me some advice. My mom seems to be losing ground very quickly. This morning she literally couldn't stand or balance herself. I had to drag- carry her to the bathroom and back to bed. She ended up on the floor and I had to lift her to the bed. Sometimes, it seems that her legs just freeze; she can't move them. Obviously, this seems to be neurological, and we had an appoint ment with her neurologist today, but he cancelled due to illness. I just need to know what to expect. It seems that she has gone down hill steadily since she got out of the hospital a week ago. I know that no one has a crystal ball, but if the doctor would just tell me something I would feel better. If I could know that her system is shutting down or what comes next, I could deal with it. This way, I feel like I am standing on thin ice and it is cracking. Does anyone else feel that if you just knew what would come next, you could cope? Is it just me? Because I feel like I want to crawl under the bed and not come out! Any words of wisdom?
I hope everyone else is having a decent day. Take care!
Brendalou