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deetired Asked August 2014

I'm so overwhelmed and stressed, when is it enough? Been taking care parents 10 yrs alone. What happened to my life?

My Dad just got out of hosp again due to breathing he has chf, dibeatics, prostrate cancer, hbp, osto arthritis. Been at hosp 5x in 2 yrs. I've come to my ropes end, none of my family is or can't help out of 5. I do the appt, meds, house stuff, driver, sometimes alots groceries. I can't breath. Just me & my cat Holly which saves me. I have 6 grandchildren but can't c them much. I feel I gave up my kids & grandchildren to take care my parents. On top of that I caregiver 3 days a Wk live in I must have lost my mind. I had 2 huge cyst's taken out 9 wks today huge surgery & at the same time diagnosis with dibeatics, I can't sleep, feel totally overwhelmed & drained. Parents won't agree to getting a caregiver cuz I'm it. Can't get them to understand I Am Not Superwomen I can't do it all. Dad will call me almost everyday & ask if I'm coming over. I wanna run away can anyone out there understand I feel so alone here.

EXPERT Carol Bradley Bursack, CDSGF Aug 2014
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

BarbBrooklyn Aug 2014
If you keep going over, he's going to continue not to understand. So many caregivers die before the folks they're caring for do. I don't think there is a way to change your dad's mind, but you CAN change your behavior. "No dad, I can't come today. The doctor has me on bed rest for 4 weeks or my female parts are going to fall on the floor". A month should be enough time for themto get used to a new way of doing things. Take care of yourself and your health. Ask yourself what would happen if you died?

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DaughteronDuty Aug 2014
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.

Eyerishlass Aug 2014
You have to have a break. It's no longer a luxury but a necessity. You've done right by your family and now it's their turn to help you.

What you do when your dad calls next is tell him that you can't come over, that you're taking some time for yourself and that you need a break. Give him the name of some home healthcare agencies in you area and let him know that you can no longer do this alone, you need your own life. Tell him what you told us.

But we can't expect people to figure out what we need. We can't expect someone to see that we need help. We're the only one who can do this for ourselves, no one else can or will do it. Take responsibility and get yourself some down time and time with your own family.

This is a solvable problem.

MaggieMarshall Aug 2014
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...

Silver Aug 2014
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.

freqflyer Aug 2014
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.

2tsnana Aug 2014
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.

itsnow2 Aug 2014
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!

ShannonMahoney Aug 2014
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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