How do you deal with siblings/relatives who don't help out? Especially when the caregiver is burned out.

ashton99 All of these answers are from real experiences and I have noticed that we have all grown in a sense... the people helping you here now were asking questions like this and struggling with Dementia issues themselves, and have learned and lived it. All great advice!!!
After caring for my "wandering dangerously" Mom who I started calling Houdini because she was quite the escape artist and made pills disappear in thin air, not in her mouth, I'd find them hidden later even though I watched her like a hawk. so I thought. Anyway my only break was my 45 hour a week job (that she came with me for 20 of those hours, beauty shop) when she was with the aide, but I got her dressed and showered myself daily, the aid was like her entertainer wich was great by the way, but no break for me really. My sister wanted to get paid for taking her to lunch and to spend time with her kids, her grandchildren, at the movies or a ball game and Mom was always on best behavior with my sister. Her excuse was that "You wanted this SHAKING MY HEAD...." WTF!!! sorry but REALLY!!!! Yes... sure...I woke one day and said I hope Mom gets Dementia and I get to be her caregiver. Clean her hoarded house alone, work 45 hours a week, all while getting everything I needed for medicaid application in order, get attitude from family when I need help. The entire time my Sister complained about "spending quality time, not work, WITH HER MOTHER" yet she gave me a hard time when I got Mom into a NH and on medicaid (no help from sister of course!!!) I had to move into the house, my life's on hold still, .we all co-own the house, was Grandfather's ,I live here pay all bills in the house ,that BTW was unlivable, mold, clogged pipes. loaded with what equaled to about 50 peoples stuff, and much more. all while 24/7 Mom and 45 hour job and did it all alone. During this applying for medicaid too.
I made a perfect care plan.She had the nerve to say I didn't agree to this
~with an attitude, no less~
So I said to sis...OK you have choices
#1 you take her home with you 24/7 w/ no help from me, I'll visit but no work for me. just fun time with Mom when I'm with her, just like you did to me and I'll complain about you not paying me for play time with Mom. Then you'll have to pay an aid while your at work out of your pocket. Pay for her meds take her to doctors, do her laundry, bathing, dressing,cooking, cleaning etc. Oh and I'll hang up on you when you call and need help!!! Oh and prepare to see police daily!!!
#2 Move her back into her house get a live in aid 24/7 $335.00 a day. pay for her meds, food, daily needs, still take her to dr's, fix the house so she can't get out of doors, windows, which won't work anyway she'll find away to get out. Deal with picking her up when police call you because she got out and lost or in danger. If they find her at all and well and ok.
#3 You can pay the nursing home $10,000 out of your pocket minus mom's income, in stead of medicaid, I'll move so you pay taxes and bills on the house until it sells. Then you can go to NH 5 days a week make sure she's OK Good quality of life, right meds, etc. like I do!!
# 4 OR JUST SHUT UP AND SAY "THANK YOU YOUR A GOOD SISTER, YOU DID A GOOD JOB!!!" and co-sign a check as co-P.O.A. once a month "Mom's income" no cost to you and Mom will be safe, secure, clean, well feed, entertained, under Dr's care... and you don't have to sweat or stress out or spend a dime!!! OH and you don't even have to visit!!!
OK Sis will it be #1...#2...#3...or...#4 ?????
Guess which one she chose.... You got it #4 minus the TY great sister stuff... that, WAS ASKING TOO MUCH !!!

OMG That feels so good getting that all off of my chest to people who
understand it all!!!
The short version answer "LMAO~ as the weight has been lifted" give them options of care needs to people who want her to stay home and errands and try letting them take her for a few days in a row. I bet they start agreeing with your choices.

You owe no one any explanation. Your primary responsibility is to yourself. Your responsibility to your Mom is to see that she is well cared for, safe and as comfortable as possible. This does not have to be under your roof.

Criticism from others should go in one ear and out the other.

Good luck!

Many think that caregiving elders is like taking care of children. It is so different. I would find a kind way of telling advice givers, "Don't judge it until you lived it." Of maybe you could welcome their advice with a "Great idea! I think Mother would love you to do that with her."

Ashton, you are young and in a very important part of your life in building your career and financial security. I personally feel you owe it to yourself to take care of yourself. There is nothing wrong in placing your mother in assisted living. Many of the facilities are very good places that give their residents a chance to socialize. The only drawback of these facilities to many of us is the cost. If your mother can afford to live in one, it is a very good option. You and your relatives can visit her often, so it is not like you are abandoning her.

Many assisted living communities won't accept a person that cannot use the toilet by themselves. You can check to see if there are any near you that do. It may be helpful to get a social worker by to access your mother's needs and find out what is available, given her health and financial status. Ask your mother's doctor about having a needs assessment done. They can be very helpful.

Where are you siblings? Are they involved in this? My siblings vanished after I moved my parents to live close to me so I could care for them as they could no longer live alone or drive. It's been a 3 year nightmare. You should definitely research assisted living facilities in your area. Forget about the money, just do it and get on with your life. I think littletonway (above) hit the nail on the head.

Good luck and stay in touch. I am the youngest too!

-SS

Ashton, while you are checking out care centers for your mom with dementia, consider her possible future needs as well. Perhaps now she can get by with assisted living but as the dementia progresses she may need "memory care." Are there care centers nearby that have both? Right now she may have funds to be private pay. When her money runs out, will the care center accept Medicaid? (Some will, some won't.)

With dementia care we have to take one day at a time. But when it comes to selecting a care center it pays to look ahead to the future, too.

Good luck! (And do what you have to do. Ignore the critics.)

When my husband made it clear that he would accept the responsibility for his parents - only on his terms without any interference- his youngest brother had not been consulted as he lives across the country and he and his partner had just adopted a baby. Too far away and first time parents, so they are not considered by the others.

When the guardianship papers arrived at New Parent Brother's home, he emailed me that he wanted some "answers" before he was willing to sign off supporting his brother as guardian.

I responded that his brother fully supported HIM being guardian and if he didn't want his brother as guardian that he needed to come and take his parents to his state and apply for guardianship there.

He signed the papers and mailed them to the lawyer's office.

Thanks JessieBell. I feel the same way but I'm crucified for feeling this way. @SelfishSiblings, my sister lives around the corner from me and she gets my mom on some weekends. I have 2 older brothers, one who lives here in Michigan and one in Pennsylvania. My brothers do absolutely nothing. One has an alcohol addiction and the one out of state is just like "whatever". I have been looking into facilities in my area and I have appointments to check some out that are about 15-35 miles away as well.

My parents have always been difficult. My siblings and I saw it first hand with mom's dementia. No one would want to care for her 24/7. I stepped up due to religious reasons, and I'm still here 23 years later. Ashton, I would definitely look into moving mom somewhere. I was 23 when I stayed home to help father. He did his best to let me live my life so that I was able to pursue some of my dreams of traveling. When mom became bedridden, sibling/family of Next Door weren't much of a help. I had to quit traveling on weekends (my getaway time since I assumed family can help if it's weekend and no work.)

Do what you can, and like Jeanne said, plan ahead as your mom progresses in the disease. In the meantime, try to find a career/life for yourself because you will be needing it - Sanity away from home stresses.

Hi jeannegibbs! Yes there are centers nearby that have both but the cost is out of her price range so I'm also looking into other cities nearby. And thanks for wishing me good luck. I really need it!

Why would you want to politely tell them where to go? Selfishness and ignorance doesn't deserve consideration. Do what you feel is best for you and ignore the useless opinionated siblings. They continue to disrespect your choice, then very unpolitely tell them they can take over the responsibility of her care. I doubt they would be willing. Useless people always talk the talk, but never walk the walk.