Needing to vent: Our parents are like children.

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

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

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

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

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.

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

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

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

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

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

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.

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

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

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

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.

Side effects of medications caused my dad to have unbearable pain, and he couldn't articulate it, as the surgery had put him into dementia. No one knew what was wrong for the longest time. He wanted to die. Finally a doctor's assistant thought of one drug that could be causing it (and he didn't even really need the drug - it was to prevent a seizure if he were prone, and he'd never had one). They took him off the drug. It took a long time to leave his system, but he got better and that pain was gone.

All medications have side effects and elders are more prone to them than anyone, as their bodies are usually not that efficient at metabolizing the drugs. So each medication needs to be screened, and whenever a new one is added, we need to watch for changes - bad as well as good. It's an ongoing thing, but necessary.

This is the greatest group of people! I love seeing how you all help each other.
Carol

Thank goodness you have found a medicine that makes Johnny happy. That would help out so much. It does feel good to get away for just a while. It makes me into a new person.
Have a good day.

I know what you mean about the meds. Johnny has so many that I spend alot of time on the internet researching them to find out exactly what they are and what side effects they can have. The ativan seems to be working. Even though his mind is gone at least he can be happy about it. He has been singing since he started taking it. That will probably get on my nerves in time but for now it is ok.
Glad to hear that you were able to get out this weekend roxie, it does help even if they are with you. Rick (my husband) watched Johnny all day yesterday and I got to spent a few hours in the swimming pool. Even though Johnny was still here with me it gave me a break letting Rick tend to all his needs for a change.

Hello Everyone,
I just want to Hi! How is everyone doing? It seems we are doing pretty good.
Brwthrs, I am sorry to her about your brother-in-laws family. Just remember we are in this together. If you need us we are here. My mother's family does not even visit with her. They have not for some years now. They live a block away and drive by everyday at least twice. So I can understand where you are coming from. When they see my daughter they fall all over her, but do not ask about mom. It irratates her so much. But that is something sometimes that you must let roll off your back. There will come a day when his daughter will regret what she has done.
A few post back someone had asked what type of medicine my mother was taking- it is metoclopramide. It is a generic. It is suppose to help her digestive system.
Yes I had to do the research because when I called the DR. office they just give her Xanax. I had to go to the internet and look up the medicine myself-that is where I found all the side-effects that she was having. When I called back and informed them she had all the side-effects their respond was "You got to be kidding. I replied "No" I looked it up on the internet. "Well then you must take off that for a few days and let us know how she does" That I did already. One step ahead of them. I usually do look up the medications I did not have time until it too late. I go to school and this was during semester week.
Not an excuse, but I was just being lazy. Everytime she gets a new medicine I always go to WebMD or the RX site to look it up and educate myself on it.
Yes I agree with you brendalou the elderly can not take medications like anyone else. It seems their system is more senisitive to all things. I learned that many years ago with mom. I have to keep a list of medicines that she can no longer take to give to the hospitals and drs.
This week-end I got to work off a lot of stress. My husband and I cut down a huge tree and cut it and burnt it. That felt so good to get out and really work my body and let my mind rest. Mom was out with us when the heat would permit the other time she would sleep.
Thanks everyone....

Again, I seem to have lost most of my message! Cat, I was trying to say that I think we are all just looking for a listening ear and a little empathy. These are hard and unfamiliar roads that we are navigating. I understand that feeling of pretending that all is well in the "real world". However, I have hound that it is easiest to be honest with my co-workers (my friends all know my situation) about my caregiver situation. People seem to be pretty understanding of "mom" emergencies even if they really don't get the scope of the problem. I know about being torn between loving my mom and wanting to care for her and just wanting to be able to have a normal life - go to dinner or a movie- like the rest of the world. I think one benefit of this website is realizing that my situation could be a whole lot worse. I guess everyhting in perspective! Welcome to the club!

Hi Ct,
I know what you mean about sharing experiences

Wow Brenda - you have such a wealth of knowledge

Taking it in good humour, I'd like to clarify my earlier post It is not the-talking about diaharrea that is comforting, seeing that others share the same experience is. In my social and professional life I must pretend everything is ok & not a problem; to colleagues, 99.9% of my friends and neighbors. None of them are aware that my newfound "free spirited" lateness is due to last minute caregiving which includes poop emergencies. It is wearing because I love my mom, and wearing on my spirit to have to cancel with no notice, or come in late for things.
I posted my comment because I hoped I could join in the conversation and this group.

not looking for sympathy, just a chance to connect and join the club

Happy Saturday to everybody!

Hi Ladies!
Isn't is funny how comforting it is to talk about diarreah? I guess it is just a part of life! Roxie, I understand the frustration of dealing with that in the middle of the night. We went through that a few years ago. It actually turned out the the heart medication (Quinidine) that the drs put my mom on was causing not just diarreah but loss of balance and mental acuity! (They put her on that drup after the last medication (Cordorone) cause pulmonary fibrosis in her lungs.) She ended up in the hospital for 4 months after taking Quinidine! She spent 10 days in ICU and months in the extended care trying to get strong enough to come home. We qctually ended up having to put in a feeding tube. We were able to remove that pretty quickly when she regained her strength. I say all this to encourage everyone to REALLY keep a close eye on medications and their side effects. Many meds have a stronger effect on elderly people and drs are not always forthcoming or knowledgeable about the side effects. Roxie, can your mother take lomotil? That really helps when my mom has diarreah. bwthrs- I'm sorry to hear that your niece is being so uncooperative about helping with her dad. Would it help for your husband to talk to her? It is so frustrating when "adult" children refuse to take on any responsibility or acknowledge that a parent or grandparent needs help. I know that we are all tired, but it is so great to have online friends who understand how frustrating and heartbreaking it is to care for a loved one. Thank you all for being there!
Brenda

Hi Roxie-
thanks for what you wrote about your mother. My mother has diverticulitis so we go through that frequently, with the exception of having a homeworker & it is strangely comforting to actually read the same experiences but into writing by someone else. I had to cancel a respite break yesterday to come back home & take care of it.

just tired

Hi ladies, I'm so glad to hear that your mother is home from the hospital Brenda, I know everytime Johnny goes to the hospital I think, ok Im going to stay home this time and get some much needed rest but it never works out that way.
The doctor has put Johnny on a new pill. Its Ativan, he started taking it yesterday and it seems to be working. Johnny even thanked me for his super last night. I was so surprised and happy about it. The doctor called it a happy pill, now I know why. The doctor said that it should help him being so mean to me and it seems to be working. So far so good.
Roxie what was the new pill that your mother was on. Sorry to hear about the diarrhea, that alone can make you feel so agitated, but you sound like you handle it very well. You sound like you are a really good person.
I know what you mean about this site, I get online and check here first thing every morning before I do anything else. It helps me get through the day.
I talked to Johnny's daughter last night and told her that I needed some help with her dad, she said she knew but she was really busy right now, I told her that I am with him 24/7, I could really tell her about being busy. Anyway she said she had to go and she would call me right back, that was yesterday evening and now its the next morning, I'm still waiting on her to call me right back. Whats the odds she doesn't call me back. Oh well. I knew she wouldn't.
Well I have drank my coffee and I have to get a shower and start a whole new day. Talk to you all later.
God bless ya'll
bwthrs

Hello Ladies,
Brendalou, I am so glad your mother is home with you. It is easier if they are with you.
Bwthrs, I am glad you got to visit with your old friend. It is nice to have them come back once in a while so you can remember who they really are. When my mother does this we have the greatest time. Which the times are fewer and further apart.
I see everyone is still hangin' in there. We had an exciting last couple of days. My mother woke up thursday morning about 4:00am with diarrhea. It was everywhere on her, the floor, the bed etc. I was trying to get everything together to clean and had ask her to take off her gown. She took off her diaper instead. The diarrhea was everywhere then. I didn't lose my cool too much. I was very proud of myself. Then only thing is I had to give her a shower at 5:00 am to clean her up it was from head to foot. I finally got done at 7:00 am and turned everything over to the homemaker. That felt good to get out after that.
Also she has been on a new kind of medication. We had to take her off of it. She was getting more confused, her tongue was protruding, she was so weak so could not do anything, so anxious and could not sit still. In 24 hours she completely turned around. Amazing what a little pill can do to a person. My mother is going to the bathroom every 10 minutes it is about to drive me crazy.
Since I have found this site I feel so much better talking with you ladies, you help me very much each and every day. Thanks again for listening or I guess reading and replying it does help.

Just thought I would see if everyone elses's Friday night is as exciting as mine! Fixed my mom's dinner, took her to the bathroom, got her ready for bed, back to the bathroom, put her to bed. The excitement never ends (LOL) Hope all is well.
Brendalou

Hello Ladies!
We are home from the hospital which i guess is a good thing. At least, it is easier being in my own home and not having to run back and forth. My mother is weak, but the dr's say there is nothing drastic going on, so I guess it is back to the same old routine. I hope things are going ok for all of you. Thanks again for all of your support.
brenda