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maksik Asked November 2013

I'm caregiver to mom (87), currently in rehab. I have a f/t job and am going nuts trying to do this alone. Should I hire a care manager?

I'm in NY, traveling up Boston. My mom was living independently, pretty much house-bound the last 4 years. She fell 18 days ago, nothing broken, but now is, after 10 days in rehab, having trouble regaining even the very limited mobility that she had before. She turned out to have severe anemia and a UTI, and was treated for both; also got some cortizol and steroids in her very bad arthritic knees. Chronic diarrhea. I've spent $3k in the last 3 weeks on plane flights, taxis, cars, elder care manager, other. Am at my wit's end on how to continue to care for her while working full-time. Don't have anyone local (i.e. friends or family) who can really take on the role of coordinating her care. Should I just hire a $150/hr elder care manager (insane) and take out a home equity loan on her house?

StandingAlone Nov 2013
What Blannie said. Unless you want to lose your job, your freedom, your security, your friends, and everything else dear to you and start care giving full time, which I don't recommend to anybody, start looking for a facility for her like yesterday. And do whatever you have to to pay for it, including taking out that loan. Having her near you would be great, you could check in on her, make sure she's doing well, visit often, but keep living your life. Best solution ever.

kathyt1 Nov 2013
What does your Mom want to do? That is the most important question. Your a team now. You could hire aides if she cares to stay in her house, but that isn't a long term solution. Before you do anything two good books on the subject are "MY MOTHER YOUR MOTHER" by Dennis MuCullough, a geriatric doctor who espouses slow medicine, and " A Bittersweet Season" caring for our parents and ourselves by Jane Gross. Jane Gross a writer for the New York Times was in your exact situation.

You will want to think long term, not just this one incident. Medicare will pay for 10 weeks rehab. You can slow down, and make intelligent long term plans with your Mother. Research all your options, home care, living with you, or near you in assisted living, or nursing home. Breathe, take the time to calm down and get it right. Again read both those books before you make any drastic changes. They will save you much heartache and money.

Good Luck,. stay in touch, we are here for you.

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blannie Nov 2013
Maybe you can hire the $150/hour elder care manager as a stop-gap measure until you can put something more long-range (and cheaper) in place. Sounds like your mom needs to be in an assisted living facility very near you, so you can oversee her care (with help if needed) in a facility.

ShelleyWebb Nov 2013
Although a geriatric care manager (GCM) has an hourly price of $150.00 (or more in some areas), she or he will end up saving you time and money in the long run. A good GCM is able to work with the family and knows what resources are available to help you and your Mom. She can probably get everything coordinated in about 6 billable hours with maybe a once or twice a month check in. You want to make sure that your hire a REAL GCM because even some real estate agents are referring to themselves in those terms. If you decide to go this route, look up NAPGCM (national association of professional geriatric care managers) which has a site on-line to help you find one in your mother's area.
Just as an aside, I am both a GCM and former caregiver to my father who had dementia. My Mom will be moving in with me next May.
Best wishes and remember that you must take care of yourself, as well.

angiiiii Nov 2013
What kind of person rips of everyday people at 150$ an hour. AN ABSOLUTE OBSCENITY!
People in need, my advice is, get her over to your place, as best you can, and organise for yourself a full time residential care home.
Check it out like stink.....my mother in law paid 750$ a week, an ended up, I quote from their own records, 'being left on brim filled commodes with faeces and urine' on several occasions....
Hang your head in shame those who think your service is worth 150$ per hour.

vstefans Nov 2013
Your mom's story sounds like mine.

She had been increasingly housebound but had a good neighbor who was helping her a lot more than she wanted to let on. She messed up with her meds and had side effects and fell while cleaning a closet that didn't need to be cleaned. She grudgingly agreed to go to subacute rehab because she was too weak to even turn herself over in bed...

My mom wanted nothing more than to go back home and be on her own again there, but things were worse than they seemed, and it was not going to happen, but it took me a couple years to accept that. During those years, I spent over $16,000 trying to be a long distance caregiver to my mom.

Finally, I moved her. And it turned out to be the right thing because once when she was having a heart attack, despite being on all the right meds and getting the best care we could, she cried out "I don't wanna die alone!" And since she lived in Pgh and I lived in Little Rock, that would have happened if one of us hadn't moved.

Sometimes I look back and think I should have moved, and maybe I should have. That became water under the bridge fast. If you find yourself wondering if mom will ever realistically go home again, get a really good comprehensive geriatric eval and ask them to be realistic with you. I needed to do that before I sold the car and even considered selling the house; I hoped she would listen to them and accept the idea of moving to Arkansas where at the time she could have been in a very nice assisted living facility. My mom wasn't ready, and your mom may not be ready to listen or hear it, but you can, and then you can plan accordingly. It is possible there could be significant recovery; lots of people make it back from subacute rehab to home and get to stay there for at least a few years. It is also possible that as much as you will want to hope things could turn out better and you want to respect Mom's wishes in everything, you will have to face reality and make other plans, either telling Mom this is how it has to be or cajoling and temporizing her into it. And, you do have to get POAs for finances and health care if you don't have them. Once I had that, I used online banking to handle everything...that was the easy part.

If they tell you she can't be by herself and you have to work full time, you really will have to have an assisted living or homecare option either way. Even using sick days, personal days, flexible hours etc. and keeping up with my duties quite well under the circumstances, I was warned that I'd better fill out an FMLA form. If you use a home equity loan rather than Mom's regular funding, be aware that will come out of the proceeds of selling the home when that time comes...only you can judge whether selling now or later will make more sense.

I wish this was easier. Glad you are asking for help and ideas and getting it, I felt like I was out on a limb on one very steep learning curve.

Reverseroles Nov 2013
glornorth59, I did the same, I left my job after almost 3 years of juggling both. My Mom couldnt be alone a minute so I hired a 2 hour morning CNA to help Mom dress and get her to Daycare, then I picked her up after work. Eventually she couldnt walk anymore and the dementia was getting worse after a stroke, and her savings ran out. Those all contributed to my leaving my job. Now that I am home fulltime for still 3 more years, going to work was a heck of a lot easier that fulltime care, lol. I too sometimes feel insane so I hired morning and weekend help with moms ss. I think someone has to step up to the plate and be there fulltime for her, that "alone" feeling is much too scary for anyone, never mind an elderly person. Call a home care agency and set up your Mom, or look on care dot com and hire someone, or get a live in. My Mom is in late stages of dementia and its hard work but she would do it for me, so I am in this for the long haul, she is priceless. Good luck.

QuechuaCare67 Nov 2013
I agree...if it's possible...hire someone temporarily. Whether it's a care manager or caregiver...think of it as a short term soultion until you catch your breath. You can then have some conversation with her about what she wants and with yourself about what is possible...You may also want to set up a site (there are many possibilities) where you post updates about her and her care needs and start to form a "community"....so folks can plan ahead to go visit and help in the care...wishing you the best

kizna Nov 2013
Maybe u can hire caregivers. my mom has live in and it's much cheaper than hourly at least here in Or. I feel guilty at times but I too work full-time plus I'm not in good health. I have fibromyalgis plus arthritis in my back that is constant. I wrote a couple weeks ago cause I was in so much pain I ess crying. everyone was so nice. u still am hurting daily have decided to go to a new dr. my mom continues to go downhill but the caregivers she has are awesome. I would have to be really strong to lift my mom and I just can't. I feel guilty at times but I love her caregivers. so please don't feel guilty if u have to ask for help. what about hospice? my mom won't accept it she says it's too morbid she is in denial but I live her and spend time with her and try to make her laugh. sorry this is a book. lol..

maksik Nov 2013
Hi. Thank you so much, everybody, for your responses. I really appreciate your wise words, sentiments, hugs, etc.!!

A lot has happened since I first posted. I did hire an elder care manager and felt relieved immediately after talking to her. She knows the ins and outs of stuff, and that way she can do the research or help do it, and it's not just me and google. My Mom is getting discharged from rehab next Fri (maybe week after, but not likely -- doesn't look like I'm going to win the stay in rehab longer battle) and has an appt with a knee specialist on Nov. 22. We (our rather, my mother) decided, with elder care manager presenting the options, that she will stay in some type of long-term care place (we'll be paying, ca. $400-500/day) until the appt. She can't go home alone now; she could come to my home but I'd need to hire someone full-time, and it just seems easier to stay in a professional area, with minimal travel (5-hour trip to my place).

A lot will depend on Nov. 22 -- too much, I feel like! If the doctor agrees to do knee replacements, she's going to get them done. Has never wanted to in the past (well, tried once, but BP was too high). So, that would mean Nov. 22, then full work-up pre-surgery, then surgery. Would likely stay in the area (again, in the place we pay for) and then rehab post-surgery.

If he doesn't agree to do it, then she will come with me and I will get someone full-time.

I hope there is some kind of option that will enable her to walk a little (since the falls, she can't walk -- before, she was doing a good job of shuffling slowly w/a cane) and be more pain-free. That would be optimal.

I can't even imagine the hopeful option of her getting a knee replacement and being able to walk again. Maybe I'm a bit of a pessimist. My husband says it's possible.

I have read those 2 books (Gross and the Slow Medicine one) -- both were excellent, and helped prepare me for all this.

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