I care for my mom now for 13 yrs with no support from my family. I haven't had a break, what do I do?

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PandaRosa, just because she's "only" in general decline doesn't matter, she still requires 24/7 (especially since all she wants to do is buy things from a catalog). You need a break and deserve a break just as much as anyone else. If your Mom is on Medicaid or Medicare, ask for a respite. Worst case they say no, but what if they say "YES"? A lot of people in nursing homes don't need to be there, they were place there because they either had no children or no one willing to take care of their day to day routine, so they're dumped into the system. Medicaid / Medicare can be worked with, especially if you get a case worker, and explain that you need a break every once in a while or you will have to put her into a home. General decline will eventually qualify her, and you can push it and get her in early if you're burned out. So tell the case worker you just need a little help in order to not have to do that. Your post sounds like you think you have it easier than the rest of us do, and that's NOT TRUE. Your life is no longer yours, so you are most definitely aboard the slow boat to burn out. God bless you and don't forget to remember what you are worth!
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Can't improve on most the answers here, I'm in the same position. With me, I have a brother who is not just tending to his own family but our father, who is also rather frail, though not nearly as much or as demanding as Mother. I've put off and given up on several dreams just to be there for her, and it's taken its toll. My Mother does NOT do daycare, or crafts, or groups, or anything besides wanting to buy things from the catalogs. Nothing majorly wrong, just general decline, so we don't seem to be eligible for much of anything.
I only hope you get some kind of break; this isn't good for anyone.
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I am so sorry that you have not been given a break. I have been doing this for only 2 years now but realized early on that respite would be required to keep my sanity. If I had allowed my family they would have never given me respite. I have to pretty much demand any free time and it was very uncomfortable at first because I am not a very confrontational person but thru this website I finally came to realize what I am worth and conveyed this to my family. It was pretty much in the same way that the previous poster stated. I was actually saving my family over $4000 a month by living with my mother so she did not have to go to assisted living. Now the power is in my hands. This month will be my first vacation. I am leaving for 6 days and cannot wait. I gave my sibs 2 months warning that these are the days that will need to be covered. That's it. Guess what - they managed to pull it together to give me respite. I deserve it and so do you. I have accepted the fact that I will be the daughter that takes care of Mom but for me to do a good job I need relief. If they are not willing to do that for me she can move in with them. You will be surprised at how fast family members come to help when they realize their day-to-day would be very different when an elderly person lives with you. There are lots of great suggestions on this website or if you just want to vent that is OK also. My thoughts and prayers are with you.
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I'm going on 10 plus years and counting also with no help. I use Alternatives for the Older Adult. I have a caseworker and when it's available I get"Respite" It's covered by my moms medicare. Takes a little time to get it all set up but it's worth it

That's the only time I get time off and I am looking forward to it in December. I need a vacation bad...
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I share your pain and admire you for hanging in so long. I cared for Mom for 25 years, taking her to doctors appointments, grocery shopping etc. The last 10 years of her life, she lived with me and required 24/7 care. My brother, in all these years, did nothing to help, no financial help, no physical help, literally nothing. But his hand was the first one out when it came time for the will. And he was pissed when he learned that Mom had cut him out of her will the same way he'd cut her out of his life. Payback wasn't exactly what he banked on.

Is there an Adult Daycare in your area? They can be expensive, but they are a Godsend when you need a break. Sometimes, insurance will help with the costs, so check around and see if there is one, and if so, what it offers, then contact her insurance company. Sometimes even Medicaid or Medicare will cover this for a short time for Caregiver Burnout, (it's cheaper to give you a few hours a week to rest than to cover the costs of putting her in a 24/7 care facility for the rest of her life) but you have to have a doctor diagnose you with Exhaustion or other severe illness to get it. And honey, after 13 years, if she's living with you 24/7, you are definitely exhausted. Even if she's not with you 24/7, if you're the only one looking after her for the day-to-day, you're still worn out.

If she has Medicaid / Medicare / VA Benefits / Private Long Term Insurance then check into having her placed in Assisted Living or a Nursing Home. If you're getting burned out, she's safer there as long as you drop by often and at different times of the day. It's sad but true, if the staff knows you could drop by at any time, and then you don't have a set routine time to visit, they're more likely to be sure she's well cared for. (Of course, this is draining as well if there's no other family members helping.) But, let's face it, at some point, exhaustion will be so overwhelming that you'll forget to give her medicine, or be helping her out of the tub and drop her, or other such accident (it's coming, it's only a matter of time/exhaustion).

Why is your family not helping? (My only family was an alcoholic, stripper chasing, drug addict brother.) So, I guess in the grand scheme of things, Mom was better off without him. But, if your family has the means, and just won't help, have you thought of hiring an Elder Care Attorney and trying to see if you can "coerce" them into at least helping financially so you can afford a sitter to come in for a couple hours a week so you can go to the movies, shopping, to lunch with a friend (if you have any left, it's sad but true, friends seem to drift away when you're in this situation), or just go to sleep for a couple hours without worrying something will happen? Laws vary in different states, but with Obamacare on the horizon, families are going to be expected to pick up the tab for their parent's care. There's a possibility that you live in a state that's brushing off their outdated Filial Responsibility Laws and you could actually sue your family for financial assistance. An Elder Care Lawyer would definitely help in this respect. There are 20 some states with these antiquated laws on the books, actually written to force children to pay their parent's institutional bills, such as Assisted Living or Nursing Home Care, but it's possible with so many children facing this dilemma, you could be the person who gets the laws updated so others don't go through this. I would have pursued this angle had I known about the law while Mom was still living.

If nothing else, just to give them notice, send them a bill, figure $5 an hour for 24 hours per day for 365 days per 13 years. The bill comes to $569,400.00. Or, figure in a low end state like Tennessee, it's about $4,000 per month to be in a nursing home. So, $4,000 times 12 months times 13 years is $624,000.00. Surprised at what you're worth??? Now, tell them they can either give you the backpay they owe you (and believe me, $5 per hour for a sitter is cheap) or you'll forgive MOST of what they owe you IF they pay for a sitter of YOUR CHOICE to come in and help out everyday - or at least twice a week. This will only piss them off of course, but it might just be the rude awakening they need to step up to the plate.

If you don't already have legal power of attorney, go get it, you'll need this in case you decide to put her in a nursing home or assisted living. You can get this if her mental state is altered, or if she agrees to it. Be sure to have her speak to the attorney without you in the room if she's cognizant, that way, the attorney can stand with you should family members try to say you were devious or underhanded or tricked her into signing the POA over to you. And believe me, if the family thinks there's money involved, they'll try anything and everything. So be prepared.

I'm so sorry you're going through this, and even sorrier that your family has done you the way they have. God will bless you in Heaven for this, and hopefully, good things are down the pipeline for you. Hang in there, you're not alone in this. And if nothing else, this is a great place to "vent" and get support while you're doing it!
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Welcome to AgingCare .. you'll find a lot of good support here, as well as many answers.

Help us help you with a little bit more information about your situation ..

Is she living with you?
Do you provide 24/7 daily care?
Is she covered by Medicare? Medicaid? VA benefits? Insurance?
Are you shouldering all the financial burden (as well as the physical and emotional)?
Have you checked with your local area on aging (elder care)?
Have you tried to find local resources to provide you with respite care?
Is she medically needy? Physically challenging to your ability to caregive?
Are you 'just' burned out? (BTW .. 3 years of caregiving non-stop is typical burn-out, so if you're not, you're amongst the very few).

Looking forward to hearing from you ..
Blessings,
LadeeC
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