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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)

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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Rather than see reduction those blood tests as potential neglect try to see it as they will no longer be poking her with needles just to chart numbers that won't change the fact she is slipping away slowly

Not setting a bone when someone is in bed 24/7 means little - when I was in university one guy told me about his brother who was in a coma after a car accident for nearly 3 months & on a check up later on the dr said 'it seems your broken leg healed well' & he said 'what broken leg?' ... it healed when he was immobile quite well - casting it is only necessary if you are walking/weight bearing/using it not laying flat in bed

Basically you must stop thinking about these things that are used to enhance long term survivability but can cause small hurts[needles] etc in the short term as no longer necessary - these people are experts in dying which they hope to do with as much dignity as possible for those in their care - it will take a bit of rethinking to see this but if you talk to them about your concerns they will help you through this hard time
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It depends on the person, what I say may seem harsh to some people.

But I let nature take its course, QUALITY of life above all other, managing pain above all other. Keeping the person from suffering, keeping them warm, clean and well looked after is the main goal for me. Trying to keep somebody alive because of a guilty conscience is not about the person, it's about you. The best thing anyone can do with someone who is terminally ill is to let go and let whatever faith you believe in to take over. Death is going to happen regardless to all of us, it just depends on the when not the how. Let hospice come in and make the person comfortable if they are terminally ill. No one has to accept hospice. If the person is not terminally ill then do what they want you to do and keep them in the hospital. Save their life.

Most children should know what their parent wanted for that parent's death. Most parents usually show or talk about what they want you to do for them if the time draws near, even if they didn't write it down. You know your parent. Some parents are hard-headed and want you to go to the ends of the Earth to save them. Other parents are more spiritual and don't want all that intervention. It all depends on the parent's personality. You know your parent, so respond the way you know best, then make the decision and let go.

If the person wanted extensive intervention, let them have it. Let the doctor's insert tubes into them, do surgeries, force feed them, and do everything possible to keep them alive. Let the hospital/medical team treat them.

If it's the other way around, then call hospice and make them as comfortable as possible.

So there is really just 2 choices for conditions that are terminal or will become terminal. Keep taking them to the doctor/hospital and trying to work through the illness or keep them comfortable and try to maintain their health comfortably through a care facility or at home.

We are only caregivers, we are not suppose to think we are causing someone's demise. We didn't cause their illness or predicament. It's not our fault they are going through health problems. It's enough we are caring for the person and trying to have their best interest at heart. We should not guilt trip ourselves and think we killed them too. No one can stop a person's death journey. Be their advocate but don't think you can stop someone from dying. Dying is something that is never controlled by us, when someone has passed on, it's meant at that time for that person to leave the world.

So if you think hospice is immoral then don't do hospice and continue to treat conventionally. Do what the patient would want if they could tell you. Try to do the best you can with it. That's all you can really do in the end.
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lealonnie1 May 11, 2019
What a wonderful response.....perfectly stated, imo.
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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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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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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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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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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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