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My mom lives alone in an apartment. We have hospice coming in but she is getting so bad she can't even get out of bed. I work and Hospice doesn't have enough services to look out for her several times a day. She doesn't want to go into a nursing home and I can't make her. There is no POA.

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Thanks, mylifematters. I know it's hard, but I do think you need to just grit your teeth, plug your ears, and do what is right for you. It sounds like you too have sacrificed much, but at some point you just have to put a stop to it and back off some for your own sanity. At least that's what I am finding out. Of course, easier said than done! But I'm not giving up! :)
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I agree with your opinion, my comment about sacrificing was how bad it is to go through and experience a parent in long term care , especially when they have their intellectual faculties. I would love to only see her 3 days per week, but her constant calls and complaining and requesting things is overwhelming. I see the brain dead ones and they are not capable of asking for anything. I wish that was where my mother was, sad as that is. Her roommates son only comes once a week. She is brain dead. He is lucky.
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RE: mylifematters: Wake up people. If you really care about being a good son or daughter, spouse, family member, you sacrifice your life for this person.

I respectfully disagree. I am just about at this point with my mom. The sole caregiver. No one else except paid helpers in her home. I know if/when I get to this point, I will have NO guilt about an outside placement. I believe God has a life plan for each of us. Personally, I don't believe that for me it is "to sacrifice my life" for my 90-year-old mom, for whom I already have sacrificed many years of my life - basically she wouldn't probably still be here if it wasn't for my sacrifice. As has been said many times, every situation is unique and the solution is rarely clearcut, black and white. I would never advocate sacrificing your life for another unless it is throwing yourself in front of a car to save the life of a child about to be run over or some such thing. Just my opinion.
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One of the nursing homes in my area has a monthly support group meeting. I went a couple of times and met a couple of nice people, but other than relating our own stories (sort of like what I imagine an AA meeting would be like) of caregiving, there weren't any real answers or solutions. And I was told there were more people who had joined earlier, but they found it difficult to get away and drive miles to a support group meeting.
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I know, this whole thing stinks!!! I wish there was a support group in my community that I could join to discuss all of the things we go through. This is a much needed service. How do you start one, anyone know?
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Ilovemom: "What difference does it make?" A lot! Because then the LO's family is left in a quandry!
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Sadly, the country does not care about older people. They seem to be seen by government and business as an inconvenience. That kind of leaves it up to the family to make sure they are being cared for.
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Amen is right! In 5-10 years the need for affordable, decent long term care options will have grown tremendously with the aging of the baby boomers. Right now I know very few people whose parents are in LTC facilities that I can meet with for support or help with navigating through the financial maze of affording the care. I predict there will be many families in crisis deciding who is going to bring a parent into their home and give up their job, life and income. I hope these families have more than one living child because the immense burden of being the only one is crushing. Our federal, state and local leaders need to begin work on this now before it blows up in everyone's faces.
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Amen tothat Jessie!
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Yes, it is much better when they can sit in front of the TV all day and evening in their pajamas while the life of the caregiving child ticks on by year after year. The life of the elder person matters, but so does the life of the caregiving child. It would be different if there was a team of family and friends helping, but it's not the way it is. Each situation is different. Because I stay with my mother doesn't mean I expect anyone else to be able to do the same. And I know there will come a time when I will no longer be enough. I won't feel any guilt if she has to go into long-term care.

I've sometimes considered that family caregivers could actually be doing a disservice to their parent. If a parent was in AL, then they would have incentive to get up and dressed. There would be people their own age about. They wouldn't be sitting in their pajamas in front of a TV all day long, waiting for God.

I do wish these places were more affordable. It is a question that I wish someone would ask the presidential candidates. They talk about war and healthcare, but no one asks about the problems of aging.
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Everything about long term care stinks! Don't let anyone fool you. When you have no choice, just hope your loved one doesn't have their mental faculties anymore, otherwise, you will go through hell if you care enough to go there several times a week, if not everyday. The care is substandard, the food is worse looking and tasting then prison food, and the "residents" are 98% dead. Don't let all the sweet talk deceive you from anyone who comments here. There is 98% suffering from a human perspective in long term care facilities. If everyone could go and hang out and watch for about 4 weeks and watch what goes on and how it smells and how you wonder why people in this state are allowed to live, you would not want a dog there. Believe me I'm living through it. Anyone who challenges this has a rich parent who is paying $10,000 a month for care. the regular bed in a dump cost $237 per day in our state, that's about $7100.00 per month average. Wake up people. If you really care about being a good son or daughter, spouse, family member, you sacrifice your life for this person. Oh and let me give you a straight up observation, pray your loved one has dementia, Alzheimer's if they have to go to long term care because most of those patients don't have a clue how bad it is, but I see it, so don't just see them once a week, cause what goes around, comes around.
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drpoundsign: Okay.
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From my experience, I suggest she have some weekends or weeks at a facility while you take some time for yourself. My disabled husband enjoyed living with the NH schedule, the food, and the company. He even became a caregiver of handicapped companions there. It was a good experience all the way around!
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Sorry. I was initially having trouble posting.
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Try to understand what 'a home' was to your mom when she was growing up - it was where unloved people were warehoused to die - gov't regulations prevent that type of treatment but many of our parents generation still see it that way

When my mom was first driven to the nursing home she was to live in she raised a fuss - within 15 minutes she was saying how nice it was - she still asks to move to 'her own place' - she denies needing help ... legally low vision/blind, diabetic, in wheelchair [acquired brain injury], incontinent etc ... but she thinks she doesn't need help ...dahhhh

When she was there for a few months, she said she loved having 'things to do' & was never bored - now she can't remember when she goes to activities - they keep track of what she participates in & I find she is at more than 1 activity a day - like bingo [number & spacial recognition], music, cookie baking etc

When your mom needs the help, she will not say 'I want to go to a nursing home' as her cognificate abilities will be gone - mom will soon be 91 - with all her problems, she swears she doesn't need help & can live on her own - if I allowed that I could be charged with elder abuse due to abandonment!

I have resolved not to feel guilty when mom asks for something she can't reasonably have - someone said that a person with dementia is a 3 years old that has much experience - I bring a treat to start our visit well - she now associates me with a positive experience rather than negative which is good

We [caretakers] have to stop being the 'child' but assume the parental role but in as gently way as possible - their experience will sometimes resurface but that is to be expected - try to be gentle as possible, but be kind while doing gentle nudging them where they must head to

Your mom might eventually need to go into a nursing home, so prepare yourself - if possible have her go for 'respite' while you are away a few times so that she gets used to situation - I heard of 1 [initially reluctant] person who at end of second time said 'must I go home .. it's so much more fun here'

Change is hard at their age, so reluctance is to be expected & money can be an issue depending where you live - however if you ever think you need to take a short nursing course to cope with the higher nursing skills she needs, then you have reached your limit of personal care & maybe professionally trained people are needed - don't buy into familial guilt that it's 'your duty' - I firmly believe mom has lived longer & better than if I was her only [untrained] caregiver ... think about it long & hard as all who are on this site have done for our loved ones - good luck but remember you are not alone there are hoards of us who have 'been in the trenches' too
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drpoundsign: Ignore that. I meant to say "testing 123?" Who do you think you're talking to?
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I wrote a long monologue above. The point is skilled nursing can be just as unresponsive as any senior care section of any fcility. My friend and her sister home hospiced their Father with the help of an agency. He wanted to die surrounded by family in a home setting. She is glad she and her sister did this for him and sorry for the elderly who go through the trauma of not having a loving family surrounding them at the time of their passing. It isn't possible for everyone but the ideal of knowing of God's love for them through their families loving them has to be a great comfort.
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Drpoundsign, please know that letting your dad go on hospice was one of the kindest things you could do for him. If you had taken him to the hospital and off hospice, they would have been obligated to do things to him to try to keep him alive. Even with my elder pets, I always try to make the distinction between doing something medical for them or to them. If your dad was falling, weak and lethargic after a progressive illness, then hospice was doing things for him to keep him comfortable instead of the invasive procedures medicine would have to do to keep him alive, but not be able to reverse his dying process, merely prolong it.
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Good suggestions by many. Instead of a large facility, you might want to check into a small care home. Hard decision, but I found a small residential home with only 6 residents and 24/7 care. They are licensed by the State. More individualized care and more if a home like atmosphere. Thus iPhone has two residents in Hospice and they come in regularly.
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IMHO my mother would be a LOT happier living in an ALF. She flat out refuses. She lives with my brother's family. She is relatively independent, other than being unable to clean at all, or do much more than dress herself and do her laundry (with help). She NEEDS a cleaning service, but won't pay for one and won't allow me to clean any longer ( I throw EVERYTHING away, she says.) She has had many falls and we are just kind of waiting for the one that does her in. She can't go many places. can't walk more than a few feet and lives for her 2 Bingo days. In an ALF she'd be so much more likely to make friends and have more activities (and she'd be safer!) but even though it is completely financially doable---she refuses. Frustrating, to say the least. I do what I can, nag the 3 vacant sibs to PLEASE at least call her once a month and let it go.
I really hope I don't live past my sell by date, or I am cognizant enough of my own infirmities to place MYSELF somewhere.
End of the day--you CAN'T make your mom do anything. You'll drive yourself crazy trying and harm the relationship in the process.
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I agree with Pam, get her into a hospice hospital for her final days.
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Tell your Mom that right now she needs a bit more help than you can give her at home.
Tell her that you want someone to help care for her that will do a good job and that the best place for her would be in a"Care Center" (maybe don't call it a nursing home since she has what I consider outdated feeling about many of them).
But when she is better and you can care for her she can come home.
Not an out and out lie since I am sure if she got better you would bring her home.
Hospice Nurse and Social Worker can help explain this to her.
Your other option.....
The funds that would be used to care for her in a facility is it possible that they could be used to get her care in the house for the hours you can not care for her. Either over nights if that is when she needs and you need more help or during the day. YOu could get a good caregiver for less than the cost of a Nursing Home. And she will feel more comfortable.
There is a trade off...you have a "stranger" in your house and you do need to make sure that you do background checks if you hire privately. Going through an agency is easier but a bit more expensive.
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To every caregiver who thinks you could have or should have done more for your parent, spouse, or whoever the elderly patient in your life is: They may not wish you would do more than you can for them. I'm 85 and have been a caregiver to my mother and my three husbands who predeceased me. (My father died suddenly.) When my time comes, I don't want any of my children to "do more." Right now I'm living comfortably in an independent living facility of my choice, grateful that my mind is intact, and that I can enjoy my memories of a life well lived.
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My Mother will be 99 this month. She was forced into Personal Care from Independent Living. It was on a pre-text. Background: Mother was injured in a forced "Care Program" when she was having a medical problem against my stated wishes and her Doctors advice. The first thing that happened, she was injured in physical therapy. She passed out at night, went to the Emergency Room in a nearby hospital, fell out of bed in the Observation Room, broke her nose and was bruised. Mother returned to the facility and was placed in the Health Care Unit. She had been walking hundreds of yards a day with only a cane before she was injured and otherwise could do everything for herself. She couldn't walk on her own after the injuries were sustained. She was given P.T. and ordered a wheel chair. She got sick and was refused medical treatment in the health care center where developed pnemonia. We called 911 to get her out of there. From the Hospital she was sent back to her I.L. apartment. I stayed with Mom 24 x 7 and nursed her back to health. After a few months Mother could walk around the apartment with her cane, 200 yards in her walker and we used the wheel chair for longer distances.
We finally arranged for a nurses aid to watch her while I went to a Dr.'s appointment. Mother's bed was dry when I left. I found out 1 month later that it was dry when the first Nurses Aid left. The second Nurses Aid assigned that morning and the supervisor reported that I left Mother in a wet bed. Mother did not have an incontinence problem. It was a lie to give an excuse to tell me to take Mother to the Emergency Room at the nearby hospital or to the facility Health Care Center or the facility would call the police on me. The Emergency Room Dr was angry and put it in the report that there was no reason to send Mother to the Emergency Room or to put her in the Health Care Center and no reason why Mother could not go back to her Independent Living Apartment. My brother and cousin who have little to no communication with my Mother backed the facility that Mother should be in Personal Care. I did not sign the admission contract when the facility refused to give me a copy to review by myself or to take to an attorney. The facility Administrator sent it to my brother who signed it against my advice. I am the Health Care Power of Attorney and still cannot get a copy of the contract. It is 2 1/2 months later, Mother has not got back to 200 yards in the walker. She gets 50 yards, She would sleep most of the day every day if she could. When she sleeps most of the time she looses muscle tone. There are certain things that motivate her to get out of bed. She likes to sing gospel songs and sing old time songs from a song book, ea at once a week planned activity. She likes being with the ladies in the dining room for meals but often wants to leave without eating. The food is often pretty bad. When this happens, we bring in food or go out to eat which is several times a week. She likes to go for rides listening to Frank Sinatra tapes or to go to the pet groomers or vets with the cat. I am there every day. The facility snaps out at the height of Mother's exurberance and brings her down to where she wants to get back in bed and she quits eating time and again. Each time this happens it is harder and longer until we can get her up and active again. For example, a male friend of hers in Independent Living asked her and myself for dinner. It is in the resident handbook that this is permitted. Mother and I had been to dinner with him the previous month and mother paid for herself and myself. As she was getting dressed, excited, the I.L. Activities Director and the Nurses Aid supervisor who made the false accusation that I left Mother in a wet bed, pounded on Mother's door and they were both yelling at us that the director of Personal Care called them that we were not permitted to go to dinner with Mother's friend in I.L., that we were living it up to much, going out to much, etc., etc., and they accused us of mooching off of this gentlemen. That our activities were going to be curtailed. The facility wants her lying in bed, available for their convenience and they have even yelled at her when she and I have gone out of her apartment in the walker. When I was taking with her Physical Therapist at an outside facility and they suggested it. To sum it up, in my experience and from contacts whose parents are in different facilities, these facilities have nothing to loose when your parent dies, they just fill their space with the"next." They don't feel your loss. To the above, answer, don't feel guilty. I have seen that no matter how much a loved one protects and cares for their parent, spouse, child,or any loved one there is often that creeping guilt that you could have done more when they pass. Grief counseling or group can help one get over that. You did your best.
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You know what makes it the hardest? A husband who has perfect parents at 87 years old and 3 doting, rich brothers and sisters in the town where his parents live. My husband has been a non -sympathetic human being to his wife who has lost every family member and is left with the sole responsibility of loving and caring for a parent while still being expected to love his family and his children and grandchildren while I have nothing left. I have one child, a daughter who at 27 has not gotten her own life right where I can feel something positive, good. I have one blood relative, that is it and I am her mother. I want to be here in this life for her, like I have been for my mother who was never there for me since I was 17. I wish that I adored my mother. It would make this hell so much more bearable.
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What difference does it make? If she gets the care here or there, it shouldn't matter, a few pictures, a few belongings, and loved ones to visit.... There are options, I pulled my mom out of the house, ,took her to a board and care, dropped her off...it was hard, but I had no choice.....I would take her out and I love her...But she was not happy in my house, and I wasn't sleeping at her house, and that would not have ended up well for any of us or my daughter....so....life takes another path....she is silent now, doesn't talk which is really sad, and I see her every other day... and other days I see my aunt who is in the same situation but another board and care....
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I am sorry your mom is fighting you. I tell my daughter I hope I don't put her in this predicament. It may happen, I hope I remember not to do this to her...I hope I have arrangements put in order to help her make that move if I am too stubborn....Supposedly Home is where the heart is, but your heart is always with you..my friend mom stayed in her home until the end..basically until 911 took her to hospital.
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You aren't eqiipped to handle this. Even if you were a trained medical professional, you wouldn't perhaps be "on top of it." Think trained doctors and nurses. They have to update their skill set routinely.
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My mother will not die in in a year or two, she looks like with 24 hour waiting on her hand and foot that her organs will survive many years. She doesn't have Alzheimer's or cancer. She has come back to life 20 times in 18 years. I am dying from her living. She won't die, I guess, till I'm dead.
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I feel when the patient has dementia and starts declining, is sleeping much more, and is very old, oncoming death is inevitable and a BLESSING. My mother was in a nursing home for two years at the end of her life and though she received good care, it was an unpleasant way, an unpleasant place, to live. If you could call it living! It was just existing. I wouldn't have wanted her roused and treated and kept on going no matter what. She just went to bed and slept for a day or two, she had a slight fever, and labored breathing, going downhill. They gave her a little morphine, and she died peacefully in her sleep. Death was, is, a blessing when we reach that point.
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