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My mom is 83, in nursing home since December 2018 with Chronic Heart Failure (CHF), moderate dementia and COPD.


Last week she had a bad few days with declining health, weakness and confusion. We were told to call in hospice as it was time to look into the bridge to hospice program.


After her evaluation, which happened after being treated for a touch of pneumonia in which she was doing much better, it was recommended that she go into full/regular hospice.


We asked lots of questions and agreed since the “professionals” deemed this the best choice.


Yesterday hospice called and said they wanted to stop all blood testing on mom. This means if she gets a touch of pneumonia again it will not be treated but allowed to progress while she is doped up, until it kills her. They said if she were to fall and break a bone they would not set it, just drug her for the pain... I am having real moral issues with this.


My fellow caregivers and daughters and sons, is this normal? Am I supposed to be ok with this? I feel like taking away basic medical care is very close to assisted suicide or even murder. Am I wrong?


I appreciate any advice or insight you all have. I know there is a ton of wisdom here and I’ve always counted on you all in the past so thanks in advance.


(FYI, she is on Medicaid if that matters)

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So, it sounds to me as though you are confident that your mother would still want medical treatment for what ails her.

If you are confident that your mother is not ready to stop fighting, then I would turn down hospice. You are under no obligation to accept hospice services.

Has anyone talked about palliative care? My mom, similarly, was in a NH with moderate dementia, CHF. My brother, who was her POA, was not ready to sign on to hospice when mom first became eligible, again, similarly, after a bout of pneumonia that sent her to the hospital, which in turn increased her confusion.

We discussed with the NH the fact that we no longer wanted her sent to the hospital for treatment. They treated several bouts of pneumonia and a couple of UTI's "in house". Eventually, she fell and HAD to be sent for xrays; her wrist was broken and set; she declined quickly and we accepted Hospice services at that point. It became clear that mom had no fight left in her, she wasn't going to get out of bed and developed pneumonia.
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NeedHelpWithMom May 9, 2019
I feel it’s best if we respect our loved ones desires. You were wise to see that she didn’t have any fight left and opted not to make decisions for her. Your mom was blessed to have you.

Her picture that you had posted when I first started this forum made me smile. It was a lovely photo of her.
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I'm not sure how different Hospice programs vary, but, I never heard anything like what you describe. Granted, regular blood testing may not be conducted, but, falls are a different matter. Some medications are discontinued, but, not those that relate to comfort and so my LO takes antibiotics if she gets a UTI. As far as a fall, fracture and surgery, it would depend on the circumstances and if surgery was deemed necessary. Some patients are not strong enough to undergo surgery nor able to recover, even if they did survive.

I think you can stop Hospice at any time, if you wish.

My LO is on regular Hospice and I feel quite comfortable with their policy,
mainly due to the fact that my LO was very clear in her wishes for how she wanted things to be done, under these circumstances. Her mother had a similar experience and I was with them both as they made decisions. She made me promise that I would make sure that's how she wanted things to be. So, when someone is ill and cannot recover, not to continue with measures to lengthen their days. But, to keep her as comfortable and pain free as possible.

Of course, it's a personal decision. Does your mother have an Advanced Medical Directive or has she told you what she would want?

Also, it's my understanding that Medicare pays or all Hospice care expenses.
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Kathycan313 May 9, 2019
Thank you so much for sharing your experience. I wish mom would talk to us but for years anytime we e tried to find out what she wants she would just shut down.
We will talk to her soon and see if she understands enough to make a decision on her care. Blessings to you and your family.
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How you and your mother might feel about this perhaps depends on her level of ‘declining health, weakness and confusion’. My brother-in-law was in the final couple of months of cancer when he fell and broke his leg, earlier this year. He too was treated for pain but the bone was not set. The reason was that the break was not likely to heal before his death, that setting would not make him mobile to get out of bed, and that the cast would make bed treatment more difficult. He was furious to have broken his leg and would much have preferred to continue to be able to get out of bed, but on balance this was the best option. Pneumonia, your other example, used to be called ‘the old man’s friend’ because it was a relatively quick and kind death. My first mother-in-law actually wanted this rather than going to a nursing home – she had had pneumonia in her early 90s after a walk on the beach when she got too cold, and said that if she was fading she would like it to happen again and not call the doctor. I have been sorry for years that it didn’t work out that way, and she lived till three months short of 100 unable to talk, feed or toilet herself, exactly what she didn’t want.

For me, your examples are not close to ‘assisted suicide or even murder’, and I don’t think that basic medical care always means keeping people alive. We are all going to die, and prolonging life without quality is not what most people would choose. The Bible doesn’t deal with this, but then when it was written there were no options and death was ‘God’s will’. It still is. Your mother is only 83, and perhaps the issue is whether you and she feel that she will have happy years left to live if her medical problems receive the maximum possible treatment. Best wishes at a very difficult time.
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NeedHelpWithMom May 9, 2019
Thanks for sharing this experience with us. Helps to understand how to evaluate the situation. Can be confusing and difficult to decide what is best.
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The answer is not the same for everyone.

A few months ago, my mother's confusion seemed to get worse, and she seemed very dizzy so we took her to her PCP. They recommended checking for a UTI due to the dizziness, but set us up with a hospice consult.

In my mother's situation, withdrawing renal dialysis would end her life quite suddenly. They said they could not stop treating the heart condition without also stopping the dialysis. They could try to get her qualified with the COPD, but in that case, she could no longer be treated for anything respiratory. Not even antibiotics to treat bronchitis to prevent pneumonia. So they CAN qualify and stop treating just one condition, and you have the choice about what that is and what it looks like.

You can also decline their services for the time being.

We asked for some time to think about it, and the hospice office called TWICE A DAY until I told them to stop calling, that I felt they were pressuring us into something we were not ready for.

Mom's confusion went away with her UTI antibiotics, and she has proceeded to get stronger every since.

When the time comes, we will welcome their services. But it will have to be when we are ready, and she is able to give her consent.
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NeedHelpWithMom May 9, 2019
Wow, gets confusing doesn’t it? I think you did the right thing by following your heart and logical thinking. If you aren’t comfortable with the advice that was given then I feel like you made the right decision.
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You don't need to put her on Hospice if you don't feel it's right at this time and you both want her to continue to receive medical treatments. When you are ready for Hospice, I suggest you interview a few Hospice organizations to find one that will be the best fit for you both.
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Kathycan313 May 9, 2019
Thanks so much for your comment. Until I posted on here I didn’t realize there were options in hospice companies. We are going to talk to her and see if she understands enough to make the decision herself. I’m also planning on a meeting with hospice to discuss our concerns.
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Are you able to discuss preferred end of life treatment with your mom?  It sounds like hospice may be premature - how does she feel about this?  What qualifies as basic medical treatment could differ very much person to person - setting a child's broken leg would be obvious, but with a person very close to death might be just a lot of pain and trouble for no real benefit.  My grandmother developed pneumonia in the last stages of lung cancer.  The only point of treating the pneumonia would have been to prolong her agony - basically to torture her.  How is that moral?
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Kathycan313 May 9, 2019
Thanks for your comments it is so helpful to learn from others experience. We are going to talk to mom and decided how much she understands and ask her what she wants. We will also be meeting with hospice to discuss our concerns. It really does become an individual decision or at least a family decision. Just so you know, after 2 days on antibiotics my mom was Feeling better, looking better, talking and joking and the treatment was not prolonging any agony in any way.
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I am not an expert on hospice care. My brother received hospice care and we were pleased in every way. He was dying from HepC and there was no chance of recovery. They made sure he was comfortable in his last days. The social worker was a big help for the family along with the chaplain.

Awhile back I did attend an ‘end of life’ seminar at my church. The primary topic was hospice. It was stressed that not all hospice programs are the same. Some are better than others.

The other topic that was discussed was to have a living will in place so there would not be any issues as far as what the patient truly desires. Also HIPPA laws will prevent families from making decisions. The patient has to make these choices while they are able to.

Does anyone in your family have medical power power of attorney to decide in case your mom isn’t able to make those decisions?

I would check into other hospice companies if you still want to be a part of hospice or check into palliative care as well. The other option is to drop hospice for the time being, but do find out if and when it could be picked up again and if it is easy for her to rejoin because you want her to be comfortable when her time comes that she needs assistance.

Hospice nurses are pretty good at seeing signs. They were dead on with my brother. I thought maybe he was going to live a bit longer and they kept saying that he was near death and indeed he did die shortly after they predicted.

I do think you are doing the right thing by not agreeing to something that you are not comfortable with. I’d question it too.

It’s so hard to deal with all of this. I wish you the best. Hugs!
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Kathycan313 May 9, 2019
Thanks so much for sharing your experience and I’m so sorry for ur loss. We are going to talk to mom and see if she understands enough to tell us what she wants as well as meeting with the hospice staff to discuss our concerns. I didn’t realize there were different companies to chose from we called one referred to us by nursing home. That is something for us to consider. Such a difficult time for everyone for sure.
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Your mother is very ill. She has congestive heart failure. CHF alone can cause her pain in her chest, coughing that can be draining and painful, total body fatigue because she's not getting enough oxygenated blood, difficulty breathing especially at night or when lying down and so her sleep is not good quality sleep anymore, and probably other symptoms that would be difficult for her to manage even without dementia and COPD.

Does she have any fight left in her? Are you looking at it from a quality of life or quantity of life perspective? Intensive medical care is about quantity of life. Palliative care and hospice are about quality of life. Neither is immoral. Giving someone a good death, which is the actual (and unpoliticized) definition of euthanasia, is kind and humane.

And in frail elderly, there is no such thing as a "touch of pneumonia". Pneumonia is very serious and it is adding to her frailty. If you are part of a religious congregation, perhaps share your concerns with a trusted spiritual advisor.
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Kathycan313 May 9, 2019
Thank you for your input. Mom does still have some fight left. She rarely coughs and doesn’t say she has any pain other than itching skin from allergies.
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You have named 3 co morbidities in dementia. Look up the FAST test used in hospice.

I get where you are. We put our mom on hospice last week. She is getting more care and more services. Death is a part of life.
I know you know this. It is hard. But for us, it was the right thing to do.

Hard because it was realizing we are nearing an end. But it helps us not feel so helpless. When that end is, not sure. But less than 6 mos. Way less.

Our mom would not want this way of living for herself. Hospitalizing can be traumatic, increase dementia symptoms, increase their exposure to other things.

Maybe talk to several hospices. Look up obits in your major daily papers and see who most frequently used.

No one is going to be Lazarus. But coming to terms with that reality is hard.

FAST is Functional ASSESSMENT STAGING TEST.

Putting our mom on hospice was a good direction for us. Best to you.

ETA. Our mom has a DNR, DNI, NO FEEDING TUBE advanced directive. No meds will be administered until necessary. They get to point where they cannot articulate they are in pain. Our mom has severely declined in last 3 week's. No longer able to walk. Self transfer. Is now bowel and bladder incontinent. Stopped eating and drinking. Stopped speaking. Our mom is 93. Has CHD, HPN. I asked oxygen be given. I don't want her struggling to breathe. She has a nurse see her almost daily, an aide too. Dr. Sees weekly. Chaplain too.
She has a wonderful team. And we get phone calls each time with eyes on observations.

We are very pleased.
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Kathycan313 May 9, 2019
Thank you so much for sharing your experience. I’m happy you have found a team you trust. My mom is not in pain other than itching from allergies and dry skin. My mom does have a living will which refuses feeding tube and dnr. We are going to talk to her tomorrow and see if she understands enough to tell us what she wants. We are also meeting with hospice to discuss our concerns. It’s such a difficult time for us all blessings to u and ur family too.
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Op, one more thing articulated to me by my mom, some 5 years ago. They are not afraid of dying. They are afraid of the process. Hospice takes that fear away.

Take care of yourself.
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Kathycan313 May 9, 2019
thank you, such good knowledge and advice I appreciate it.
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Do you realize pneumonia causes the symtoms you described. If you don't think she is ready for Hospice then take her off. Let her get stronger and the pneumonia cleared up. Then make ur decision. Mom will get worse with her problems. There will come a time when you will knowc "its time". She will need the comfort that Hospice gives, it just not be now.
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Kathycan313 May 9, 2019
Yes, I think you are right. We are going to talk to mom and meet with hospice to determine future treatments. We know her days are numbered and it’s difficult for all of us. Thanks so much for your encouraging words.
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Op, many people wait until loved one is in active dying phase. And their experiences are shaped by.

Dont wait til that point. My HR director waited until her mom had two weeks. Do it MUCH sooner than that.

When people are bedfast or can't speak, you don't they are not in pain. When you can't reposition yourself due to dementia, you remain in one position. And you hurt. You may develop bed sores. And when you have arthritis, you hurt. And when You cant move, you hurt more.

Our hospice aide makes sure our mom in clean clothes. Our mom no longer will take a bath and it is a spa bath, something she loves. But the aide can convince to take shower if not daily, every other day. Washes and dries hair. Puts lotion on.

My sib and I are thrilled. Relieved. Thankful. So thankful.
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Kathycan313 May 9, 2019
Thank you for commenting. I’m glad you and siblings have peace with your mothers care. It’s a difficult decision for all of us and we definitely don’t want her to suffer but she says she’s not in any pain other than itching from allergies.
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The real question is what is her prognosis?

Is there any chance that she will improve or is it a downward spiral?

My 52 year old sister went on hospice with the intention of getting better and going home. She was never doped up, she could refuse any and all medications on a daily bases. We were also informed that at any point she wanted to pursue medical treatment she could call 911 and be transported to the hospital and released from hospice.

She died, but hospice didn't kill her. The cancer that was all through her body did. She was well cared for during her final weeks and always in complete control.

If you feel like you are not in agreement with the hospices plan then interview others, you have that right.

I would think that a family member should be present to ensure that she is not being administered drugs she doesn't want.

This is a very hard time for anyone, please talk to someone that can help you understand that hospice doesn't murder people. I would personally feel tortured if someone was taking blood from me every day, it is traumatic every time I have to be stuck with a needle.

Hugs!
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Kathycan313 May 9, 2019
Thank you for your advice and I’m sorry for your loss.
We are going to try to talk to mom and if she seems to understand, we will do what she wants. They are not taking blood every day, just when they notice a decline and suspect issues.
No matter what we decide we know she won’t be with us much longer. It’s a hard thing for all of us.
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Op I forgot something. We told hospice not to use term hospice. They came up with " we are a private nursing staff your daughters wanted for you"-- that is why aide is successful when staff of MC is not.

My mom thinks she is bees knees. And that's ok.
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NeedHelpWithMom May 10, 2019
What a smart way to word it, Segoline!
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I think you got some great advice here. I am sure your head is spinning with so many questions and with so much information.

As NYDaughter stated "there is no such thing as a 'touch of pneumonia' in the elderly." Pneumonia is deadly to children and seniors for a reason and the reason is because their immune system is not strong enough to fight the bacteria off. And your mom has poor circulation because of the CHF, which it makes it difficult to get oxygenated blood through her body. In fact, your mom's heart is beating harder to pump the oxygenated blood through her body. I am sure her lungs have been damage by the COPD, which it is probably making it harder for her to take in oxygen. Not to mention the pain she may be in. Does this mean the end?

What does your mom want? Do you feel that she has more fight in her? Does she want to fight?

Here is a thought, you could have mom take antibiotics for 7 days if that is what she wants! If she could have quality of life. If she gettes a litter better then go from there. However, your mom will still be ill with CHF & COPD. Giving her antibiotics will only give her a little tiny bit of time. I hope you understand what I am telling you. Just take one step at a time.

You will never feel comfortable with the idea of Hospices. No one really does! Hospice is for the "end of life care." Hospice is a gift to give our LO. It was the best thing that my mother and I could do for my dad. He had cancer and he got to go peacefully thanks to Hospice.

I am sorry that you are going through this.

Just remember we are all owe a death and think about what is best for your mom as I am sure you are. We use Hospice to show our LO that we love them so much that we don't want them to suffer. Take your time and think things through.


Hugs!!!
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Some great responses for you here. I would agree with you to talk with your mother and perhaps be prepared with many different ways to ask the same question to truly ascertain what she may want. I've been through hospice with 2 family members so far, both very different but still what was needed.

My stepmother went on hospice after she started refusing food, drink, NG tube and IVs while in the hospital for pneumonia and UTI. She was unable to speak due to strokes. Pretty much just bedbound. I used a lot of yes and no questions stated differently over the course of 3 hours to make sure hospice and being ready to die was truly what she wanted. She was on hospice for 9 months before she passed. There really wasn't any quality of life left for her. She spent all her time laying in bed in a nursing home not able to do anything. The passing was peaceful.

My MIL just passed away while on hospice a few weeks ago. In her case, it was her decision as stage 4 colorectal cancer was progressing rapidly. Chemo would have only given her maybe another miserable couple of weeks. The docs wanted to keep draining fluid out of her abdomen and she said "What for? It doesn't change the outcome." She passed away after 2 weeks surrounded by family and close friends and was able to say her goodbyes to dozens of people in that time. She was a woman of faith and was ready for the good Lord to take her home on his time.

Everything will really come down to if your mom can articulate what she wants. If she is unable, then whoever is legally in charge of her medical care will have to start making some decisions. Hopefully speaking with your mom will clear up some of these things. Many hugs!!
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This is a difficult decision you face no doubt. I have a childhood friend, an RN, whose hubby is Md.
Their mom, wanted "everything done" to maintain life. At 96 that poses some ethical probs for them.

What trauma would they put her through to do so. Last week, at same time we were making decision for our mom, they made same for theirs.

You do a resuscitate on older peeps, you will break their ribs. I am not putting my mom through that.
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Hospice is voluntary. Whoever has POA should remove her from hospice if they feel she should have full medical care and not end life intervention.

I was also told that pain relief was the first priority in hospice...but quality of life is important too. POS should Talk to hospice and tell them that any emergency issues like broken bones will be handled in ER should it happen.
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How about Palliative Care?

MOm graduated from Hospice twice. Third time she went to Heaven
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It is okay. The circle of life... It is so hard, and yet, if the quality of life is depleting, the you know it is time not to fight for quantity of life. Quality of life is what you need.

If quality is not there, then why the quantity of it?

If you saw mom's last years of life in her photos,,,,, you know the quality was not there.. She looked lost, confused, scared, and confused. It was not good.

I do so miss her, very much. She stopped talking three years before she passed away. She did recognize me and smiled, but no verbal contact...

Yes, this is going to happen, your parent will soon pass. My brother died before she did, and I didn't mention it to her since I wasn't sure if she would understand in any way what I was saying... You just don't know... Kinda thought my brother would swoop down spiritually and whisk her away to Heaven, but it didn't happen that way. I guess she knew I wasn't ready to let her go. Still am crying.
An old friend to me: : Death is okay. It's about the only way people leave Earth.

He was right.
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jacobsonbob May 10, 2019
Sometimes the "circle of life" has one or more smaller circles attached near the end, when one goes into hospice but regains enough strength to leave it!
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Hospice and hospitals... They see things differently..

In order for mom to be treated in hospital, I had to release her from hospice, and if I didn't want life sustaining treatments, then I had to sign her back to hospice and then they could have put her in a transitional floor in hospital, but things got botched up, and they told me she had to go back to AL home... And then a couple days later, she was liberated from her body. Yes, I am still dealing with all this emotionally.... It has been a year... It is still hard, and I need to get through this so I can keep going for my family here on Earth. And I certainly do talk to my loved ones in Heaven, and yes, I do feel they hear me and answer me... :) And laugh at me sometimes.
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Invisible May 10, 2019
Our situation was similar to yours. I had to choose - back to the hospital for IV fluids or hospice? It wasn't 24 hours later that Dad passed before the hospice nurse even got there. I've been back/forth in my mind as to whether I did the right thing. But I sent his sister to the hospital and she died there. Did not want him to die there. When I review pictures/journal entries for the past couple of months, I see the decline. I sure didn't want him to be bedridden and turned every 2 hours like a turkey. It's about quality of life.
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Go with what your GUT and your mind and your heart is telling you. What is right for your family? That is what matters. What is right for your MOM?
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Saving someone’s life is different than keeping someone alive. Even though we may be prepared, we are never ready to let go of a loved one.

I recently went through this as my mom had stopped eating and losing weight by the day. But the drs put her in rehab and it almost killed her. I had gone as far as preparing myself and my brother that this could be the end. We brought her home resolving that she would never go into a nursing home or rehab again.

She is still with us. We have a long way to go to address her current health issues (drs are pushing surgery), but I am thankful to have her around for what may be her last Mother’s Day.
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My neighbor, and fellow caregiver, had same situation with her mom and COPD. The relatives (siblings) who had nothing to do with her day to day care in the home, wanted to go with the 'experts', move on to hospice, and withhold all curative procedures (regular medicine, tests, etc). One of the relatives is a nurse and others in the family go with her word must be the gospel. Based on care she provided to her own family members, she is one who believes when an old person gets sick, it's time to let them pass. My neighbor felt strongly about giving her mom every opportunity to recover again with the exclusion of compressions to get her breathing again if that situation arose.
Once again, her mom was rebounding so she talked to the dr at the hospice about leaving her meds and occasional testing in her medical care. Her mom did better and was no longer eligible for hospice care and she returned home.
My neighbor had seen her mom go from death's door to remarkable recovery so many times in the past, her decision to help her recover again paid off. Several times when her mom is doing well, they have had the conversation to ensure she understands how far she wants to go to recover and each time her mom says she wants every opportunity to get well, but doesn't want heroic efforts in the way of compressions to the chest if she were to stop breathing. She is even ok with ventilator to help give time to recover. She does want to live.
Yes, COPD will probably take her life at some point, but she has been at end stage for many years now. She has problems from time to time that may look bleak, but she has also bounced back better than before after drs and family said this is it - let her go. The primary caregiver knows her better than anyone, can identify on a daily basis something not quite right, and should listen to others as part of the conversation BUT go with their gut on the actual decisions for the care.
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Kathycan313 May 11, 2019
Thank you for sharing your experience. I love to hear hopeful stories and wish you and yours the best. And yes go with your gut seems right!
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While on Hospice you can decide what course of action is taken.
If she is on Hospice and falls and breaks a bone..you can suspend Hospice and a trip to the ER and put her though surgery and rehab..then go back on Hospice. Thing is many do not do well in surgery and most certainly do not do well in rehab.
If she gets pneumonia you can again suspend Hospice and take her to the hospital for treatment.
(Then again what type of pneumonia is/was it? Aspiration pneumonia is different than other pneumonia's. For Aspiration pneumonia thickened liquids can help prevent it)
As far as medications go Hospice has standard medications that they will provide. If you wish to continue other medications that they do not provide you can pay for those medications.
The reason a hospital stay is not normally done is if Hospice is billing Medicare the Hospital can not bill Medicare so if a hospital stay is needed Hospice is suspended.

And final thought Hospice is not mandatory and once you sign on for Hospice you can change your mind at any time.
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NeedHelpWithMom May 10, 2019
Can you restart easily?
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NeedHelpWithMom...As long as the person is still Hospice eligible it is as easy as the first time. They will probably do an assessment again but chances are your Loved One has not improved that much that it would keep them off. And if it was a trip to the hospital for a broken bone most likely they are even more frail than the first time.
You can still seek treatment just not for the condition that made them Hospice eligible to begin with. For example Hospice WILL treat an infection but if your "life limiting condition" is cancer you can not seek treatment for the cancer.
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You have the right to take her off hospice care if you feel it is wrong for your mother. Do you have a religious leader you trust enough to talk to about this?  He or she might be able to help you with the "allowing nature to take its' course" vs "assisted suicide". I know pneumonia is what actually causes the death of many elderly and was in fact, the final diagnosis for my own mom. But I would have a problem with not setting a limb, especially if she was able to walk or use that limb prior to the break. Do you know what you mother would want? My mom didn't want anything invasive or heroic, and she and I had many conversations about that so I felt comfortable with my choices for her. Fortunately her personal physician was willing to provide care for her right up to the end and I chose NOT to have hospice involved, even though I know many people benefit from it.
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You are not wrong. There appears to be a move to put more and more people on hospice. But hospice does no life-extending care (by definition). No matter what the medical experts say, make your own decision. The medical community has their own agenda. A friend of mine's aunt (on hospice for a breast tumor) broke her leg bone with just walking on it. She had to be taken off hospice to fix her leg then put back on. My sister (73) paralyzed on one side in a nursing home from a stroke was advised to go on hospice but she is not terminal at all. We turned it down. A friend of mine's mother (82) decided to not have an operation on a fast growing abdomen tumor. The doctor put her on hospice. She is going to die from a bowel blockage. The determination for hospice no longer appears to be a terminal condition, but a quality of life decision coupled with a financial decision as nursing homes costs an huge amount of money. My sister gets almost no care. Left in bed for over 3 months now. They never get her up because she gets uncomfortable in the wheel chair. In diapers even though she has bladder control. Fed peanut and jelly sandwiches all the time because she can feed herself with that. It is hard for nurse's aids to remain caring.
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MJInslee May 11, 2019
My heart aches for your sister and you. But I wonder if she is in the best facility. If there are others near by, maybe you should check into them, to see if they have a different policy for hospice patients. Nurses aides should not stop caring just because someone is in hospice. Maybe it is too early for your sister to be considered terminal. Best of luck to you both. I hope you can find more support for her, and for you. I found hospice absolutely wonderful for both my mother and MIL. But, they were in end-stage conditions when hospice became involved. Love, me
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Oh boy! This sounds like when I called in Hospice too soon. I didn't really realize the full implications of what being on Hospice meant; but, I soon found out. Mom started throwing up blood & was in acute pain. I wanted to take her to the ER but in order to do so, I needed to revoke Hospice, which I soon found out was much easier said than done,

The staff told me I couldn't just write out a document stating I wanted to take Mom off Hospice. I would have to wait until the Hospice nurse arrived with the documents. I was told it would take at least 45 minutes for the Hospice nurse to arrive & the ER would not see Mom until those documents were signed.

I'd been told when I signed Mom up that it wasn't a big deal to revoke Hospice. That turned out to be blatantly untrue.

When the Hospice nurse arrived, she went into the nurse's station to review Mom's medical file then she came into Mom's room & examined her. She offered to give Mom morphine, which shocked me because Mom is allergic to morphine. This told me the Hospice nurse hadn't read Mom's file very thoroughly. She also said she could give her an enema to relieve her belly pain. She also said they could get an X-Ray of Mom's abdomen; but, they didn't have a contract with the hospital where Mom was staying (there was an extended care/skilled nursing floor) so it would take another hour or so until their mobile X-Ray technician would be able to come. I was so thoroughly pissed that I told the Hospice nurse I want to sign the papers NOW. That's when she informed me that she had to go down to her car to get them. She knew I wanted to revoke Hospice & yet she hadn't brought the papers upstairs with her. What should have only taken 10 minutes at most took 45 minutes. In the meantime I get a call from the Hospice administrator who tried to change my mind. NO WAY! So, I knew what had taken the nurse so long to get the documents.

Even after I signed the documents, it took another 45 minutes or more to get the information into the system so the doctors in the ER would treat her.

Mom ended up getting a transfusion, medicine to stop the bleeding that was from the effects of the gastric reflux.

Long story - short version. Mom lived for nearly another year & a half during which time she had many good days. If I hadn't revoked Hospice she would basically been allowed to bleed out & even with pain medications might have suffered. I can't say for certain. It was a hard lesson to learn.

So, I hope this has been helpful to you.

I did put Mom back on Hospice about 10 days before she did die. She had quit taking her medication & had stopped eating anything. It was time. In fact the staff called a meeting to let me know I needed to call in Hospice. It was the same company but different individuals who were wonderful.

Just understand Hospice is big business & not Hospices are equal. Some provide wonderful care & some only the bare minimum. My sister's neighbor's mother was dying & they sent in someone to give her massages, to play the guitar & sing to her, etc. The Hospice my deceased fiance's son brought in were horrible & did nothing to educate his family about what they could do for him. It was only when I was able to come up that I told them about sponges that would moisten his mouth, eye drops that would keep his eyelashes from gumming up, lip balm for his lips, ice chips when he could swallow but was thirsty, etc. I was appalled. I don't think his family realized he could be saved & by the time I was able to come up to see him (I had to arrange care for my mother since I was taking care of her at home at the time) it was far too late.

Let us know what you decide.
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Penelope123 May 11, 2019
Thank you so much for all this information. You have gone through so much and sharing your experience has really helped to enlighten me in caring for my mother in the near future.
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You can opt in and out of hospice. Sounds like she’s in it a little too soon
when I used hospice treating my father I didn’t allow morphine until
his end stage (final week).
as long as your Mom is comfortable and happy don’t push to end her life.
hospice keeps you out of the hospital.
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