This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Your nephew sounds like mine
When he would spend a couple of days with us to help with grandma I would give him some money to go to the store and buy sandwiches for lunch - when I got home from work I asked him what kind of sandwiches they had
He replied grandma wasn't hungry and didn't want one - odd she's always hungry
Later when I took the trash out I heard glass tinkling in the recycle bin - no sandwiches but he enjoyed a nice 6 pack of beer on auntie - not the cheap stuff but the imported stuff in glass bottles
That said I know he loves her and it was better than her being alone on a hot summer day so as long as you're not planning on moving your nephew in then take whatever precautions you need to safeguard your valuables
I am concerned about your health Book. Years of caregiving have taken a toll. It's sad you cannot have a meeting with all your brothers and sisters to get them to see what caregiving is doing to you. Take care everyone.
I'm damaged goods from childhood. I can't say, write or even type the 4-letter word. I felt Compelled to message my fave niece, "I love you, D.." I was crying as I typed this.
[[hugs]]
Book, lifting your niece up in prayer this evening. I don't know what will happen. It sounds pretty bad with the internal bleeding.
Niece just sent me her bloated face lamenting she looks awful. I messaged back, "Nah, you don't look gross. But your face is looking like mine - chubby. Soon, u will look Korean, too. Especially since you're so pale.. I need my dark glasses...😎"
You obviously know nothing about my back story either.
I was raised by two parents who decided I was damaged goods at birth because I was born prematurely in 1954. My mother was bipolar and had narcissistic personality disorder therefore thought she was the only one who deserved any attention. I was abused horrifically everyday of my life. Beaten unmercifully everyday for no reason and as I departed each day for school I was told to not be home 5 minutes from school because she was going to kill me upon my return. My father was not a bad man but pretended not to know about the abuse which was impossible. I suffer from numerous disabilities to this day as a result of her abuse and her neglect to seek medical help for my wounds. During my junior year in high school she couldn't find her hairbrush and insisted I had taken it which I had not. I searched for her brush and found it laying behind her toilet. It must have just fallen off the back of the toilet where she kept it. She was so mad and accused me of planting it there. She went to the back porch where my father hid a baseball bat to kill the squirrels that invaded his precious pecan tree which was more important to him than his own daughter. She beat me so badly she broke numerous bones in my right foot and broke and fractured my left ankle then proceeded to make me walk laps around the back yard to "work the soreness out." My broken bones never healed properly and I am unable at 62 to walk without a walker or transport myself in a wheelchair. I am blind in my left eye from the time she inserted an ice pick in it when I was 13. In spite of it all I was a straight A student all through school. The only positive reinforcement I ever got was from my teachers so I never went to school unprepared because I needed that praise from my teachers. I left home the day I turned 18. Put myself through college while working full time. When I graduated my parents did not as much as give me a pat on the top of my head for a job well done. Neither of my parents could tell you what my major was in college. I worked 60-80 hours a week for the next 30 years an was the VP of Marketing in an international company by the end of my career. My parents had no idea what I did for a living. It was way over their heads especially because their damaged goods daughter had achieved it.
When my mom was 80 I had been living in Philly for 23 years but I came back south to care for her through multiple illnesses. At the time of her death she had never said ONE single kind word to me in 61 years. My mother's sister was 90 and was in a nursing home suffering from Alzheimer's. my mom was banned from the NH for severely abusing my aunt. So it became my responsibility to care for her as well. The home my mother chose provided the bare minimum of care but was selected because it was "convenient" for my mom. Every other day for 6 years I went to take care of my sweet aunt. My duties included bathing her and removing the dried built up feces from her behind. Washed and set her hair, took her to Bingo and helped her navigate through it, I read to her, wrote letters to her children and friends, brought her laundry home, washed and ironed her clothing and did it all of again three days a week.
In my "off time" I took care of my boyfriend of 10 years who was disabled from a TBI 30 years before, had a massive stroke at 50 and diagnosed with early onset dementia at 54. I did EVERYTHING for this man. EVERYTHING!!!! Cooked, cleaned, shopped, chauffeured, advocated for him, suctioned out his lungs three times a day, gave him his meds, took him on outings, took him on trips to places I feared he would never see again. To beaches, mountains, new places he had never been. But as his dementia advanced he too became verbally, mentally, emotionally and sometimes physically abusive to me. Full circle for me. Abuse from the two people I had given up much of my life for.
Sorry if your childhood wasn't the greatest either. But before your friends on this site start demanding an apology from me on your behalf perhaps they should have some empathy for me as well. I simply made an observation when I saw you writing about going on vacation, out to dinner with friends, still being unencumbered enough to still be able to work and draw a paycheck, have the time to enjoy a good book and post an enormous number of comments on this site. In ten years I barely had a chance to brush my teeth or take a bath let alone have a lunch date with a friend or go on a vacation. A 72 hour voluntary stay at a nut house would have seemed like a reprieve and a good way to get a much needed Xanax and some shut eye. No apology is forthcoming.
Please contribute to the group effort to be supportive of each other. There are many people here ready to be supportive of you, too. You know that. Why would you lash out at someone here?
I hate that I feel myself pulled into some of the drama around AC lately. I've always been a compassionate person... my compassion level bordering on fanatical at times lol... that's my personality, though. It's why I'm a caregiver to my absentee, dead beat, abusive father who never had anything to do with me, has been the biggest source of pain in my life, and yet I have helped him to the best of my ability, sacrificing my own life for over 5 years now.
We all make choices. I caregive to my dad despite the toll on me. It's my choice. You made your choices, too, tex. The best thing would be to get understanding and support for where you're at from the wonderful people on AC. You make it difficult for others to be supportive by cutting into someone else for no reason, though.
Teacher niece msg back about it being okay to visa. I blinked. Huh? Reread my msg. I wrote "no visitors". {{{shaking my head}}} No Visitors. You can msg or What's App her....
I still have more siblings to inform of the news. I figured to come here, copy and paste my angst and send it as one email with all their names. I don't want to replay my fears.
You guys are great! I appreciate it... Dad's reminding me it's dinner time. Later.
When she sent me the photo of her bloating face, I Positively described it as chubby. Niece has a light brown skin. I'm the white skin of the family (from my great great Spanish grandmother). I get mistaken for Japanese, Chinese, even Korean. My niece- never. So I teased her about being Korean because when I looked at her picture, she really looks like one (not Japanese or Chinese) with the wider facial structure and very white face. Niece's normal face is slim and heart shaped.
I laughed hard because her reply (after waking up) was .. I'm Bloating!! ... I should tease her about thinking Positively...
Tex, I don't know how you stood to become a family caregiver after what you went through. I have to admit that I would have left early and never come home again. I probably would have told everyone around me that I was being beat, because I am not one to hold things like this inside. Sorry that you had to endure that as a child. No child should have had to.
I would not encourage you to apologize to Book, it would not mean anything and Book is a stronger woman than needing insincere words from someone she does not know and probably would not want to..
Sigh... it's 1:30am. I work tomorrow (technically it's Today) and need to get up at 6:30am to change dad's pamper, get him breakfast, throw in a microwaveable burrito for my breakfast and eating it while dressing for work at the same time. Won't tell you how many times I've burned my mouth. It's time to hit the sack.
P.s.. I've set limits with my dad even before he had a stroke. When he came at me to try to choke me, I wasn't a child anymore to just stand there and take that abuse. As an adult, I was going to defend myself. I positioned my body to face his attack in a self defense position. He stopped, stared at my positioned arms and he backed off... I told him and all my siblings that I will not put up with physical abuses like I did as a child. I told them that if dad punches me, on the 4th time, I was out of here. Dad didn't believe me. I looked him straight in the eyes and gave him details of my moving out plan. That was all bluff. Like Veronica said, my real detail plan was the perfect suicide- where, how, etc... I spent a year researching it online... I'm where I am from hard work (having a job was my sanity, dad broke me down, my clients praised me) and friends here in AC. FYI, have no friend here in island. One day, I would love to have one or two friends that are not my family.... it is what it is. Night all! ^_^
Bookluvr asked me if I had read her profile and some of you chimed in that she had had a tough childhood so give her a break. ALL I had said was that her caregiving experience was very different from mine (and the majority of of posters). The major complaint of the caregivers that post here is that they are at the end of their ropes BECAUSE they get zero help from any other family member, that they have no contact with outsiders because they are on duty 24/7, that they would give their right arm to have a 6 hour break to take care of their own personal business or go get a haircut, that the stress of caregiving is ruining their marriages, that they are going broke after working their behind off their entire lives because all their retirement money is being used to support the person they are responsible for. On and on and on which are valid issues related to caregiving.
They come to this site for support regarding CAREGIVING issues. Not to read seven posts about the best method for frying bacon or how to get a mouse out of their house, or vent about how high their water will was this month because a broken toilet was not fixed, or to read a book review on a book that isn't related to the topic of caregiving. If most of us had time to escape into a great novel we would feel we had had a mini-vacation and sometime to do what WE wanted which is to decompress for an hour. But our lives are no longer about US but all about THEM. Most totally depleted caregivers have no time to text their friends, make a phone call that isn't related to the care of another person, or even pull up Facebook to see what is going on with their friends who are on vacations in Italy, France the Caribbean or elsewhere. To catch up on who has a new grandchild, or which of their children that once referred to you as Aunt Susan, Karen or Jean just got married let alone have time to POST a comment or give an update of what's going on in your world.
When I come to this site I don't read the "Profiles" of the poster. I didn't have the time to do that let alone write a profile about MY life, childhood, career or anything else. If I formed a friendship of sorts with anyone I would send them a hug and we would communicate that way about the little nuances of our daily life but not on the main forum where specific questions are asked related to CAREGIVING and seeking support for those issues.
It is NOT correct that everyone on this site (but me) are supportive. My very first post was in the fourth year of my partner's battle (our battle) with dementia. This once sweet, loving and gentle man was unrecognizable to me anymore. I was feeling guilty that I could not just let his escalating abuse just roll off my back even though I knew it was relative to the disease. One lady said that I "obviously" had a history of choosing abusive men as partners. Nothing could have been further from the truth. After being raised in an abusive home I would have NEVER allowed another abuser near me. I have had wonderful men in my life and am still in touch with most of them today. Another said that it should not be a mystery that I didn't have a great relationship with his family because I should be ashamed of myself for moving him to Texas immediately following his year long coma after his TBI. That his family had every right to not want me in his life. His TBI was in 1977 thirty years before he came to Texas of his own free will with me. Another suggested that I was "only a girlfriend NOT a wife" therefore I was not important enough to him or he would have married me. Truth is we could NOT have gotten married, even if we had wanted to, because my income would have made him ineligible for Medicaid which was his only source of health insurance. One condescending girl did not address me in her response but referred to me in the third person saying. "Don't you people understand that she is soooo sad because her boyfriend isn't what she thought he was!!!" Does any of that sound like support to you?
I did not make this a one-up-manship issue y'all did when you said I obviously did not know about Bookluvr's childhood. I am sure she is a kind and loving person I never suggested she was NOT. However, in reading many posts by her a majority of them are unrelated to CAREGIVING which is the intention and purpose for which this forum was devised. It is not, in my opinion, the place for talking about two compliments she received at work, or her work in the garden, or her lack of cooking skills, nor a running toilet or an upcoming vacation all of which have zero to do with the struggles of CAREGIVING. If I was a first time visitor to this site and coming apart at the seams because of the unrelenting demands of caring for another and I selected the topic of "How are YOU Doing Today" (relative to YOU as a caregiver) and read a huge number of posts (almost all in a row) about things that are common to everyone that are not caregivers (like toilets, cooking and rodents) I would have come to a quick conclusion that this site is not relative to me as a caregiver. Which is how I felt in my post CAREGIVING scenario when I visited Agingcare.com just to see what I have been missing. I do not visit this site much anymore because it just makes me depressed at a time when I am trying to live in the moment and not live in the past or the future which is not yet here.
Lastly, to whomever remarked about how rude (I think it was you) I was to write "an apology is not forthcoming". Was in response to the person who suggested that I "owed" an apology to Bookluvr. I was only responding to the previous comments on this forum which SHE submitted about herself. Perhaps she should be more sensitive to the other caregivers and not write about an upcoming vacation which most posters would give their right arm for, or for an opportunity to find some solace in OUR gardens, or to have the time to escape into a novel of our choice and forget for an hour that tomorrow will bring nothing more than the same of the last 3650 sunrises of our recent pasts.
When any thread gets to several hundred (or several thousand) posts it is a guarantee it has segued off into a little chat room which covers various topics and allows caregivers to form little friendships. When I was new here I once wrote to the Admins complaining that people were veering off topic, now I understand that many of us crave the society of people who understand, and many of us have few other social outlets. If you have a specific concern, post your own questions. If you are only interested in certain topics then stay with the threads which discuss them. If you just want a little company then join in, and welcome.
If you need to VENT "hey all, my life has been hell, and I'm not ready yet to talk about bacon and mice, but this stuff has been happening and I just need to talk about it" then do that... but don't do it by denigrating others, just say what it is that YOU need to say. People here will understand. I can't promise that every single person will be supportive, but this is a support thread. Its purpose is to be supportive of the caregiver. You fit that criteria, so stick around and vent away about whatever it is YOU want to. I'm inviting you to do that.
I was a mess when I first started posting around here. Like book, I often thought the way out was to end my life. There was a time when I couldn't get out of bed due to constant panic (at that time undiagnosed still) and yet I had to drive my dad to surgeries an hour away and pick him up and make sure there was food in the house and I can't even think straight, literally could not keep a thought in my head.
I'm trying to say - there are people here who know about that level of toll that caregiving can sometimes take. I'm so sorry you had abusive parents. It SUCKS. I'm so sorry that your partner had early dementia due to TBI. (I think my dad suffers cognitive issues from TBI in late 50's... makes him difficult to caregive to because I don't understand how his brain works/doesn't work).
You've endured so much. Don't you want to turn things around and find the simple joy in life again? That's what we're doing when we talk about cooking bacon. It doesn't fix that I was out of work 5 years, still only have temp work, can't move out, stuck caregiving to my abusive father. Nothing changes but it keeps me upbeat and struggling to move forward. I need this time on here with people who understand. I felt like "regular people" didn't get it - why I was so stressed. (Ugh, if I heard one more time about "well, they took care of you, so... *shrug.* So I closed down my Facebook at different times as a direct result of what I'm going through with caregiving life. This is my "social media." That's the purpose it serves for many of the regulars. This is my main social outlet now.
You can always start your own thread, but it seems to me that you do need support...? Post whatever it is you would like to post about. If you want to max out characters talking about the hell you went through, if that would help you to get it out, then do that. I had to use these threads as my "therapy" for some time. Now my heart is much lighter and while there are days that still push my buttons because I'm giving so much... I try to find the simple fun in my life again. You're not ready for that, it would seem. (Not trying to "diagnose" you, just observing, and reading.) You still need to vent about caregiving. Do it. Start now, continue saying what you've been through, but don't say that anyone else is "lucky" because the caregiving club is one that very few want to join.
If you want, come over to the "DYS" thread, and you'll find people who caregive (or were caregivers) to dysfunctional family. Dysfunctionality adds a whole different kind of bitterness to caregiving life. Maybe posting over there would more appropriate. Your choice. "Get in where you fit in."
"Seek first to understand, then to be understood." You're in the right spot. Try to lighten your load where you can, however you need to do it. This is a safe place to do that. But... don't try to tell anyone else they have it easy, or you don't want to talk about bacon. That's not how it works. Show support, receive support. You don't have to participate in talks about anything except posting whatever is important to you.
It's like talk therapy, my therapist and I don't just talk about the issues that in my life, we mix it all up with other subjects... that way she gets to know me better and I get to know her better. I always leave feeling so much better after a session.
As for the bacon, I needed an easier method. Now I will try cooking it in the oven instead of on top of the oven which creates a horrible mess. Caregivers need less messes in their lives :)
And I happen to be cooking a big, fat 16oz NY strip steak for Sunday lunch/dinner, and I'm just happy about that lol. Was going to see if that thread was still going but doesn't seem to be.
Now go try that oven method of bacon FF.
My new grandbaby is having heart surgery tomorrow. The aeortic valve is narrowed. Fortunately she is in one of the best children's hospitals for cardiac care in the country. She was airlifted there yesterday as I was having a memorial lunch to honor my stepdad that passed away nearly four weeks ago.