For those with a loved one who is dying

[MarieVeronica]

Two weeks ago, my 91 year old mother, who suffers from mid to late stage Alzheimer’s… was placed on hospice care, in my home… after a fall, from which she sustained a hairline fracture of her pelvis. The fall has rendered her now, completely bedridden.

In the course of setting up her care… I was spoken to, numerous times… by the hospice staff about something called “hospice philosophy”. From what they told me (repeatedly) their “philosophy”… consists of the following: Keep the patient pain free. Keep the patient calm. Keep the patient comfortable (clean bedding, etc). They also made certain, that I signed the “do not resuscitate” box. I was ok with that, because natural death is Almighty God’s realm. And that is what my mother has in her last will.

So far, it sounds ok. Right? But here’s what is troubling me.

In line with their “hospice philosophy”… they brought in some heavy duty liquid pain killers and an anti-agitation drug. I must mention here… that not once, did I request these drugs… but expressed numerous times… a preference to use Liquid Tylenol for my mother’s pain.

They were also very clear on one point: “If your mother improves… we may take her OFF hospice. And she’ll be back in your hands”. As a result, I’ve accepted the fact… that I may be forced to place her in a nursing home.

But, I obediently gave the hospice drugs to my mother ONE time. Over the next 24 hours, after receiving these drugs… she lay, nearly comatose. Her breathing was shallow. Her mouth and tongue were as dry as sandpaper. I was not able to feed her or offer her any water. Because these hospice drugs… had put her in a stupor, the likes of which I’d never seen. As memories of the Terri Schiavo case began to play in my mind… my Catholic upbringing and beliefs started to kick in. If I continued to give her the hospice drugs, she will be gone in a matter of a few days.

So I made the decision, as is my right… to stop those heavy duty meds… and start giving her the liquid Tylenol, again. After a few hours, she began to come around… and was aware enough to take some pureed food and some water, through a dropper. She is now taking small amounts of food and water on a regular basis.

I am suffering from no allusions about my mother’s recovery. She is getting weaker and weaker. She is dying. Alzheimer’s is a fatal disease. I’ve accepted this… and in fact, will be starting to make her final arrangements tomorrow.

In the meantime, while she is in my care… and until Our Blessed Lord calls my mother to His side… I will continue to make sure that she is offered nourishment, hydration and the pain med of my choosing (which SHE herself, gave me the right to… when this time came). She will get all of this, whenever she will accept it. I will keep her clean and comfortable, to the best of my ability. The rest is in God’s Hands. When He calls her, she will go to Him. But that is HIS decision. Not mine. And not hospice.

I guess the reason I’m posting this… is because I want other families, in this or similar circumstances… to be VERY clear about what doctors and/or hospice might be telling you. THINK about it, very carefully. Even though you’re under a great deal of stress… THINK about what our Church teaches. Human life is SACRED… even in it’s most fragile and helpless state. IT MATTERS.

As believing and practicing Roman Catholics… we do not “fall in line” with some other philosophy, simply because it is presented to us… as the BEST way, for our ill or suffering loved one to be dealt with.

Please keep us in your prayers. God bless.

 

[maryjk]

In line with their “hospice philosophy”… they brought in some heavy duty liquid pain killers and an anti-agitation drug. I must mention here… that not once, did I request these drugs… but expressed numerous times… a preference to use Liquid Tylenol for my mother’s pain.

There shouldn’t be any problem with you using over the counter pain relief.

They were also very clear on one point: “If your mother improves… we may take her OFF hospice. And she’ll be back in your hands”. As a result, I’ve accepted the fact… that I may be forced to place her in a nursing home.

This is true for any patient in Hospice. Hospice care is for patients in their last day. (Be it hours, days, weeks or months.)

But, I obediently gave the hospice drugs to my mother ONE time. Over the next 24 hours, after receiving these drugs… she lay, nearly comatose. Her breathing was shallow. Her mouth and tongue were as dry as sandpaper. I was not able to feed her or offer her any water. Because these hospice drugs… had put her in a stupor, the likes of which I’d never seen. As memories of the Terri Schiavo case began to play in my mind… my Catholic upbringing and beliefs started to kick in. If I continued to give her the hospice drugs, she will be gone in a matter of a few days.

Did the nurses give you instructions that your mother should be receiving these drugs NOW? I only ask because the heavy duty meds are normally given to the family, but not used until and unless needed. It should be part of your “Emergency Kit.”

So I made the decision, as is my right… to stop those heavy duty meds… and start giving her the liquid Tylenol, again. After a few hours, she began to come around… and was aware enough to take some pureed food and some water, through a dropper. She is now taking small amounts of food and water on a regular basis.

I’m glad she is feeling better.

I am suffering from no allusions about my mother’s recovery. She is getting weaker and weaker. She is dying. Alzheimer’s is a fatal disease. I’ve accepted this… and in fact, will be starting to make her final arrangements tomorrow.

In the meantime, while she is in my care… and until Our Blessed Lord calls my mother to His side… I will continue to make sure that she is offered nourishment, hydration and the pain med of my choosing (which SHE herself, gave me the right to… when this time came). She will get all of this, whenever she will accept it. I will keep her clean and comfortable, to the best of my ability. The rest is in God’s Hands. When He calls her, she will go to Him. But that is HIS decision. Not mine. And not hospice.

I guess the reason I’m posting this… is because I want other families, in this or similar circumstances… to be VERY clear about what doctors and/or hospice might be telling you. THINK about it, very carefully. Even though you’re under a great deal of stress… THINK about what our Church teaches. Human life is SACRED… even in it’s most fragile and helpless state. IT MATTERS.

As believing and practicing Roman Catholics… we do not “fall in line” with some other philosophy, simply because it is presented to us… as the BEST way, for our ill or suffering loved one to be dealt with.

Please keep us in your prayers. God bless.

Please discuss this with your Hospice provider. Make sure that they think you should be using those heavy duty drugs now, rather than later. Also, make sure they share YOUR philosophy rather than that you share theirs.

 

[JackieMom]

The meds are left with the family to use PRN - meaning “as needed.” Liquid Tylenol will not even touch most hospice patient’s discomfort, but if it works for now and your mom is pain-free using acetaminophen, go for it. If she needs more pain control, you can use the liquid morphine/MS Contin, (whatever they provided.). Many people becaome extremely anxious and agitated toward “the end.” We never want patients to feel that way. That’s why anti-anxiety meds are provided (usually lorazepam.). You always use those PRN. The atropine is for the family’s comfort, it decreases secretions and the death-rattle sound. You can use it or not.

Hospice will never leave an order for mandatory drugs, but will often encourage families to use them because the whole point of hospice is a peaceful death. Sometimes families panic at the sedating effect of the drugs or fear they are “killing” their dying family member. It’s hospice’s job to encourage families to feel empowered to use the pharmaceuticals as needed, not to fear them.

I think a chat with the nurse in charge of your case is in order. Peace be with you and your mom.

 

[pollylodges]

Our Father who art in Heaven, hallowed be thy name.

Thy kingdom come, thy will be done on Earth as it is in Heaven.

Give us this day our daily bread.

And forgive us our trespasses, as we forgive those who trespass against us.

And lead us not into temptation, but deliver us from evil.

Amen.

†

Hail Mary, full of grace, the Lord is with thee.

Blessed are you among women, and blessed is the fruit of your womb Jesus.

Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death.

Amen.

†

 

[CradleJourney]

Today is the one year anniversary of my elderly father’s passing. May God give you, your mom and your family comfort and peace throughout her final time here and welcome her with joyful gladness into His arms when the time comes. Peace.

 

[MarieVeronica]

Thank you all, for your words of wisdom.

The one thing that I’ve been trying to tell hospice, is that I know my mother. She has lived with me… in my care… for longer than she was married to my father when he passed. I know her better, than anyone else. Because we’ve lived together for over 50 years.

She has a feisty attitude and always has. While I don’t doubt, that she may have some pain associated with the hairline fracture… she would tend to be combative, even if she was pain free.

This is the reason I’ve opted for the Tylenol. She doesn’t cope well, with heavier drugs. Hospice is having difficulty understanding this.

No one ever said to me… “this is to be used as needed”. All they said to me was… “use these”. So I did, but with the understanding that I could go back to Tylenol… if I chose to. The attitude of the hospice staff has turned from friendly… to aloof. But I don’t care. My mothers wellbeing is my first concern.

She has been resting very comfortably. She has been taking food and water. And she spends some time, awake. With the heavier drugs… that wasn’t happening.

I feel fine with the decision I made. And I hope that anyone else in our circumstances… will understand, that they have the right to question anything being done for a loved one. You don’t have to adhere to any philosophy that isn’t in line with Church teaching. ASK QUESTIONS. God bless.

 

[maryjk]

Thank you all, for your words of wisdom.

The one thing that I’ve been trying to tell hospice, is that I know my mother. She has lived with me… in my care… for longer than she was married to my father when he passed. I know her better, than anyone else. Because we’ve lived together for over 50 years.

She has a feisty attitude and always has. While I don’t doubt, that she may have some pain associated with the hairline fracture… she would tend to be combative, even if she was pain free.

This is the reason I’ve opted for the Tylenol. She doesn’t cope well, with heavier drugs. Hospice is having difficulty understanding this.

No one ever said to me… “this is to be used as needed”. All they said to me was… “use these”. So I did, but with the understanding that I could go back to Tylenol… if I chose to. The attitude of the hospice staff has turned from friendly… to aloof. But I don’t care. My mothers wellbeing is my first concern.

She has been resting very comfortably. She has been taking food and water. And she spends some time, awake. With the heavier drugs… that wasn’t happening.
**
I feel fine with the decision I made.** God bless.

I don’t doubt that you are happy with your decision. That is good.

But it is going to be a problem if you are at odds with her Hospice provider. I have been there. It was awful. Every call was a trial. Every time I needed something, it was like pulling teeth. And as the end comes, you will need things that only they can provide.

I continued to fight, they were aloof to me as well. And when my mother passed? It took them 45 minutes to respond to my call.

It would be better to come to an agreement or to change providers.

 

[TheRealJuliane]

Thank you all, for your words of wisdom.

The one thing that I’ve been trying to tell hospice, is that I know my mother. She has lived with me… in my care… for longer than she was married to my father when he passed. I know her better, than anyone else. Because we’ve lived together for over 50 years.

She has a feisty attitude and always has. While I don’t doubt, that she may have some pain associated with the hairline fracture… she would tend to be combative, even if she was pain free.

This is the reason I’ve opted for the Tylenol. She doesn’t cope well, with heavier drugs. Hospice is having difficulty understanding this.

No one ever said to me… “this is to be used as needed”. All they said to me was… “use these”. So I did, but with the understanding that I could go back to Tylenol… if I chose to. The attitude of the hospice staff has turned from friendly… to aloof. But I don’t care. My mothers wellbeing is my first concern.

She has been resting very comfortably. She has been taking food and water. And she spends some time, awake. With the heavier drugs… that wasn’t happening.

I feel fine with the decision I made. And I hope that anyone else in our circumstances… will understand, that they have the right to question anything being done for a loved one. You don’t have to adhere to any philosophy that isn’t in line with Church teaching. ASK QUESTIONS. God bless.

Thank you for sharing your personal journey. This can be so heartbreaking. I do believe that sometimes, elderly and ill people are given these medications so they can “drift away peacefully,” and not be too much trouble while they exit this world. I am not casting aspersions on any individual hospice worker! But we do need to be very vigilant and watch for things like this.

In any case, I know a little of what you are going through. I hope your dear mother does not need the pain medication. At some point, she may stop eating on her own, and that will be very stressful for you. You will want to coax her to eat. But it is natural when the body starts to shut down. It’s just hard to watch this process happen.

:grouphug:

 

[MarieVeronica]

Thank you for sharing your personal journey. This can be so heartbreaking. I do believe that sometimes, elderly and ill people are given these medications so they can “drift away peacefully,” and not be too much trouble while they exit this world. I am not casting aspersions on any individual hospice worker! But we do need to be very vigilant and watch for things like this.

In any case, I know a little of what you are going through. I hope your dear mother does not need the pain medication. At some point, she may stop eating on her own, and that will be very stressful for you. You will want to coax her to eat. But it is natural when the body starts to shut down. It’s just hard to watch this process happen.

:grouphug:

Thank you Juliane. You hit the nail right on the head. I did, indeed… get the feeling that the goal was just as you said… to keep her medicated… so she would “drift away, peacefully”. That is what happened to Terri Schiavo. What her parents fought so hard, to prevent… but the ex-husband insisted on. It is a form of Euthanasia… which “practice”, the Catholic Church condemns.

I steadfastly hold to what the Church teaches. Life is to be protected… from conception to natural death. Keeping my mother so heavily medicated, that she can’t eat or take water… is not “natural death”. It is death by starvation. You’re correct in saying… she will eventually stop eating on her own. That is exactly how Alzheimer’s progresses. She is already showing signs of doing just that. She’s not eating enough to keep a bird alive. But the point is… she IS eating what SHE wants. And taking the water that SHE wants. Food and water are NOT being withheld. And I feel that is directly because I was alert (through the grace of God)… to what was going on, and I refused to keep my mother in such a state… that she can’t take nourishment… if SHE wants it.

As to fears of hospice becoming uncooperative… if that time comes… I’ve already accepted the possibility of having to place my mother in a nursing home. If that happens… I know that the end will come very soon. Because she will be out of my hands, at that point. I’m not suggesting that anything sinister will occur… I’m merely saying, that I know my mother will be kept medicated in a nursing home. Due to her feistiness.

But until that time… … she will continue to get food and water from me.

 

[maryjk]

As to fears of hospice becoming uncooperative… if that time comes… I’ve already accepted the possibility of having to place my mother in a nursing home. If that happens… I know that the end will come very soon. Because she will be out of my hands, at that point. I’m not suggesting that anything sinister will occur… I’m merely saying, that I know my mother will be kept medicated in a nursing home. Due to her feistiness.

But until that time… … she will continue to get food and water from me.

I guess what I am saying is that this doesn’t have to happen.

Of course you don’t have to look into changing Hospice providers or even setting up a meeting with your current provider. But if you do, it may end up that your mother can stay with you until the end. My mom did.

And 6 months later, we used a different provider for my father. So we had none of the hostilities are we did just 6 months earlier.

It might just be worth it.

 

[MarieVeronica]

I guess what I am saying is that this doesn’t have to happen.

Of course you don’t have to look into changing Hospice providers or even setting up a meeting with your current provider. But if you do, it may end up that your mother can stay with you until the end. My mom did.

And 6 months later, we used a different provider for my father. So we had none of the hostilities are we did just 6 months earlier.

It might just be worth it.

Understood Mary. Thank you. As I said earlier, hospice became a bit aloof… when they found out that I had switched her back to Tylenol. But at this point, they are still being cooperative. Sending us what we need, etc. I will place the rest in God’s Hands… and I’m sure it will be ok. God bless you, for being such a good daughter… and caring for both your parents.

 

[hannajomar]

I just want to clarify, it is never immoral to give someone medication to relieve pain, even if there are negative side effects, even if it causes an earlier death. Here’s what the Catechism says (emphasis added):

Euthanasia
2276 Those whose lives are diminished or weakened deserve special respect. Sick or handicapped persons should be helped to lead lives as normal as possible. (1503)
2277 Whatever its motives and means, direct euthanasia consists in putting an end to the lives of handicapped, sick, or dying persons. It is morally unacceptable.
Thus an act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator. The error of judgment into which one can fall in good faith does not change the nature of this murderous act, which must always be forbidden and excluded.
2278 Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected. (1007)

2279 Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged.

I am writing generally here, because of course I don’t know the specific case of your mother, MarieVeronica. It’s wonderful that the tylenol is enough to sooth your mother’s pain now. There might come a day when that is not strong enough. If that happens, it is moral to give her something stronger for the purpose of easing her pain, even if that effects her eating and wakefulness.

I highly recommend the book “Midwife to the Soul” for anyone facing this situation. It describes this end of life process for families and healthcare providers, and helped me to learn what the sick person is going through.

p.s. I hope none of this appears to be medical advice, because it’s not. I’m only addressing morality.

 

[His_helpmeet]

I’m rather surprised that they would put your mother on strong medications right away, if liquid Tylenol is controlling her pain.

As a former hospice nurse, I have worked with many “strong” medications - including sedatives and painkillers. However, I have NEVER given them at a dose that would leave my patient completely unresponsive - UNLESS it was something like palliative sedation that we were using due to intractable symptoms. (Palliative sedation is a rare treatment that is designed to allow the patient to go into a deep sleep, from which they will pass into natural death when the time comes for them to die. It’s only used in cases of severe, intractable symptoms such as pain and shortness of breath that are not relieved with high doses of conventional medications. I worked hospice for 2 years and only ever saw it used a handful of times.) I have given patients doses of medication that would probably have killed the average person - but ONLY in situations where the patient was developing physiologic tolerance (not addiction) to the medication and needed it in higher doses to control pain.

Sedatives are only used in situations such as severe agitation and acute delirium - and then only in very low doses. (I don’t think I ever gave more than 2 mg of Haldol at a time, and usually it was 1 mg - a standard dose for a healthy adult is about 5 mg.) It doesn’t usually take much to settle someone down.

I completely agree, though, that hospice care should be very carefully discussed with families. The goal is to alleviate suffering, NOT to cause premature death due to extreme sedation. You might make sure that the hospice staff have your mother’s most current medical records. Then, too, if the liquid Tylenol starts to become less effective, you could ask them to start a low dose of painkiller, possibly a different one than the one she was on before. With most opioid painkillers, there is no “ceiling” dose, so you can titrate them indefinitely to treat pain. Usually we would give pain medication every 4 hours, with the patient able to have a dose every hour if they needed for “breakthrough” pain. (This is not the case with Tylenol, though - Tylenol has a maximum dose of 4000 mg/day and can damage the liver in higher doses.) We also had a symptom assessment scale that clients could use so we could see how their medications were working for them and if anything extra needed to be done. If pain medications and sedatives are given in appropriate doses, they should not cause severe drowsiness. Some sedation may be common initially with painkillers, but it should not be severe and should pass in a few days.

I agree that it’s very important for hospice workers to involve family. As a hospice nurse, I worked in an institution, but families were still very involved and I got to know and spend time with many wonderful spouses, children, extended families, and friends of dying patients. I currently teach practical nursing and I hope that I can extend to my students some of the things that I have learned from hospice nursing.

St. Joseph, patron of a happy death, pray for us.
Heart of Jesus, once in agony, have mercy on the dying.

 

[gh4]

I worked as a nurse at an Alzheimer’s Facility for about 8 years. Then I took care of both my parents who had Alzheimer’s disease.
One thing I know is that as their dementia gets worse, MOST (not all by any means) but most people with Alzheimer’s perceive little to no pain. So with a hairline fracture I would have to question if heavy duty meds were needed.
When my Mom was in the nursing home, she fell out of bed and broke her Tibia and fibula bones in her lower left leg and really showed little to no pain reaction at all, ever.
I REFUSED anything more than a Tylenol #3 for her and she only took 3 of those total and then was put on plain Tylenol. The nursing home hated me because I was extremely pro-active for my Mom and a nurse to boot, but they got over it.
So yes, you need to be pro-active for your Mom. If the liquid tylenol works, don’t give or let them give the heavy duty meds.
I’ve worked with hospice a LOT through out the years, and they listen to families and are very helpful, but they can get pushy sometimes, and you have to push right back.

Good luck.

 

[pollylodges]

Our Father who art in Heaven, hallowed be thy name.

Thy kingdom come, thy will be done on Earth as it is in Heaven.

Give us this day our daily bread.

And forgive us our trespasses, as we forgive those who trespass against us.

And lead us not into temptation, but deliver us from evil.

Amen.

†

Hail Mary, full of grace, the Lord is with thee.

Blessed are you among women, and blessed is the fruit of your womb Jesus.

Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death.

Amen.

†

 

[HolyRosaryChild]

++++++++++++++++++++++++++++++++++++++++++++++
Please Dear Jesus Christ our Saviour and Dear Our Lady Mary Mother of Jesus could You please bathe MarieVeronica’s Mother in Thy Divine Love and Comfort, freeing her of pain and all discomfort at this time during her Life. Could you please ease Marie’s Heart and flow Thy Divine Love, Strength and Reassurance through Her Dear Lord now and for Eternity Amen.

Hail Mary Full of Grace, The Lord is with Thee, Blessed art Thou among Women and Blessed is the Fruit of Thy Womb Jesus. Holy Mary Mother of God pray for us sinners now and at the hour of our death Amen

Hail Mary Full of Grace, The Lord is with Thee, Blessed art Thou among Women and Blessed is The Fruit of Thy Womb Jesus. Holy Mary Mother of God, pray for us sinners now and at the hour of our death Amen

Hail Mary Full of Grace, The Lord is with Thee, Blessed art Thou among Women and Blessed is The Fruit of Thy Womb Jesus. Holy Mary Mother of God pray for us sinners now and at the hour of our death Amen