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.
I worked in a coffee section of a gourmet store in high school. So many flavored coffee beans: frangelico, hazelnut, chocolate, fruit flavors, amaretto... Personally I think the flavored beans/grounds don't have the same sweet cloying effect as creamers.
That was my only point and my personal little vent. I came back to this site after taking a much needed break from reading the stories of people who were literally at their breaking point, totally overwhelmed and exhausted with the demands of being a sole caregiver to a loved one. Caring for ONE person can be traumatic, leave you feeling inadequate, helpless and hopeless. We all start on our caregiving journey with the best of intentions and mostly because we love the person we are currently caring for, have empathy for them and think our efforts will make a difference in their lives. Most of us go in blindly and underestimate the commitment and the toll it will take on our personal lives if we do it for years and years in lieu of a shorter period of time. Taking care of one person is a real struggle but I found myself in the predicament of taking care of three simultaneously. I am in no way suggesting I had it worse off than those caring for just one. Some of us find ourselves caring for someone who was extremely abusive to us (usually a parent) which is a whole other issue entirely. If you are caring for a loved one with dementia or Alzheimer's you never know from one minute to the next what might be coming your way. It is the cruelest disease of all. You watch the decline of a person you once thought you knew well and suddenly you can't find THAT person anywhere. They often are unrecognizable to you anymore and become combative, accusatory, hateful and bitter and their caregiver becomes a target to them. You try to be empathetic and understanding but it is hard when you can no longer rationalize with this person about anything.
I think ALL caregivers are a special breed. Not everyone can do it because it takes great strength, both mental and physical, incredible organizational skills and tough skin.
When I revisited the site in a section called "how are YOU doing today" I seemed to find a great number of posts from a small group of people that didn't address issues relative to caregiving. It appeared to me that this group was utilizing this forum as a social forum instead of a support forum. I expressed my opinion and have been accused of being abusive, rude, out of line and unkind. Therefore, I will not be returning to any general discussion on this site. However, I invite you to contact me on my wall and I will be happy to listen to your concerns and see if I can be of assistance to you in any way as you face the many challenges that might become part of your journey. Upon closing at this time I will go to my wall and send you a hug. Watch for it. You will get a message that says I sent a hug to you. Best wishes. Stay strong. If you are a praying girl. Start NOW!!!
After reading your most recent writing, it is fantastic that you are volunteering your time to help others. I do volunteer work myself but it is at a local regional hospital one morning each weekend but I am just at the information desk... I do better logistically then hands-on care.
This forum right here is "no one ever asks how the caregiver is doing" so that covers a lot of ground, lot of issues, simple or complex. There are many other forums on AgingCare [click on ASK A QUESTION at the top of the page] that deal directly with one certain issue, such as Power of Attorney.... Probate.... walk-in bathtubs.... relatives stealing from elder.... which type of Depends to use.... etc.
This is where you and I differ in our viewpoints. I do not see agingcare as a social forum at all. I see it, and think it's intended purpose, was a forum for supporting the serious issues of caregivers. There are other ways to socialize with your friends that you met on this site. Start a chat line amongst those of you that want to discuss issues about non-CAREGIVING daily events in your lives. Go to FB which is a true socialization site and write your non-CAREGIVING exchanges about your daily life there. Set up a group text exchange, set up a time to include all your friends on this site in conference calls where you can chit-chat about whatever you want as a group.
I did have an issue that was bothersome to me and I posted it. It was not intended to denigrate ANYONE and that is not my style. But after my post I received a backlash of comments from Bookluvr friends that were very defensive. Did I not know about her bad childhood, requesting an apology from me to her, accusations of denigrating her etc. etc. then came your comment about wasn't I ready to enjoy the small things in life. Of course I am and am doing so which was inferred by me saying I am practicing living in the moment and not in the past or looking to far into the future which is not here yet. Every morning I start my day on my deck with my dog that I rescued a year ago. With coffee in hand we sit out there one to two hours listening to the birds sing while I putter in my new gardens. My old gardens were neglected in the past two years because I had no time or energy to dedicate to them so I rebuilt them all over this past spring. I meditate and spend much time praying or just having a full blown out loud long conversation with God giving thanks for putting me through a challenging struggle and then bringing me out the other side. Realizing that life was not meant to be easy and that God puts struggles in your life to teach you lessons that you need for growth. I cook regularly for an ailing couple next door. I volunteer through my neighborhood association to do things like sit with a sick person to give some reprieve time to the primary caregiver. I transport people to doctors appointments and to and from medical procedures where anesthesia is administered therefore they cannot drive themselves to the hospital. I am reconnecting with old friends and made a few new ones along the way. I'm having my dog trained as a comfort service dog which is a daily commitment. This year I remodeled much of my house something I could not do while Rich lived here because he damaged much of my house (not intentionally) with his wheelchair. My house is now a reflection of my own taste not that of the former owners. I have spent this year trying to regain my own health that was seriously compromised by 10 years of caring for 3 different people. I was gravely ill for much of this year and it took four specialists to figure out that my psychiatrist had pumped me full of meds that did not interact well with each other and I could not metabolize that combination of meds properly. I was in effect being poisoned to death by the doctor that was supposed to counsel me about how to get through the struggles related to past abuse and caregiving. So the answer is a resounding "YES" I am not only trying but succeeding in celebrating the large and small joys of this life. I am a strong woman who has the best of intentions. But my post here about how I felt about so many posts that were unrelated to caregiving was blown totally out of proportion and many of you challenged my intent and judged me harshly and personally.
My point has been entirely misconstrued. Therefore, I shall no longer participate on this forum because a social forum is not what I need when I am on this site. I know my previous comments have been helpful and appreciated by many. So I will just leave it with that parting remark. I wish all of you the best in you endeavors and hope you receive the peace and gratitude all caregivers deserve.
Burnout. That's what I need to avoid. "What's for Dinner" is considered a Burnout thread/question. What we do here when we talk about anything/everything is partly social, but it definitely serves another purpose for those of us still in difficult ongoing caregiving situations. For all of my problems now, today, they are nothing compared to how low I used to be, the different physical and mental problems I've had over several years due to the responsibility, stress, never ending problems, and no support from hurtful family.
Just trying not to slip back into depression or anxiety, and keep moving forward, one day at a time.
If I remember correctly, wasn't she taking care of her Mom at home, and then Boni had a heart attack?
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.
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.
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 :)
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.
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.
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.