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I am new to this forum. My parents live in the Twin Cities and I am in Fargo. Dad has pulmonary fibrosis which took an extreme turn in December and he is now on 24-hour per day oxygen. Mom has been his caregiver and yesterday they told her they think she may have some fairly advanced cancer. I am waking up in a panic, not sleeping, can barely breathe. This is my parents and their world and my world is ending. I don't know how to get through this, let alone buck up and be the caregiver. I had two detached retinas and some TBI -- I got hit by a car while bike riding-- so I have some health issues of my own. Any helpful suggestions would be so welcome. My parents have also been very resistant to help. This really stresses my limited emotional and physical resources. I am capable of finding some help, but not of fighting their extreme obstinance. Meals on Wheels was like World War 3. I don't understand this, either. I would also appreciate insight on how to deal with helping them get help. Overwhelmed. Overwhelmed. Overwhelmed.

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I am an only child as well. I understand the overwhelming burden you feel as well as the sleepless nights. My mom passed away unexpectedly 6 years ago. My dad's mobility has deteriorated in the last few years. He is 88 and does not want much help. I insisted that all paperwork get in order, meaning POA, HPOA, Will, may name in his house, etc. before a serious condition set in. I agree with the advice of others and seeking someone to at least look in on your parents at least weekly. I know these discussions are very difficult to have. My dad feels he is not "old" and doesn't need any help. He doesn't feel he would ever have to move out of his home. He did not save for any healthcare related expenses. Continue to use this site. I am new to it as well but have found wonderful information and just a comfort in knowing I'm not alone. I will you all the best.
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HopeAndJoy, you are living on your own despite your injury, so stop and breathe a second - YOUR life is not really ending. (Just the world as you know it - I know that's how it feels...) You need to go see them, and several decisions can be made; one is you move there; one is to find community help for them including hospice if appropriate and travel as often as you can, doing everything else by phone, web, and e-mail +/- geriatric care manager or coordinator you can trust; one is to move one or both parents to Fargo, now or eventually (sound like more eventually if they are still at the stage of not even accepting outside help, unless when you go you see that things are no longer manageable. What THEY want matters - especially if they are deemed competent - but you have a right to insist on it being reasonable.

Start some notebooks and maybe a Dropbox.com account and get information together - contact numbers, financial info, POAs, etc. I kept a couple pages of my parents' stuff with me at all times, and the entire POA and other documents scanned to PDF in a Dropbox folder and I needed those often. I traveled from Little Rock to Pgh PA every 6-8 weeks or so, and moved my mom here shortly after Dad passed on. I alternated driving and flying and one of the first things I did was research the price of flights, and one of the next things I did was become very familiar with how to sprint through the Charlotte airport where we always connected, with the two gates at opposite ends. It is a very steep learning curve - do as much as you can on it each day and keep good notes. Right now, you are still just collecting information and assessing the basic medical, financial and legal situation as best you can.

If you find travel is not practical then you will need a really, really good geriatric care manager or case manager. DO realize that this can and should be paid for out of your parents' funds - you will not be reimbursed for much of anything that comes out of your own pocket in any way. If you go and find things are really bad and they refuse all help, and refuse to give you POA for finances and for healthcare decisions - you may additionally need an eldercare attorney; pick one whose website suggests they know Medicaid if that's going to be a factor (if they need care beyond what Medicare covers, and do not have funds of their own.) Worst case scenario - you can't travel, they can't care for themselves and won;t allow help, you call Twin Cities Adult Protective Services. It sounds like they are probably not that incapable plus hopelessly stubborn, so chances are that's not the route you will have to take. Most elders are much like yours - they hate what is happening to them, are in the process of losing their health and independence and want to resist with all their might, don't want to be a burden, and wish nothing had to change. I just wish we had known about that when my husband's parents abilities declined...when MIL called the cops on my BIL for even trying to get them help, he backed off and we had no clue what else we could have done.

Right now, just gather facts and plan a trip if you can do it, start making phone calls if you can't. Last bit of advice - Don't try to do anything you really can't do! And if you can do it for a week, but will be required to do it or months or years, seriously consider not even starting...hugs, sister. You will find a lot of help on here from those of us who are, or have been, in pretty much the same sad, sorry boat.
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glasshalffull was right on when she recommended that you become your parents Power of Attorney. This is very important. And she was also right when she advised that your parents sign release forms at their Dr.'s office giving you permission to speak to the Dr. on their behalf or to just find out what's going on.

Like my dad used to say when faced with a huge, unbearable task, "you have to eat the elephant one bite at a time." Everything's not going to get done in one day but just take it one step at a time.
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HopeandJoy - Strength to you ad your situation. You probably need a visit (like suggested above) so that you can make actual face to face connections with community resources. While there check about POA and Living Will info so that your parents wishes are followed should the inevitable happen...If dad/mom doesn't want to be on life support, then you need to know that that is in writing and is available to first responders/etc.

Take a deep breath. I would recommend you find a caregiver support group for yourself local to you and perhaps a counselor so that you have a chance to talk things out. Perhaps your parents are ready for hospice or in need of that support and services...Most hospice organizations have a great web of support that provide care and connections for clients over the long haul. Visiting nurse services are surely a possibility...they can even do medication fill up and checks...with your father on oxygen I would think this would be needed.

Make sure you are on all of their HIPPA releases so you can talk to dr. and other providers. Do you have all their insurance information etc?

You can do this! It is hard when you have your own medical conditions. Make lists and follow through. Some can be done long distance. Prayers!
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I'm also a long distance caregiver. I've found that you have to be there in person to deal with a crisis. I make the 10 hour trip several times a year. I'm retired and able to do this. I don't know if it's possible in your situation. Otherwise, you can hire elder care managers, in home help etc. the agency Pam mentioned can let you know what might be available and how to finance it.
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I would definitely hope they have a visiting nurse at least weekly. Their MD can order this, and you check their insurance to see if it is covered. I would also be in touch with the Metropolitan Area on Aging, 2365 McKnight Rd N # 3, St Paul, MN 55109 , (651) 641-8612 and ask for help.
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Hopeandjoy, I believe our parents are resistant to having any outside help has to do with pride... they are trying to cling on whatever freedom they have left.

We can only do so much, even though we know we can do more, it's that constant roadblock that our parents throw up. My therapist told me that my parents need to take responsibility of their own choices, and that I need to accept those choices even if I think I could make things better.

Ah, those sleepless nights, welcome to the club. The way I look at it now, are our own parents losing sleep? Of course, not.

Guess we will need to wait until there is an immediate medical emergency that will open up our parents eyes that maybe they need help. I was hoping my Dad's fall last year on the driveway where 911 had to be called would be a walk-up call.... it wasn't.... [sigh].
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