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Loosing my mom through Hospice after 12 Days
MyStrength
Posted: Saturday, December 8, 2012 11:58 AM
Joined: 11/15/2012
Posts: 20


I am having a hard time knowing that my mom had to die in Hospice, it was not a natural death, but a death caused by man, she obviously was not as weak as they thought, she held on for 12 days without food or water.  I feel like I made her suffer, if Dementia was to take her naturally, I would have such an easier time if this weren't the case. I know she was suffering for 3 weeks in the nursing home with pain and tons of agitation that they tried to control, by having hospice go to her, but nothing was working.
If anyone has lost their mom or dad in a Hospice Facility, please let me know if you feel the same. I felt like she was starved and must have wondered why I would not give her a drink, that was the first thing I always did everynight at the nursing home. I feel so guilty,this is not the way I wanted it to happend, it should be an act of God, not man, Please Help
King Boo
Posted: Saturday, December 8, 2012 12:38 PM
Joined: 1/9/2012
Posts: 3545


I am sorry you lost your mother.  It is a very hard loss to reconcile, no matter what the circumstance, and human nature is to play out "what if?" scenarios, and because you loved her, it is easy to let this get fueled by unecessary guilt.

 

Others will be along later with their hospice experience.  I must tell you, that I failed to get my mother into hospice, and the fact that she WASN'T in hospice haunts me.

 

I stupidly listened to the doctors, who told me, "oh, that's a nice idea, but insurance won't pay for it", and thus Mom died in a medical facility, with good care but little emphasis on letting nature take it's course.  We set limits on extreme care, but she still would have had a much better exit from life if she had been on hospice.

 

My dear, dementia did kill your mother.  Hospice provides hydration - if the patient can swallow.  If your Mom wasn't able to, nature was taking her course, and the body was shutting down naturally.  Indeed, if the body is shutting down, it can create additional discomfort by providing things it doesn't need, like food and water. 

 

If Mom was in tons of pain and agitated, for what purpose would have keeping her at that degree of discomfort served?  Hospice is not designed to kill people, do not listen to the myths and distortions out there.  Like any service, some hospices are better than others.  All are designed to provide comfort measures, at a time when further medical treatment is not indicated as one is only prolonging natural death.

 

Others will be along. . . . .with their posts.  I hope they relieve your upset, at least a little bit.


dayn2nite
Posted: Saturday, December 8, 2012 1:59 PM
Joined: 12/18/2011
Posts: 3097


I am so sorry for your loss.

I don't think you realize it, but "dementia taking her naturally" really IS not eating or drinking for a period of time prior to death. 

 

There is no "starvation".  Due to dementia, the body forgets how to swallow and then the body, as it begins to shut down, has no use for food or drink.

 

Had you forced a drink or food on her she likely would have aspirated and then died of pneumonia.

 

So all in all, she had a death that was natural for dementia.  Man is not at all involved in her death. 

 

An unnatural death is for someone to force liquids or foods into their loved one and for them to choke or aspirate on them.  That is a death caused by "man".


Still Blessed Daughter
Posted: Saturday, December 8, 2012 8:50 PM
Joined: 10/11/2012
Posts: 23


So sorry for your loss. But please listen to us. Hospice offers comfort care. Everyone dies. Rather than try to fight the dying process, they accept it and provide expert comfort.  

Grieving is really painful and difficult. Please keep reaching out for help. 


MyStrength
Posted: Saturday, December 8, 2012 11:00 PM
Joined: 11/15/2012
Posts: 20


King Boo

Thank you for your reply, everyone says that Hospice is great, it may be and can be for some, but my mom was eating as they were getting her dressed to go to her final home on earth, The Hospice Center.

 

I noticed that once they began medicating, with Morpheine and 2 medications for aggitation, that it seemned to dry out her throught, a few times she gagged and was no longer able to breath through her nose.  This alarmned me more than I could ever explain.  I contacted the Doctor that she had there and asked that she please get some liquid hydration, she agreed.  When I went in the next day, I was told that they had to stop it, becuase it was given under her skin, like the medications and was developing a large bulge under her skin, which was more painful for her.  I wanted hydration through IV, they said that she would most likely pull it out.  If it is secured well enough, with a sock type material around it, she would not even know that it was there, just like the needles that were placed on her upper arms, to apply the medications.   I spoke to the MD the next morning on the telephone and asked why it was not give in an iv, if she pulls it out, at least we tried, Im not asking for the world, I just did not want  my mom starved to death and no hydration.  The Md's response was " What is it that you are trying to accomplish" I guess at that point I should have had her sent elsewhere.  The place did have a good reputation and many people were always being brought there.

 

I thought it was in-appropriate for a doctor to talk that way to a person who is loosing their mother or anyone.  The Md also claimned that it would also pro-long her suffering, she was managed well with pain and aggetation, I just wanted her to have IV Fluids and morpheine every 5 -6 hours as oppposed to 4, so that me and my daughter her only family, could have a little more precious time with her, as it was, 4 days before she passed, she was answering my daughters questions, my daughter would ask her to squeeze her hand if she knew how much she loved her and she did and many other questions were answered.  I really dont think it was her time, something went wrong at the nursing home to cause this horrible screaming aggetation, she was impacted and sent to the hospital for the obstruction and she did she a UTI, which was caught 2 days before she left, she did not even get a chance to get treatment, all these things including low extremely low blood sugar, can also cause an advancement, which under appropriate care, can respond well to,in some cases.  She was also taken off her Namenda, Aricept and Zoloft, becuase they said that she was not taking her medication anyway, so she had not been getting much if any of these meds, I was there and I can say that most of the time that was true, this could have played a roll.  I just feel like things were mis-managed and everything turned around for the worse almost overnight.

 

This is why I wanted IV fluids, one Hospice company was going to the nursing home, perhaps they were not that good.  I just wanted a couple of more days with mom and the peace of mind knowing that food and water were withheld, that is inhumane to me, she had a couple of bits of applesauce 2 days into hopsice that shook her head no, probrably becuase she was so sick and tired of applesauce, that is what they would give her, her pills crushed in, and now with her troat being so dried out, it must have hurt to swallow the applesauce.

 

The facility that you mom was in, I think handled things in a much more human like manner, I wish that I had that peace of mind, something I will never be able to have now, and I always took the best care of my mom, even in the nursing home, I was always on top of things everyday.

 

Bless you and thank you for responding it really means the world to me


MyStrength
Posted: Saturday, December 8, 2012 11:13 PM
Joined: 11/15/2012
Posts: 20


day2night

Thank you for your reponse, I may feel differently if my mother was un-able to eat or drink.  Hospice was going into the nursing home, but could not control her aggitation at all, she would just almost constantly keep screeming, and almost like trying to get out of her own skin.   When she was not highly aggitated, I would feed her and give her Glucerna and she has no problem with it.

My mom had been in the nursing home for 5 years, prior to that I took care of her, until she was having to many falls, and too many bouts with very low blood sugars.

So after 5 years, the social worker calls and leaves me a voice mail, I had taken my daughter to the doctors, that either I can take her home or find another nursing home for her, becuase they could not control her.

 

I feel like I was forced into it, how could I find another place before night-time, I dont have my own home, so I couldnt have her screaming at night, I live in an apartment with my daughter.

 

My mom, when she was at this facility for physical therapy once had a room-mate that literally did not want food, just water, and the cna forced chicken soap, mixed with some potatoe, down her throught, she aspirated and was gone in 4 days, her daughter was a nurse at a hospital

 

I hope you can understand why I feel the way I do, if they would have given me the chance in the Hospice Center, to gain some control, me and my daughter may have been able to bring her to a more natural level of comfort, Im not saying that we would not have lost her anywas, but we may have had a couple of more days to spend with her, and at least she would not have died with the discomfort of thurst and her throught and mouth dried out.

 

It really really hurts me and I cant get pass it, sorry if I am mispelling, I am shaking writing this and I cant see the screen becuase of all the tears

 

Hugs and kisses


MyStrength
Posted: Saturday, December 8, 2012 11:17 PM
Joined: 11/15/2012
Posts: 20


Still Blessed Daughter

 

Thank you for your response, I totally can accept that, but I dont think it should have gone that way in my moms case, if you read the 2 reponses that I replied to, you will understand my hurt, agony, frustration, and every other negative emotion a person can feel, and the worse part is, their is nothing I can do, I have to live with this, and no-one in this State of Rhode Island offers any counceling or hope, I call places, tell the my story and me and my daughter need group or one on one counceling and I never hear back, we are left to suffer alone.

 

Bless you


farawaydaughter
Posted: Sunday, December 9, 2012 5:49 AM
Joined: 4/19/2012
Posts: 414


I am so sorry for your loss. I do hope you will call the ALZ hotline and be able to speak to them about how you feel.

 

My mothers death certificate states she died of inanition meaning "the exhausted condition that results from lack of food and water". She was under hospice care at home. She could no longer swallow, she "forgot". The 2nd cause of death was listed as ALZ/dementia.

 

 It was the disease that took my mom.

 

 Please call the hotline here, they may be able to find counseling for you, and hospice does offer counseling as well, for up to a year. Contact the hospice and they will connect you with someone.

 

 Please know your mom is at peace and is no longer struggling.


carrie4141
Posted: Sunday, December 9, 2012 6:35 AM
Joined: 12/2/2012
Posts: 289


The WORST feeling in the world is the loss of control. Intellectually, we know what's going on with our Loved Ones, but the heart wants what the heart wants. Rational thought plays no role in the beginning times right after a loss. I know it seems like it would have been easier if you had had those two extra days, but probably only on a very miniscule level. You did get a doc that sounds like he had a very poor bedside manner in how he spoke to you about your concerns....he should have explained WHY the IV hydration wouldn't have been any more effective than under the skin. As for the morphine dose, it was a mercy to get it every 4 hours rather than the 5-6 so that she didn't have to suffer. If it is possible to take any measure of solace in this time, I hope that it will be that her suffering is now over and she is at peace. You love her and miss her horribly and that is natural. You want answers to the 'why' when very few answers really exist and even if they did the grief-stricken mind can't absorb the information.....that is normal also, but I do know that right now you must feel like everything you are feeling is anything BUT normal. Be kind to yourself....that measure of peace you said you'd never have will come, it just doesn't happen on anybody else's time table. It comes on its own time, just like the overwhelming waves of grief. The grief will never go away.......but it will change in form. Hospice usually has grief counselling services for families after a loss, I encourage you to take advantage of that. They might be able to explain in a more compassionate way the things that the doctor could not/would not since they spend more time individually with people than doctors do. And we are here also to help you through the journey, and there's no time limit....I will keep you in my prayers.
MLB61
Posted: Sunday, December 9, 2012 7:03 AM
Joined: 12/2/2011
Posts: 726


Dear MyStrength -- First of all, I am so very sorry for your loss.  No matter the circumstances, to lose a beloved parent after years of taking care of them is heartbreaking. What we hope for in the end is a peaceful, comfortable journey into the next life. Unfortunately, that was not the experience that you described. 

 

My experience with hospice was very different.  My mom was in memory care and the aides were trying to force her to eat.  She would spit out the food and look at me with eyes that said "help me".  I moved her to a skilled nursing facility with hospice care. She was much more comfortable. She did not want to eat or drink. Hospice would not use IV fluids because that would have only prolonged her suffering. I knew that hospice would not use IV fluids when I signed her up for hospice. They were very clear about that. I stayed by her side for three days before she passed. 

 

My dad passed shortly after my mom. He was also on hospice. When he no longer got out of bed and refused any food or drink, he passed quicker than anyone thought he would.  He was comfortable at all times thanks to hospice.

 

As faraway said, please call the Alzheimers Helpline (800-272-3900) and ask about support services for you and your daughter.  The hospice that took care of my parents called a few days ago to check up on me. I hope that someone from your hospice will contact you. Maybe the funeral home that you used has support services.

 

Please remember that your mother was so lucky to have you with her for the whole journey.  Remember all the wonderful care that you gave her over the years.  The last few weeks were out of your control.  You did the best that you could.  Please forgive yourself for what happened at the end.  Easier said than done, I know, but I don't think that your mother would want you to blame yourself. I wish you and your daughter the best.  Sending warm hugs and heartfelt condolences.


Laguna Mandy
Posted: Sunday, December 9, 2012 5:45 PM
Joined: 10/29/2012
Posts: 36


Completely true! I was going to say similar but you had already said it perfectly.

I had hospice at home for Mom who passed 4 weeks ago with me by her side.

Starvation is a very natural course of dementia. Mom stopped eating much about 2 months before she died. It's distressing to watch yes, she then refused any fluid in the last couple of days. She was given pain relief via a patch as she began to have physical pain  3 days before she went.

  I had been warned this was the most common way dementia patients go and even though I was warned of it , I still found it very hard and was always second guessing myself and my choices for Mom. My natural instinct was to want Mom to keep eating and drinking but for what reason? It would simply have prolonged her suffering and she had truly suffered ( horrendously) for many years with this disease.

Mom no longer wanted to be here and she told me this so many times. In the end HER choice to stop eating and drinking meant it was time.

Hospice did nothing but help her take this path more COMFORTABLY and her death was very peaceful ( and pain free) and for this I will be forever grateful.

 

 


Laguna Mandy
Posted: Sunday, December 9, 2012 5:51 PM
Joined: 10/29/2012
Posts: 36


Sorry I forgot to mention in my previous post "completely true" was in response to Dayn2nite's post which explained "natural" dementia death so succinctly!

I hope that the various post here help MyStrength with the many concerns outlined in her posts. Know that your Mom actually went in he same way that so many dementia sufferers do.

 


dayn2nite
Posted: Sunday, December 9, 2012 8:24 PM
Joined: 12/18/2011
Posts: 3097


MyStrength wrote:

King Boo

 She was also taken off her Namenda, Aricept and Zoloft, becuase they said that she was not taking her medication anyway, so she had not been getting much if any of these meds, I was there and I can say that most of the time that was true, this could have played a roll.  I just feel like things were mis-managed and everything turned around for the worse almost overnight.

 

This is why I wanted IV fluids, one Hospice company was going to the nursing home, perhaps they were not that good.  I just wanted a couple of more days with mom and the peace of mind knowing that food and water were withheld, that is inhumane to me, she had a couple of bits of applesauce 2 days into hopsice that shook her head no, probrably becuase she was so sick and tired of applesauce, that is what they would give her, her pills crushed in, and now with her troat being so dried out, it must have hurt to swallow the applesauce.

 


What all of this sounds like is there was a misunderstanding as to what hospice is and is not.  When you signed her up for hospice, did they have a meeting with you outlining the kind of care they would provide, medications, and most importantly, what they do not do?

 

The morphine - wanting her morphine to be spaced apart for a longer amount of time so you could have more time with her, and IV fluids.

 

Morphine is dosed by hospice per the patient's need, not the family.  If they had her on every 4 hours, that's what she needed.  Moving it to every 5-6 hours is cruel--it would allow her morphine level to drop and pain to break through.  I know you didn't want that for her, right?  Not to get a day or two more time with her, and I will cover that at the end of my post also.

 

IV fluids---not helpful for a dying person.  

 

Alzheimer's medications - why would you want her to take them days away from death?  They weren't doing her any good.  They don't prolong life.

 

Counseling - you have grief counseling available to you through hospice for a year after the death.  If you don't want to utilize their services, you can contact any funeral home of your choice and participate in the next grief support session they have scheduled.  All funeral homes offer this.

 

I think possibly there is some misunderstanding as to what a peaceful and comfortable death is.  If you Google "signs of imminent death", you will find multiple links that detail the dying process.  That may help you understand what was happening and that your mother was having a normal death.

 

I know I cannot convince you right now, but know that your mother had a comfortable death on her own timetable.  Our LOs pick their time.  If she wanted to stay longer, she would have, trust me on that.  She was done and she wanted to move to a higher plane.  Maybe one day you will be able to see that.


King Boo
Posted: Monday, December 10, 2012 10:15 AM
Joined: 1/9/2012
Posts: 3545


Hello again, My Strength-

It's a rainy day here today, and I am so sorry for your loss, your grief, and your anger about Mom's death.

 

These early days are hard to get through - but you will, somehow, get through them, for yourself, for your daughter, and ultimately, for Mom.  You had to say goodbye this week to the woman who brought you into the world - devastating.  Our world has been re-arranged, our insides turned out, when our Mom dies.

 

Can I make a suggestion?  It is hard to see straight in these early days.  Print out the responses from this thread to read a month or two down the road. Sometimes threads can be a bit hard to find at a later date.

 

  Everything is too raw, everything too upsetting to think through.  Just cry, and try to get through these early days.

 

Re-reading these posts at a later date will guide you to the answers you need, right now it may be too early to hear them or do research.

 

Some doctors are better than others at explaining things.  While blunt, the "what are you trying to accomplish" comment really meant that it was not going to deter death, and if he had taken the time to explain things further, could have caused her greater discomfort.  shame on him for not speaking with you in greater detail, and more gently. 

 

As to the IV - I hesitate to go to this topic because I know the lack of one for your Mom was a source of upset to you - yes, my Mom had one, but she was blown up like a balloon with unecessary fluids at the time.  So upsetting to see, I vaguely remember getting semi hysterical and crying to a staff person "Get my Mom  a new (DNR) hospital bracelet, please, please, please, get her a new hospital bracelet" the entire while she was in agonal (final) breathing pattern.

So futile,  Poor Mom.    We make the best decisions we can at the time. 

 

We all love, we all want things to happen a certain way for the ones we love, but dementia doesn't let that happen.  Sometimes, it is our struggle for meaning, our struggle to know we did the best we could. Our pain that we weren't ready to say goodbye yet. But Mom was ready to go.   And we torment ourselves. 

 

Hold your daughter close, grieve, and do the print out for another time.  I am so very, very, sorry for your great loss. 

 

 


MyStrength
Posted: Monday, December 10, 2012 11:26 PM
Joined: 11/15/2012
Posts: 20


Dear Farawaydaughter

Thank you for taking the time to write, it really means a lot to me, especially at a time in my life, when I feel so alone, so scared.  So many things have gone wrong lately, in the past I could handle it, knowing that I still had my mom to go to everyday, she was the strenght that got me through life, and I dont know at this time how to go on without her.

Today was my  dads 35th anniversery in heaven and when I prayed, I told him that his 35 year would be special , because he would have mom to celebrate with him.

 

Than I began to think, is it all real, is their really a place like this, I guess we have to belive.

I have contacted 2 agencies that say that they offer Grief support and pastoral Counceling, which me and my daughter could use.

We cannot bring ourselves to go back to that place, I had to go by it tonight, and I cant tell you how much it hurt,  Others can do it and that's great, I cant, just a glimpse of the building, felt like someone was wrippingout my heart.

I dont understand why these 2 other places wont return my calls and offer us help.

I guess thats RI for you.  I dont know, but I do know that having wonderful people to talk to has helped me along this far.

Thank you so much

God Bless


MyStrength
Posted: Tuesday, December 11, 2012 12:02 AM
Joined: 11/15/2012
Posts: 20


Dear MLB61

Thank you so much for responding.  I can't even imagine having to go through that twice, you are a very strong person, God Bless you! 

You have such a clear understanding of how and why your parents lives ended in Hospice.

I sometimes used to look at my  mom in the nursing home, when she would fall asleep and wonder, what if this was it, just to test myself and see if I had the strenght, but I would quickly put that thought aside, and erase it.

Being with my mom, when she took her last breath, was the most un-real feeling I will ever have in my life, she really is gone, my daughter knew it was too hard for me, it was so hard for her, but somehow she comforted me, even though she is hurting so much now, becuase we cant find the help we need.

My dads aniversery was today 35 years and I told him it would be his best, becuase Mom was now with him, I only wish that I really knew that for sure, but I guess my faith will have to do.

 

"the exhausted condition that results from lack of food and water" is not what I wanted for her, I would have been ok, if she had heart failure, or something else took her.  They dont understand what and why we are doing this to them, my mom was still eating a little especially drinking, and especially for me, when I would visit every night.  But somehow something went wrong, her aggitation was beyond the control of the nursing home. The day that they were dressing her to leave, the cna was feeding her and a little to fast, I heard my mom say wait!

I will never forget the first time in Hospice, the first day on High Dose Morpheine, she was gagging, becuase it dries out the throat so badly, she must have wondered, why do I have to go through this now, and I always brought her a piece of her favorite pie and Glucerna and Ice crean, now no more. I knew she was confused about it, I could always tell what she was thinking, now she could not even swallow her own saliva and could not breath through her nose, that is one thing she never could stand.  It is cruel, perhaps the Hospice wasnt doing their job in making me and my daughter find peace.

God Bless you for all you have been through, I admire your strenght!


Still Blessed Daughter
Posted: Wednesday, December 12, 2012 8:07 PM
Joined: 10/11/2012
Posts: 23


Dear My Strength,

I think watching a loved one die (or caring for them during the general time of their death) has got to be as traumatic as watching people die in war. They really should recognize our experiences as a form of post-traumatic stress. No matter what the circumstances, it's probably OFTEN traumatic for family members. 

I know that I still feel traumatized, about 2 months after watching Dad die. I've had lots of surprising feelings, thoughts, memories, and struggles. 

I think death just plain hurts a lot. 

I also think time helps.

I try to take comfort in focusing on how much he and I loved each other, and that's starting to work - the memories of his final days are starting to be overshadowed by memories of good times with him. And I still HAVE his love, and my love for him. I can still feel and experience that, even though his body is gone. I also look at his pictures a lot, and think about how lucky I am that he was my Dad.

I empathize with your pain - and wish you much comfort and healing over time.


MyStrength
Posted: Wednesday, December 19, 2012 12:13 AM
Joined: 11/15/2012
Posts: 20


TO: King Bo, dayn2nite  Still Blessed Daughter  carrie4141

farawaydaughter   MLB61  Laguna Mandy

 

I can't thank all of you enough for your kind words and Wisdom.  I wish I was as confident, that what happened, was a natural part of the disease.  I thing a lot of it has to do with the fact that at the Nursing Home, where she had a different Hospice go it, things were not explained to me, the way they should have been, ignorance I guess.  When my mom had been their for a little over 5 years, the last 2 weeks she was there, was like a freefall decline, that's the only way I can explain it, instead I receive a call from the Social Worker to either come and get her tonight and take her home, or find another Skilled nursing facility for her.

 

My head was spinning, I actually cannot remember much of the last 2 weeks that she was in the Nursing Home, it was such a fast, rapid deline.  Yes she had started refusing many foods and medication, but she would always drink.  I asked the Hospice that was going in the nursing Home, Beacon Hospice, to put her back on the Aricept, Namenda and Zoloft, they said it would not help, because most of the time she refused her medication, but when a family member is requesting something for a patient that the end of her life was near, they should just do it anyway, this way I cant blame the stopping of the meds.  Mom did have a Bowel Impactment and a UTI, this of course would cause the symptoms of extreme distress and aggitation that she was expressing, becuase she did not know how to verbally let anyone know, and she most likely did not know herself what was going on with her body.

 

This is one hurdle I cannot get over, if a family member asks for something, they should just do it, so that the family member will see what the outcome would be, maybe things would have changed for the better, and maybe not, but they should not deny any requests to the family that are within reason.  They are responsible for the bowel obstruction, becuase the CNA's cannot seem to document things correctly, they are just too lazy. I also cannot get it out of my head that when mom was getting dressed or being dressed to leave, she was being fed and asked the girl to slow down, to give her a chance to swallow, she could still swallow regular food as opposed to pured, not sure on that spelling. Mom wasnt screaming, she wasnt aggetated, she seemned almost happy to leave, figuring I found a better place for her, that is something that I did talk to her about a few times.

 

Thank she lands in Hospice, the real Hospice Hospital, on so much medication, morpheine ect, that she was gagging, the morpheine completely dries out the throat.  My daughter had to go to the hospital last week, becuase of stomach pain that she had been having for almost 10 months.  They gave her a tiny dose of Morpheine, I was with her, she said it dried out her throat and mouth so much, she kept having to ask for water, they gave her ice chips, due to a test that needed to be done.  My daughter could not even imagine how her Grandmother must have felt, this was a baby dose, again my mother could still swallow, if I fed her she would eat, not much, but she would eat and drink her Cranberry juice at the nursing home.

 

Now they got her so dried up, like I said she was gagging, not for long, but I could not stand to see it. I remember calling on a Sunday morning to see how she was, the nurse said that she took a couple of spoons of Applesauce, than shook her head no, thinking that she would be offered something else, I think she had it with the applesauce, because at the Nursing Home, they would crush her pills and put it in applesauce, mom was still able to swallow in Hospice.

That is when I asked for the IV nutrition, and anti-biotics to clear her UTI, thats when I got the inhumane response of what am I trying to accomplish, I was flawed.  I said I wanted it and to cut the Morpheine back a little, to see how she would respond but I was denied,  Again no-one has the wright to Deny a family request within reason.  They said she most likely would pull it out, ok, if she does, than she doesnt want it, but how much would it have hurt them to at least try it, so that I could have some peace of mind either way.

 

Mom still also understood, by daughter would ask her questions and would say Grandma if you can hear me squeeze my hand, they had a hand conversation for an hour, she could not open her eyes becuase of the sedation, but she still understood.  It just hurts so much to know that she was able to still swallow and perhaps with better care than she received at the nursing home, she may have lived longer and at least I would know be going through the what it's.  I always knew what my mom was thinking and feeling, always, my entire life, even if she didnt say a word.  It kills me to know that she was likley thinking, when are they going to feed me, will my daugher and grand-daughter bring me a drink today.

I just know it, I feel it so deeply.  Mom was fraile when she entered Hospice, yet she still had the strenght to hold on for 12 days, possibly hoping and most likely wondering why I sent her there, to a place where they dont offer any food, or anything to drink, which she was still able to do.

 

I feel I need to get answers from the Nursing Home as to what suddenly in a matter of a couple of days, went so terribly wrong, and why they would not put her back on the meds I requested, she was given 6 months at that time, I wanted all of it, to deny the family something that they will never know and to know that this person they are denying, will at least have some  peace, knowing she was back on the meds, wouldnt take them, or did take them, but they were no longer doing her any good, that is something that you cannot go back on, and re-due.

Hospice does send letters for support groups, but I cannot go back there.  I need to know why they would not give her an IV for some hydration and some nutrition, if she pulled it out, ok, at least I got what I wanted, if it just plain out-right did her no good, than at least I would have the peace of mind knowing that everything I requested was done, and it didnt or perhaps might have made a difference, I am so angry with them for this, just do it, she is going to die anyway, again you cant go back and say we should have tried, they just should!

to give the family peace of mind, than I could completely understand and accept what happened, was supposed to happen and at least she did not suffer in pain.

 

Hugs and kisses to all of you for being so supportive, kind and understanding, I only wish Hospice has some of that to hand out

 


MLB61
Posted: Wednesday, December 19, 2012 5:50 AM
Joined: 12/2/2011
Posts: 726


MyStrength -- I am so sorry that you are not at peace with how your mom passed.  It seems to me that you were not well informed by the hospice or the nursing home about what hospice end of life care entails.  It is comfort measures only, not medical interventions.  I don't think that you were ready for that step or maybe you didn't think your mother was ready for that step.  What you seemed to have wanted was medical interventions that you might have gotten in a hospital setting.  

 

When I placed my parents on hospice, they were very clear about what measures they would take and what they wouldn't.  They also were very clear that it was my decision whether to continue on hospice or end the hospice care at any time and bring my parents to a hospital.  I continued with the hospice care and both of my parents passed peacefully and comfortably.  I am so sorry that was not your experience.

 

We don't get a do-over when it comes to our loved ones' journey.  It goes how it goes. We do the best that we can because we love them.  You did your very best for your mother and she knows that.  You made sure that she had wonderful care for many, many years.  Sometimes there is suffering at the end.  It's unfortunate, and none of us wants our loved ones to suffer.  But that was beyond your control.  Your mother knows that, too.

 

Please focus on all the wonderful things that you and your daughter did for your mother.  She was so lucky to have you.  Can you think of moments of joy your mother had in the past few years?  Something that brings a smile to your face?  Do you have happy pictures of your mom?  Can you make a scrapbook to remind yourself of happier times?  I like to remember that my mom enjoyed decorating the Christmas tree last year in the memory care unit. (Okay, now I'm crying.)  I remember my mom and dad holding hands or laughing with the staff.

 

Your mom would not want you to be upset by things that were beyond your control. She would want you to go on with your life knowing that you loved her very much. Think of your daughter now.  Say the things to her that you would hope your mother would say to you.  Tell her that when your time comes you know she will do the best she can for you.  If you suffer due to things beyond her control, tell her not to feel guilty about that.  You know she loves you and will do the very best that she can for you.  Maybe by visualizing yourself in your mom's position and your daughter in your position, you will have another perspective.  Would you hold your daughter to such a high standard that you are putting on yourself?  My hunch is that you wouldn't.  

 

My wish for you is the peace of mind that you so deserve.  I hope that it comes to you in time.  Be good to yourself. 

 

 


Oceanbum
Posted: Wednesday, December 19, 2012 10:03 AM
Joined: 3/11/2012
Posts: 433


My Strength,

 

I'm so sorry for your loss and that you are going thru such a tough time. My Mom passed away in June. She was on Hospice care for about 7 months. They were very clear on what to expect. They explained everything to us about what they would do and what we could expect from them. They gave us phone numbers so that we could get in touch with somebody 24/7. They also told us that at the end if a family member could not be with her at any given time they would be sure that somebody from Hospice would be there. Mom would not be left alone for even a second. But we had a family member there every second from the time we got the call. But they continuously checked in on us.

 

My Mom went without food and water for 5 days. But I don't feel like she was starved. It was just the natural process of the body beginning to shut down. We chose not to run an IV. The doctor explained to us that it would just prolong her suffering. In the end it was the best decision - for her.

 

I'm so sorry the circumstances of your Mom's passing is haunting you. I pray that you are able to find peace. Try to focus on what your Mom would want. My husband said to me shortly after my Mom passed - "What would your Mom want for you? Would she want you to go on with your life and be happy? I think you know the answer to that. Your Mom always wanted what was best for you and she still does. She would want you to go on with your life, be happy and honor her memory." That's what I am trying to do with every day of my life. I try to honor her memory in everything that I do. But when I start to feel sad I try to think about her and what she would want for me. MyStrength, go on with your life - be happy and honor your Mom. That's what she would want - for you.  


MyStrength
Posted: Wednesday, December 19, 2012 6:46 PM
Joined: 11/15/2012
Posts: 20


To:  MLB 61 and Oceanbum   

 

Thank you for your comforting words and wisdom.  I am so sorry, but I cant find peace in this until I get answers, mostly from the nursing home.  I dont understand why the Hospice that was going to her at the nursing home, could not provide her any comfort at all, again like I am thinking, it happened too fast, it was like I saw her one day and the next, was a nightmare.  I cant help to think that I should have never taken the advise of the Social Worker at the Nursing home, she is a young girl with an attitude, I never took her advise before, I should have never taken it than , to stop her medications.  Just the phone call that I received from her to take my mother home that night or find another nursing home for her, without giving me a chance to do so, really does not say much for the facility. I have noticed that within the past 4 months that mom was there, the care was not what it used to be. I had to tell 2 CNA's on different occasions, to leave the room immediatley.  One instance the CNA had my mom in the bathroom, changing her into her nightgown, mom was fussy about things like that, making sure all the buttons were buttoned, ect, not that she would take much of their time over it, I guess we all have our little things that we want done our way, so that we will feel more comfortable.  The CNA was actually yelling at my mother, that is when I entered the room, opened the bathroom door and told her to get out and do not come back, to care for my mom, she claimned that it was becuase my mom was hard of hearing, trust me I know the tone of speaking with someone that is hard of hearing and the tone when someone is yelling at the person, this happened on another occasion, the CNA at this time knew I was out in the hallway waiting and the Nurse was next to me with the med cart, but the CNA still yelled at my mom.  On each occasion I contacted the Director of Nursing and she told me that they were taken off my mothers assignment and they would have another CNA from another  assignment care for her.  This does not include the time that my mother told me that a CNA slapped her, I was outraged, my mom always kept quite about things, she never wanted to cause anyone trouble and would hide things from me, like bruising, ect.  I contacted the police to take a report, but the nurses did not know who had my mothers assignment the night before, that is when she said she was slapped.  The police came took a report, and the Nursing Director quite the next day, that shows a form of quilt .!

 

I guess RI just does not have good care, the only place that had wonderful care was St. Antoine, wich had an extensive waiting list.

 

Sorry I am rambling on and on, but loosing confidence in the nursing home, makes me think that their suggestions should be taken with less than a grain of salt.  Even letting me know, in the afternoon, that my mother could not stay their one more night, giving me no chance to find another place.  I was backed in a corner basically and it was just me, my daughter was starting with her stomach pain at the time, and she was very much in denile.  If any of you wonderful caring people would like to write a short letter to them, in concern of the other 180 patients that are there, it is Cherry Hill Nursing Home 2 Cherry Hill Road, Johnston RI  02919.  I know its too late for my mom, but hopefully not for others.

 

Sorry if I repeat myself, I am just stuck on the same issues, when I got to the Nursing Home they were dressing mom and feeding her, she was not screaming and did not appear to be aggitated, I think she knew she was leaving there, as I started packing some of her things, the pictures off the wall, ect.

 

Mom was still able to eat and drink, when I find out that  she is going to a Hospice center, I figured, well anything has got to be better than the care she received in the past 2 months, thinking that they would be able to control her pain and anxiety, which was not handled correctly at Cherry Hill.  I saw her within 15 -20 minues after her arrival, she was already in a johnny, had the medication administers in place on each upper arm, was not given full dose yet, but she was not able to talk, almost like she may have suffered a stroke on the ambulance ride over, could I get a straight answer, no, they did not know, and it wouldnt matter, becuase they would not treat it.

 

The next morning or 2, I called in the morning, that was the only time the md's were there, I wanted IV, I may have changed my mind in a day, but I requested it be given, becuase she was still able to swallow, they owed me the wright to do so, I was my mothers POA, they may of course known that it would not work, or that I would see her in more discomfort, but really, just do it, it she pulled it out, ok, she did not want that, if I saw that she was in any discomfort from it, than I would have asked them to remove it immediatley, but they would not give me that comfort and peace of mind, like I said mom was very fraile physically going into hospice, why did it take 12 days, she wasnt ready, she understood, she must have wondered why me and my daughter were not bringing her a piece of her favorite pies and some cranberry juice, something I did for 5 years at the nursing home, I know how she felt, I always did, she never had to say a word, and the same with my daughter, she had the same perception.

 

Hospice also told us that the body starts showing signs, when the end is near, I told that me and my daughter wanted to be there with her to hold her hand, she had just been turned no-one took notice of the signs they look for, if it wasn't for faith, she would have went alone, they did not have people to sit in with them.

 

Moms Hospice was Phillip Hulitar Home and Hospice on North Main Street in Providence.  If mom would have only lasted 3-4 days, than I would have had to accept the fact that her body and mind was ready to leave this earth, but she had the strenght and hope to hold on for 12 days, that is something I can't forget and hurts more than anything.

 

My daughter and I were so upset to see my mom take her last breath, something we never thought in a million years, would actually happen, that would could not even attend her burial, it was beyond even considering.  I made the arrangements and my brother and his wife came down from Maine.  My daughter thinks that her grandmother is angry with her for not going, but I told her, she knew it would be much to difficult for us, and we were with her at the time when she could possibly need us the most, at the end of her life

 

Hugs and Kisses to all of you, if it were not for all of you, I dont know where I would be wright now.


dayn2nite
Posted: Wednesday, December 19, 2012 10:16 PM
Joined: 12/18/2011
Posts: 3097


Ifyou feel that bad about the care, see an attorney.  I would also recommend calling a funeral home near you to join a grief support group.
Oceanbum
Posted: Thursday, December 20, 2012 8:14 AM
Joined: 3/11/2012
Posts: 433


I agree. Perhaps you should speak to an attorney. Just for your piece of mind. To be sure everything was done as it should have been done. And grief counseling would help you and your daughter work thru not only your grief but your guilt and anger towards everything that happened.

 

I wish you peace, My Strength.


farawaydaughter
Posted: Thursday, December 20, 2012 9:28 AM
Joined: 4/19/2012
Posts: 414


I agree with what you said "you are stuck". Please get some help.
deb97
Posted: Sunday, December 23, 2012 10:29 AM
Joined: 8/7/2012
Posts: 218


My mom died in August under "strange" circumstances.  She was in hospice care for ll months.  My mom's vitals upon entrance to the new ALF were 20 respiration, 123/78 bp, 60 heart rate.   I just found this information in her medical records.  Yet two-to three hours later a new (because she changed facilities) hospice nurse takes her off her scheduled asprin, orders 5 mg. of roxanol, increased doses of haldol gel, etc.  Mom died two days later.  Four hours before she died she was given 90 mg. roxanol during that four hours.

 

I totally understand how you are feeling.  First of all if this was a "for profit" hospice then they are being paid by the government (Medicare).  What I have been learning (researching as much as I can) is that there are many, many regulations that "for profit" hospices must follow because since they are being paid by Medicare, then they are considered an "agency" of medicare and "must" follow Medicare guidelines and regulations and provide certain benefits to their patients.

 

One of the requirements is establishing a "plan of care" and they must include/inform the family.  Hospice is expected to "educate" the family about the dying process.  "For profit" hospice is required to provide a social worker, and also a pastor should one want to speak with a pastor.  That social worker should also place follow up calls to family.

 

Here's the thing that really gets me.  The hospice my mother was in lead me to believe that my mother could not continue to have her primary care doctor (outside of hospice) continue seeing her.  It's called "open access" and I am still learning about that.  

 

I was called only hours before my mother passed and I witnessed the amount of Roxanol they gave her, however, I had no idea what they were doing.  I'd never heard of "Roxanol" before.  FYI, Roxanol is concentrated morphine. 

 

On one hand I do not believe in allowing someone to suffer through the dying process and I would certainly want my mother to be sleeping.  But, and it is a huge "but" - my mother should never have been put on roxanol (morphine) in the first place as she said she didn't have pain.  In fact, she was eating an ice cream soda while sitting next to the nurse who put her on the Roxanol, she was able to walk somewhat with a walker, she could converse and use the bathroom half the time and brush her teeth.  She may have only had a few more weeks, or a couple months, I don't know and they didn't know but it was not the time to put her on morphine.

 

I am just like you - I am shocked, still.   I feel I was duped.  She told me she was giving my mother just a little morphine for comfort.  I now understand comfort to mean "starting the death process" - in my mother's case.

 

I live in Florida and i have found all the regulations on the internet regarding hospice regulations and I have learned that "for profit" hospice is a business entity that I will never, ever trust again.   This is not to say that there aren't many wonderful nurses and aids that helped my mother and they have big hearts; I am talking about the business entity that fails to make sure their employees are following all the guidelines; and I speak of money vs. vulnerable elderly human beings.

 

These scenarios are happening all the time and it's scary.  Our elderly people should be treated with the greatest of kindness and care.

 

I am filing my information/complaint with the government (not the state) as for myself I can't move on until I do. 

 

Deb

 

 

 


DianeS
Posted: Wednesday, December 26, 2012 4:35 AM
Joined: 9/29/2012
Posts: 15


Hi Deb

I never want to hear anyone have to go through what I went through, but unfortunatley it happens, Im glad that you wrote, perhaps we can give each other strenght.  I just went on the the Phillip Hulitar Website in Providence RI and it does not state if they are for profit or not, they take donations, but who knows, although it should be stated.

I can not thank you enough for getting in touch, I was beginning to feel I was the only one, and that has got to be the worse feeling, especially when it comes to loosing someone you love dearly.

I noticed that you stated that your mom was on Asprin only, what stage of Dementia was she in, not that everyone experiences pain, and I was also wondering why she was transfered to another Hospice Facility.

 

Please let me know so that I can get a better understanding

 

I look forward to hearing from you

 

Diane


deb97
Posted: Wednesday, December 26, 2012 6:10 PM
Joined: 8/7/2012
Posts: 218


Hi Diane,

My Mom was never in a hospice facility.  She was in an Assisted Living Facility ("ALF") when she started showing signs of dementia; she also had congestive heart failure.  She went on hospice "palliative care" ll months before she passed.  I do believe some of her dementia was from a combination of medications and congestive heart failure (weakens the body).  It is hard for me to say but i guess mid-late stage.  She always knew me and others around her though, but I think the wear and tear on her body from the medications that hospice was not monitoring took a toll.

 

Actually my mother was on tylenol 2/day scheduled daily for pain which she had in her shoulder, but once they scheduled her on the tylenol a few months before, she never complained of pain. 

 

The asprin she was on was for thinning her blood rather than putting her on coumadin (thins blood) which has serious side effects.  That asprin was helping her heart, in other words.

 

She should not have been taken off the asprin.  She should not have been put on Roxanol (Roxanol is concentrated morphine).

 

I have been living a nightmare because of what happened to her.  I do want to make this clear though:  I do not believe in letting anybody suffer and when it is my time I do not want to suffer and I want to go quickly.  However, hastening a human being's life ONLY because it is convenient is an act I would never want to be responsible for.  And that is what happened to my mother.  I do know this.  The only support I am able to get at this point has been a psychologist that totally supports me.  I also have read the website hospicepatients and it is loaded with information.  A must read if you ask me.

 

Oh, forgot, the reason I transferred my mother from one facility to another was  because I didn't like the way I saw totally helpless people being treated.  She was only at the facility about two months, but two months too long.  Before that she was in a very nice one.  I followed the hospice group unfortunately.

 

Hugs, Deb

 

 

 

 


DianeS
Posted: Friday, December 28, 2012 12:48 AM
Joined: 9/29/2012
Posts: 15


Hi Deb

I completely agree, no want want to have to suffer, I saw my Grandmother suffer, when I was 14 and cant think of it til this day, this was in the late 70's I guess they didn't have hospice back than, she had a major stroke in the hospital, went to a nursing home, they were not checking or changin her I believe it is called Foily, so she could not urinate, becuase it was so badly infected, that landed her back in the hospital, her lungs would fill with fluid and they would have to suction the fluid out, every time she would see the curtain open and the nurses come in with that machine, I could hear her pain.

Hard to believe that there were Nursing Facilities back than that were aweful as well.

 

The one thing that I dont understand, is that to be eligable for Hospice you have to have a life expctancy of 6 months or less, I know that your mom had heart failure and you most likely took her off full code, becuase being fragile can do more damage and cause more pain than it would be to let her go, Im sure you know all of this, you seem very well educated, as many of us have to be, but sometimes we look back and say, how, why? I was looking through my book that I kept daily notes of, we think we have everything under control, but somehow, it takes a turn and we dont know why, from 9/25 to 9/27 the day my mom was sent to hospice, it was like the day in-between did not exist, I cant even remember, and I did not write in my log.

 

If you precious mother only needed tylenol twice daily, than they had no wright to give her Roxinal if it was not needed, that is a disgrace and these people should be reported, like you said to the government, becuase we do no know who monitors these facilities, if in fact anyone does. 

 

I dont want to hurt your feelings becuase I know all to well the pain you are in, I live it day and night, but if your mom was alert and knew most of the people around her and was able to walk and use the bathroom, they certainly had no medical reason to be putting her on Roxinal.  Have you called them and questioned them as to why they did this, unfortunatley we are at there mercy at the point that they are in Hospice, we really dont know what is given and what isnt, what is true and what isn't.  The Roxinal must have really taken a toll on her, yes she was not in pain, but she also was not able to communicate with anyone, becuase it really knocks them out cold and I think that is what Hospice wants, less to bother, just go in and turn them every 4 hours.

 

You sound so much like me, I have been living a nightmare since my mom passed, if it had been of natural causes, I could handle it so much easier, I would still miss her, but that would have been Gods will and it was time for her to leave.  I feel like hopsice forces the process, my mom was not able to communicate with me or my daughter, she could not drink anything, even though she was able to swallow, but not on the meds they were giving her, the Roxinal really dries out the throat , so that they cannot swallow.  I had told them many times to give it a break, I want to give my mom somthing to drink and a little pudding, but they claim they have to follow the doctors orders that is written in the chart, I wanted to take that chart and through it at her.

 

I understand there are some good hospice places, my brothers wife went to one, she had liver cancer, she understood what she had and how it would end, she was in Hospice pian free for 2 days and passed.   That is not comparable to  our situations, but my brothers wife claims it is, than why did my mom, as fraile as she was hold on for 12 days.

 

Im glad to see you are getting help, I havnt had any luck, I could go to a   psychologist, but my daughter is out of work and has no insurance, and I dont want to leave her out, becuase I know she needs help dealing and coping also, I hear her crying at night and their is really nothing much that I can say in all honesty to make it wright.  I have called other hospice facilities and I am yet to hear back.  I had a conversation on the telephone with the Deacon from the place my mom was in and he could not answer one of my questions, I said cant you at least give me your senerio or thery. 

 

One thing that is great for you is you have someone who is completely understanding of your situation, that is such a big plus for you, this person will help you in ways you may think are impossible.  Perhaps this person can work with you on getting the government involved in this Hospice Facility as well as others, we hear a lot regarding Senators, ect, talking about better care for our elders, but they are leaving out, the people that dont seem to have any type of monotoring, just like the nursing homes do on Social Security,Gov, you can view all the ratings and where they are deficiant.

 

Please stay in touch, we have each other, we are both hurting in the very same way. I will check out that website in the meantime.

 

Until next time Many Many Hugs coming your way

 

Diane


whymom
Posted: Wednesday, January 9, 2013 1:30 AM
Joined: 9/29/2012
Posts: 15


Thank you for helping me understand, that my mom was not sentenced to death, but that it was her time. It all happened so fast, I was always on top of things, in Charge, and suddenly I felt helpless and shocked.  My mother had Hospice that used to come to the nursing home, when I signed on with them, they let me know just about everything that I needed, and they told me that no changes would be made, without first consulting with me, I was he POA.  It was when she got sent out to this hopice hospital, it was nice and all, but no, I had to ask all the questions, no-one really volunteered much information at all.  My daughter who is normally quiet, was so up-set and angry with one of the nurses, for not having any compassion.  I felt as I watched my mom, day and night for 12 days, that she was my strenght and without her I had none, perhaps becuase I was so used to being in charge of her health, finances, everything.  Now I feel lost, We may take advantage of their greif support, by having one of the councelors come to our home, as we cannot walk back through those doors

Thanks again for putting it to me the way it should be, maybe someday I will get up the strenght to look up "signs of imminent death",

 

Diane


DianeS
Posted: Friday, January 18, 2013 12:02 AM
Joined: 9/29/2012
Posts: 15


Could someone recommend what type of attourney I would look up for this situation.  I would appreciate your help

 

Thank You

Diane


bela
Posted: Tuesday, January 29, 2013 2:47 AM
Joined: 12/15/2011
Posts: 4122


After my father died i found a nearby hospital that offered grief support:  here are a few links i have found in RI

PS if not luck with the links below, do you live near the border of another state?  You could check services for the other states if you do.

 Friends Way

Friends Way offers support groups for children ages 3D19 and their adult caregivers who are coping with the death of a loved one. The group meets at 765 West Shore Road, Warwick, RI 02889. For more information, please call 401-921-0980 or visitwww.friendsway.org.


AARP Grief and Loss
For more information, visit www.griefandloss.org
.

http://www.zvents.com/westerly_ri/events/show/182459905-bereavement-support-group

Read the Full Page: Providence Grief Counseling Reviews – Top Rated Grief Counselors in Providence RI 
AllAboutCounseling.com
 

http://www.cranstonfuneral.com/copingresources.htm

http://www.health.ri.gov/lifestages/death/about/bereavement/

Bereavement Support Group
Run by Care New England Home Health, Location Varies
(401) 737-6050 or (800) 348-6417

Don't let hospice support groups send you running; perhaps you could use one that was not used by your mother....

http://www.lifespan.org/centers-and-services/rhode-island-support-groups/rhode-island-bereavement-support-groups