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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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Heart2heart thank you I also feel blessed that I have been able to do this.....I know I don't have a lot of time to work but I know that if I can just work a good six months I can knock out quite a few needless expenses goal number one, and to build up a small reserve again goal two, that way when I will have to stay with her more I will be able to.....only God knows these answers or even if they are realistic I put my faith in the lord who will guide me
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97yearoldmom, I am in the accounting field have a great bunch of clients who allow me to work as much or as little as I want....my mom has Parkinson's yes I do know there may come a time when she will require more care than I or a in home can provide and may have no choice but to put her in a home, I will listen to what her doctors advise me...I have also learned that not only do dementia patients need consistency but this in and out with different workers has taken its toll on her which has caused her panic attacks.....so finding a great home aide is key to my success my prayers may have been answered with the last person I interviewed......
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Thank you sunny girl.....I am taking steps by enrolling her in the geriatric program at U of M here in my state they are a top notch hospital and study/learning facility which I feel will be much better suited to handling her needs she has Parkinson's which has contributed to the dementia...I am hoping by having all doctors in same facility seeing the notes others have wrote in her charts will help her, including her medications
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It's quite admirable to say you are going to get someone to come in a few hours a day to help, but after seeing first hand how much care a person with dementia and other issues have, I don't see how that kind of set up works full time. And if you are expecting an elderly person with terminal, debilitating illnesses to get back on their feet.....welll. I haven't seen it happen. Normally, things go downhill quick. A facility that provides around the clock care are quite necessary in some cases, IMO, when you have a person who needs help with so many areas of their daily care. It has nothing to do with loyalty or commitment.

Beck5699, I might would have someone conduct an evaluation to see exactly how much assistance your mom needs. Perhaps a professional could provide a written report that would aid you in determining if your plans will work or if your mom needs more at this point.
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I'm in a similar situation... After reading a lot of posts, 'counselors' (that didn't help),etc. I continue to assimilate all the facts of what 'real-life' caregiver's (mostly here on this site) have experienced and make sure to force some kind of balance in my life. I'm going on 10 yrs with my mother now... It's so easy to get lost in their life and not in yours (especially with no help). Even after all 'this' caregiving aftermath, I truly feel Blessed to be able to help my mother. If I could only be this lucky when I'm her age. You sound strong and like a survivor... But, you must take care of yourself... don't beat yourself up. ((Big Hug))
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Becky, you're very welcome.

Lots of great advice on here.

vstefans brings up a very valid point. Even if your mother was placed somewhere these same people would than come up with excuses as to how busy they are and wouldn't visit her or assist you in anyway.

These are just excuses. You would hear them regardless.

My favorite is "well you chose this". No, one adult child steps up to the plate FIRST, and all of sudden it's all on them.

Or "I would rather remember them the way they were".....LOL. Nice try, but it's BS. Just say "I don't want to be bothered", until the will is read of course. Than they have the time.
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Becky - if home care works out well now, what a blessing for you both!!

But, if it doesn't, you could have to do what is really best for her and necessary for you, even at the risk of making you "feel" like you are abandoning her or feeling guilty. If that never happens, and she passes away at home when her time comes, great, you never have to use a nursing home...but if that's not how it plays out and she does go into a facility, please don't beat yourself up, and realize that in some ways you will be nearly as involved as you are now.

It really is wrong for family to sit back and say they will give you NO help and NO respite because you "choose" not to place her and want to give care at home. Its an excuse from caring, and they probably would not do much more if she was somewhere else. Caring IS hard; balancing and coordinating work and caregiving is on mean feat, watching a loved one's decline is grief-filled and even harder, and people who are not as strong will grasp at opportunities to beg off if they think someone else has got it all under control. Sometimes you can find things they feel are easy enough for them to handle that actually take something off your do list...though you may have to get around the resentment that they don't step up to do more.
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Care giving is so difficult. Depending on her case there may be resources she may qualify for. If she has Medicare/Medicaid they may pay for home health to come in and help. Your county aging office probably has resources you could quality for including respite care to give you a break. Depending on how sick she is she may qualify for hospice benefits, which doesn't cost anything if she has insurance, medicare or Medicaid. I work for a hospice company and we have patients that can be on for some time, if they are continuing to decline. Happy to give you our number if you are in the Utah area. Glad you are applying for Medicaid. That will help if you ever had to place her. Make sure you are taking care of yourself, do things that rejuvenate you anytime you can. Let people help you if they are willing. The county aging services should be able to help you with are giver support as well. Hang in there! You are amazing for taking this on and being so responsible. You are a great daughter.
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97YearOldMom, thank you for explaining and sharing your perspective. This post was very helpful in understanding your earlier observations and comments.

We could discuss and debate our respective views, but I think the important issue now is that Beck has moved on to solutions.

I would be curious though how many elders or family members have you cared for, and/or is there someone caring for you now?

Again, thank you for sharing your insights and helping to clarify your position.
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Beck
I'm glad you were able to find a family member to help and that your faith has been restored.
I'm not sure what Garden meant by ulterior motives. I did not think you were doing anything but asking for help.
Garden you might look up co-dependence. The comments you made are a pretty good definition of co-dependence. And yes, I have ran a business, that's why I wondered if it was more of a hobby because most businesses are not successful with 20 hours a week. And I did mean what I said about keeping her mother from more qualified care. You suggested more care for her mother yourself. Your comment about me not realizing that Beck also needed care was way off base. I thought Beck needed care most of all. That's why I suggested therapy. When you envy your brother his unexpected death, you aren't in a good place to be taking care of a dependent. And last of all, I'm really sorry that you don't have friends. Care givers need friends and I find that they make good ones. That theory is just pure baloney. Look how quickly you and Irish and Beck have bonded. All you needed was someone to gang up on.
And Irish, I think anyone who can run a successful business with one hand, take care of a handicapped mother for seven years with the other (and have dogs) is intelligent enough to figure out when she can work into her schedule the time for a therapy session...especially knowing that it could make the difference in life and death. If Beck can think clearly, stay healthy and make good decisions, she will be able to take care of herself and her mother. If not, she might run away with the other brother.
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do you all not have the state VA's up there?
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Beck, the VA in Ann Arbor is a top notch facility which has received a Silver Medal award from the Planetree organization for patient centered healthcare.

On the 6th floor of the outpatient building are the service organizations - American Legion, VFW and I think a few more. The American Legion helped us to get my father qualified. Despite having handled all the financial, medical, legal and VA paper work for Dad for decades, I found it so much easier to rely on the AL - they know all the ins and outs and Dad was qualified in what I understand is a record 5 months or so.

And yes, I will check of U of M.

Good luck; it's good to hear that you've found solutions and are on the right track.
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Thank you again GardenArtist....yes am so glad I researched and came across U of M program she will have all her doctors in one place the first appointment alone is 3+ hours talking with everyone has helped more than you could all know it has given me hope.....and I know I can make money again the business is out there and am very fortunate that one of my clients has enough work for me to keep me busy all week so I am biting the bullet and doing all I can to not only make money again but take care of my mom you should check out U of M for your father they require that they be 70 or older not sure about insurance but am lucky my mom has Medicare her primary and bcbs as her secondary :)
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Thank you for your comment Jocelyne....my mom receives just over the 2000 thresh hold so those programs are not available for her so I borrowed some money from a nephew to help me get back on my own two feet so I can use her money to pay for in home care and I think I have finally found someone she does have great insurance so I am taking her to U of M geriatric center they are rated 3rd in the field john Hopkins was #1 thank
goodness she has two insurance what Medicare doesn't cover they will :) thank you ford motor.....so I am looking towards getting myself out working making money again and my moms money for her care we are also looking into VA aide and assist benefits since we just found out my dad qualifies for va benefits and since he has passed she will qualify for the aide and assit benefit so I am looking at this in a positive thing....I am lucky that I have a business where I can make good money if I can get out and work
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Beck, I'm so glad you've had time to explore some options. It's too bad Ford doesn't have a more reasonably priced program, but sometimes options that don't work out provide opportunities for something that does.

As you probably know, U of M hospital is top notch, high quality, best of the best in our area in my opinion. I wasn't aware they had a geriatric center but I appreciate that information as I may take my father there, or go there myself.

Best wishes to you, but please let us know how things work out.
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Thank you GardenArtist my job is not a hobby and my mom has lived in my home for the past 7 years.....it has only been the last two years that we have given her 24 hour care....as I stated to another I am over whelmed......yes.....that is an undrrstatement and I am wanting and needing to work full time again so funding the right private care person which I think I have found...thank you Lord for hearing my prayers.....I am hoping that I can once again work full time to make my own money and use my moms money to care for her......and I am lucky because I can make good money.....you were so right about 97yearoldmoms comments they were just mean, yes my mom needs care 24 hours but not enough to be in a nursing home full time not to mention that unless you have the money she will not get quality care because for that it's about 100,000 a year.....so thank you for all your suggestions I did try Henry ford they have a great program but she makes a little to much per month to qualify for care and if I want I can pay them 3000 a month right.....I am going to take her to U of M geriatric center, they are listed as the third best facility for care and they do not even take you unless you are 70....am very positive not only with care giver I interviewed but also with U of M where our appointment will also consist of speaking with a social worker......all positive steps.....also thank you Irishboy for your comments thank you.....I do know if I can get my business back making money I will be able to support the both of us....:) hugs to both of you
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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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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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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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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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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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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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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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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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for how long, though, or how long has it been, Sheenaz? typically Medicare only pays for so long
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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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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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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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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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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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