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Lizreece67 Asked May 2023

I have been caring for my mom almost 5 yrs now with no help from anyone. I need a break! Please help.

I’ve been my mom’s caregiver almost 5yrs, I have no help for anyone and I’m so burnt out and worried about my own health what can I do? I’ve put adds on FB for help with no luck.plz help

squirrel13 May 2023
Hi, The first thing you need is to join a support group of other caregivers who are going through the same. I too take care of my mother, alone, and it's been 5yrs. in April. So through her doctor, I was able to get a social worker, who helps me, guides, me with different problems and links/phone #/ websites to different services. It is not that easy to receive homecare through insurance, unless she needs assistance (dressing, bathing, brushing her teeth, etc.) as people like to think. The only home care I've been able to get her is Physical Therapy, which I believe is good for every elderly, but we have to visit her doctor every 90 days to reinstate it; and the whole process is draining, but I know it's good for her. Because of the PT, we receive a nurse weekly, but I personally, have no relief. The nurse stays 10 minutes, asking her the same questions and taking her blood pressure, heart, oxygen; that's it. To hire, is expensive, especially if your parent only gets social security, like mine. No assets. Medicaid in each state is different and you may not need to even apply for that yet if your Mom can get around. Find support through friends any way you can; take a break and go do things you like even if its just an hour or two. The things you do for yourself to help take away stress is crucial and you must develop a routine for it. Remember, you come first. When we are frustrated and tired, it's hard to think straight. Forget the whole list of things someone provided. It's overwhelming. Take it step by step and your first goal should be getting a social worker through the doctor and finding in your city, state...(she/he can guide you) a caregiver support group (some are in-person and virtual) which is convenient. I have done both and these are the first things I did. All this will lead to other things you may need help in, but be sure to ask questions. Make a list of them for your social worker. Take care and good luck. It is a challenging road. Coming to this site is a good step too, but you need more personal support.

harrisb May 2023
I have just been through this. It all starts with assets. You can pay out of pocket $30 hr. for an agency.

Or you can apply for Medicaid but before you do this you have to make sure you are not over the overage limit to qualify for Medicaid managed long-term care (mltc).

Check the Medicaid guidelines in your state.

If you have overage you need to create a pool trust.

You can hire an elder lawyer to help with this.

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Ohwow323 May 2023
Call the doctor they can recommend someone and get you a social worker.
Call Visiting Angels they are bonded and insured. visitingangels.com for phone and address near you.

Llamalover47 May 2023
Lizreece67: Start with the social worker at your town's COA (Council on Aging). State the nature of your dilemma as you cannot go on being your mom's caregiver (or anyone's for that matter) if your own health is at risk.

TouchMatters May 2023
It would help us address your needs and concerns if you gave / give us more information about your mom:

1) what are her physical and mental diagnoses
2) what are her needs now?

I do not understand why you would go on Facebook to fine a care provider, however, perhaps you have a wide range of 'friends.'

* Does your mother have a social worker? Can she get one?

Caregiver needs:

- Call a caregiver agency. There are many (costly, but if you need a day off, it is worth the expense if you/r mom can afford it). However, you need to interview and train, and supervise.

- Ask churches for referrals - ask if you can post on their bulletin board

- Create a small (index card size) ad stating your needs: If you need help getting this together, post at a college (Speak to college Employment Dept), or ask a friend to assist you. You need to be clear on what your needs are and then put in writing-sounds like you need help with this.

"Caregiver needed for xxx
(specific type of needs for your mom... list 1-3):

- prepare easy meals
- assist with bathing and getting dressed
- laundry

* List hours per day (flexible days and hours - to be discussed)

* State: Please let me know your caregiving experience and provide references.
- DO call references

* Must be reliable and dependable

* Indicate: "Hourly wage will be discussed based on experience. (put a range if you wish $15-25 per hour (I do not know the going rate in your area-you need to figure out what you are willing to pay). PUT EVERYTHING IN WRITING and have caregiver sign it (that they understand it - the duties and the payment.

CNAs are certainly better trained although this may not be necessary.
It is an excellent idea though - (an/other/s suggested below).

You could (post with College employment dept)

1) Ad asking someone to help you figure out what you need and how to write and post announcements, what questions to ask...
2) Ad looking for a caregiver - state specific needs

Call local college and ask to speak to Dept Heads: nursing, geriatrics, social work, healthcare services (or any field to do with healthcare).

- Many students may need/want part-time work. (If you do not care if they have experience, and you can clearly tell them what is needed, train them, and supervise (watch them for a couple of weeks), you may get more response / interest.

- Dept chairs might be able to post / ask students in their classes.
speak to the chair of these departments:

DO interview and ask questions.
DO offer a lower hourly payment for a 2-week try out and then increase by $5 or something like that.

Get more than one caregiver in case primary one can't make it due to:
Calls in sick
Can't come due to a sick child or another client
Quit without notice
Is not dependable / reliable

In addition, you should ask for:
- Look at their driver's license (and make a copy of it).
- Ask for copy of their current car insurance.
- Ensure they have current TB test (I have to do every year)
- Covid test results (ask to see document)
- If they are foreign born, ask for papers indicating they can work in USA (if you care).

You may want to do a criminal check (finger printing) - - - as a vetted care provider at a facility/senior community and as a massage therapist, I had to get fingerprinted / criminal background check.

Ask for personal references (not just professional). While they may not be truthful, you can ask and see what they say.

If you mom has dementia, call the appropriate association and ask for support.
Call your MD office and ask for referrals depending on what disease your mom has, i.e., Alzheimer's Association.

You must take care of yourself in order to care for your mom.
If you do not, she won't have you and then what? Get into therapy yourself if you an. Get support in getting the caregiver(s) you need.

PRINT THIS OUT ... and keep it handy.

Gena / Touch Matters

Patathome01 May 2023
Find another facility, if possible and Medicaid licensed.

ACaringDaughter May 2023
I was in this position. A few breaks will make a huge difference.

You need to find a better place to advertise for help. Contact a local program that offers a CNA certificate and ask to interview students that will be earning their credentials soon.

You can also “job share” with someone similarly situated (both of you can take a turn spending time with your mothers together so the other can have a break).

You can also call in an agency for a weekend. Plan a trip for yourself with a friend so you don’t end up sleeping or spending time directionless. You need to take a break from responsibility and worry.

lovelyliz May 2023
janice is correct,
Kimbof May 2023
If I can share my experience. My mom passed 5 weeks ago today. I was in your shoes, and she had reached the point of needing total care. I realized I made rush decisions that I’m not happy with under exhaustion and pressure. Take the extra time to think about options. My family brought hospice in and my mom died within a week. I wish I had taken more time on the hospice meds decision, as well as having certain friends and relatives that were here when she passed.
janicemeyer18 May 2023
Speak to her and your Physician about your " caregiver exhaustion".
Ask her physician for new " level of care assessment" for her; request a case manager/ social worker be assigned or referred to you as they can help you navigate the systems for either potential in home help ( if she is at home) and or placement options in appropriate level of care.
Do not delay these steps toward helping both yourself and, ultimately your mother; because when you collapse or become too ill to care for her, neither she nor you may be able to participate in decisions. This is a safety issue for you both. Get help ! If she is at home and declined from a already diagnosed illness, perhaps it is time to call in hospice. The interdisciplinary care hospice will provide will both help at home possibly and or help you in making placement decisions.


EppsNina May 2023
Not sure what insurance you have but there at home health aids that will come in to assist as few hours a week.

hope that helps ☺️

fxander May 2023
There are organizations and agencies that can provide or help you find caregivers, depending on how much care your mother needs- just with ADL or more medical, etc? Your state or county department on aging or the elderly is a good place to start. When my dad needed help around his house after my mom passed, he found a couple of good samaritan neighbors who were glad to help out for a nominal hourly rate. Do you belong to a church or know anyone who does? Whatever you do, you shouldn’t be the only one caring for her. I’m surprised you’re still going after five years. And do you have anyone you can talk to, at least?

CTTN55 May 2023
Lizreece doesn't respond to comments, apparently. I wondered what happened with her mother? Is she still in the rehab?

Presuming she reads the comments, I'd like to ask her why she can't ask her brothers to come to give her a break? I wonder how often they have visited in the 5 years that Liz has been the mother's caregiver.

I also wonder what the mother's financial situation is. Does Liz have POA/HCPOA?

Rapunzel55 May 2023
Local nursing facilities will care for your Mom for a short term to give you a respite. Call around for prices. Good luck to you!

KNance72 May 2023
Care.com , people post on the Next door neighborhood app looking for Caregiving work , respite care , day programs - call your Alzheimer’s association they may have some referrals .You can bring your Mother home have the primary care Doctor write her a script for in home rehab 4 times a week Medicare pays and see if a social worker can get you a CNA for bathing and light housekeeping like Laundry . VNA can send a nurse . Have your Doctor get you a social worker who can navigate the system . Meals on Wheels isn’t great depends on the menu but it helps . Good luck You can always bring your Mother home 🏠 Just make sure to immediately see her primary care doctor.

JoAnn29 May 2023
If your Mom is considered low income, you may want to try Medicaid for "in home" help. It will not be 24 hr care but she will get some hours to give you a break.

Actually, when she is in rehab is the best time to place her in Long-term care. There are probably places much better than u mentioned i ur profile. You can always change the Rehab if you are not happy. Rehab is a choice not mandatory, even though they don't tell u that. You can refuse it and ask for in home therapy. If you feel that your Mom is not getting the care she deserves, you can complain to the State Ombudsman.

If Mom is in rehab you ask to have her evaluated for 24/7 care. If they find that she is, you can then have her directly transferred to a place of your choice. No money, you apply for Medicaid.
Kristen2037 May 2023
Yes to all of this. Get her transferred directly from rehab to a long term care facility and talk to an elder attorney about applying to Medicaid to pay for it. Don’t bring her home, she needs significant help.
elisny May 2023
Liz. I feel for you. I spent 5+ years daily (on avg 8 hrs/day - typically 1 PM - 9PM) with my mother in a "high end" nursing home to give her some quality of life. She was effectively financially trapped (due to a Life Care contract) in the facility, and subject to routine institutionalize neglect. My mom was immobile, incontinent, legally blind the last 2-3 years, and could not initiate communication, though she could hear and understand. What she and I went through at the hands of the owners and management left me with some PTSD. My mom "departed" last June. I am slowly recovering and recreating my life. I share this not to garner sympathy, but to let you know I have much insight into your predicament.

I assume there is no money for private aides or you would have enlisted them for some respite. If you haven't already, check local agencies, religious organizations, and non-profits to see if there is any organization offering respite care. Also, maybe your mother would be better off in residential care home (see https://www.aplaceformom.com/care-homes/tennessee/gainesboro) if it could be arranged.

Unfortunately, there are no easy solutions. BTW, I have 3 brothers and 3 step-siblings. None of them provided any substantial help to my mother. Not one.
betskand May 2023
hugs to you, elisny.
ventingisback May 2023
I hope you have POA (Power of Attorney). That document will give you authority to easily remove her from rehab, even if it's AMA (Against Medical Advice). It doesn't sound like you have POA however, otherwise you would have mentioned it. For many reasons, it's a good idea for you to get POA. To draft a POA, you'll need a lawyer.

As you said, your Mom has aphasia (when she speaks, the words come out jumbled up; incomprehensible). Luckily, aphasia doesn't always mean mentally incompetent. If she's able to make her own decisions, then she can discharge herself from rehab.

Even without POA, you can bring her home if you wish.
...if you can convince the doctors that you can take care of her safely at home.

You can try to find a different rehab.

You said you need a break. Options:
a. I guess your Mom doesn't have much money, otherwise you would already have hired caregivers to replace you at home years ago.
b. You tried to put ads on FB. Instead, speak directly to caregiver agencies. Speak to churches, if they know of any private caregivers who'd like to be hired. Interview candidates carefully.
c. Or you can completely walk away and let APS (Adult Protective Services) take over. Most likely they'll put her in a facility. And then you can visit, and not be a caregiver.

I really hope, whatever decisions you make, you can have a break. You fully deserve it.

mstrbill May 2023
Hi Liz, you either have to hire caregivers from an agency to help care give in your home(FB is not the place to try to hire someone) or you have to place her in a facility. I read you didn't like the facility she was in, perhaps you can find a better one. You can also reach out to the local hospital or her DR., or the local Agency on Aging to see if there is any other help available. Facebook or ads in the paper are not the right way to go, you want a licensed accredited agency to help you, not someone off the street that you don't know anything about.

Countrymouse May 2023
Hi Liz, I read your profile. When did your mother arrive at this rehab place? I'm hoping she's only just got there and it was just a bad first impression.

Planning to bring her home - she's more likely to get home and stay home if you work closely with her medical and care team. What have they said so far about her rehab goals?

ZippyZee May 2023
Put her in a facility.

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