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My Dad passed away 7 months ago and I brought my mom to my house to stay with my husband and I so she would not be by herself. The plan was not meant to be permanent. 2 weeks in, her own health took a major decline (which was most likely noticed because of “broken heart “” syndrome) and she landed in the hospital with a diagnose of major heart failure in which she ended up having all fingers on both hands (except for thumbs) and all toes on right foot amputated as well as below the knee amputation on right leg. She is not a candidate for OHS and is currently not able to take any medication for her heart due to her declining health. She told me many times that she wanted to come live with me and I told her I would if she was able to move around, but since she requires 24/7 care (bed ridden) that I didn’t think it was a good idea because it would be too much for me as she requires a lot of care. Even the rehab facility told me it would be too much. Long story but she continued to guilt me until I caved. She is on hospice now and living in my home where I am her 24/7 caretaker. I do have someone to help 3 times a week for a few hours each time and that’s helpful, I’m also trying to get more help lined up, but the issue is the way she treats me. She’s so nice and loving to everyone else, but is mostly demanding and expects me to just jump whenever she needs something. It’s only been 4 weeks but I am emotionally drained and feel taken advantage of but also feel guilty for my feelings because of her situation. I have put things on hold including my business that I’ve been trying to get off the group for a year and my husband and I can’t do anything outside the home unless we find someone to stay with her. We can’t even leave the house together at all. I’ve tried to talk to her but she usually just dismisses my concerns and usually says “look at me and what I’ve been through” and I get that and feel terrible that she’s in this situation and I love her so much, but I feel like a prisoner in my own home. I can’t leave unless I coordinate someone to stay with her. My husband is there for me emotionally and I know that part is taking a toll on him, as well as he’s also feeling like a prisoner because we never get to do anything outside the home anymore. I don’t know why, but my mom always says things about me to others like “oh, the food here is not so great” or “I’m not sure I’m gonna get a meal or “she’s mad at me”’ or “I get up at 4am and she doesn’t get up until 7 and I’m starving” I provide all the food she asks for and feed her 3 meals a day including snacks. The things that she said she likes. I bend over backwards to please her, but with this attitude I don’t want to do that anymore and I’m feeling more anger towards her and resentment. I want to be her daughter not just her caretaker and I’ve told her that repeatedly. I’ve been by her side for the past 2 years with other medical things and the past 7 months (after my dad passed) in and out of the hospital many times, visiting at rehab, taking over their financial responsibilities, coordinating transportation and going to every appointment, the list goes on and on and I’m EXHAUSTED and my own life and responsibilities have been neglected, but mostly feeling unloved and like I’m just a caretaker. For the past several years before my dad died he catered to her and did every thing for her - I think she’s just used to being catered to. I have also not really been able to grief my dad (neither has she) and we had to put his celebration of life on hold due to her health. I’m a mess and at the end of my rope. I told her she can stay through the holidays (2.5 more months) but I can’t do this long term and she still puts a guilt trip on me. Why is this so hard and why do I feel so selfish for the way I’m feeling?

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I’m so sorry for your situation . Caregiving is hard .
This is hard on both you and Mom , however Mom is taking it out on you ( her caregiver ) which is not uncommon .

You feel the way you do because Mom is putting guilt trips on you which is not fair . You are not guilty of doing anything wrong . You did not make Mom an old widow , you can’t fix old .

You are not able to provide the care your mother needs . This is not working for a number of reasons , including her behavior . There is nothing wrong with saying you can not provide hands on care.

My personal opinion is that hospice at home is very difficult on the families . Unfortunately , there are less and less hospice facilities . So nursing homes are the other option .

(((Hugs)))
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Reply to waytomisery
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I'm so sorry you are going through this. I cannot even imagine the difficulty. Your mom is definitely taking out her frustrations and anger on you which is very unfair. You are certainly not being selfish at all. As hard as it may be, you may need to put her in a nursing facility. That way you can be daughter versus the caretaker and try to enjoy what time you have left with her. Tell her this...that you want to spend quality time with her and that being a 24/7 nurse to her doesn't really allow you to do this. I am new to caretaking but what I am learning is this has got to be one of the hardest things ever. It definitely makes you feel like a prisoner and that you are losing your life along with the one you love. I don't understand why there are no longer hospice facilities? My Dad died in 2009 and he was in a great facility....it was all hospice and the nurses and staff were so kind and caring. Does anyone know why they don't have these anymore? It is just too much to have family members do this I think. There needs to be a staff of multiple people to give the care needed.
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Reply to Texgal
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Talk to the hospice social worker. Tell them you can no longer care for Mom in your home and that Mom needs to be in a hospice facility or in a nursing home. The hospice social worker can find you a place.

When Mom is transferred tell her the hospice Doctor says she needs to be moved and her care is too much in the home.

I would get things going now and don't wait for the holidays.
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Reply to brandee
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I've heard of people being moved out of the home when they were on home hospice to a facility when it became too much for the family.

My brother moved out of his home to a facility because his wife could not care for him. A former supervisor had a relative that had to be moved.

Let your mom go to a facility and you go back to being a daughter. You gave it a shot, and it's not working.
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Reply to Scampie1
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Be aware, if Mom goes to a facility, Medicare does not pay for room and board. Only the hospice services. Mom will have to pay privately or apply for Medicaid if no money.

You need to have a come to Jesus moment with Mom. Tell her your not Dad. That you have a business to run. She is exhausting you with all her demands. If she does not let up, she is going to need to go to a NH. And that you don't want to do. You want to enjoy her for as long as she has time here. And right now, thats not happening. Leave the room andvlet her think about that.
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Reply to JoAnn29
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Were I you I would go to the Emergency Room with a breakdown.
I am not kidding you here.
I would not be doing this without in facility hospice. I don't believe this is sustainable. I don't understand what you saying about her not qualifying for in facility care at all.
See an Elder Law Attorney to find out how to get her qualified for care.

Meanwhile, if you have to admit yourself for a mental breakdown, do so.
This will get her admitted to care when hubby says he cannot do the care.
This will get social workers at work on admission to in facility care.

As to the whole guilt thing, let's scrape that nonsense on off the plate. You didn't create this and you can't fix this. It is a kind of hubris to think you are a God who has no limits and there is a way you can make this OK. This isn't doable. This isn't OK. Guilt requires that because you are of evil intent you have caused something catastrophic and because you take delight in the catastrophe you refuse to fix it. That isn't you. The G-word you are looking for is GRIEF, and this is a whole massive plateful of grief that cannot be digested.

I don't care at this point how dramatic or how crazed your response must be; this must be taken off you or you could literally die of it.

As to your mother's fury? Yes, LOOK AT HER. Why should any human have to go through this to die. It is criminally cruel. I do not know about right to die laws where you are, but with a hospice 6 month diagnosis I would avail myself of that right today. Your mother rages at you because you are the only safe one to rage at; you won't leave her when she does. By taking on this care you have removed yourself as her daughter and made yourself her caregiver. Caregivers are in charge, make decisions and are able, and therefore they bear the brunt of the fury of someone who has been given in this life more than she can bear.

I wish you mother good medication and a peaceful death; I wish you the knowledge and relief on her death to know you need not fear further suffering and loss for her, and that you need no longer stand witness to this devastating crucible.

I am so sorry. I don't care what lie you need to tell to get into care; chest pain works. Look up symptoms of heart attack. But get to care for yourself. I am afraid for you. And my heart goes out to you more than you can imagine, and to your poor mom. As to your hubby, what a guy. What a man.

I am so sorry.
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Reply to AlvaDeer
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