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I can sooooo relate to you! My mom is 93 and I'm getting ready to turn 60. She's back to living with me and is getting harder and harder to deal with. I'm exhausted! There are some friends when I would say I deserve to have a life and need to get away would say things like - "Oh your poor MOM!"....WHAT???? She's had her life - what about poor me??? It would be exasperating to the point that I quit confiding. I finally went to a counselor who would listen to ME! It's a hard, lonely, depressing road. I'm single too so I don't have a husband to help out with errands, housework, yardwork. I also work F/T. I too have suffered physical ailments due to the stress of caretaking. I finally am starting to set boundaries and let her know I am one person who cannot do it all! I become so angry sometimes and I know that is affecting my health. My mom acts like she can just keep putting me through the paces but this year things will change. If we hire someone to come in and check on her. She's been healthy so THAT I am thankful for. But yes I have friends that say "At least your lucky you have your mom because when they're gone....they're gone!" Yea then the guilt and depression sink in and I feel like I'm a horrible human being! I've learned not to be too hard on myself and I have people that tell me what a great job I'm doing. but to me...it's a thankless job. I just want my life back and not to have to worry about this all the time. All I can do is tell you I relate!!!!! God Bless.
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Your post is so on-point for many of us who can relate to others not understanding our situation. That’s why this site is needed and valuable- to connect with others in the same boat, who can understand and encourage each other. Even so, I am surprised to see some posts here that add to the guilt-trip. Ignore those and focus instead on the uplifting messages. Others in our real world circle may never understand. Some people don’t want the real answer to “how are you?” (Tired, frustrated, etc). It would be tiring to deal with 21 calls in 24 hours, of course it would! Thank you for a well-worded description of the challenges of caregiving.
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My mom fell on Jan 15. Last 8 weeks have been pure hell. The first hospital put her on an anti-depressant with a side effect of stimulating her appetite since she stopped eating. Best thing that ever happened. She is no longer belligerent with meltdowns. I was advised to go the Psychology Today website and found a phenomenal therapist specializing in dementia/elder caregiving. He has been my rock even before she fell. He *acknowledges* my resentment and frustration and helps me cope with this living nightmare that has become my life.
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I absolutely understand everything your saying. I too am the sole caregiver to my own mom who will be transitioning to Hospice once she is released from the hospital. It irks me when I get those comments too. I really would like to say to them well then why don’t you take over for me for a few days then. I try to take a few hours a week (def can’t do that in one day) and just take a long hot shower, blast some good music and try to forget for a bit. These people may have never stepped in our shoes and have no idea. Sure I will miss my mom BUT it will also offer some type of relief. I would reach out to my other sibling and tell them to take off some time and take on some responsibility, they are her mom too. Also write your feelings down. As to those who keep commenting just walk away they may get the hint. You have to only answer to yourself and know that you are strong even when you feel defeated ❤️
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I feel your pain. Without getting into all the details, I am also the only caregiver for my 96 year old mother. My husband and grown children are very supportive. We made the mistake of adding a mother-in-law suite to our carriage barn and mom lives there. It is a CONSTANT strain on me...not physically (she is fairly independent), but emotionally. I hate to burden my friends (most are very supportive) as I feel that I sound like a broken record. I have just reached out to our local Department on Aging in hopes that they will facilitate a support group in my area! Perhaps you can do the same...short of therapy, I think a support group will be a positive experience.
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So here’s the deal. Some people say things because they haven’t experienced it so the just don’t get it. Some people say things because they want to make it about themselves (“I wish MY mother would...”). I was told to “grow up” by a friend who lost an alcoholic mother. Everyone is messed up, tired and hurting. Find people like “us” (care givers who love their loved ones, sacrificed almost everything to do what they can, etc) rather than people that try to help with “tips” that come off as criticism and judgement. You don’t need that kind of downer. You need people that can lift some burdens off your shoulders, not add to the physical and emotional piling on....even if it’s just an “I hear ya girl.” So: I see YOU. I hear YOU. I acknowledge YOU and your selfless love that makes people like us think you’re a hero (or shero). I think your superpower is “getting through the day” with all the insensitive and unempathetic people who profess ( from the sidelines, no less) that you have it made....How the hell do you do it with a full time job??? YOU, my friend are a true gift from heaven. Seek out those that can help you carry your emotional and physical loads not ask you to carry theirs... They do it because you make it look “easy.” I don’t know you, but I love you. Hang in there girl. Your mom is lucky to have you. You may seem like a pebble, but you are a rock! Xoxo
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Daughter62sad Mar 2020
Wonderful & emphatic response! Thank you!!
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Yes this has been discussed here before and many of us have experienced what you are going through with others who can’t begin to comprehend what you are going through. People can’t have empathy if they haven’t experienced it like we have. I will admit that before I went through this, I would have been the same way, having lost my mom when I was 36. I have since found friends who do understand and they are the ONLY ones with whom I confide now that my dad has dementia and I’m the primary caregiver. I call these friends my "go to's". For example two of my best friends that I taught with for years were over for dinner with their husbands the other night. We've been through a lot together. Not one of them asked how I or my dad was doing! I was a bit hurt by it, but I brushed it off as they are not my go to's. If you don’t have similar friends, then find a support group or go to a talk therapist. Someone who will listen and not make these types of comments so you feel supported.

have you thought about having your mom live in assisted living? She would get help with her meds and not be alone and this would help you. She would not be calling you so much and you could even turn off the phone and know she is where she can be helped and watched. That would be helpful to you both. Especially since you still work.
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First of all,If no one has said this to you before.Your a loving and kind daughter and your appreciated for all that you done and will continue to do.I'm assuming, but I'm probably right that the people who show no or little empathy have never been a full time for primary caregiver They are considered the peanut gallery.Don't vent to them because it's falling on deaf ears.

Find a caregiver support group besides this forum and confide in those who have shown understanding and support.

Goodluck to you .
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First of all, Hugs to you for all that you are doing. I cared for my mom on and off for 17 years, the last two she was bedridden in my home. Four years later my MIL is needing care. The reactions people I thought were friends have shown have been varied. I found many just ran, or those that had no parents anymore felt the need to really rub it in how they were now traveling, etc. The final test came when I experienced some vision issues and some disappeared. One "friend" can't be outdone with illness or aches and pains. She must always be the worst off in her mind. What I am getting is that it is not you....it is the others that seem to have the problem. Perhaps unresolved guilt or grief. I found Aging Care years ago and it and the many other caregivers on here got me though the roughest times. Feel free to come on here an vent or post concerns anytime.
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Girl, you and your partner are amazing!! I’m sad you don’t have any support. What a challenge for both of you. Our daughter’s wife worked at an Assisted Living place and had been a great help and resource for us since my husband’s mom moved in with us. I also have a sister-in-law willing to help and have her at her own house as well. It’s only been a few months for us, and I don’t know how long this will be, she is 88. But I definitely see the need for your own boundaries and Personal Care. It’s not easy. I know I need time for myself.
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I would have thought that a good friend worthy of being called such would know when, if ever, to tell you to count your blessings. Are you sure this person is a friend???

Is there just one main culprit? If that is a person whose support you were counting on, and would have valued, then it must hurt. It's a shame, but she's - she? - showing her true colours. Demote her. Find better friends. Like us! :)

May I also suggest that you don't answer your phone 21 times on the trot? If there is an issue such as that one, and you know you're not going to be able to solve it over the phone, tell your mother that she is not to worry, you will sort it out this evening/on Wednesday/whenever, but that you have classes now and have to turn off your phone. She may not retain what you've said to her; but her ringing and getting your voicemail will do her no lasting harm even so. If she's going to ruminate and obsess she can do that just as well without your assistance.
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You wrote: most make remarks such as "at least your mother is still alive," "you should feel grateful that she's still alive," "I wish my mother could still call me." 
They could be blinded by grief and can’t imagine why you are stressed when mom calls you 21 times a day. It could be that having never been in our boat, they just don’t get it. Like I said in a recent post, “If these “friends” were suddenly put in your position, they would jump back as though someone punched them in the face with the brass knuckles of reality and then apologize profusely for not understanding the hell you’ve been put through.
You also wrote: Being an LGBTQ caregiver has presented its own unique challenges in caregiving. Yes it does, even in 2020.
Caregivers here come from different backgrounds and different walks of life. Every caregivers situation is unique, but we can all relate to turmoil when dementia or physical disability robs our LO of independence and us of our freedom. Vent away. 🤗
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Gosh, I am so sure you not alone. Welcome to the Good Daughter's Club. In fact, someone wrote a book and was looking to start chapters related to her book Working Daughter or similar...slipping my mind right now...but something like that would connect you to more like-minded people who are coping with the same situation. I worry about burdening my few friends, but they've been along for the ride from the beginning and they know the players; and sometimes we can have a sense of humor about it. My folks are so older pretty much all of my friends have lost their parents...and I'm aware of my issues triggering the same response in them, that they would welcome the bother/issue "if only" they could have them back. And I realize I might feel the same when the time comes...and then wonder what if I don't? What if the exhaustion we feel so often...and SO much of it is a mental/emotional fatigue others can't imagine... results in our feeling a sense of relief? And then we feel guilt...And I am beginning to see what others have said...the cliche look out for/take care of yourself really hits home when eventually your body begins to take the toll of staying up late for quiet time or cleaning time or cooking time or bill paying time...and your resistance is down and while you've normally been in quite good health, suddenly you catch a cold or bug far easier. Of course the co-workers don't help and don't get it. They don't get that I am the ONLY person to caregive, in spite of knowing the facts and reality. They don't think it through and are understandably only focused on themselves. So the fact that my getting sick results in no one there to do for the elders, that I have no one to do any of the routine necessary tasks, doesn't register with them. And truly that's the case. We have no family; I don't want to impose on the few friends I have who have their own lives. I was so grateful for the grocery delivery service last time I was sick...the energy it saved...And I was really perturbed one day to get an email at work from our office manager. Another young capable employee...whose mother is close to my young senior age, well, that mother had an unexpected accident and was in the hospital and then to rehab. The office manager sent an email encouraging all of us to chip in and sign up to provide meals for the daughter (our coworker) and her father who was not eating as healthily as he should. Privately I was torn between compassion and agitation. This was a short lived crisis being dealt with by overwhelmed but capable adults with no health issues. And suddenly the whole small staff is to jump to the rescue. But some of us are dealing with zero support on a daily basis just to keep going. And we're not asking for help, we don't even want it...beyond some understanding and thoughtfulness...so, like, when you're sick with something contagious, stay home until you're well, not come back in 3 days because you think 3 days is enough or too much already, and risk exposing others whose health may be below par.
As for your immediate question, not even being able to say "I'm tired"...that's not a friend at heart. I'd avoid them. Take care of you and then find some others. And beware the support groups...they can be great...but there too you might find if not for adult children you'll be surrounded by spouses and feel like an ungrateful child/bad child dare you complain. At least in some.
And you have to lay down some rules with that phone. Your battery is dying isn't it? Oops, no charge. Faulty phone...anything.
Just remember, you're not alone. You're surrounded by people dealing with the same thing and just don't know it. Yet:-) Sending Hugs.
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I don't think these people are supportive at all because it sounds like they are trying to make you feel ashamed. Their parents may have been totally different. A parent without dementia is a totally different caregivng experience than someone who does have it. I learned to just tell people that I was hanging in there. Some people who had been caregivers understood and would tell me how tough it was. If someone had NOT been a caregiver - and this applied to the moderator of a certain caregiving support group I went to - then you are wasting your breath. They don't get it. Unless they have to do it someday they will never get it. I have a relative who tells me - while doing nothing to help - that I have an 'awful depressing life.' I tried not to visit her more than necessary.
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Rhetorica you are a really wonderful Daughter to your dear Mother. Remember when ever you wish to vent, voice your concerns, deal with frustrations, fear or anxieties then come to this brilliant Site where you can be guaranteed your fellow Care givers will understand exactly since all of the Carers Here have rolled up their sleeves and cared for their Love Ones. This Site is like a road map to Caregivers. People outside of the circle of Caring have no idea of what the task entails. I would say when People ask how your Mother is ? Great thank God, Mother is greatly improved, full stop.
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You do need to find a support group that you can be comfortable with and just knowing that the people in the group are going or have gone through what you are going through is reassuring.
Now I am going to get to you.
You are an hour away from your mom. Your mom will not be able to continue to live by herself if her cognitive abilities continue to decline. Have you thought about what your next step is going to be? She is in Assisted Living now will she transition to Memory Care? Can some of the calls she makes to you be handled by the staff in her AL community? Is there an easy way for her to contact them? If you can gently start having her reach out to the staff more often that will give you a bit of a break. Maybe even let your phone go to voicemail between 9:00 pm and 7:00 am. If there is an emergency the staff of the AL facility can call you. Your voicemail to your mom can be a calming one instructing her to call the staff.

In order to be a good caregiver we have to be good to ourselves and as selfish as that sounds you need to set boundaries.
You need to carve out time for you.
And many people don't understand. And until they are in the same situation they may not "get it". But if it is friends you still want to get together with if you carve out a Thursday for "your day" you can get together on Thursday, invite people over, have dinner and relax. Sure sounds easy right...it isn't because you are going to feel "guilty" not answering the phone between 9 and 7, your going to feel "guilty" on your Thursday "off". Well guilt is self generated no one can make you feel guilty but yourself. (did your mom feel guilty when she left you with a babysitter when you were little? I bet she did the first, second time but after that when she realize you were just fine for a few hours she got to relax. So do the same.
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Rhetorica Mar 2020
My mother lives in Assisted Living. After her second hospitalization with the flu and shingles, the social work assigned to her case told me that mom could not live by herself anymore. While she was hospitalized, I contacted an Assisted Living facility in her hometown. We were able to transfer her from the hospital to the Assisted Living Facility. At the time, I wasn't sure if this was going to be a temporary thing or a permanent thing. Needless to say, it became a permanent thing. Since she was renting a home, my sister and I moved her out of her home within four days. She had lived in the home for over twenty years. Thankfully, mom put me on her checking account about 13 years ago in the event something would happen. We did move her into my home this past summer, but it only lasted three weeks. We moved her back into the ALF in her hometown. The ALFs in my city are extremely expensive. The ALF has a memory care unit embedded into its practices. The ALF actually called me yesterday telling that my mother was getting hung up about the meter and lancet. My mother had spoken to several of supervisors, staff, and nurses about the meter and lancet. She threatened to leave the facility. The ALF staff didn't quite know what to, which re/initiated me to talk to her. My mom does great when things are stable with no hiccups or surprises. She doesn't do well with hiccups, surprises, or stressful things, which I understand. They do have emergency staff. Once they give her xanax and melatonin, she's out for the night. Thank you! I appreciate the advice. To be fair, I really don't have any friends. That's an entirely different story, one that can't really be explored in a post. Thank you for your advice! I appreciate it!
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I responded to a friend with that attitude.....simply put...”are you nuts? Who would wish life on someone under such horrific conditions? Can you not hear me when I say I am stressed to my limit, and Mom is enduring a end that is horrible?”

the effect of that was an apology and acknowledgment that the whole situation was beyond her imagining. But, at least I didn’t hear any more crap
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Grannywoman Mar 2020
Wonderful!
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See the current thread from GoodBird:  "You don't get it unless you get it."  Think this will help.
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Rhetorica, I agree with the comments recommending you find a caregiver support group. I think this is better than a therapist because therapists are paid to listen to you so you always suspect they are doodling on their phone while you chat away (this was my experience, anyway!)

People are flawed. Very, very flawed. It's best to not have expectations of them. When we have an unmet expectation, this is where anger comes from. I also agree with the comments about shopping around for more empathetic friends.

Even the best empathizer can't fully know what it's like to got through what you are and to feel what you feel. My cousin's 7 yr old daughter was murdered. I am very close to my cousin and this tragedy happened in the early 80's. I am positive that no matter how hard I try there is no way I can fully empathize with her. I know my cousin has had to ignore or forgive well-meaning things I've said to her over the years. I'm so grateful she did. Also it's like when people who have dogs but no kids think that is what it feels like to have a child (I've come across this one many times). Nope, not even close. There's no possible way for them to know. So, being emotionally flexible and forgiving is probably a fruitful strategy.

Finally, I myself have had to work on creating peace in my heart that for some things in life there are just no perfect -- or even good -- solutions. This has been the hardest thing for me since I'm a task-oriented problem-solving person naturally. "Letting things go" just about kills me. But hanging on to things I can't change will kill me in other ways. May you gain peace in your heart over all of your concerns and I pray you find a wonderful confidante or resource where you will be fully heard and understood!
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I think this falls in line with another discussion that is going on about how people don't get it if they have never dealt with someone with dementia. They really don't!! They are totally clueless on the situation. I feel 100% confident that if those same people had parents with one of the dementias, they would NOT want their parent back or to call them 21 times in a 24 hour period. We all would like our parents back in the condition they were in BEFORE dementia, but you couldn't pay me enough to selfishly want my mother to suffer the way she did when this all hit her.
Just realize there are those who get it and those who don't. This is a totally different disease than most and it comes with an entirely different set of challenges.
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I've given a lot of though to your questions (at least some of them) and as hard as it is to accept, I think one just has to accept the fact that caregiving is a uniquely stressful and challenging situation and unless a person has experienced it himself, there's no way he/she can begin to understand or empathize.  I liken it to "mourning."  I remember attending several funerals when younger and seeing the deep grief of the loved ones.  I would genuinely offer my sympathy and support and then go on as usual.  It wasn't until I lost my beloved sister that the impact of grief hit me.  It was devastating.  For years after that, when attending funerals, I would cry with compassion, having been there myself. 

People often mean well - but have no idea what they're talking about. 

I have lost "friends" since becoming a caregiver, because the stresses and demands have changed my life - and me.  Most stresses in life are secondary and, or limited and will get better over time.  Caregiving, especially for the demented or otherwise challenged loved one, becomes increasingly more difficult as the disease/illness progresses.  You have to find outlets to give yourself relief.  If not, the resentment builds.  And when so called "friends" make seemingly unsensitive remarks, you feel like unloading on them.  Don't.  It won't make a difference.  It'll make you look bad. 

Find a support group in your area.  If you can't, reach out for just one good friend who genuinely cares and share with her.   For me, the only place where I find total acceptance and understanding - is this support group.  They have kept me above water, many times. 

You have a LOAD on you Rhetorica.  Don't give up.  Reach out for help.  Check with family physicians, senior centers and any place you can think of for support.  You are wise to share with us.  We care.  We understand.  ((Hugs))
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Rhetorica Mar 2020
I know that the council of aging services in my area do have a support group. Although I've thought about attending the supporting group, I've been reluctant to attend the support group since I'm afraid that that group will not able to relate to me.

My mother had me when she was 40 years old. She was a a single parent. Although it's not entirely uncommon for people in their 30s to caregive to a LO or parent, it's not entirely common either. Or, at least, it's not entirely common in my current location, in the Southern United States. I'm also LGBTQ. I've been with my partner for 15 years. She has also taken on the task of being a primary caregiving to my mother. While there is definitely a growing acceptance of LGBTQ individuals across the nation, many communities in the South are quite traditional.

Being an LGBTQ caregiver has presented its own unique challenges in caregiving. Again, that's another story, one to be told later.

Unless I go to a support group, I'm never going to know. I need to just go and see what happens.
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I think you need to think carefully about what kind of friends you have.

Someone who can't empathize with YOUR feelings and instead tells you about THEIR feelings is pretty narcissistic.

For sure, you will find empathy here. Vent away! (((((Hugs)))))))
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Have you ever tried attending a caregiver support group? That would be a great place to express your feelings, here works too, to people that have walked in your shoes and GET IT because they have been there.

The Alzheimer's association lists caregiver support meetings for all over the country. My mom used to call six times in half an hour, even in the middle of the night. It is frustrating and exhausting! Stop answering her incessant calls. Once or twice a day is sufficient. Maybe she is developing dementia and starts obsessing about something and doesn't remember she just called you?

Boundaries will help you to cope. Sure that is hard, but with time you will adjust, mom maybe not so much. Has she been screened for memory loss?
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Rhetorica Mar 2020
They have screened her for memory loss. They have performed CT scans and conducted several cognitive tests. She passes them. Her therapist and doctor acknowledge that she does have anxiety and depression, something that she had already had before being hospitalized, but they won't diagnose her with dementia. When she was living with me for a time, I took her to my primary GP who then diagnosed with her mild dementia. In most cases, she remembers things. However, since being hospitalized and suffering from delirum, she has changed quite a lot. It's almost night and day. She doesn't remember being hospitalized or experiencing the delirium. She tells people that she was in a coma. I've given up on telling her that she wasn't in a coma. If you ask her to remember something within the past five or ten years, notable events or moments/notable habits or tendencies, she doesn't remember. However, she can remember things from a very long time ago. Her comprehension of things has also been affected. For example, I will tell her and show her how to perform a task or tell her a bit of information, she either forgets the information or spins the information in a way that wasn't intended. She does well when she has a routine.
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Wow, you are expressing frustrations to a bunch on nincompoops! WHO would want to take 21 phone calls in 24 hours with a distressed elder? Tell her you will happily forward the calls to her!

I would try to express your fatigue and frustrations to a better group of friends. You might also try finding a counselor to talk to. Watching your parent decline and suffer is an incredibly painful thing to do. We do what we can, but at the end of the day, we are helpless to stop the decline. That's a terrible feeling.

People who say "I wish I had my mom to talk to" are talking about their mom in her prime. Their healthy mom with her full faculties. No one would want to go back and talk to the mom that was scared, saying "take me home" or "I'm in pain."

Those are thoughtless responses to your statements of fatigue and frustration. They are completely dismissing your feelings. I would point that out to the next person who does it.
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