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My mom is 101, and suffers from chronic pain due to osteoporosis and arthritis. I am her only caregiver, and she lives in my home.
She is only able to sit/lay in one position because her spine is twisted so badly. Her doctor says that hospice care is available for someone in her situation. Right now I am able to move her by wheelchair from her bed to a chair to help relieve pressure on her spine, butt, and ribs. She is also still able to feed herself, and has no incontinence issues, hence no adult underwear is needed. She is able to use her bedside commode with my help. She does not have alzheimers/dementia, so knows the time will come when she won't be able to function as before, and I will no longer be able to help her as I have.
My fear is that if hospice becomes involved, it will just speed up her decline, and I hate to take that final step. I also understand the necessity of having help to address issues that I can not deal with, and to give my mom the care she needs and deserves.
Any thoughts or comments would be appreciated!

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kathyy1--
I am so sorry for your loss---and DO NOT beat yourself up over giving mom morphine to ease her pain in her last days. I am sure she is happier being out of pain. I gave my sweet, sweet daddy as much as he asked for. Not one day have I questioned the right or wrong of my choice. What you say were normal parts of the dying process....hard as it is to watch, would you have wanted her to have one more hour or day of that kind of pain? Take time to grieve and don't make yourself sick over choosing to relieve her pain. Hospice people are well versed in knowing just what to do. I have had nothing but the utmost respect for their help.
I am sorry you are hurting.
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kathyy1: You know what, don't beat yourself up over your mom's passing.
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kathyy1: I am so sorry for your loss.
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Alifay55: As you never responded nor answered my question, "is she saved?" By that I meant has she accepted Christ as her personal savior? That is the only way to heaven.
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RIP MOM I'm sorry and I love you
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yes MIL was released home with hospice due to pain management because of cancer in the brain. She passed away 7-3-2016. Although I questioned the amount and the morphine they insisted the dose was ok and every 2 hours was keeping her out of pain. 2 days later she died, Right now I am feeling like I killed her and should have not given the amount the NURSE told me to give her and in fact ADDED Haldol because she was showing signs of stress and or seizures.
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Call Hospice.
They will NOT speed decline.
They will provide medications to help relieve pain and discomfort.
They will provide supplies
They will provide a hospital bed if needed, lifts if needed, shower chair, commode if needed.
What they will require is that medications for the "terminal" illness be discontinued. Example if a cancer patient is getting chemo, that needs to be discontinued however they will not require a diabetic to give up insulin.
What you will find is that the person admitted to hospice will be more comfortable, it is possible that 2 things may happen.
The person my seem to get better for a while, this is due to the increased attention and help provided by hospice.
Once the person is relaxed and out of pain they can comfortably pass. So it may seem like death is hastened but it is the relaxed, final stage. Think of it this way if a person has a great deal of difficulty breathing and drugs are given to relax muscles to breathing is more easily accomplished so a good sound sleep is finally able to take place. It may seem like "they are drugged" but it is really a phase of the body shutting down. The body is reserving energy to do as few functions as possible to keep the brain and core going. So a person will sleep more and with the help of medications muscles can relax so limbs are not tense, breathing is easier.
I urge you if you have any questions about Hospice call them and ask if they will come and evaluate your Mom. They can explain what they do and what they do not do.
And most important you can always request that Hospice withdraw. So if you are not pleased with the care or if you have reservations you can drop Hospice at any time.
As you can see I LOVE my Hospice team and I would not be able to do this journey without their love, care and support.
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Virginia55: When the body starts to shut down, the person loses any appetite. Then if they are fed it actually causes more pain and suffering because the body is no longer processing food. It is so hard for families to understand that because we have been taught that food makes one better. However, in the dying process that is not true---it does just the opposite. If you all did feed her, that could have accounted for her screaming. Depending on what her disease was, it is very appropriate to medicate a person up to the point of death---its better than them writhing in pain.. It sounds like she needed that and her physician would have been the one to prescribe the medication, not Hospice. Hospice was only following the doctor's orders. I am sorry your experience was so awful, but to be blunt, your mom's dying journey was hers and it was about what she needed, not what you wanted or would make you more comfortable. That's another thing families don't understand either. Watching a loved one die is the hardest thing you'll ever have to do and sometimes you have to watch and stand by and allow the process to happen, even if it makes you uncomfortable or unhappy. You did nothing to feel guilty about. You let your mom have her journey and it may have been rough, but sometimes the struggle is emotional or spiritual, and not physical at all. As a Hospice Chaplain, I dealt with those who were struggling to die peacefully, but had long-time spiritual issues about their faith, or lack of. One thing I can guarantee is that Hospice did not kill your mom. We have too many safeguards in place for that to happen---believe me.
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Virginia 55 I'm with you I went through hospice exactly the way you did I wish my brothers and sisters would have helped me with my Dad it's very stressful trying to do what is right and you want to trust and believe what they are doing .
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My advice to Alifay55 is "no " do not put your mother under Hospice Care. If I could turn time back I would never have placed my mother under there care unless she was truly at the end of her life. I believe they killed my mother with there medication and from her not having food or water for 7 days before she died. I should have done my homework and researched Hospice more. I truly felt I was doing the right thing by agreeing to "comfort" care as they called it. I had no idea that comfort meant basically medicating until you do not wake up. I should have stopped the process but was told she was not hungry or thirsty. I should have gotten second opinions as to why my mother was screaming. There are so many things that I should have done and did not. Now I live with the guilt of putting her on Hospice. I should have stopped the process. I was so stressed out that I was not aware of what was going to happen. I was not thinking. Now that I am thinking , it's too late for her and it is all my fault, not Hospice"s.
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Alifay55: Is your mother saved? If not, I would go to your church pastor and ask that to be done.
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Thank you all for your responses! I appreciate your viewpoints and suggestions very much.

Just some background information, my sister was in hospice last year for 4 months after her diagnosis of pancreatic cancer. I cared for her myself, and I had to administer liquid morphine to her as her pain increased; eventually it was around the clock during her last week of life. She got to the point she couldn't swallow water (this was after she needed morphine continually to control her pain), and it was so hard watching her die under these conditions. Hospice was always there when I needed them, and they provided great support, but I was not emotionally prepared for the toll it took on me and my poor mom.

My fear is that the same thing that happened with my sister will happen to my mom when she begins to need stronger medication for her pain. I do not think I can bear to see my mom suffer in such a way. I hope she dies peacefully in her sleep before needing to be kept on pain meds to keep her comfortable.
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Alifay55: Let your centenarian have as many pain meds as she needs! Good grief...really??
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At 101, you must be ready to see you poor suffering mother go---we had daddy on hospice for pain alone, I'm sure he was "in hospice care" for more than 6 months. Pain is so debilitating and at age 101, are your worried about addiction? I hope not! Keep mom as comfortable as possible with whatever you can. Dad's last few days consisted of morphine drops around the clock and I personally am grateful he died peacefully. Hospice is very respectful of the patient's and family's wishes. That was my experience. Keep your sweet mom out of pain, please!
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Talk to your mom and decide what you want to do together. Hospice can be a great help, but she may not qualify. Remember you still have choices even if she is on hospice. They do give a lot of pain meds for comfort but you are not forced to give them. Find out everything and then make a choice. If she is on hospice you are not suppose to call 911 if something happens instead you call the hospice nurse. If you do call 911 the you will have to pay for the ambulance. Hospice is not an enemy they are another resource. You need to get all the information and decide together. Only you two can decide if this is what you need.
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Alifay55: Hospice is end of life care.
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Many people live longer once placed onto hospice because the quality of their life improves. There are different types of hospice with some providing what is known as "transition" care where the person is not quite ready for hospice. When choosing a hospice, look for one that works for care as a non-profit as opposed to a for-profit. Ask the different hospice agencies in your area what their patient to nurse ratio is as you want one with the lowest, which typically means each nurse has far more time to spend with their patients. Hospice and transition care can help you as a caregiver, as well.
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Dragonbait-- The person coming into Hospice needs a diagnosis from a doctor of 6 months or less, that is a national requirement, but once someone is in and they continue to qualify, they can be in as long as they live. We had one patient who was in for 3 years because she still qualified.

GrandmaLynn5-- Perhaps your mom is on Palliative Care which is also offered by local Hospices. You don't need a terminal diagnosis for that. Also, no Hospice should be religiously based. They all have Chaplains, but we are trained to be ecumenical, interfaith, or even non-faith.

Anonymous44- Hospice in NO WAY hastens a person's death, nor do we push for harsh drugs. The purpose of Hospice is to make a person as comfortable as possible such as providing a hospital bed or wheelchair or bedside potty or diapers or a CNA to help bath the patient or do some minor house cleaning or make a meal Hospice does nothing the patient or family does not want. I am sorry you seem to have had a bad experience with Hospice, but many others have not. It has helped them!
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I agree with Sunny5, hospice is not for everyone. My experience with hospice for Mom was the same. I would not suggest these people because they will have you believing your love one needs harsh drugs to make her comfortable and it will shorten her life. Enjoy your Mom as best you can without "Hospice" and ask her what she would like, after "she is in her right mind" and deserves that RESPECT. NO HOSPICE unless you're ready to lose the most PRECIOUS person in the universe. God Bless U and MOM
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My mother started on hospice care about two months ago. She is 97 and not terminally ill. Her age and her mobility issues along with some pain issues are why I brought them in. The need for hospice will be reviewed every 60 days, as I understand it, and continuation is routinely granted. It covers prescription medications and medical equipment. So she now has a hospital bed, which she really likes. She and I discussed this before the decision was made, and it was done with the idea that if she wanted to withdraw at any time, she could. She is living in a senior complex and gets additional aid from a care company. Hospice is covered by Medicare. If you decide to use hospice services, you will find there are several companies out there. You can probably get a list from your local Area Agency on Aging. Interview them and choose the one that seems like the right fit for your mother. My mother is not a religious person and a religious based hospice company would not have worked for her. Hope this helps.
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Hospice is not limited to people thought to have "only six months to live." My husband has been in hospice care for several months now. He has a progressive neurological disorder for which there is no treatment other than medication that may or may not alleviate some symptoms. There is no recovery possible. The goal is to keep him comfortable. The way in which hospice care might "hasten the end of life" is that they cannot intervene to save his life. This is consistent with the directive he signed several years ago which says, in the event of a terminal or irreversible condition, to keep him comfortable and allow him to die as gently as possible. Sometimes, when the facility sends him to the ER to be stitched up after a fall, the hospital will admit him. Then we have to sign him out of hospice so Medicare will pay and sign him back in when he gets out.
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Hospice would only come in if your mom had a terminal diagnosis and was told by a physician that she had 6 months or less to live. Medicare, who pays the bulk of hospice care, has gotten very strict about that. She probably could qualify for Palliative Care without a 6-month diagnosis and she would receive much the same care except for having her medications covered by Medicare. However, she would still not get 24/7 care. You would still have to do the bulk of her care.

I just want to say, God Bless your mom---101 and still alert and oriented. She must be an amazing woman. Talk with her and find out what she wants. She seems to be aware of the situation, so let her tell you what she wants. You sound pretty amazing yourself, and a very loving child. Good luck on finding what you both desire and need.
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Hospice care in my experience can greatly enhance Quality of life, pays for some Rx and supplies, provides good symptom control. It does Not need to mean a shorter life.
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ff: Alifay55 says in her post that "her doctor says that hospice care is available for someone in her situation".

Alifay55, read the previous two posts and think them over. They're both quite correct; in general, hospice is only called in if the patient has abt 6 months to live, I think -- but many ppl go in and out of hospice once they become more comfortable, and can repeat that cycle . The "few months" can be longer or shorter and, depending on the patient. I wish I'd been able to persuade my mum of that fact. She would have been so much more comfortable.
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When hospice came into my dad's life everything changed I told them i don't want him on a bunch of drugs they told me he didn't need any of his vitamins anymore and that they asked my dad what he wanted they told me they are there to make him feel comfortable and it was up to him they were giving him too much I wished he never had hospice come in 89 years old never needed drugs before they came to help him he declined very guick
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Alifay55, regarding Hospice, Hospice is only called upon if a doctor says the patient has only a few months to live... that doesn't sound like the case for your Mom.

I know it came be difficult to care for an elder when you yourself are probably a senior citizen yourself. We no longer have the energy or the strength to care for our parents like we did in the past. Thus, Mom might need a paid caregiver to help her out. Or Mom could move to a continuing care facility where she would get around the clock care.

Hospice does not give 24-hour care. Hospice will send out nurse/aide once or twice a week to check in on the patient, take blood pressure readings, etc. to report back to the Hospice physician. There might be an Aide who can come in to help bathe Mom. There might be a volunteer who comes in just to sit and chat with Mom. You will still need to do the bulk of the care, unless you hire a caregiver.
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I think it's a question of what your mom wants to happen. At that age, with all her pain is there any quality of life? Sometimes people just get tired of the battle and want to let go.

Hospice does not necessarily speed up death but it will make her more comfortable if the end is near or she is consciously ready to give up the fight, quit eating etc.

If she's of sound mind, talk to her about hospice. I'm guessing that in any event you are going to need help of some sort soon.
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