DIS doctors...need info regarding elderly and end of life

[Val]

My DMom is 91, and as her doctor says, is the equivalent of a car with about 500.000 miles on its engine. I was called home because I was told the end was near..have been here since Sunday. Since Saturday she has only taken in about 8 ounces total of Ensure and maybe 8 ounces of sprite. She is in and out of consciousness and has very shallow breathing. Hospice has left a comfort kit, but the CNAs taking care of her (she is at home with 2 round the clock CNAs) are trying to limit any drugs. She is sometimes in pain, but they are reluctant to give her the morphine, or the haldol or ativan for her agitation/hallucinations. She can only whisper at best at this point.

I HAVE to fly back home....I have 4 kids and a full time job and I am getting grief from work. I have said my goodbyes, and we are at peace....she is an incredible lady and whispered to me to fly home to my little ones and not to cry- that it is time to pass the torch and she will be fine on her new adventure. It is killing me to leave her, but I feel I have no choice- I am just sitting here waiting for her to die, and I am not DOING anything. In a way, it seems she is waitng for me and my sibs to leave so she can go.

My question for the docs....how long can we expect her to linger here on earth? The hospice nurses alternate between hours and weeks.....what has been your experience in a situation like this? She has no real "disease"- just a very worn out body (leaky heart valves, survived three strokes, a heart attack and she has COPD).

I don't want to lose her, but I know I must......and St. Peter better have his books in order....she was a CPA for a powerful tax law firm, and as they say, she ran the place for years (ran those attorneys ragged). I have a feeling that heaven is about to be audited by the grand matriarch......I only hope St.Peter and his assistants are ready!

 

[mcco5543]

I am no Doctor but have been with many people at the end stage of your life. If she is no longer speaking and no longer eating or taking in fluids I would bet anything it will be days...not weeks. She may be waiting for you all to go and if that's what's going to make her comfortable I am sure it's ok for you to go back and take care of her Grandbabies.

I would however be concerned about the CNA's /nurses not giving her pain medication or anything else from the comfort pack. This lady is transitioning out of this life and whatever makes her more comfortable and feels safest for her needs to be done. This is the entire and sole purpose of hospice. I urge you to call the hospice line right away..and by right away I mean now, don't wait. They are available 24 hours a day for questions and concerns. Let them know your mom's not being given the meds from the comfort pack when she seems in pain or disoriented. You are here to make her end of life the best it can be. She needs those meds unless she specifically has documentation specificying she doesn't want them.

I know it seems like a lot of sitting and doing nothing and waiting but remember you are being there....and being there is enough. It's really hard for you and for everyone who loves her to see her going, but You're doing the right thing. Lots of love for you and keep us posted!

 

[disneyfav4ever]

Your mother sounds like my grandmother in her last couple days. On a Saturday, she refused to get out of bed, and the last time she ate anything was late Sunday night. She died that Friday.

I'd say it'll be a couple days at best.

 

[minniecarousel]

My DMom is 91, and as her doctor says, is the equivalent of a car with about 500.000 miles on its engine. I was called home because I was told the end was near..have been here since Sunday. Since Saturday she has only taken in about 8 ounces total of Ensure and maybe 8 ounces of sprite. She is in and out of consciousness and has very shallow breathing. Hospice has left a comfort kit, but the CNAs taking care of her (she is at home with 2 round the clock CNAs) are trying to limit any drugs. She is sometimes in pain, but they are reluctant to give her the morphine, or the haldol or ativan for her agitation/hallucinations. She can only whisper at best at this point.

I HAVE to fly back home....I have 4 kids and a full time job and I am getting grief from work. I have said my goodbyes, and we are at peace....she is an incredible lady and whispered to me to fly home to my little ones and not to cry- that it is time to pass the torch and she will be fine on her new adventure. It is killing me to leave her, but I feel I have no choice- I am just sitting here waiting for her to die, and I am not DOING anything. In a way, it seems she is waitng for me and my sibs to leave so she can go.

My question for the docs....how long can we expect her to linger here on earth? The hospice nurses alternate between hours and weeks.....what has been your experience in a situation like this? She has no real "disease"- just a very worn out body (leaky heart valves, survived three strokes, a heart attack and she has COPD).

I don't want to lose her, but I know I must......and St. Peter better have his books in order....she was a CPA for a powerful tax law firm, and as they say, she ran the place for years (ran those attorneys ragged). I have a feeling that heaven is about to be audited by the grand matriarch......I only hope St.Peter and his assistants are ready!

I hope you get some more suggestions, but I highlighted an area of concern. Why are they reluctant to give her meds for comfort? That just doesn't make any sense.

 

[Val]

The 2 CNAs are taking good care of her, and they have worked with hospice for years, so I think they know what they are doing...BUT....they have grown really attached to my mom and I think are trying to slow down the process. My mom is a person who NEVER took any real medicine. She is an old gypsy from Czechoslovakia and always made her own potions, etc. The CNAs are from Tonga, and seem to share mom's love for potions and prayers rather than standardized medicine. They have been praying over her and chanting....and she seems to calm when they do this. I can't remember her ever even taking an aspirin for pain. I think the CNAs remember this, and are reluctant to give her pain meds.

My brother is in town, and promises to stop by randomly throughout the day to check on mom.

I agree that I think she is waiting for my sis and me to leave....she gets agitated and tries to wake up when we are in the room, and whispers to us to go home and not be sad or cry. She asks about the grandkids and tells us to go to them....but she just won't give in.Two nights ago she saw my dad and her parents sitting in the chair calling to her...and we have been telling her it is okay to go to them.

This is so hard....but at the same time it is so peaceful. We buried my DD17's bestest 17 year old boy friend (she had known him since he was 3) on Saturday....he committed suicide (with no true warning signs). That was a bad death....mom's death is a "good" death- her body is no longer able, and she is ready for the next great adventure! Really puts the paradox of death in perspective. For the young death is a robbing of life; for the elderly it is a ticket to freedom.

Thanks for the advice. I will call the hospice nurses in the AM and get some guidance. I have a feeling we will be back on a plane soon, but it is time to g to my kids. Hard to realize that the matriarch will no longer be able to give us that evil eye....but that's okay. I inherited the "look". Hopefully, I can use it as well as she did!

 

[EMom]

Our experience with MIL in the hospital was awful and a world of difference from my mother, who opted to die at home. Thank God she is at home.

With my mother, the hospice people told us just what to expect and it went as they said. But my mother had lung cancer and was on pain meds, so she was clearly terminal. Also, she had stopped taking liquids and nourishment. So I cannot say how long your mother will last, but I will tell you this. I firmly believe it will be more peaceful and less drawn out, with less chance of trauma for the family than at a hospital. Here is why:

MIL was in a hospital. Among other things, she eventually had a heart attack and they resuscitated her, but it took way over 20 minutes, so she had serious brain damage as well as damage to organs. There was no coming back from that. She'd been clear on what she wanted/didn't want and she didn't want to be kept alive by artificial means. They took her off all support and moved her to the hospice floor. They stopped all liquids, etc. The impression they gave us was that she would die at any moment. She her children stayed at her bedside and waited. And waited and waited and waited.

For over three weeks, she lingered. I won't go into what it did to her body, but it was gruesome. She would have hated it. There was a disagreement among the children as to how much pain medication to give her. I will never get over my feelings regarding the brother who wanted to skimp on meds for her against the wishes of every other family member and basically used his bullying nature to get his way. Let me be blunt: We never skimped on pain meds for my mother. And strangely, even with lung cancer, she was never in pain. We did it to avoid any agitation, among other reasons. If someone is not long to this earth, I feel you should embrace pain meds. Truly. They can be the person's friend. It's not as if they're going to risk addiction, is it?

For some reason that we can't wrap our brains around, the hospital kept my MIL on oxygen, which we think prolonged her life. Why a dying woman needed oxygen is beyond any of us. Why is it okay to take a person off liquids, but not oxygen? Why not stop everything and just let them go?

No one thought she could last that long with no liquids. No one. But she did. And it was torture for her children. Had she been at home, I am certain things would have gone differently and she would have died sooner and with more dignity. My advice is.....Make certain your mother stays at home. Her last days will be better.

My thoughts and prayers are with you.

 

[Tinkerbelle's Mom]

The 2 CNAs are taking good care of her, and they have worked with hospice for years, so I think they know what they are doing...BUT....they have grown really attached to my mom and I think are trying to slow down the process. My mom is a person who NEVER took any real medicine. She is an old gypsy from Czechoslovakia and always made her own potions, etc. The CNAs are from Tonga, and seem to share mom's love for potions and prayers rather than standardized medicine. They have been praying over her and chanting....and she seems to calm when they do this. I can't remember her ever even taking an aspirin for pain. I think the CNAs remember this, and are reluctant to give her pain meds.

My brother is in town, and promises to stop by randomly throughout the day to check on mom.

I agree that I think she is waiting for my sis and me to leave....she gets agitated and tries to wake up when we are in the room, and whispers to us to go home and not be sad or cry. She asks about the grandkids and tells us to go to them....but she just won't give in.Two nights ago she saw my dad and her parents sitting in the chair calling to her...and we have been telling her it is okay to go to them.

This is so hard....but at the same time it is so peaceful. We buried my DD17's bestest 17 year old boy friend (she had known him since he was 3) on Saturday....he committed suicide (with no true warning signs). That was a bad death....mom's death is a "good" death- her body is no longer able, and she is ready for the next great adventure! Really puts the paradox of death in perspective. For the young death is a robbing of life; for the elderly it is a ticket to freedom.

Thanks for the advice. I will call the hospice nurses in the AM and get some guidance. I have a feeling we will be back on a plane soon, but it is time to g to my kids. Hard to realize that the matriarch will no longer be able to give us that evil eye....but that's okay. I inherited the "look". Hopefully, I can use it as well as she did!

First off let me say that my mother was a hospice patient and I work for a hospice company.

There is no way the CNAs could slow the process down. Also they should not be withholding pain medication. The point of hospice is to keep the patient comfortable -- thus pain free.

If I may be blunt -- the hospice is being cheap. They simply do not want to pay for the meds.

Your mom should not be in any pain at all. Even if she is not able to drink or swallow there are pain meds that come in a patch.

 

[mcco5543]

First off let me say that my mother was a hospice patient and I work for a hospice company.

There is no way the CNAs could slow the process down. Also they should not be withholding pain medication. The point of hospice is to keep the patient comfortable -- thus pain free.

If I may be blunt -- the hospice is being cheap. They simply do not want to pay for the meds.

Your mom should not be in any pain at all. Even if she is not able to drink or swallow there are pain meds that come in a patch.

I am going to offer a different take. I believe the original posters idea is correct. The CNA's are attached to their patient and share her original belief system. That being said

Original poster,

Your mom may not have taken meds during her life by her choice, but if she has not left explicit instructions for no comfort care than she certainly wouldnt' have chosen hospice.
Since she DID choose hospice I truly believe she chose it to have the most peaceful transition possible. Keep praying and chanting if that makes her feel better, but it is completely and I do mean UTTERLY unethical and against all hospice policies to decide to withhold pain meds at this end of life stage. If your Dear mom is exibhiting pain, of any nature, physical or psychological. It is up to those of us around her to help her come into a peaceful state again. the night time can be scariest for someone at end of life. don't wait until morning. Call the 24 hour hospice line. Advocate for your mom's peace and comfort.

Again if you believe your mom does not want pain/comfort meds then by all means stick by what your mom would want. However this is the best part of hospice and I would hate to see her miss out on something that could be even more peaceful for her if her CNA's were not imparting their own opinions on the situation. There medical expert opinion is one thing. There personal religious practices and life philosophies have no business in your hospice care. I speak from the experience of my mother in law who is the head of hospice and paliative care and as someone with a primary care phsyicin who is a driector of hospice and paliative care as well.

Lots of love for you and your family.

 

[Tuffcookie]

Val,

This brings back so many memories of my DM. It has been 3 yrs since she passed away. My DSis and I lived close by but I believe my DM purposely waited until we were not around to pass away. She was in hospice at the end. She had been weened off of all medications except for pain.

I remember one visit to her in particular. It was just she and me and she looked at me and asked, "Why aren't you willing to let me go"? I don't know where the words came from but I answered her, "I am willing to let you go but God is not ready for you yet". That caused her to stop and reflect.

As much as I wanted to be with her in the end, I wasn't. There will always be that sadness on my part. She was my best friend! But each time I visited her I knew, in my heart, it could be the last time I would see her this side of heaven so I tried to leave no words unsaid. We actually had some humorous times in hospice which I will always cherish! There was another time when I was holding her hand and I said (this was a game that I played with youngest DS) "I love you the most"! At first DM said, "I love you the most" back. But after a few seconds she thought about what she said and added: "I love you and Karen both the same"! Of course I couldn't let it go, I said: "No, you love me the most because I'm the oldest"! That caused DM to smile and she said, "I knew you were going to say that"!

to you. I know what you are going thru!

Much love during this time,

TC

 

[The Mystery Machine]

 

[4nana]

My heart breaks for you, having been in your spot with my Dad and several good friends, I can only offer my sincere prayers.
Godspeed your dear Mom as she crosses from her physical journey to her spiritual one. Also take care of yourself during this difficult time.

 

[ctinct]

The 2 CNAs are taking good care of her, and they have worked with hospice for years, so I think they know what they are doing...BUT....they have grown really attached to my mom and I think are trying to slow down the process. My mom is a person who NEVER took any real medicine. She is an old gypsy from Czechoslovakia and always made her own potions, etc. The CNAs are from Tonga, and seem to share mom's love for potions and prayers rather than standardized medicine. They have been praying over her and chanting....and she seems to calm when they do this. I can't remember her ever even taking an aspirin for pain. I think the CNAs remember this, and are reluctant to give her pain meds.

My brother is in town, and promises to stop by randomly throughout the day to check on mom.

I agree that I think she is waiting for my sis and me to leave....she gets agitated and tries to wake up when we are in the room, and whispers to us to go home and not be sad or cry. She asks about the grandkids and tells us to go to them....but she just won't give in.Two nights ago she saw my dad and her parents sitting in the chair calling to her...and we have been telling her it is okay to go to them.
This is so hard....but at the same time it is so peaceful. We buried my DD17's bestest 17 year old boy friend (she had known him since he was 3) on Saturday....he committed suicide (with no true warning signs). That was a bad death....mom's death is a "good" death- her body is no longer able, and she is ready for the next great adventure! Really puts the paradox of death in perspective. For the young death is a robbing of life; for the elderly it is a ticket to freedom.

Thanks for the advice. I will call the hospice nurses in the AM and get some guidance. I have a feeling we will be back on a plane soon, but it is time to g to my kids. Hard to realize that the matriarch will no longer be able to give us that evil eye....but that's okay. I inherited the "look". Hopefully, I can use it as well as she did!

The bolded part gives me chills. My mom saw her relatives, too, and even mentioned a brother who died as a child that I did not even remember her mentioning before. It was only a few days after that that she left.

You might want to ask her doc or her hospice care givers how many of their patients have a "death rattle." Years ago I read a book called How We Die by Sherwin or Sherman Nuland that mentioned that a high percentage of his patients had this change in their breathing shortly before they died. My mom def. did. It was only about a day and a half, maybe two, afterwards that she was gone.

And lastly, take your mom's words at face value. She may not want to go when you are there. She is telling you to go home. Honor her wishes.

This is a difficult time, but it sounds as if you and your mom are at peace, and from your descriptions of her, it's clear she was a great lady. I know we can't get religious here, so I will just wish you both comfort and blessings.

 

[Nancyg56]

I am so sorry, I too have sat with my mother and with my Aunt as made their final journey.

My sister was a hospice nurse and told me that she believed that people had to find their way and that they sometimes waited for their moment. If you Mom has asked you to go to your family she may be waiting for you to go back home. If she has seen family members she will not be alone. My Aunt kept talkng to my Mother so we knew that she was in good hands. She also knew that my cousin would have a difficult time being there so she waited until Pat and I were with her and my cousin had gone home.

You are in my prayers

 

[rie'smom]

When my grandparents stopped taking nutrition, it was only a few days. This happened the same way in each of their cases.
Tell those CNAs to give her meds. Your mom's end should be peaceful not painful.

 

[LindaR]

I know this is hard. There are physical "indicators" that death is near. My sister was an MA in a nursing home for many years and I remember her telling me some details.

Ask the hospice folks what the PHYSICAL signs are so that your family will know. And there ARE clear signs. If they try to tell you otherwise, they haven't worked in this field long or been properly trained.

 

[Disney Doll]

See bolded

Our experience with MIL in the hospital was awful and a world of difference from my mother, who opted to die at home. Thank God she is at home.

With my mother, the hospice people told us just what to expect and it went as they said. But my mother had lung cancer and was on pain meds, so she was clearly terminal. Also, she had stopped taking liquids and nourishment. So I cannot say how long your mother will last, but I will tell you this. I firmly believe it will be more peaceful and less drawn out, with less chance of trauma for the family than at a hospital. Here is why:

MIL was in a hospital. Among other things, she eventually had a heart attack and they resuscitated her, but it took way over 20 minutes, so she had serious brain damage as well as damage to organs. There was no coming back from that. She'd been clear on what she wanted/didn't want and she didn't want to be kept alive by artificial means. Why did they resuscitate her? Did the ospital not have her wishes in writing at the time of the heart attack? They took her off all support and moved her to the hospice floor. They stopped all liquids, etc. The impression they gave us was that she would die at any moment. She her children stayed at her bedside and waited. And waited and waited and waited.

For over three weeks, she lingered. I won't go into what it did to her body, but it was gruesome. She would have hated it. There was a disagreement among the children as to how much pain medication to give her. I will never get over my feelings regarding the brother who wanted to skimp on meds for her against the wishes of every other family member and basically used his bullying nature to get his way. That is too bad. Let me be blunt: We never skimped on pain meds for my mother. And strangely, even with lung cancer, she was never in pain. We did it to avoid any agitation, among other reasons. If someone is not long to this earth, I feel you should embrace pain meds. Truly. They can be the person's friend. It's not as if they're going to risk addiction, is it?

For some reason that we can't wrap our brains around, the hospital kept my MIL on oxygen, which we think prolonged her life. No it didn't. We often keep dying people on oxygen so they are not "air hungering...panting and fighting to breathe. Why a dying woman needed oxygen is beyond any of us. Why is it okay to take a person off liquids, but not oxygen? Why not stop everything and just let them go?

No one thought she could last that long with no liquids. No one. I wouldn't have thought so either. 3 weeks is a long time to go without any food or fluids. But she did. And it was torture for her children. Had she been at home, I am certain things would have gone differently and she would have died sooner and with more dignity. Only if you were able to keep the bullying brother-in-law out fo the way. My advice is.....Make certain your mother stays at home. Her last days will be better.

My thoughts and prayers are with you.

OP, it's great that your mother is home. I agree...keep her there. The concerning part is the lack of medication being given. That must be addressed with the hospice nurse who, in turn, must address it with the home health aides. If they are going to be trusted to administer the medication, then they MUST administer it as instructed. Be careful though...when we had DMIL on hospice, the aides were not allowed to give medicine. The family had to do it or the nurse if she happened to be there at medication time. If your mother is dying she should not be lying there uncomfortable or agitated waiting for some island potion or chanting to work. She should get medication that we KNOW works. That's not to say that the chanting and prayers shouldn't continue if they seem to calm her in other ways, but she should not be in pain.

 

[Amg120499]

I know this is hard. There are physical "indicators" that death is near. My sister was an MA in a nursing home for many years and I remember her telling me some details.

Ask the hospice folks what the PHYSICAL signs are so that your family will know. And there ARE clear signs. If they try to tell you otherwise, they haven't worked in this field long or been properly trained.

I totally agree. Please talk to the nurses and the hotline.

Hospice nurses told us when my grandmother only had 24 hours or less to live. They checked her vitals hourly while we all sat in my aunt's living room waiting. After a few hours, we all went into the kitchen and were summoned back by the nurses. They let us have the last few moments of her life together.

 

[DisneyMissy318]

I don't have any advice to offer - just wanted to send you a hug. Your Mom sounds like an awesome lady!

 

[minkydog]

I agree, I think your mother is waiting for you to leave so she can pass. A lot of parents don't want their children to bear witness to their leaving. My Grandfather did that. He was taken to the hospital for,hmm, internal bleeding I think. He sat up wiht my sisters talking, laughing, joking. when the nurses brought his lunch tray they all decided to go out and get some food themselves. My sisters have not even cleared teh hospital driveway when they got a phone call that he had passed! I am convinced that he waited.

When my father was dying he fought it every step of the way until the last 36 hours when he finally just gave up. He was very fearful and did NOT want me to leave.All he wanted was for me to be in physical contact with him. I could see the end was pretty near, so I remained with him, stroking his arm. I spoke to him about his parents and told him "when they come see you tonight, you must go with them. Tommy is caring for your cat and Robert is caring for your dogs. Go with your mom & daddy and don't look back." He visibly relaxed and in a few hours he was gone.

 

[wdwfan16]

I am sorry to hear about your DMom. It is so hard for all involved when a loved one's time has come. You need to do what you need to do. That is what she wants. She wants to know that you will go on even when she is no longer her in person. She will ever be gone from you heart.

I am not Dr. but I did have some relative die in my adulthood. Once they stop drinking fluids the end is sooner than later. They can live for weeks without food but not without water.

Some people will hold on to see their kids or grandkids and then release themselves. Many do not want a realtive in the room when they release themselves.

Why are they withholding the meds. Morphine can lead to an earlier death but we are talking hours or days. No reason to have her in pain for a day or two.