Caregiving burn out, any advice?

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Caregiving burn out, any advice?

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I had to set up new account due to passwords not matching up. Previous screen name was Diannekk. Anyhow, no one will probably remember me because I haven't posted or replied in forever. No time. Not for myself or a support forum. Just at wits end. Caring for 68 yo mom with lung disease. She has been hospitalized 3 times this year for lung infections. Plus has fell a few times. Its one thing after another & I'm going to be honest. I feel done with the situation. Just done. I've fell into a deep depression, which I'm working through with help from zoloft but all I want is MY life back. I'd love to have a break also. No vacay in 4 yrs now due to her health. I just wonder if it ever gets easier. I won't be able to tolerate this deal much longer & I feel zero guilt for approaching the time to place her in a SNF. I tried to get hospital to send her to rehab last time but they were zero help. If and when she falls again is when she will go to rehab and I plan to do placement at that time. I have given my life up and I'm ready to reclaim it. Any thoughts tips or advice? A person knows how much they can personally withstand and I am there. I want to be a daughter again and still caregive from distance but my whole life on hold is ridiculous. My mother didn't do this. Why am I in a neverending situation?

Burnout Family Caregiver Sacrifice

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I'm so sorry you're going through this with your mom. Hopefully you can find a great skilled nursing facility for her SOON and get your life back on track. Don't ever listen to the comments that heap shame and guilt on you.....they are terrible and should be ignored . Too bad we aren't given the option to delete offensive comments as other sites provide. Anyhow, when my mom was in a SNF recently for rehab for 20 days, she really liked it. She made friends with 2 ladies she'd eat with every day, and she joined in all the daily activities. I may wind up placing her back there ultimately when her money starts to run out living in Memory Care.

Best of luck!

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Another approach could be, find a facility that takes seniors for respite but also has potential for permanent placement. Let them know when you are inquiring about respite, the booking is for 3 weeks respite, but the plan is for placement but that you aren't able to communicate this to your mom just yet. They will understand this approach. Tell your mom, you have made a booking for respite because you are taking a vaca, for 3 weeks. Your mom needs at least 3 weeks to settle properly into the faciliy, AND you go on a holiday for 2 weeks out of state and no contact except for some calls to her and calls to the facility staff to see how she is going, but strictly no visiting. You come back after the second week from your vaca and start negotiating with the facility for placement if you get a sense it will work. Do not approach your mother about placement ongoing before the 2 weeks is up because she will not have time to settle and will panic. Get a sense if she will not create too much of a fuss, and just do the paperwork and secure the placement. You can always change your mind and reverse it if it really isn't going to work. This is the soft way in for many permanent placements. This might seem dishonest or not entirely open, however, being entirely open is often more hurtful than telling a little white lie. Both of you can be saved by this approach! You know your mother, and if she is very unwell, she is unlikely to have full capacity to understand what a good decision would be. Allowing you to decompose under the weight of caring, says to me, that she doesn't really have capacity to make decisions, and you need to take the reigns. Good luck!

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Same situation here. My mom in ER last week, hospital for 3 days, a rehab accepted her. They have long term care which she could have gone to after rehab. Humana denied the request for rehab!?? So home, fell again this am. I, Like you, feel life is over for us. My husband & I take turns on Sundays going to church because someone needs to be here. Why oh why is there not help for caregivers who give their all???? I’m burning up the phone lines Monday morning, there has to be someone somewhere to listen.
Dont give up on you!!!! We have a voice & we must continue to use it!! Prayers!

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I feel for you Justme44. I have a Mother and a older brother living with us for the past 5 yrs. and I feel the same way you do. I do have alittle more freedom than you but it gets old in a hurry having others in your home that take all your time and attention. I want my freedom back too ! Unfortunately mine are both healthy and will probably live for along time still. I love them don't get me wrong. Just miss the way it used to be. I will pray for your situation to resolve itself and soon.
Blessings for being a good daughter !!!

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Thanks! Hope u get your home and freedom back sooner then later.

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Given your responses to Countrymouse, clearly you HAVE been feeling guilt about moving forward. It is great that you have been able to get mom into a day program, giving yourself some "free" time to do what you need and want to do, but as Countrymouse said, you should take some of that time to research various NHs, to find one with the best "fit" for mom. Also, try to put the blame on the hospital or doctor - you mentioned she blames you for putting her in the hospital - find a scapegoat!!! Hospital rules, doctor orders, Medicare rules, whoever you can think of! Say you had no part in the decision. She may not buy it and still blame you, but you'll just have to try to ignore it, let it roll off and change the focus/discussion onto something else, as best you can.

You say you "...feel zero guilt for approaching the time to place her in a SNF" - this is easy to think and say, but inside you are still having doubts. Had my mother been in this situation 30 years ago (she is almost 96 now, going on 3!) I would NOT have been able to care for her (raising two kids, working full-time, sometimes 2 jobs, going to school, managing a house and expenses, etc.) It is hard enough to provide the care, but to have to listen to the blaming and guilt trips on top of that, sheesh! Enough already, time to move forward!

"I want to be a daughter again and still caregive from distance" - this is a concept that some people who post here (none on this thread, yet...) don't understand. Care-giving does NOT have to be in home 24/7. When it was time for mom to not be alone, she wanted nothing to do with moving into any AL or with one of us, but she could not remain home (we tried hiring help, but after a few weeks, she refused to let them in.) There are multiple logistical and medical reasons I cannot take her in and if either brother took her, they would be overwhelmed in no time (clueless about dementia, they were and are!) I cannot even imagine how y'all do it - just managing everything else (and there is a lot!) is time-consuming, frustrating, aggravating and is sucking down my retirement day by day.... If one or more of those people post here with their guilt trips, IGNORE THEM!

"My mother didn't do this. Why am I in a neverending situation?"
Unfortunately I cannot say what you did - mom/dad and mom's sisters took turns caring for grandmother - granted it was a whole different scenario - she was EASY to care for, no real major medical issues, no dementia, just needed someone to watch over her and provide the necessities of life (meals, laundry, safe warm place to live.) The parents/aunts were more like in their 50's and she was gone by the time they all retired, so they had it EASY! Our mother was 90+ when it became an issue, so it has impacted us (mainly me in my disabled retirement years!!!)

So, don't let her or anyone else guilt trip you. You did what you could and it will be best for all to find her a nice place where she can live and you can be her daughter again and regain some semblance of life.

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You can mange if ones try's and wants to do it. I do manage and very well.
You put your life on hold for your loved one. What is wrong with that. Lots of good people take care of family especially their parents but some people want the easy way out. Bless the wonderful people that are not selfish and taking care of their parents. You all will be blessed some day. I was extremely busy, I quit my professional job to care for my lovely mother 18 years ago. The nurses in the hospital comment each time on the care my mother receives. They state it is rare to see such a devoted daughter take care of their mother in the manner I care for her. I think your advice is way out of line. Retirement ? That is the last thing on my mind. You will be an elder some day and need help. How would you feel if your family stuck you in a nursing home when you are old and needy. I am glad I am not that kind of person..Thank you to the caregivers for being so kind to our elderly population and your hard work. You will be blessed someday!!!!

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I want the answer to all of your questions. I had to look at the name to be sure I didn’t write it. My mother m if really out of touch today. For me no it doesn’t get easier just more and more frustrating. I also have had enough. Don’t know what to do or where to turn next.

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Reading your profile, your mom sounds like mine!! You are older (a bit) than I am, and mom is older than your mom, but otherwise, same issues!

Have you explored any options, such as getting help to come in or moving mom to MC? If she is low-income, she could qualify for Medicaid help, which can provide funds for LTC facilities or bringing help into your home, giving you some respite. Was her husband in the military? They also have aid/attendance programs for widows of veterans. It is also needs based. If she has enough money (read too much to qualify for Medicaid/VA benefits), have you considered moving her to a safe facility and/or using her money to bring in help? While it is great to promise never to put someone into a facility (and most are not at all like the ones our parents were used to back in the day), sometimes is it BETTER for everyone involved. There is no point to jeopardizing your health or sanity trying to honor a promise made long ago, before dementia! There are many options that might work - MC facility, some more home-like set ups, NH if she needs specialized nursing care.

There are Elder Care attorneys who can advise you with care, Medicaid, VA benefits, etc if you need help with these. USUALLY they will give you a first consult free (so have all your questions written up beforehand!) If you feel they can help and mom has the funds, HER money should be used to pay the atty fees.

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No it never gets easier. Unless the LO can handle AL somewhat independently. And the longer you do this that more likely your own health will go downhill first.

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You don't come across as harsh..just completely burnt out. My family was lucky. My sister and her son i cared for our aging parents needs together. I just live next door. So we got to keep our parents at home to the last. But neither of us could have done it alone. I have another relative in the a similar situation you are in. We have tried to help but we cannot be there 24/7. One of his roadblocks is he has not gotten his Mom (my Aunt) on MediCaid because social security is not enough to pay for an AL. He has been advised that upon her next hospitalization to tell the drs he CANNOT and will not take her home. She'd be placed in a facility. But that will last only 20 days (because insufficient $ to pay for long term care) unless he has her on MediCaid. Give yourself gift of being a Mother/Daughter again rather than patient/caregiver. You'll both benefit 💕

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Yes ma'am:) I am on it! So relieved to be at the point where I can do it and not let the guilt shaming kill me. I choose me! For once in my life I choose me. I love my mother but I have taken a lot of undue mental abuse over the years and its time to get on with my own life!! Im so excited:) thanks!

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I say draw up a POA with a living will so you are the one making decisions. My mom has faculties to sign but may not someday.
Im so done too! , I cry nearly everyday, had labs drawn for physical, cardiac panel abnormal, never has been but sure it’s the stress. We have to take care of ourselves!! Mom now goes to a senior daycare center 5 days a week & thats 40 hrs a week I don’t have to listen to her nastiness & selfishness.
May you make good choices for you. This site has been a life saver for me. Keep us posted on you!!!

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Thank you:) I hope you take care of "you" as well. It seems never-ending but one day, in the snap of a finger, things change!!! For the better:) love this site too!! Hang in there, kelly😊😇🐞🐦😇🐣

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This is an excellent site which helped me over the last two years. My husband just passed following 8 years with Alzheimer's. He was almost 82 years. I am 78 and was able to care for him at home until the last 7 days when he was in Hospice. I was preparing to bring him home when I was told I could no longer care for him safely at home as he was failing. I have not posted before and really don't have the energy to do so now but wanted to thank everyone for sharing their insights and experiences. God Bless all the dedicated family member caregivers as well as the caring, responsible professionals. I had an angel on my shoulder working overtime, guiding me through this difficult journey. Educating yourself, communicating with family and drs, and being proactive is necessary.
JLJMT

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Thank you so much! You husband sounds like a very special man. I am very sorry for your loss. I hope you can take good care of yourself now. I also believe in gardian angels. You can feel the presence. I hope you will continue on the site and best of luck.

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Any thoughts... My antennae are twitching.

Would I be right in guessing that the person who most undermines your confidence in your judgement about all this is... you?

You have been fighting this battle for *years*. Your mother's care needs have increased, having been quite demanding from the outset, and are now well into the realm of requiring skilled nursing. It seems clear to the outside reader that you are making a practical decision in your mother's best interests, and that you will continue to be her concerned, loving daughter (only better placed to do it).

So who, apart from you, isn't completely sure this is the right decision? I suspect it is just you.

Unless there are people around you chipping in unhelpful, unsolicited advice from the sidelines?

Have you had a look at a nearby NHs and drawn up a shortlist, or at least a wish list? I think and hope you'll feel much better once you do that, and have more certainty about next steps.

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Nail on the head! I do 2nd guess myself and all decisions related to her. She blames me when she has to go to hospital. She says "you put me in here" then i explained its the illness not me. I have a co dependent realationship. With here. I know she will hate me if i do that. Living with that would about be easier. No break from it and no one on sidelines because all our family magically vanished when the going got tough. Your right and i will look for some places soon. Its just a matter of time.

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Placement is not a decision you should make alone, especially if your mother is still able to make her own decisions. I've learned from this site the importance of setting up POA and advance directives. Nobody said you have to be the only caregiver for your mom so please get some help. The hospital social worker may have some suggestions.

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POA's are pointless in my situation. Although she can make some decisions, she can't live on her own. So if im not doing it then their is only one option. Her primary would have already signed the paperwork for me. They see what condition she is in and know its on me. Some people have to go poa route which is fine. Im just not one of them.

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Good morning.
I can tell you what I've been going through. My mommy is 87, on hospice because mom has a Zenker's in her throat and her stomach thru her diaphragm.
She wanted them fixed but the doctors didn't explain it to her very well. Mom drinks water and crown. Since her last hospital stay for aerated pneumonia they outvoted me and put mommy on Hospice. So since Jan mommy weighs 81 pounds. Now let's if this blows you away.
My mommy had 13 living children. Yes. Most live right around us. I've begged, i called them to come to a meeting.
So i do wish something more.
Or i just got off work kids are gone. I'm sorry i should of more firm with them. After 20 years ive escaped back to drugs. Ive mentality tormented myself. We also went on about 50 trips just mommy and i

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Very caring and helpful advice here. Glad you feel some confirmation in thoughts and feelings. You (and others here) are so young. Do whatever it is you need to do to provide a safe environment for your mom so that you can do some healing and get your life back.

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Thank you!!😊🎉🎊💝😇

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I have been taking care of my mom for 20 years; the last 5 were harrowing requiring around the clock supervision and at the very end stages of Alzheimer's. A simple cold turns into major infection and she's in the Emergency Room almost monthly now. I dread everyday. yes your whole life will be on hold. Your only other option is a nursing home and I think it's the best thing to do. Taking care of my mom for so many years means sacrificing myself for her. That is exactly what I have done.

But note the stress does not end with nursing homes. You have to visit and very often, preferably daily. They still will fall, and they can easily get infection from other patients. However, if you are unable to manage her bowels and bladder, which it will become (my mom forgot how to bear down. I have to use enemas otherwise she will get impacted), you are better off putting her in a nursing home. However, nursing homes do not always keep tabs when their last bowel movement was...or they can get c. diff and superbugs from the other patients. Happens a lot in institutionalized care.

Hospitals and nursing homes are very dangerous places. If your mom is still cognizant in any way, all you will hear is she will want to go home. You will have to live with a lot of guilt.

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Yours is an example of what makes me step back mentally and count my blessings. Dealing with an elder is not easy regardless of location and is still an immense responsibility/burden at times. It also highlights a massive need in our country to create a career path for those who have the calling to care, and to fund more at-home care which should still be less than an institutional setting. We just started having an aide for 4 hours a week and the one we had last week QUIT her job in a nursing home because watching the way people were being treated was too hard for her. She shared my opinion on never letting a loved one go into a nursing home...and yet there is that breaking point where one cannot go on, especially doing bowel/bladder issues where one must wonder about saying "never". bless you and everyone doing what you are...sending hugs

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You are caring for your Mum, who lives with you.

You are caring for your Mum, who lives at XXX Hall/Home/Manor.

Still caring, just differently. A new chapter.

Less physical hands-on caring but eventually, once the burnout subsides, a cheerful loving daughter to be a very welcome visitor. And steps towards your own life plans for yourself.

You've ready for this new path. All the best.

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Thank you!!😊🎉🎊😘

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After many falls and trips to the hospital, the last rehab was not successful. He has had dementia and Parkinson's for several years. It was reccommended he stay for long term care because I couldnt care for him at home anymore. With Medicaid it became possible.I'm living a nightmare. Alone during the day, fretting, unmotivated and sad. Going to visit him is excruciating. His moods are angry to violent, paranoid to abusive language. Guilt is not a good enough word for how I feel. I don't want to be with him and I don't want to be without him. He's not only losing his memory but his mind too. No amount of support, coaching, or therapy can make me feel ok. I won't be ok again.

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Maybe in time, things will improve. I sure hope so. Just one day at a time. Your doing all u can, right? Thats all that really matters. Being true and hands on support.

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I hope that you will consider placement now. I do not feel that you should give up your life to your mother, and I think that you have arrived at the end of what you are capable of doing. Tell your mother this with all kindness. Do know that her doctor, the hospital, the hospital social workers, everyone out there will attempt to guilt you into doing this. You are going to have to be very strong, because they will all be full of promises about how they "can help you" and about how "we will make this work" and etc. You have to make this not an option. Next admission it is as simple as telling MD and Social Worker on DAY ONE that you will not be taking your mother back home. That you have known that you cannot do this anymore for a long time. That you are at the end of your rope mentally and continuing to try to do this could end them all up with your suicide on their collective conscience. Explain to them that you have tried and that you will NOT now be taking your mother back home. As I said, they will do anything, say anything and try anything to get you to continue care. You must be strong enough to stand for yourself now. Explain to your Mom ahead of time how it will be, tell her that you together must write up what she wants now in terms of full care, palliative care, hospice, or whatever. That would be little help to your mother. You are not a Saint and you do not deserve to be Martyred. You have done all you can. That is all any of us can do. Many have been there before you. I myself have seen my brother into assisted living. He is 85 and I am 76; I know full well I cannot care for him; so does he. Is that sad? Yes, that is sad. Life is full of sad things and loss. We all do the best we can. Please do not beat yourself up.

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Thank you & I fully agree with everything you stated. It feels nice to know others can relate & really understand my situation. I wish it could be simpler and I could keep doing it but as you stated, their has to be a line in the sand somewhere. Especially before your own health is comprised. I hope your brother adjusted & is doing well. Thank you for your thoughts & encouragement. I will be strong and Make sure they listen & hear me.

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I"m afraid I don't have good advice - I am in a similar boat, and haven't found a good solution myself.

But wanted to say, you don't come across as harsh at all -- you come across as tired and worn out from this, and that's real and ok. Keep coming back here when you get time, and soak up the encouragement of everyone's stories and advice. You said it yourself, we know how much we can take. And honestly, it seems like once we say we are at the end of our rope . . . . . we were really at the end of our rope some time ago.

{{{hugs}}} to you, it's hard, and lonely, and you are not imagining that at all!!

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Thank you for kind words!! I will keep visiting because I find so many people in my boat and some stories and comments are really laugh out loud funny:) I hope things resolve for you also. All we really want is peace and loved ones to be healthy but I have watched my mom super decline over 2 years and it really hurts like hell.
Thank u:)😊😘😇

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Thank you so much!!:) Very true that I have landed into the destination. I read my post over & may come off a little harsh but extremely overwhelmed. I have no family help and it really has all became way to much on me. Finally, I realize how much Im doing and all Im giving up, to do it! Glad u are getting much deserved & needed time off!!:) I really need a "real" break too. Praying I get one soon. I love my mom but it feels like the stress of it all has consumed me and now horribly affecting important realationship in my life. Thanks again😘

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You’re very welcome and glad I could help. You certainly didn’t come across as too harsh. Caregiving is a tough and sometimes impossible job,,and it does affect other relationships. I’ve developed a negative attitude and a short fuse and I’m certainly not proud of it.

Theres no question of your love for your mother. But, you also need to love yourself as well. Start looking for placement for her now. And come back often with updates.

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Welcome back. I don’t think you are “approaching” the time to put her in a facility, I think you’ve arrived at your destination. I was “lucky” with my husband. Two weeks ago, his blood pressure took a nosedive and he was 9-1-1ed to the ER. We managed to keep him there for the 3 days admittance required by Medicare. He was then sent to rehab for therapy for his immobility. I expect he will be gone for 2 months. This actually was orchestrated by my husband’s doctor. I am getting some much deserved and appreciated respite from 24/7 caregiving. I do everything for him but feed him.

Start the process to place your mother now. Apply for Medicaid if necessary. Get POA if you don’t already have it. Start touring facilities. Speak with her doctors for a referral stating that she needs more care than you can provide. Turn your feelings of hopelessness into being proactive about changing your situation. Good luck. Come back and tell you how you’re doing.

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