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I have been caring for my mom for seven years and the last two years she can not be left alone. I am single have cut my work hours to less than 20 per week am having trouble finding quality care for my mom except for the few hours I get to leave my home....I hate my life because I no longer have a life, family have said I need a support group and since I cannot leave to join a group I am here. We have had loss in the past year with my brother passing unexpectedly.....Oh how I wish it would have been me.....I pray daily asking for help from above.....my prayers have yet to be answered....I am boarding on financial ruin from lack of work and paying out as much as I make just to care for her....I find I have no more patience for my mom because I am so unhappy in my own life....I will not put her in a nursing home because we don't have enough money to get her proper care so she is living with me. She has advanced stage Parkinson's, Dementia and the newest development is that she has panic attacks which are horrible. These are the worse, she tightens up all her muscles than complains about the pain from the tightened muscles.....I have had her to pain doctors, psychologists, primary care and of course the Parkinson doctor....nothing seems to help....All I know is I need some help and advise...
Thank you in advance for reading and helping.....
Feeling hopeless

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Do not leave your job!!!! Who will pay the bills? Then, like me, you could possibly have a hard time finding a decent job. Is she on Medicare? Does she have any $ of her own? What is the Dr. saying about prescribing home health care? Surely they have some suggestion. Is there a Parkinson's Support Group in your area? Do not panic...this is a great place for ideas and support. It is so hard to feel like you are holding up the world on your shoulders all alone.
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She needs to be in a skilled nursing care facility that accepts medicaid, assuming their are no funds. No one can do what you are tring to do without lots of family support and lots of money for in home help. For the sake of you both check to this now. This site has good info about a lying for medicad and finding a care facility.
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Should have typed.......Applying for medicaid
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No not quiting job.....am lucky it is my own business......but is still very difficult she has some money which I have had to use for our living expenses but not enough to cover all the expenses am just so very frustrated but thank you for your encouragment I am hoping I can get some perspective by being here
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I don't feel like you are doing her any good, keeping her at home. What happens if you die suddenly? She will go somewhere, then. I think you need to make that happen, now. Talk to the administrator at a NH and get the medicaid arrangements made, for her to be admitted.

My mother is 96. My MIL is 92. Both are in nice facilities. They are safe, clean, dressed, fed and entertained. My husband and I both work full time and we need our own health insurance and soc. sec. benefits. So, bringing them home with us, was never an option.
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Windyridge......was getting help from family up until my brothers passing shortly after that my other brother abondoned us I do get my younger brother on Sunday's woohoo so I can go shopping.....I know once I can get back on my own feet financially I can than use her money for her care I went from over 50,0000 a year to less than 15,000....and am just trying to be able to afford her care an my sanity
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I will not put her in a home I will feel as if I abondoned her......I just need to find quality affordable in home care so I can get back on my feet
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I think you're dealing with it. Keep it up and good luck
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I can see why you feel hopeless. You have ruled out your answer.
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Quality affordable in home care through an agency is $20 an hour. Private pay is $10-15 an hour. Depending on your mother's income she might qualify for some financial assistance. Medicare might pay some in home care based on her limitations of activities of daily living skills. Hopefully you have durable power of attorney and healthcare proxy. Local senipr centers and the Counsel on Aging can help guide you.
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Hi, Amy yep I have power of attorney I know the agencies are expensive and can afford private but it is finding that good person :( have been through several any suggestions
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Can you afford to put her in respite care now and then just to give yourself a break?
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I am saying in a loving way, you should rethink about a nursing home for your mom. You say you are not patient with her. Then she has panic attacks and tightens up. Those should be red flags for you. If you don't do something, then YOU will be in a NH or a cardiac rehab center. Life is not to be just endured. The NH would be paid out of Medicaid funds.
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I totally get your predicament....my Mom is 95....she gets a little too much to qualify for Medicaid (which would provide unlimited resources) and Medicare covers very little outside of Drs. and meds. I too have had to relinquish work hours to care for her so that I am making 1/3 of what I used to....because of her income on paper I cannot apply for MediCal or Medicaid (besides we both hate the intrusiveness of the process, both into our finances and life) and I have no medical insurance because on paper I own too much property!! I have two siblings who could help but the drama and their lifestyles....well its not worth it! Frankly, I have days when I just want to "walk off into the sunset"!! I HAVE visited NHs and most take care of basic needs but we have had horrific experiences when she broke her hip a few years back and I REFUSE to place her in one of those affordable places....besides on paper she doesn't qualify for much assistance (most of her income goes to pay down debts and burial)!!! Hang in there and DO take time to care for yourself physically....I lay out a plan each week of healthy foods to eat, and try to get in 15 min of exercise 2 to 3 times a day! But I feel at times like I am aging at warped speed and sometimes feel like Mom will outlive ME!!! At least I will go knowing I did my best to keep her happy and safe! Hang in there....(((HUGS))) and prayers!
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Thank you, Quecamon3 I am relieved to finally hear from someone who understands....what we face because of income and how we just fall short of the abundant resources available to the less fortunate we are the forgotten middle class who are neither rich nor poor but surviving or at least trying to. But I know even though some days are harder than others I will survive these times and like you I know I am giving her the best I can.....interviewing yet again for quality in home care.....ugh this is so hard to find right person to care for my mom and I can leave feeling confident she is in good hands....oops rambling lol :) I will take your advise and try to get in some exercise daily of at least fifteen minutes would be good to take my dogs out for a walk :) again thank you for understanding and sharing
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and that's why they say not to go into retirement in debt, isn't it....what dealing with with hub's aunt and uncle as well - beck, some home health agencies have lists of private in-home care people
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I'm in this exact situation. My family is useless so it's just me. My mom just went into home hospice. We have never lived apart so it was a no brainier that I would take her in my home. No one really explained how much work this would be. After less than a week of being a prisoner in my own home (I can't leave unless a hospice nurse or aide is here) I reached out to an in home nurse group. They are $20 an hour and I only took two half days for them to come in. They are pushing for more but I can't haphazardly spend money. I did it for my sanity. You must find some way to stay sane. A friend came over on Saturday night and we sat outside talking. It did wonders. Find little things to keep you happy. I've been caring for my mom for almost 20 years, but she's only been bedridden for over a week. You are a strong dedicated loving person. Don't forget that.
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Thank you jillie76, I know there are others out there like me we need to stay strong for each other and yes I feel like a prisoner of my own home :( but I know I am doing what is best for her...
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What about vouchers for home care ? I receive 2 one from helping hands and one fro, alzehemiers that help pay for moms care while I am at work .. There is also senior day care you can put her in while you work then go get her ... There's lots of resources ... For home care help .. Do you have home health for a CNA to come bathe her get a dr order for home health. Call the Parkinson's association to see how you can get a voucher for home help respite . My mom has alzehemiers and bil blood clots in her legs , osteoarthritis extra and I will not place her either . I work full time as a RN , my sister died at age 49 of sudden cardiac death in 2013 and now it's mom and I . My sister and I were RNs at the same hospital and I miss her everyday , if you need help just let me know
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There is so much help out there for respite and just to have someone to help you .... You can do this ... Your doing a fine job
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Medicar covers all my mothers home health care workers - and she is an assisted living facility! Now I see my mother roughly three hours a day and six hours a day on weekends and sometimes bring my mother home for dinner or eat dinner with her.. her own home was nots et up for her physical needs and i don't have the money to my own home physically safe for my mother either. I agree with AmyRetired - make sure you have durable power of attorney.
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for how long, though, or how long has it been, Sheenaz? typically Medicare only pays for so long
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Your question is does anyone have advice and you say that family and friends have abandoned you. Those people who have abandoned you may have had the advice you needed to hear and refused. There is no replacement in our culture for the care of a loving daughter but there are limits as to what is truly helpful and what is a form of codependent behavior that does not serve well for either of you. It sounds like you are denying your mother more qualified care that she needs. I wonder if what you are doing is living in your mothers house, using your mothers income and that your business is more a hobby than a business at this point. You didn't mention if you were a qualified health care provider so I'm making an assumption here based on the information you gave. I'm not negating the fact that your mother requires care and that you are spending a great amount of time tending to her. My advice is to get therapy for yourself in order for you to see the larger picture. Then you might see that your brothers are doing the best they can within the narrow window you have open for them or anyone else to make a difference. Good luck.
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Beck, contact Henry Ford Hospital and ask if they have a home care agency or respite services for you. I know they're costly, but Ford might have some way of assisting, or may be able to offer suggestions.

In the last decade or so I discovered that a Ford facility on 8 Mile in Northville was pioneering integration of alternative medicines. I then learned that another Ford facility in W. Bloomfield was also taking steps along this route.

If they are, I'm thinking that the Dearborn facility may also have some more advanced support for patients and their caregivers, especially in the field of support groups and or respite. I honestly don't know what they have, but it's worth a call.

Botsford Hospital on 8 and Grand River used to also have some patient oriented activities, but I don't know if they still do. I was thinking of a support group that you might be able to attend if you can get someone to stay with your mother.

Someone in the medical field with whom I spoke in the last month or so mentioned hospitals that have their own DME supply units; sometimes such hospitals with integrated services have other units that provide respite care. I have brochures from Ford collected at an Area Agency on Aging expo but I don't know where they are right now.

There's a Gilda's Club in Royal Oak (248- 577-0800). I don't think they have any respite services that would help you since RO is quite a hike from Dearborn, but they might have some ideas or suggestions on what's available in Dearborn.

I'm not at all familiar with the Senior Center in Dearborn, but they may also have lists of competent caregivers. I do know, though, that it's not easy to interview and select someone in whom you have confidence just based on an interview.

I'm wondering if either Ford or Gilda's Club have social workers that could address the financial situation and offer suggestions.
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I am a single, only child, only Poa for my father who has Alzheimer's. For 10 years I also took care of my mother who also had Alzheimer's. When they both became violent, I had no choice but to put them in a home. It was horrific. They both asked me to kill them several times. The went to the ER several times for falls & various issues. They screamed for hours each visit. I wish I has researched VA & Medicaid earlier. Thankfully, the Missourit Veterans Commission helped me, but I still only slept about 4 hrs q night for 2 years. My mother died a horrible death in Feb, and now I am sick with something. I lost touch with all my friends. Everyone in my family is dead, dying, or caring for someone who is dying, so they can't help. I don't know how to help u except to let u know that your situation is not unique. It's horrible and no one deserves it, but it is not unique. I hope it will help you to know that there are others out here in the world who have experienced something even vaguely like your tragedy. Even if you believe that you will be able to avoid a nursing home, research that option. I hope you don't need that either, but your health will be damaged. If it is damaged sooner rather than later, you will need information about nursing homes and in home care.
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Get over the "I feel like I will have abandoned her" -- you have already devoted a considerable time and effort to mom. It is not fair that you bear the burden of mom's care; don't feel guilty for wanting your own life. Mom had hers, now its your turn to have yours.

Get involved in local "caregiver's group" -- MAKE THE TIME!!! go at least to one visit and then see if it's possible to set up a webinar or a way that you can participate in the meetings and conversations remotely if you have to. THey will have many helpful and supportive insights. (church, hospital, hospice -- all have caregiver group meetings)
Get outside help -- even if only a few hours a day or a couple days a week -- this is an investment in mom and your own mental and physical health. Yes, it costs $20/hr -- but it is a great investment. If mom is able - have the aid take mom out for a drive, for lunch, dinner, etc.
Call your local center for aging and ask them for resources to help you sort through financial assistance to get skilled care in your home
PLEASE consider placing mom in skilled care (sometimes that is much more economical) and you can turn over the day to day caregiving to skilled care and you can then be the loving daughter you want to be spending true quality time with mom.
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97YearOldMom, I feel an obligation to defend the OP. There have been plenty of people who've written similar posts, over and over, but there are also those who post about similar situations and seek help, in earnest. I might be blind to ulterior motives but I don't see that in Beck's post.

People don't maintain relationships with others during the caregiving years for a number of reasons, not the least of which is that the whole concept of caring for an elderly parent isn't a particularly exciting topic of discussion. And if friends or others haven't done it, they'll never completely understand how demanding it can be.

It's not as if caregivers excitedly meet their friends to tell about their grueling days. It's not like sharing the excitement of a new job or other positive experience. Not all people want to even hear the details of caregiving. It makes them too uncomfortable.

At times it feels as if you're caught in a whirlpool, being sucked down, and you're unable to free yourself. At times the issues can be so overwhelming that it's as if all the neurons in your brain are firing simultaneously and you can't think clearly. And other times it's just complete, sheer, mental and physical exhaustion.

Even if someone stood in front of a caregiver and offered to help, the caregiver might be so numb that the offer doesn't even register.

There's also a phenomenon that develops, and I don't believe it's co-dependency; it's a feeling of overwhelming obligation and anxiety of what might happen if the caregiver isn't giving as much as he or she can. If something does happen, the caregiver frequently blames herself, even if the event wasn't anything she could prevent.

I consider myself to be a feisty, tough old woman when I need to be, but there are times when I can't even think clearly, or when the anxiety is so much I can't sleep. And if I take days off to play in my garden, I feel guilty because there's so much that my father needs to have done at his house. Where do I draw the line? Where does any caregiver draw that line?

I can't really even begin to describe the subordination of individual rights and goals as well as the mental fatigue that often accompanies caregiving. I sense that Beck is in this position.

You wrote:

"It sounds like you are denying your mother more qualified care that she needs."

I'm sure you didn't mean it as it was written and it wasn't intended to be cruel or critical. But it did sound like that. Beck is overwhelmed, as are others here, including those of us who post often. She's probably denying herself just as much as any unintentional denial of her mother's needs.

"I wonder if what you are doing is living in your mothers house, using your mothers income and that your business is more a hobby than a business at this point."

Again, I understand that you're speculating, and perhaps you're right and I'm wrong. But I did think this supposition was inappropriate.

Have you ever run your own business? If not, do you have any idea how difficult it is, to handle all the product or service R & D, the marketing, the delivery of services or products, the legal and financial aspects?

Beck wrote that she went from a $50K income to about $15K. That's a significant drop; even if she did have a "hobby" at a $50K level, it was a well planned and orchestrated one. And from what I read, it was her only source of income.

If there's evidence that your suppositions are accurate, I will most certainly apologize for my own misinterpretations. It is not my intent to criticize you or provoke a conflict It's rather to point out that there are so many aspects to Beck's position that aren't possible for any of us not in that situation to completely understand, and it's tenuous to make conclusive judgments.

I hope I haven't offended you; that was not my intent.
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Garden artist, excellent comments. You hit the nail on the head.

97yearoldmom, you were cruel towards the OP in my opinion. You really think that people who end up being the sole caregiver, become that way because no one wants to bother because they don't agree with the caregiver? PLEASE, this happens because it usually falls on one adult child(usually a female and single) and they get no help because no one offers or even if you plead comes forward to help.

You suggest she go to therapy? When would she have time. She gets a break on Sunday by her brother and SIL(as she said whoopty do) to go to the store to get supplies, when you do you suggest she go to therapy?

OP, it really does sound like this is too much for you, who owns the home you're in, you or mom? I ask for Medicaid reasons, you need to look into that.

As one poster said "what happens to mom if something happens to you?", this is very frequent, the caregiver goes before the parent, due to ill health caused by the stress of caregiving.

You need help. I understand you wanting to keep mom at home, but this is too much for you.
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You can apply for Medi-Cal if your mom has a low income and pursue in-home support services which would be free if otherwise eligible. You could also consider day respite programs. Hope this helps.
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Isn't it true that the doctor is the one that prescribes home health aid? then Medicare will pay for it. My mom, not having any assets whatsoever, except for Soc. Sec., has home health coming in to OUR home paid by Medicare/Medicaid to help me with laundry, dishes, cleaning bathroom and her bedroom, changing the bed, trash, etc... and my mom at 93 is relatively healthy with no handicaps except for old age. I don't know how you are doing it alone... it's insane. You need help right now. Talk to her doctor and if she has no assets... and makes LESS than $2,000 a month, she will qualify for Medicaid. Get going... you will be so glad you did. As for not putting her in a home, you may end up in one yourself doing all this alone. Does your life not matter???
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