Caregivers taking back control, anybody interested?

Trying to control something to my standards which I can't control any more (like the refrigerator contents) is frustrating. But today I took a couple of hours to winterize some planters -- cutting stems to root or dry before they get frosted, bringing some geraniums into the greenhouse. Got it done, my way, no interference, well before frost.

Feels good! To hell with the refrigerator.

Hi, Mystic,
Thanks again for starting this thread and for all your nice comments elsewhere. I was glad to see a thread inviting all of us to tell our own stories and talk among ourselves about what works for us. Now I wish I had time to! This week is very busy, I just have a few minutes now and then.

If anyone wants to know my story, it began at "End of my denial".

One thing that's working right now for me, is regaining control of my own time and my own stress -- by lowering my standards, giving up control of a lot of things like good housekeeping and saving gasoline and keeping things from being wasted....

If he wants to make two trips to town instead of one, okay, it wastes gasoline but the autumn leaves are beautiful along the road, and driving on our roads is a peaceful thing. Leaving his tools out in the rain ... throwing away some good food item ... instead of running to intervene, I'm resting and letting him deal with the consequences himself....

One of my favorite quotes that I go by is "Count your blessings, not your problems."

Hi mystical. Thank you for the virtual hug and for responding to my other post. In my opinion and what works for me is that if I'm feeling "overwhelmed", I stop whatever I'm doing and I don't do anything. When you're in a state of doing "nothing", you are able to relax more and think more clearly. If you have the time, sit down and take a little nap, drink tea or coffee, watch some tv, read a book or magazine, chat on the phone, etc. And then when you're in that state of relaxation, you will become more productive and have more energy to accomplish what needs to be done for today. The italians refer to this as "La Dolce Far Niente" which means "the happiness of doing nothing". I heard that in Italy, most businesses and shops close for a short time during each day probably an hour or 2, so that the workers can go home and relax and do whatever they want and be with their families and then they come back to work relaxed and more productive.
As caregivers, you don't have to do everything in 1 day and don't be afraid to ask for help either from family or from other health care resources. See what needs to be accomplished today and then continue tomorrow and the next day and so forth.
If your loved one has 2 doctor's appointments in one day, see if you can reschedule the other one so you only have 1 appointment. Caregiving is a journey and it is work. Work doesn't have to be completed in one day. It is an ongoing process. You can always reschedule your tasks. If certain members of the family doesn't want to help/delegate their responsibility on others/refuses to help out, then they are not qualified as part of the caregiver team. They are on a different journey. Just like everyone who applies for a job isn't qualified for the position because some have more experience than others. We can not expect or force family members to have compassion and support if they don't have it in them. Let them go and love them from a distance and only appreciate the people other family, friends, or health care workers who are helping you out and showing their support.

The other thing I would add is that I believe in a strong mind-body connection (even though that was never covered in my undergrad psych degree). I didn't get a 4.0, but I went to a pretty good school. :) So when your body starts breaking down, there's a pretty good chance that you're expressing unresolved stress from other areas of your life and your body is trying to get your attention. Autoimmune disorders, anxiety, depression, weight problems, insomnia, etc. can all be indicators of unresolved stress.

In my case, I have about 70 extra pounds and an autoimmune thing going on in my mouth (oral lichen planus). Those are ways my body is telling me that I'm not handling my stress well. I participated in a pretty good program found at ebt.org where we learned that those kinds of issues were symbolic of either not nurturing ourselves enough or not setting strong enough limits with ourselves or others (to respect us and our space). I believe those things to be true and you can see that in threads on here every day.

Caregiving is stressful in the best of circumstances. If you've been raised to play the role of family scapegoat, it's very hard to break out of that role. It can be done, but it's a hard slog. We need to positively support each other in our efforts to learn to take better care of ourselves and to set limits and boundaries with those around us. Attacking each other here isn't helping anyone. And a lot of us need help.

I agree. Helping others is a wonderful but stressful event. My parents are bringing me down.. I now try to limit my time at their house and insisted my Mom talk to her doctor to get a nurse in to help her. I feel so drained and stressed after dealing with them so I make sure I eat healthy, exercise just about every morning, meditate and do good things for me so i can be strong for them.

myst - you came on this forum as a brand new poster posing what, to me, appeared to be a philosophical point of view about caregiving and purporting it to be soliciting conversation about same.

Many here's seemed to be able to "read between the lines" even though I don't think it was your intention to reveal so much of yourself right up front.

When folks began responding, from their heart of hearts and own personal experience, you seemed to be demonstrating a pretty weighty "chip on your shoulder". Didn't your 4.0 in Psych teach you that, once identified, people will try to knock that off? You COULD HAVE come on to this forum and spent just a little time reading other people's questions and answers, thus learning a bit about some of us before coming on like an authoritative gangbuster.

You have been prolifically posting in a short period of time. I have read all of the information in this thread as well as all of the posts on your wall and your activity including hugs. It is very clear to me in your personal correspondence that you are seeking support, even asking people sympathetic to your view to post within the thread, thus showing some of the folks who disagree with you that there are people who DO agree with you.

How psychologically healthy do you think it is to invite yourself in amongst a group of people who could become your friends, and begin almost instantaneously trying to polarize them? You need to reexamine your philosophy.

My Care Receiver sometimes gets upset and rants at me. I've found that when he has that much energy/adrenalin, he can fix his own supper after I walk out. ;-)

Laughing with you. Hoping people will end this thread about who is smarter than whom.

@ mystical,
dementia care is a special animal. it teaches humility and compassion. it makes new rules for the sake of breaking said rules. im not trying to give you a hard way to go, just saying that its the most humbling and difficult thing ive ever done and EVERYTHING ive ever done was difficult. i will never be as intelligent as my mother so ive had no need to exert control over such a brilliant person. only keep her safe.

I won't go away mad. I'll just go away laughing. :-)

(And for the record, before I go, I am JEANNE, not Jessie, and I don't have problems with unearned guilt or lack of respect. I may or may not be daft, but I retained my sanity and mostly my equanimity through ten years of caregiving my husband, and am now helping with my mother, to give my sister respite, both loved ones with dementia.)

What brought that on? I think she was talking to Jeanne, which makes me even madder. First off, mystical, I was a college professor. I have no desire to go back to it. But it doesn't take advanced degrees for me to see you have a big bug up your backside.

If you are going to start telling people off, at least notice who you are telling off. Better yet, if you feel the need to rip out the jugulars of other caregivers because they don't see you as god's gift to caregivers, then you are in the wrong group.

sigh, i walked out of high school at the age of 15, walked home in the pouring rain and never looked back. best move i ever made.

dam i was all set to apologise for being a little harsh at first mystic but respect is not commanded, its painfully and patiently earned. higher education in this dukes of hazzard country can hug my sack. its a scam..

Mystical, Please try to calm down! You were not attacked. People disagreed with you and questioned what you say. When I read your post, I thought it was a discussion. If you said you were just venting, people might have responded a little differently.

I am interested in hearing about a specific incident or two when you were being treated badly, and how you defended yourself / reeducated your family. That's very useful information!

People who haven't learned how to stand up for themselves have trouble imagining how to do it. They know how to give in, and they know how to blow up. They don't want to blow up. I love to watch people do things I could never do. Sometimes I learn how to do it myself!

Jessiebelee, As far as "anger that I am projecting"Obviously you should have taken a course in psycology if you do not understand where I am coming from and your assumptions and other things about you refuse to see my bigger picture, go back to college. I have had enough on this site of people, "trying to read between the lines when it is not neccessary at all. I speak fluent, perfect English and have NO PROBLEM explaining myself. It's people like you who seem to "know it all" that do not understand plain English, so alas.. I will explain myself one last time!!I have not conquered the all knowing advice or measures that "I" use to get through the day. I may say that you have me all wrong when you say that the lady doth protest too much. I have an excellent command of the English language and that to me is laughable. It just shows me that you may be another hater for my intelligence. OMG who do you think you are? I"ll pit my knowledge up against yours or anybody else's at anytime, and I WILL WIN, as I am the great debater!! It is so simple that the fact that you and others do not get it is sad!! I make my own rules in my own home, I take no crap or any prisoners. If my family does not like my decisions on how to remain stable and happy for myself, my mom will suffer the consequences, I WILL NOT ever back down and I have most definitely earned my respect and a higher platou in my family, so take it or leave it. YOU MUST be daft to sit there and being a caregiver to not put yourself first so you can be at the top of your game for the one that needs you the most and let your family history negate the way you or I see fit as to taking care of a parent when nobody else stepped up to the plate, You bet your A@@ that I am mad at my family!!! How dare they humiliate me and put me down for so many years of my life and then claim that I am responsible enough to take care of OUR mother just because they can't be bothered. Just go away or as Motley Crue would say, "don't go away mad, Just go away" thank-you very much. However I do command respect now in my home and if my family does not like it, my mom will be the only one to suffer as I will not be destroyed or judged any further on my capabilitys. So they can take over which I know they never will. They have proved to me how impossible they think our mom is and they feel quite comfortable passing the responsibilitys onto me as if I deserve this life of hardship. All I can say to other caregivers is that I have learned how to keep my sanity w/out feeling guilty for one second and take pride in the fact of knowing that despite what i have done in my rebellious years of a screwed up teen that my family is demonstrating what I call "brain freeze" where I am concerned and I am intelligent enough to know that when people want to perceive themselves as perfect, they have to place the blame somewhere else as to protect their image of themselves that they alone have built up. No, I will never take the fall for anybody else and because I have come so far, and my "perfect" sisters have nobody else to put the blame on that they are living in a world of their own dilussions and are legends in their own minds. This is how "I" cope. I can only speak for myself. Thank-you for asking before you judged me and no I am not an angry, bitter person. just truly and spiritually disappointed in the human race as a whole. HUGS_2_u. Mystical22 (Joyce.) P.S. If I have nothing positive to say to caregivers like myself on this site, I SAY NOTHING!! So much for your integrity and thoughtfulness. NOT!!! Later, Hater!! Mystical 22 (Joyce.) IF you do not agree, then lets agree to disagree, Where is the safe haven for care givers to vent w/out being judged? SHAME ON YOU!!!!

JessieBelle, I'm not interested in Prince Charming, but I sure wouldn't mind the Fairy Godmother! But then, I don't think I'm the Cinderella you were referring to.

Mystical, I don't have a psychology degree. My 4.0 average is in an MA in English. Generally, that has been good training in comprehending what I read, including sometimes what s between the lines. Wow, what a lot of anger you are projecting. You say you don't think everyone has to do your things your way, but it seems to me the lady doth protest too much on that issue.

Let us say that some of us are genuinely interested in getting respect and in not feeling guilty. Can you give us some specific examples of how to treat people to treat us with respect? I think that you are right, that we teach people how to treat us (although I am not so sure that is possible when dementia is part of the picture). How about some descriptions of how you are achieving this with your abusive mother?

mystic, I wasn't referring to you when I was talking about Cinderella. I was talking about myself and a few other people on the site. Sorry if it looked like I was talking about you.

When my Care Receiver dies, I will have more time but much less money. I'll be facing strict economy and trying to find ways to make money. So it will be almost a complete change from the things I think about now. What helps me now is beginning to think of some possible income sources -- but mostly, looking at the things that I will still have: the trees, my friends, the home, internet friends, books....

Not what I am talking about.

mystical


For general info...I was not referring to my personal situation or childhood. I am talking about those who are living in so such fear and isolation they cannot over their past noe see a way to peace and happiness. I do not think you understand my point. I am not crying a river as you said. Yes my mother kid in memory care...as far as the "number" she dis on me...well that is what I am talking about. I will not post again here or on your private wall..

@ mystic
Thank you so much for opening this thread! It's good to have a wide open space where everyone's stories are welcome.

As for anger -- long ago in an abuse support group, the counselor said something that has stuck with me ever since:

ANGER IS THE ENERGY THAT HELPS YOU MAKE CHANGES.

That's the energy for cleaning out closets, deciding what goes in the trash, what gets donated, what gets washed. For tackling a big paperwork thing -- like applying for a Medicare drug plan, or getting a lawyer for POA or estate planning, or Googling all night to find out who makes this pill that doesn't work and who made the one that did work ... or getting up the nerve to post a question here.

Even if it's just emotional -- throwing all one's feelings and concerns on the floor to sort them out. Breaking up the patterns that aren't working. Break it all up and shuffle it around and maybe some new pattern will emerge -- someday.

Thank you!

CAPTAIN: I do not understand why you should feel quilty about your moms date with death. Everybody has a date with death and none of us know when that will be unless we have a terminal illness or a crystal ball. As far as an elderly wanting to have "dignity" and self control, I absolutely agree with you. All we can do is try to help them retain their control with dignity, and comfortably. I do not treat my mom badly, No matter what she tries to do to to me knowingly or unknowingly, I love her dearly. Does that mean that I have to tolerate disrespect or and emotional abuse? HELL NO!! I also agree that while this care giving lasts every situation changes and we have to reinvent,rethink and adjust to the ever changing cycles that come with this daunting task w/out letting ourselves be hurt. As far as you being leary of people w/an education, you don't have to be leary of me or anybody else on this site. I started this thread for people to start talking and maybe help each other without being judged. By the way, the way you write tells me that you are not uneducated, but for you to say that about yourself is sad.
Jessi Belle: I am pissed off that my family still treats me like crap. I am not however pissed off about taking care of my beloved mother.I consider it a very loving selfless challenge that I am totally up for. She is my life giver after all!! At the same token I will not be guilted or treated less than by my family. I am my own advocate and I do not need nor want a prince charming or a fairy godmother to rescue me, this was my choice, my destiny. I also do not have a Cinderella complex, I am Cinderella and dealing with it. There is also absolutely nothing wrong with serving people. Did I infer that in any way? I don't think so. I have been volunteering at one thing or another since I'm 10 years old and I am 53 now so thank-you! I am nobody's victim and I am setting up my life as I know it by my rules so I do not get hurt. I cannot figure out why you do not get my point of this forum, please do not judge or assume anything about me or anybody else on this site. It sure feels like you are judging me. That is NOT why I started this forum.
Sharymarie: I was absolutely raised in a household of "physical and emotional" abuse I was told my whole life that I was useless, worthless, stupid, and just like my dad (who was a dead beat dad who abandoned us all.) Oh yes Sharyann, it sure as heck does take a lifetime and I have had 1/2 of my lifetime to ponder mine and try to figure out where the hate came from. I do know this, "hurt people, hurt people." My mom was very hurt in her life. I had to let myself take a seat and try to embrace myself and all of my good quality's and put things into perspective for my own mental health. I'm positive I got it right. PLEASE DO NOT assume things about me, you do not even know me. I didn't say any of this is or was going to be easy. I have written a book. MY BOOK for myself on abuse. My mom has been mean and hurtful towards me my whole life and yet my sisters who didn't want her get the red carpet treatment. Please do not preach to the choir. My mom does not have dementia yet but I have trained myself to be ready for it as beat as I can. On top of everything else, I am handicapped and disabled by the state for a multitude of painful back injuries and maybe even worse, is that I have PSDS, Panic Stress Disorder Syndrome, and my mom makes me want to tranquilize myself every day, but I will not allow myself to be a victim so I do what works for me!! All I am trying to do is open a forum and let people know how I personally deal w/my situation and maybe those of us who are not as strong as me or may not know how to be, can take a page from my book. Also so people can share their stories of woe and seek comfort here. I did not open this forum for ANYBODY to feel judged and I feel that is exactly what you did to me. Thanks a lot, way to go!!
ITIRED: I feel for you:0(. Yes it is so exhausting, that is exactly what I am also trying to say to anybody who is interested getting through this with their sanity and mental health intact. My way isn't by any means everybody's way but it works for me. there are some of us out there that that feel weak and tired and just fed up and may want to give up,( I do sometimes as well) especially if they are experiencing a lack of respect or any such thing and helpless in their own homes, maybe we can all help them not to give up and give them support and encouragement to go forward and protect themselves from any kind of harm, intended or not intended. I was just telling my mom today that I do not feel appreciated at all and that she needs to put some gratitude in her attitude. Who knows if she is even deep enough to get it, but I can keep trying. As far as yours and my situations, This is my message and or advice if you will, (just a suggestion) Be strong, do not get pushed around in your own home (especially if you have children), they will pick up the same habits because we do TEACH PEOPLE HOW TO TREAT US!! I am nipping that in the bud and my whole family is on notice, because I also can only take so much, I too have my limits, and I am my moms only safe haven, she will go to assisted living if it means that I have to save myself. Yes it would be drastic, but drastic measures and drastic times and all that. I will NOT sacrifice my life any longer and be anybody's punching bag ever again. She has damaged my young life so terribly that I will not allow her to destroy the second half of it. That's why I am the boss and I am in charge. It would appear that our elderly all come from the same school and learned how to make us feel guilty and not appreciated and stressed out. "God love them for they know not what they do." That does not mean that we are powerless. This is what I am trying to say. We must be our own advocates and be strong or we will not be able to give the best of ourselves to anybody else. We need to build up some protective armor.
GLADI"MHERE: Kuddos to you, at least you seem to get me.I feel the same way about myself I wonder why I don't see many others that feel that no matter what we are all doing the best we can and no I will NEVER feel guilty or let others try to make me feel that way for doing the best job in the world by taking care of my mom, no matter how hard it is at times. There seems to be a lot of unjustified assuming going on about me. Thank you for not doing that. BYE THE WAY, everybody I did not mean to be the leader or the "punching bag" for those of you who do not agree with me or even those who do, I just opened up a forum for everybody to interact, you do not have to keep the focus on me! PLEASE talk to each other as well about your feelings. I do not need any negativity. Just trying to say how I deal with my life as it is and what works for me. If My choices can help someone great. We do not all have to agree. Thank you. Hugs to all. Joyce (mystical22.)

To avoid becoming somebody's case study all I will say is Mystic, it is great that you feel no guilt. Some of us do, and some don't. I am one of those that doesn't because I and only I know the good that I bring to my mothers life every day.

It is just so damn exhausting to constantly be putting rules in place only to have them repeatedly broken and plowed over by selfish people. Over and over and over. Just feel worn down..in my own home where I pay the bills. Ungrateful is the word of the day and don't forget most of us aren't spring chickens ourselves and have been doing this for YEARS already. I know all of this is taking years off of MY life and really it hasn't gotten to the really terrible part yet...

Mystical~I take it you were not raised in an abusive household where you were brainwashed from the beginning that it is your responsibility to to not only take care of your elders but to put them first over marriage, finances and self care? When that abuse continues into adulthood, it is not so easy to suddenly stand your ground against the parents who how told you "You are useless, irresponsible and selfish. As someone who did so well in psychology, you should understand that it takes a life time to over come the damage....a journey of self discovery, getting your self esteem, identity, and overcoming all the emotional gas lighting and FOG. I am sure you are familiar with these terms, and you must know that detaching, setting boundaries does not happen over night. Then there are the anger issues to content with. With dementia, you are dealing with a person who may have been sugar sweet before, but now they scream, attack you, keep you awake all night with sundowning, try to escape the house, have hallucinations, paranoia, and a myriad of other symptoms. If you can be the boss while all this is going on, then write a book to share or better yet, have workshops all over the country to help those of us dealing with the reality of dementia and abuse.

mystical, you come across as pissed off. It may be just the way I am reading your writing. It is hard to see the expressions on people's faces when they write. Many of the people on the group do have a Cinderella complex. But we all know that Cinderella was actually the "good guy" in the story. There is really nothing wrong with serving other people. The only thing is that if we are victims we wait for a fairy god mother to rescue us by turning pumpkins and mice into a coach. We really have to set up our own life and exit from caregiving. Now if anyone has a spare Prince Charming laying around, that wouldn't be a bad idea. :)

there is invariably guilt because you cannot change the care recievers date with death. then there is guilt when you try to contemplate your life post caregiving.
im a strong, take charge type also but an elder wants their own self determination and that requires humility and compassion. and mystical, you come off as pretty self confident considering how ever changing an elders needs become as they mortally decline. dementia in particular is a rocket sled ride. its hard to have solutions when the circumstances are constantly changing.
i aint got no education and am leary of those who have.

Captain and Jessie belle. Captain, I would love some more details about how you helped your mom and why you are still feeling "all over the place". What do you mean exactly. I have a lot of opinions and VERY STRONG CONVICTIONS about how and why I feel the way I do. I can start off by saying that all opinions and stories are welcome. I may not be an expert in this field but I did graduate college with a 400 GPA in psychology. I hear a lot of care givers feeling guilty and or taken advantage of. I know everybody's case is different but I live by my rule of thumb which is basic and to me, AND common sense. We are all doing the best we can. I for one will not let my family or my elderly mother who lives with me make me feel guilty for one second. Taking care of our parents who are just elderly or elderly with a dementia diagnoses is hard. Why is everybody complaining that they feel guilty? The elderly have a very strong grip on how to make us feel guilty or like we are not doing enough. It's called the infamous "guilt trip". Why do we let them make us or try to make us feel that way? Who knows, but it seems to be happening to all of us in one way or another. For starters, I'll just say that my sisters are not that involved with my mom. They wouldn't take her so I did. They talk to and treat me like crap. My own mom has NO brain problems, very coherent and she does the same thing. I get NO respect. You know what? You have to demand respect and take control of your personal situation and be your own advocate. I am in charge in my house and I am the boss. I put my life on an indefinite hold to step up to the plate and I'll be damned if I will let others make me feel guilty (mom) or anybody else, especially those who didn't want this tough job. My motto is and always will be... YOU TEACH PEOPLE HOW TO TREAT YOU!! I cannot stress that enough. Enough with the quilt and realize that we are NOT helpless in our own worlds of individual hell. That's for starters. Anyone who wants to chime in, please do so. All I can say is that this tactic and what I believe is common sense, works VERY WELL for me. Joyce (mystical22.) Please everyone join in the conversation. I am a very strong individual to begin with. I do realize that everybody might not be. I would love all of your feedback. Hugs all around.

We're listening, mystical22. Tell us more.