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What to do with mom I’m desperate?!

Mom (55) has dementia and lives with me I take full time care of her. I cannot do it anymore it’s become an all-consuming thing in my life I do not sleep maybe an hour or two I can’t even go to the corner store for eggs without having someone come stay with my mom and I only have one other family member and do not have the money to pay anyone to come help me. I do not have friends that can help I don’t have anyone and I’m losing my mind. My mother does not qualify for Medicaid because her disability is too much and she won’t get Medicare for another year so I cannot put her in a home or alf. I have hired a Medicaid attorney but it’s a long process and I can’t see myself doing this for another month without completely just losing my mind. She doesn't even make enough ($2200 a month) to be put in a home without Medicaid and I barely have money and am raising a 4 year old. I've spoken to the ALZ association I’ve spoken to anyone who might be able to help but my options are so limited what can I do? Can I give her to the state? Can I take her to a hospital? I’m desperate for any advice also I live in Miami FL

Status: Open    Aug 19, 2016 - 08:17 AM

Dementia, Caregiving

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Aug 20, 2016 - 11:02 AM

I am sorry for your situation. My wife developed ALZ at age 53 and was dead by 63. I do know what caregiving entails. I do know what it means to be at the end of your rope.

First MediCARE never pays for long term or residental care so whatever happens next year is of no help. MediCADE is the government plan that pays for indigent people but as you are discovering since your mother has some resources she does not seem to meet the definition of being poor enough.

You have two 'children' in your home and the care demands are incredible. I will assume that your mother is in a state such that she can not participate in her own care. Can you 'give her to the state'? Unfortunately no, there is no easy system to do so.

You can try calling Adult Protective Services and tell them that you are unable to provide care for her any longer (which might constitute elder abuse) and perhaps they can begin to get her into the system.

The extreme solution is that if she has a 'medical condition' you can call EMS (911) and have her taken to an emergency room for evaluation. When they finish their evaluation then you refuse to take her back home. You might choose to not even accompany her to the hospital. You can explain to the hospital social worker who will be repeatedly calling you to pick her up that it is impossible for you to care for her any longer. Laws dictate that a hospital cannot discharge a helpless person to the street. They will absolutely hate it but the hospital will have to become involved in placing her into some sort of care facility.

Eventually she will be assigned a government case worker who will become her conservator and make all decisions on her behalf. All her assets will be taken by the government (but it doesnt seem like she has many) You will lose control of the decision making process for her and all choices will then be made by her conservator.

Unfortunately this is an ugly process and involves a lot of agression on your part to force the issue and have her placed in a government paid care situation. It is certainly NOT something you would choose to do if there are any other options. But if it is harming your health (which is common) and your abilty to care for your 4 year old daughter then it may be something you have to consider.
Comments (10) | New Comment

By mebunny_97 on Aug 27, 2016 - 04:29 AM | Like (0)  |  Report

Gosh, this situation just sounds awful! I wish I lived closer to the questioner; I would be happy to offer her a break from time to time to save her sanity. I am a senior also, and more and more I realize how fortunate I am so far, healthwise. Very painful arthritis, but other than that, I'm still in touch with reality. I wonder if there are support groups who might offer her a different perspective. And, maybe, there are even people willing to take turns looking after elderly family members to give each other a brief respite. I think I will look into that possibility here in Kansas City, as well.

By dambrs on Aug 27, 2016 - 06:22 AM | Like (0)  |  Report

Contact a local council on aging and see if they have a friendly visitor program. Perhaps an adult day health center could also help. They should have transportation and it should offer 1/2 day or full day programs. I'm not sure if the Caregivers Home program is available in Florida, but that may also be an option.
I am afraid that if you just do not care for your mother without legal advice, you may open yourself up to neglect or abuse issues. So please be careful.

By jccampbe on Aug 27, 2016 - 10:37 AM | Like (0)  |  Report

I too was a full-time caregiver for my mother with severe Alzheimer's (age 81) for over 2 years before placement in a skilled nursing facility, and I've experienced first-hand the physical, psychological & financial stress and exhaustion that you've described. So I can definitely empathize with your dire situation. You may try searching for Alzheimer's/Memory Care facilities near your area that also provide adult day care and respite care. Plus, you can also try home health services to hire a certified nursing assistant (CNA) or home help aid to assist you in-home. These services are life-saver. In addition, due to your mother's primary diagnosis of Alzheimer's or other dementia and her needs for assistance with various activities of daily living (ADLs), she may also qualify for Medicare in-home hospice care (which is different from end-stage hospice care).

By maricusitin on Aug 27, 2016 - 06:46 PM | Like (0)  |  Report

Hello v.jackie2122

I know what you are going through. I was taking care of both of my parents with dementia (not alzheimers). I did this for five years while having a job (as a teacher) and going through a divorce. Talk about tough, I totally understand. My father passed away two weeks ago, and I can only say that I have the satisfaction to know that I was with him 24/7 in the hospital and was there for him until the very end.

Now, there are many things you can do with $2,200 a month. My parents only made $1,500 a month (for both). With that money, I filed for Medicaid...and they still didn't qualify. However, when I showed that their entire income went to caregiving, they immediately qualified. With $2,200 per month, you can pay someone $10 per hour to stay with your mom while you work. If six hours per day is good for you, then that's $1,800 a month you can use to help you with care. When Medicaid sees that she only has $400 a month left for food, she will qualify. The cost of home health aides is a deductible expense. Once she qualifies for Medicaid, she will qualify for food stamps and that also is a big help. If her salary helps with rent, that's also a deductible expense. Right now, the reason she doesn't qualify for Medicaid is because you are not using her income for care giving services. I hope this helps you, because it helped me enormously. If you need any further asisstance or help, I know what you are going through. Please do not hesitate to contact me so I can help you.

By cindakinsey on Aug 29, 2016 - 04:23 AM | Like (0)  |  Report

Are you saying that Medicaid will cover in-home caring services? Also, I have been told it can take 3-6mos to apply for Medicaid and you can only apply if loved one is currently in a nursing home or long term care facility?

By lisa.kritzell on Aug 29, 2016 - 10:01 AM | Like (0)  |  Report

I am a medical social worker, I work in a hospital setting; and can tell you that the recommendation to call 911 and refuse to take your Mom home from the hospital does happen. However, I am not convinced that you will lose all rights to decision making for her. It is a very common situation to NOT be able to take care of an aging parent, no matter how much you would like to. If you do decide to go that route, I strongly suggest you always call the social workers back. Visit your Mom, show a caring presence. Make sure that you are the one to sign all consents for any procedures she might need. Discuss with them that you have to work, take care of your grandchild etc. and it is not safe for your Mom alone at home, and you are willing to spend her assets to make sure she is cared for. If there is a medical power of attorney, get it out and give it to the hospital. This showed your Mom's wishes that YOU be in charge. The discharge planning team will help you all they can. If you do not call back, yes they will resort to calling Adult Protective Services and the Public Guardian, simply because of necessity, that there is no one to manage your Mom's affairs.

You will have to go through the Medicaid waiting process due to her income. But she will qualify for Medicaid for long term care. Medicaid does cover in home care services, however your Mom's income is much too high to get that program. Generally if you make 800 to 1000 / month, you can qualify for that. I agree that if you spend her money on getting outside care to help you, you may be able to keep her home for a while, certainly long enough to get the Medicaid to come through, then with Medicaid, she can get into a long term custodial bed in an nursing home.
In some states there is a waiver program where Medicaid will also pay for Assisted Living, not just nursing home care. I am unsure about Florida. Your attorney should be able to help you find that out, or the hospital discharge planners.
Calling the Area Agency on Aging is a very good idea, and so is Adult Day Healthcare.
Good Luck with all this. I understand it is very hard.

By maricusitin on Aug 29, 2016 - 07:20 PM | Like (0)  |  Report

Yes, I am saying that Medicaid covers care giving services. They come and evaluate her at home and decide how many hours she needs. This only happens once her Medicaid has been accepted. However, you will need to prove that you are paying privately for caregiving services. Use her salary to pay for caregiving is a deductible expense. It will be used to determine if she is eligible.

By vmieraaa on Sep 07, 2016 - 09:06 PM | Like (0)  |  Report

I totally understand what you're going through. I was a caregiver for my mom who had dementia, along with other health problems, heart disease, osteoporosis,etc., and after her two hip surgeries (one on her left and one on her right) after falling twice, she would no longer walk on her own or with a walker. She attempted to, but got weaker and weaker until she just sat around all day (she had a fear of falling again). She was 75 when she was diagnosed with ALZ and my father, who was 76 at the time, was a full-time caregiver. I worked full-time and lived an hour away and would take care of her on weekends while my dad had a getaway/respite to rest and not go crazy. So I had NO break and it was like working 7 days a week. I did this for 6 years. However, I had no young child (just four animal pets). Luckily I had a supportive husband who did the chores around the house while I was gone. His father passed away 11 years ago from Alzheimer's so he was very empathetic. Of course, my husband wanted me home more, but he understood it was temporary, we just didn't know for how long. My father also could not afford to put her in a home or ALF. I wish that there was a cure for ALZ and maybe there will be someday and there are only medications that help their memory loss but eventually that doesn't work. It was heartwrenching to see my mother's life deterioriate in front of our eyes. On days when I was emotional, I would not let her see me cry, I would go home and cry in the middle of the night because I was Mom's little girl (and the youngest daughter). I understand your feelings about putting her in a home or hospital, and if that's what you need to do to keep your sanity and take good care of your 4-year old, you should not feel guilty and do it. The most important thing is that she gets the proper care and attention. My mother always did better when she was in the nursing homes after her emergency visits to the hospital. But when she returned home, she would deteriorate all over again. I don't blame my father, he did the best he could without losing his sanity. He was and is old and needed to care for his own needs and health problems.

I wish there was a better system for taking care of our elderly. Unfortunately it's the family members that have to whether they have a job away from home or not (or young children or grandchildren) which is very common. Someday I think that will change, but it make take some time. I feel empathy for you.

Here in California, we have IHSS (In Home Support Services) in each county , which is a system where a family member or friend or whomever can get paid for taking care of their loved one. My dad was not able to get that since he lived with my mom. How unfortunate is that? We would help my mom and dad financially, but it's not easy to even do that every month when you get laid off or business is slow (which is the case for my eldest sister), or not receiving child support from a father who's an alcoholic and jobless (in the case of my other sister). So my father had to deal with not having food in the house until the 1st and a reverse mortgage and continuing credit care debt.
I prayed for you, your Mom and your 4-year old, and I wish you the best.
God Bless You.

By my7rum on Sep 11, 2016 - 12:24 PM | Like (0)  |  Report

I am taking care of my Mother as well . Yes I know you have your hands full . Please hang in there for her , you only get one Mother . I could never see my Mother in a Home , they don't take good care of them not like one of her own would care for her . I know its hard but for her and for knowing you did all you could for her , please hang in there .

By usheroes on Sep 25, 2016 - 09:00 AM | Like (0)  |  Report

What I did was ask local churches if they had someone willing to work for $10 an hour and come in a few hours of the day. I spend most of my paycheck doing this but it relieves my mind. And working (even if I have to spend my paycheck) gets me out and relieves the stress.

I have a wonderful caregiver that only lives a few miles from my dad! god has been good to me in this, and I thought I would literally lose my mind before coming up with this solution.

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