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Yes, I am with you! My Mom lives with me, so I can't even go home and be alone there, cuz this is it! I have a new little Yorkie-poo dog which helps me immensely, and likes Mom as well. I have a brother who lives 90 min. away and comes twice a month, sometimes 3 times. Big deal. He stays for 3 hours- he has no idea of what I go through on a daily basis! One day when he was coming, I had planned a "getaway" to see a friend for a few hours in a town an hour away. I told him once he got there, otherwise there would have been an excuse. I haven't seen my grandkids in over a year and they are just 2+ hours away. I miss them! They could come here, but don't. Mom isn't too good at traveling very far. I have no life either, it seems, but you just have to try and find time alone for yourself or you'll go crazy! I am looking into Adult Day Care places not far away- even one day a week to take her, and give me a break. Find things for you to do too- get away a day...do something to feel a little breather from time-to-time. When I get really stressed, that's when I know I need it!
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As long as you do it, they will expect it. And if you go down, who will take over for them? It is imperative that you take care of yourself, and that is not selfish. Believe me I have learned this the hard way and am just now beginning to make sure that my health, physical and mental, are taken into consideration. I don't know what it is about the elderly but they seem to lose all perspective when it comes to what is doable and what is just plain selfish. I suppose they really do regress and become like demanding little children and just like children they need to be given boundaries and told "NO" and expected to take care of their own needs by hiring someone to help when it becomes to much for you. I operated in guilt for way to long and that is over. I do what I can on a daily basis and when I need help I ask for it. If my brother and sister won't pitch in then I threaten to hire someone and they make a quick turn around because God forbid we should spend some of the inheritance to care for Pop.
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I honestly know what you are going through. I burnt myself out to the max. My Dad passed and Mom declined, Diabetes, Congested Heart Failure, falling, AZ, she is now in assisted living, She needs 24/7. I did it for 8 years, I have to be able to get my errands, bills and health all done.I am exhausted. Even though she is in Assisted Living, I am POA, and maker her healthy food as where she is does not, I am going to move to Virginia and take Mom to an assisted living there. You must have your free time...Or you will burn out..Your health will be compromised.
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Hi Deetired,
I can completely understand how you feel. I too am going through the very same thing; however, I live with my parent's.
You are only one person! You CANNOT continue to do everything. Stop going over everyday. You must give yourself a break. I have to learn to establish boundaries with my mother...as she was killing me.
If you father has all of these different ailments...I think he may qualify for hospice. Hospice does not mean that he is dying (my father is on Hospice). What it does mean is he is in ill heal and needs the type of care that only Hospice can provide which means someone (a nurse) would come in at least 2 times a week and make sure that he is okay. They also offer assistance by way of medication (free) my pharmacy delivers. They will come in and bath you father, and so much more. You really need to check into this...so, YOU can step back. It is rare that we end up taking care of both parent's at the same time. So, we share this commonality. If you don't do something to help YOU...it will continue to take you down.
Our bodies can only take so much before WE start to crumbly!
Also, look into HomeHealth. At this point, and I mean no disrespect...it doesn't matter what your parent's want. You could get HomeHealth to come in or Hospice to come in and on those days you get to stay home and take care of yourself.
I'm sorry if any of this came across as harsh. That is certainly not my intention. I understand being physically, mentally, emotionally, and spiritually depleted. I had to find out all this info the hard way, and I sure wish someone would have been there to give me the advice I'm giving you now. I thought I was going to die. I'm a bit better now, and getting stronger. Best of luck to you and your parent's.
Fluter
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deetired. I am not going to tell you what to do, as there are plenty of people who will. But I understand how it is necessary just to express your feelings and frustrations. God only knows there are plenty of us here who have shared your level of frustration. They don't understand that we are human beings too, that we get sick, and that we too need rest. Last night, I was working at midnight while my mother and wife were sleeping. I too would like to get sleep. I just wanted to tell you I share your frustration, and I understand that sometimes there are no simple answers.
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You can't get sick enough to make your dad well. You can't beat yourself up either. We all get this guilt and this sense of "We must take care of them." Well that is true to some extent but this is the life he has and has chosen. You have played into his manipulation. Of course he wants you to help and not a stranger but he WILL get used to it. We all come to this earth to live our OWN lives. This is not a good situation for you. It is irresponsible of YOU to try to do it as well because when you do get sick, you will be of no use to him at all. We do not have to be super heroes.
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You know...I only had my mom for almost two years living with us. No real physical issues, just front lobe and Alzheimer's dementia. I came to my end 1 1/2 years into it, my families life was all about what we could not do, mostly staying at home and doing outings occassionally, but rarely because we could not get us all in the car at once. Absolutely no help to be found and we couldn't afford extra care...took 6 months to get her funded and find the right avenue to get things done.

The truth is...I had to play the I'm done card in order for things to finally get done, absolutely told them that if they didn't get my mom taken care of she was being dropped off at the hospital because my family just couldn't do it anymore.

I can only imagine what it would be like for you and so many others here. But I have to say that when you are at that point...start yelling and screaming...let the Adult protective services or seniors services know you can not do it any longer...you are burnt out and experiencing physical symptoms of the stress etc etc etc.

Be very clear there are no more options...it will get them motivated to help out.

(((Hugs))) and good luck...take care of yourself...you have not failed but have gone above and beyond.
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Carol Bradley Bursack you are so right as I also believe our parent(s) are in denial about their grown children's health and the children's ages. I honestly believe my parents still think I am 35 years old even though that ship had sailed 30+ years ago. I'm a senior citizen trying to care for even older senior citizens.

Deetired, I know this is hard to digest, but 1 out of every 3 Caregiver passes on leaving behind the love one they were caring. Those are NOT good odds. Then what would your parents do if you weren't around... they probably would hire someone to help them out.

Just say "no".... "sorry not today".... "maybe I can help you with that next week".... one time I said to my parents "Sorry, but I am too old to do that any more" back when my Dad wanted me to climb up into the attic and bring down boxes. You have to learn to de-spoil them. It's not an easy task, I know I am emotionally drained trying to say no. But I am having more good days than bad now :)
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My mom until recently called me "Lamb" (as in sacrificial). I was blissfully unaware of her plans for me until 16 years ago. I did not ask to be born or accept this servitude role, yet here I am servant to her highness. I have set limits and have no intention of allowing her to cut my life any shorter than she already has. I manage her life for her and jump through the hoops created by herself and others but work to make it accommodating to myself also. The process has gone from her living in a studio apartment to an ILF and now to an AFH. The paperwork alone is daunting but we do what must be done. I am a very good manager but not so tolerant of narcissists. This is why she must receive care from others as well as myself. You and I have worth and value. We are not slaves regardless of what our parents may have in mind. Please do not allow them to destroy you. This is a choice you must make every day.
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Dear Deetired,

I agree--you have to take care of yourself. I feel stressed out all the time trying to help my mom and working full time. I am trying to see what she can do on her own and what she cannot and then help appropriately, but it is tricky. I tend to overdo it and serve myself up on a plate to be anything she needs too much of the time. However, since I have been reading posts on this site , I have more determination to figure out how to detach and take some of my life back so I do not completely lose myself. I am so grateful for everyone's suggestions. Why do we have guilt for wanting to enjoy the rest of our family? Why do we have guilt for taking a short vacation or not doing everything just perfectly all the time? I think so much of this determination to help parents comes from people who really really care and tend to be very kind-hearted. Throw in some lifelong learned guilt and that is the combination for losing yourself. Let's keep helping one another and baby steps count!
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I'm repeating myself from a reply I made 7/16/2014 to the question:
My retired Dad refuses to hire help for my sick Mom, and insists I quit my job to be caregiver. How can I deal with this situation? Does this sound a bit like your situation?

My reply: When you raise children, you give them choices, which allows them to begin to assert some independence. The trick is to offer only the choices you are willing to accept. I would suggest you use the same approach with your father. "I will do this, or I will do that." (Through this process you are also establishing your boundary lines.)
Barbara M., author
What to Do about Mama?
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No one can understand what 24/7 caregiving is like unless they've done it. Often others in the family will even criticize you, despite the fact you've given up your life. Usually, the person(s) you are caring for doesn't realize all that you are doing and does not appreciate that right now -- at this moment -- you could be out with friends laughing and forming bonds with people your own age. You give so much that eventually you have no friends left because you are never free to go anywhere unless they go with you. Your social world consist of them and their doctors. Your conversations are all about their lives, their health, and what they need. Tired? There is no word for the kind of tired caregivers have that comes from being "on" ALL the time; even when you're sleeping, there is a part of you listening "just in case".
No one can understand except another caregiver.
Sound familiar?
But, we caregivers experience something other family members will never experience or understand; and we are richer for it. Our parents have loved their children for years and made their lives about their children for so long; what a gift to be able to give back what they gave us. There is a deep satisfaction that cannot be described.
Despite the rich rewards of knowing we're doing the right thing, and despite the special love we feel for our parent(s); we are so alone and so tired. We wonder if we will ever have a life again.
There is a wonderful community on Facebook started by a man, Rick Phelps, who was diagnosed with Early Dementia several years ago. He has written a book you can find on amazon called, "While I Still Can". The group is called, "Memory People". Just put it in the search bar on Facebook and you will find them. Amazing group of caregivers who are experiencing exactly what you are and fighting the same battle in one way or another.
My best advice is to get involved with "Memory People"; you learn a lot about Alzheimer and Dementia, and you are a member of a group that cares and loves in a way others cannot understand until they are in the same position some day (IF they choose to step into the role of caregiver).
God Bless You! You will make it through this!
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You need to start taking care of yourself, or you will be dead BEFORE your parents. Stop trying to do it all. Just STOP. Tell your Dad when he calls you have other duties, have him call an agency for help, and that you are no longer on call 24/7. YOU are the only one who can control YOUR life. Now do it.
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I hired help for my Dad two days a week. He fired her after 2 weeks. I was so frustrated. Now I call him for his grocery list when I am going shopping, or I take him with me when it is convenient for me. I take him to most doctor's appts cuz he won't admit he can't hear, I go in with him so I can hear for myself and translate back to him. Yesterday, I told my out of town siblings I have plans for Thanksgiving and they are responsible. Stand up for yourself! Hard to do it, but necessary!
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It is so easy for all of us to say to you: just say no, don't go back, do less. From my own experience, that is not easy to do cold turkey. It is very important that you do learn to say no more often and take time for yourself, your kids and your grandchildren. Your grandchildren will grow up in front of you and you will have missed out with much regret. Last summer I moved in with my mom and left my husband and my kids to help her because they put her on hospice and she wouldn't let me hire anyone. For a whole summer I was cooped up in a house with a miserable woman. She would get nervous if I just went to sit on the porch and get some fresh air or to just get away for a bit. I teach and school was starting and I knew I had to get someone to come in. She refused and refused. I did it anyway and went less and less. I still called to check on her and would stop in from time to time. My mom started doing so much better than she did with me. She started eating and even sitting up with the ladies that helped out. All she did with me was complain and say "I cant" and "no" for everything. In March, I finally got her in AL. She is still miserable and of course to her it is my fault. She tells others, "what kind of daughter puts you in a place like this"...grant it, it is brand new and very nice. She doesn't think back to when I gave up my family to help her. It will not matter if you hire someone for him or if you do it yourself. Your dad expects you to do it and that is not fair to you. Find the strength to pull back some and take time for yourself.
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Hugs to you. I hope you get help for yourself it is so hard being a caregiver and it sounds like you have done a more than wonderful job. Good advice from everyone on previous comments please ask someone for help ask anyone one to help you get this started and then let your parents know that you are on bed rest or whatever it takes to alleviate some of your guilt for not taking care of them so you can take care of yourself because that's just not right they need to understand. I would feel the exact same way like I was abandoning them but 10 years is a long time and you are missing out on the grandbabies lives so it's time to take care of you and change the situation and yes they'll be mad or cranky for a few days or a few weeks but they'll get used to it. Hang in there!
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It's easy to say but hard to do - take yourself out of the equation. The more you do the more they will expect.

It's very difficult for many aging parents to understand (or perhaps they are in denial?) that their children aren't well but you need to be clear that you aren't well enough to provide this kind of care. Contact your Area Agency on Aging or your local Human Services and tell them that your parents need help and you are too sick to provide it. If you heal, you may be able to help more, but try not to get pulled into doing it all. Please try to remember that you deserve to heal properly and have a life, too. Let us know how you are doing.
Carol
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Here if you are a caregiver, you can't abandon them unless you contact Adult Protective Serives. Thus, I did, handed them a list of issues,& stood firm, I was done. They came out and went about to set my Mom straight, did a care needs assessment. Her income is high, yet she qualified for Medicaid. You are not expected to do this alone, they're special programs for almost any situation. You just need tobknow who to talk to know the regulations. Join a caregiver coalition. If you don't use the internet, you R blind
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Unfortunately if you start being the sole caregiver many times you remain the sole caregiver. Parents become dependent on this one person and trust just them because you know what they need and become complacent. I care for my elderly mother who has COPD and is on oxygen 24/7. I have 4 other siblings who are out of the picture except one who comes to see my mom out of guilt once every 2 or 3 months. All siblings live within a 40 minute drive. Mom won't except outside help. I do everything for her. She never drove or made friends. I don't think they realize how much they put on us.
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I so understand but hind sight is 20/20...so take my advice get help if they get mad I PROMISE they will get over it. Do it for yourself...change the things you can accept the things you can't. I found from my mom who after several years of caregiving is now in a nursing home (has been for 18 months now) that my exhaustion went completely unnoticed by her the only things she noticed was anything I missed. Take care of yourself....if I could just go back and know what I know now.... so listen to all these posts from the ones that have been right where you are. I could write a book now on what you should "never do with your elderly parent. Good luck and I do know it is easier said than done but do your best.
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I understand. 29 years ago I started taking care of both parents, but was also working. Then it was just doctor visits and groceries. My dad passed 18 years ago. He was on on dialysis. Then my mom became totally helpless. She's a hypochondriac and narcissistic. She went to bed and will not allow ANY home health aids or strangers in the house. Council in aging here does nothing. She will not allow meals on wheels. My one sibling has Alzheimer's. I am totally alone. My daughter and grandsons live here and I have seen them twice in 8 months. No one will come because she has always been so mean. She calls 911 constantly and they are threatening to charge her with abuse if 911 system. That's my payback for not jumping thru her hoops. She has sundowners so I never get any sleep. I've said all that to say this. RUN. Put your foot down now or it will never end. I'm totally alone taking care of someone that expects it. Don't let it happen to you.
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Hi chicken granny and dee tired - it's really very important to understand that saying 'enough's enough' is no indication that one doesn't have compassion in their heart - quite the reverse - it shows that you care enough to want to be sufficiently fit both mentally and physically to be able to continue in your caring role. I am an only child approaching 65. I have my own health problems with high bp and a brain aneurism. I am on duty 24/7 as I have no siblings to call on for help. I have to turn my mum over in the middle of the night, every night without fail to prevent bed sores and I manage everything for my mum. My mum refused point blank to employ a professional caregiver four years ago when I began to flag after 10 years of this responsibility - my own GP involved a social worker who visited and laid it on the line to my mum that she would outlive me and end up in some residential facility if she failed to recognise that I needed to be relieved of the continual caring role. Coming from an outsider this information was grudgingly accepted and now we have two caseworkers three times a day. I still have all the admin and personal care for the remaining 22 hours a day but I can plan some time alone. Please, please don't use the word compassion in this way - I have as much if not more compassion in my heart as the next person but I am also sensible enough to know that compassion alone will not provide proper care. Only a mentally and physically person can do that.
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Give your parents a choice. Tell them its they either pay for a caregiver or go in a nursing home. If they want to stay in their home then map out a plan and start calling caregivers. Decide what you are prepared to do, then pay for the rest. If this continues and they can't/won't be logical, reasonable or rational about this. Then the next time your father is hospitalized, call the doctor and try to get the hospital stay extended for 3 days and tell them you want him transferred to a nursing facility for 3 months (approx) of short term rehab. I believe Medicare will pay for the first 20 days, then pay a portion of the next 100 days. This would get him used to the idea of a nursing facility when it comes to it but at end of the 3 months he has the option of going home or staying long term. Good luck and hugs
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I probably am not the best person to say anything..but sweetheart I FULLY understand how you feel. I am in the same boat, but I do not have such terrible health problems, everyone can say, "well you have to stop it" or "you allow it" ok we do but when you have compassion in your heart, its so hard to do, I still am working on getting thru as a caregiver for my mom and husband, all I can say is I feel your pain, and I will keep you in my prayers.
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From your comment it seems as though you have just reached a low and have to let your feelings out because it's clear that you're doing all this voluntarily. You have siblings whom you say can't or won't help - you simply tell your parents that those siblings have to do their share of the caring and that the next time dad make a phone call he calls one of them. When he gets their answer and it's negative your parents may come to realise that you're doing above and beyond the call of duty and then accept that they need a professional caregiver. It is within your power to stop doing all this and do remember that if you distance yourself from your own children and grandchildren by your continual attention to your parents your relationship with your children may not be strong enough in the future for them to help care for you when you're older. Take the decision to pull back - only you can do this.
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where do you live? Washington State? Call me, I will come and help you. You poor thing.

Stop . . . .
Do what you can only do for today . . . .
Find a caregiver . . . . (they should pay for it)
You are not Superwoman . . . .
I don't want you to have a nervous breakdown . . .

You need to love yourself . . . you are loved by all of us.

Remember that.

We are here for you, and if you lived nearby, I would assist you and then we would find a viable way to make it work.

Remember . . you cannot do it alone. at all.

you need to worry about you first, without you, you are good to know one.

Thank you for doing the best you could. . . . NO MORE . . .TIME FOR YOU SWEETIE!
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Just say "no", I know it is not easy to do.... tell them you will help with the very important items like taking them to the doctor and getting groceries. Otherwise you are exhausted and it is making you sick.

If your parents decided they don't want a paid Caregiver, then they have to take responsibility for that choice. If they don't want to move to independent or assistant living, again they have to take responsibility for that choice.

As for the groceries, do any of your groceries offer on-line shopping with home delivery or curbside pick-up delivery? I found it to be a life saver for me.
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You can take your life back....if YOU choose! All good suggestions above.
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You dont mention your mum? is she ok health wise? it took a TIA for my family to slightly wake up to how stressful this is and ive only one parent i just cannot imagine caring for two! Ive taken back my power and will stay away a few times a wk so my brother can at least stay the night here. I understand we do too much out of guilt but i had no idea just how stressed i was until the TIA so ive stepped back a bit and have learned to say no and take more time for me if you dont take regular breaks you will get ill as MM says there is alot of extra help there for them if they refuse like my mum then i would threaten with AL or a NH i do this with mum sometimes it works sometimes she laughs in my face?
Look after you and spend more time with your grandkids those years are special and you can never get them back both my grandparents from both sides died young so i never knew them and its something i really wish id had growing up!
Hugs as im in the same position and yes overwhelmed with the stress of caring for mum alone they have no idea just how much we do for them and mum has no comprehension of ME having a break she thinks well youre here anyway and still thinks shes independent??.
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You can't be taken advantage of like this without your complete cooperation. If you don't have the courage to take control of this situation, you'll be stuck with more of the same until the end of their days.

They outlawed slavery in this country a long time ago. You take control. You call the shots. "Here's what I'll do; and here's what YOU'LL do." Not a question. A statement.

Be prepared to help them get set up with outside help in one way or another...Meals on Wheels...get the Council on Aging involved to see what services they may qualify for...medical appointment transportation...housekeeping. Call their town to see what THEY may offer senior citizens. Yeah, it's going to cost some money. And they're going to have to find a way to come up with it. If they can't? Then the Council on Aging (or one of their arms) will help them come up with a plan.

Here's what mom gets/got FREE: wheelchair, hospital bed, oxygen, home health care for two months following hospitalization including shower/sponge bath twice a week, physical therapy, occupational therapy, twice weekly nurse visits. This following almost three months in a rehab facility getting her strength back.

Here's what she gets (or got) inexpensively: someone to come in once a week to shower/sponge back her -- $30/week. Meals on Wheels -- $5/day donation. Housekeeper 2 hours every other week -- $28/month. Snow shoveling by the village -- $10. Cab rides within her town -- $5 flat rate. Adult daycare -- $53/day. Medicar transportation there and back -- $60. A $1,000 stipend from the county to pay for respite care at $22/hour from their preferred list of providers.

It's time they spent some money. And it's time you took back your life. It's short, you know...
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