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Not a Natural Death but a Caused Death, with-holding Food and Water
Loveumom
Posted: Tuesday, July 9, 2013 2:43 AM
Joined: 7/9/2013
Posts: 16


I feal I am living a complete nightmare, my mom was a part of my everyday, and I knew that eventually I would loose her, she was beginning to not want to eat much and not want to take her medication, but at times she would, it was sort of off and on.  My mom was in a nursing home for 5 years, previous to that I took care of her, she started having falls and her sugar levels were very difficult to control, I had found her passed out from her Sugar being very low several times.  Each time she had a fall, she would go to a nursing home for pt and I would take her back home, her last fall was the worse, and she seemend happy at the nursing home, never asking me when she was going home.

 

Needless to say things went downhill at the nursing home in the 2 years, but I no longer could take her back to hers and my home, becuase my brother had thought he had the property sold, so myself and my daughter had to quickly find an apartment.  Mom asked one month before she died if she could go home, it broke my heart to have to remind her that we were no longer living their.

 

The last couple of weeks at the nursing home, my mom suffered from a Bowel Impactment and a UTI.  The nursing home called me for a meeting, which I had to get my daughter to a doctors appointment and suddenly I got a call that I had to  put her into Hospice or find another facility for her before the day was done.  I thought hospice would help her, she was on a different Hopspice in the Nursing Home which they did her much of no good.

 

They said that she would yell all night, the Bowel Impactment was actually due to their lack of charting correctly, or else it would not have gotten to that stage and she was only on anti-biotics for 1 day, for her UTI, when they wanted her out.

 

I went to the nursing home as I did every night and their was another hospice their to sign her over, the cna's were getting her dressed, feeding her, I remember my mom asking them to please slow down, they were feeding her to fast.  Mom was stilll able to eat and drink without choking.

 

I took a different route to the Hospice Center and when I went in my mom was already changed into a johnny and she had the sub-acute posts in her arms and she was already 75% semi unconcious from the medications that were given.

 

I was told that they would have to keep her that way, in order to keep the pain from coming through and the agitation, she lasted 11 days, she was not ready to die, it was a death that was caused and I feel so guilty that I should have done something, I still to this day cannot figure out what I could have done, my hand were tied, I was her power of attourney and I felt so helpless watching her lay their, not able to talk to her, look into her beautiful eyes ever again.

 

She passed away 11 days later myself and my daughter had just gotten there and I knew something was happening, she passed withing 10 minutes after we arrived.  I went day and night for 11 days, kept speaking to the doctors, telling them I wanted her to have hydration, they said if they inserted an IV she would have pulled it out.  They had an excuse for everything that I would come up with, I wanted her to continue on her anti-biotics, I wanted to know if she would be better if the UTI was cleared and they said it would do her no good.

 

If anyone has experienced loosing their mom in this manner, not of natural causes, but of causes by withholding food and water, which is not a natural death, please I need to hear from you. If my mom had died from natural causes, I could have accepted it much better, knowing that she was called to go to a better place, not sentenced to her death.

 

I have not seeked counceling yet, but I know now that I have to, I cannot accept her death, not the way it happened.  I have reached out to Hospice in Dispear, I cannot return to that building, I cannot even drive near it, but one of the councelors said he would come to me.

 

I dont know how much longer I can go on, the pain is so deep, I would much rather have a knife stuck in me and have my mom back and be able to re-due what happened, to let her have a natural death.


Johanna C.
Posted: Tuesday, July 9, 2013 12:14 PM
Joined: 12/9/2011
Posts: 11599


A soft and warm welcome to you, Luvumom; you have landed in a very safe place to come and talk.  I can see you wrote during the darkest, wee hours of the night when things always seem deepest and most forlorn or frightening.  I am sorry you could not sleep.

 

I want to tell you how very sorry I am that you have lost your beloved mother and I do indeed hear your despair and grief.  I understand.   Your mother died nine months ago, but the feelings seem to be just as raw for you now as they were then.  I so wish there were a way I could take this away for you; but we are at least here to listen and offer our shoulders as best we can.

 

Further, I am also very sorry for the unexpected loss of the house you were living in and the need to swiftly find an alternative living situation for yourself and your daughter; that must have been more than extremely difficult for you on multiple levels.  This too can bring a sense of deep loss.  You have experienced much that was traumatic during the past year.

 

I will apologize up front for the length of this reply, but there is much to be said, and I do not wish to leave anything out if I can help it.

 

I am an RN whose mother had FrontoTemporal Dementia and whose step-dad was diagnosed with Alzheimer's Disease.  We also lost my husband's mother to dementia some years ago.  Like you, I was with my own dear mother when she passed from this earth and she also had Hospice services.  It was both an honor and privilege to be with her in silent, loving presence as her last breath was taken and I am ever grateful I was able to be there.  

 

Before I discuss what happened with your mother and Hospice, I would like to address your situation as it is now.

 

You grief continues to be overwhelming and it appears you may not be sleeping well.  You talk about your despair and guilt and it does sound as thought this is now not a healthy situation for you in it's extremity.  When in such despair and quite possibly even depression, it is almost too much to make appointments and to have sufficient energy to follow through.

 

However, I would feel much more comfortable if you could muster the will and make arrangements to see a Counselor who could help you process all of this and help you to find solace and peace within yourself.  Sometimes, it may even take a little bit of medication on a temporary basis to get one's self through the rough spots.  I also think it would be good to see your Primary Care MD and have a checkup as stress can cause changes in our bodies as time moves on.  You deserve peace and health and I feel sure your mother would also want this for you.

 

You could take a first step and permit the Hospice Bereavement Counselor to come to your house and he/she can perhaps provide you with the name of a good counselor if you do not have or know of one.  Also, you can contact the Alzheimer's Association at (800) 272-3900 and ask to speak to a Care Consultant.  Consultants are highly educated Social Workers that specialize in dementia and families.  They will understand and can speak with you on the telephone. 

 

If you call the Alzheimer's Assn., because of the type of issues you are dealing with, I would suggest calling Monday thru Friday during regular business hours.  This will automatically put you in touch with your local office and then you can ask to speak to a Consultant.  Since they are in your area, they may be able to help by not only listening and giving input; they may also know of counselors in the area if you do not have one.  There are no fees for these services.

 

Do know the Alzheimer's Assn. 800# given above, is a 24 Hour Helpline, you can always reach someone to talk to, 24 hours a day, even if it is in the middle of the night and on any day; even holidays and weekends.

 

One of the most important issues in all that we as caregivers experience, is that what we "feel" tends to color the actualities.  It is so important to try and remember to see our Loved One (LO) NOT as we want them to be; but as they really are.  This is where we stumble and go awry because our "want" is far different from the "what is."  This is not an unusual occurrence.

 

It can be very difficult because we always hope and think there must be something more we could do or should be doing, and even though we could not, and if we tried, it would not have made a difference.  We can still feel tremendous guilt that we missed something, or; if we had "only tried harder."

 

Logic and emotion live on separate planes of existence and one does not always mesh with the other.  Logic tells us one thing; emotion leads us to feeling another.  This happens quite a bit and it takes time for us to work it through to understanding.  Grief also fogs this process.

 

Your mother had an extremely complicated health history and she was complex in her care needs and I can understand from your writing how difficult this was managing it at home.  She needed more supportive care than the home environment could provide.

 

You do mention that she had kidney failure; and even if lab numbers were similar to what they were years before; that does not mean she was not in end stage kidney disease at the end stage of her life.  Especially being a diabetic, kidney disease is often a result of that and it does contribute to the loss of life.

 

Your mother was also a brittle diabetic, was in advanced dementia and had other health issues as well as having gone into renal (kidney) failure.  This at her age and in her state would not have had a good outcome.

 

You mention in your writing your mother's refusal to eat and refusal of her meds.  She was already letting go and readying herself for her final journey and

she was quite appropriately placed in Hospice.

 

Then later in your writing, you mention that she was eating a bit and drinking and she could still swallow without choking, but,  "they fed her too fast."  It is important to know that our LOs can chew and swallow and do NOT choke, BUT they still can easily aspirate food, fluid and saliva into their lungs.  This is known as "silent aspiration."  It ultimately always leads to aspiration pneumonia which often is the cause of or contributor to death in the end stages of disease.

 

At that point, at the end stage, was your mother able to talk and communicate clearly and able to be clear and make sense?

 

Hospice.  Hospice does not come into the care of a patient to make them better by healing them.  Hospice comes when death is the inevitable outcome and the patient has significantly deteriorated to require such ongoing care.  Their job is to give the best quality of life to the life that is left.  Sometimes, at the very last of life, there is only the ability to provide relief from the suffering that is present.

 

Hospice's primary goal is to prevent pain, anxiety and suffering and keep the person comfortable while they are in the last of their days whether that be for several months or several weeks or several days.  Relief is the objective.  IV fluids are not given as that prolongs the suffering.  My dear; if an IV had been inserted for the purpose of giving fluids, it would have been very uncomfortable, could have caused emotional agitation for your mother and her instincts would have been to pull the IV out.  And sadly, it would have made very little difference.  It may have extended her life by a few days or so; but not as you would have wished it to be.

 

Very often, our LO has bacteria in their urine.  This does not always mean they have an active infection.  In your mother's case, even if the UTI had been treated with antibiotics, this was not the driver leading to your mother's death.

 

I would like to suggest that you Google a booklet entitled, "Hard Choices for Good People."  It can explain much about what you saw and experienced.

 

My dear; your mother in effect, did have a "natural death."  No amount of IV fluids or antibiotics could have saved her as she took the last steps in her journey.  That is so difficult to grasp and I know, as I too have been there and because I am an RN, I very strongly felt there was perhaps more that I could be doing - but I realized that was my emotional self speaking, and that it was also not really true and was illogical.  Yet, we are "feeling" beings.

 

I feel or hear so much guilt in your writings.  I so hope getting professional assistance can help you with that.  You did all you could do, you had professionals helping that monitored the condition and kept your mother from an agitated, painful and uncomfortable death.  That was important.

 

You are a loving daughter, and more than anything wanted to protect and help your mother.  Letting go is so difficult.  But you did go the distance and you were there in love when she left to a better place without pain and suffering.  You have no reason for guilt, but it may take guidance from a professional to assist you in  processing that and acceptance.

 

My own mother was placed in Hospice.  My mother had difficulty with "silent aspiration."  I wanted so much "to do something!"  But there was nothing that could be done to really and truly make a difference in the outcome.  Yes; my mother too required medication, but I could not in good conscience know she was filled with anxiety, agitation, pain, etc., and refused medications if it was in Hospice's power to assist her.  It wasn't about me; it was all about Mother.

 

My mother may or may not have known I was there; I sat and held her hand, put cool cloths on her forehead and spoke softly to her, letting her know I was there and loved her very much.

 

Slowly, slowly, her breaths came less and less until suddenly, there was no breath at all.  She had left her struggles behind and had moved on from this place.

 

You have loved well and done well and gone the distance as best you could.  There is no perfection; only the very best you could do under the circumstances with the challenges at hand.  The outcome would have been quite the same no matter how much you could have wished it to be different.  This would have been so whether IVs or no IVs; antibiotics or no antibiotics.

 

You were a good advocate for your dear mother, and now it is time to try and be an advocate for yourself and reach out to those who can help you find peace and solace.  You are deserving of this and as said, your mother would so want this for you.

 

Please do visit as often as you wish and know that we will be here.  I send my very best wishes to you,

 

Johanna C.


MLB61
Posted: Tuesday, July 9, 2013 1:02 PM
Joined: 12/2/2011
Posts: 726


Hi Diane -- Welcome back.  I see from your post on deb97's thread, "It's Not Getting Better", that you made a new profile.  Since your mom passed in October 2012 and you are still having these feelings, you really should speak with someone.  Please call the 24/7 Alz Assoc. Helpline at 800-272-3900 to get some suggestions.  I wish you all the best.
Loveumom
Posted: Thursday, July 11, 2013 5:05 AM
Joined: 7/9/2013
Posts: 16


Johanna

Thank you for your kindness and soft words, your experiences as a Daughter and a Nurse have brought me a bit of peace.  I had previously joined here after I lost my mom, but could not find anyone that I could connect with, no-one that had their mother have to go without food or water for so many days, that it would kill anyone.

I think back on the Terry Schiavo case, not sure if I spelled her name correctly, she was physically fine, but when they stopped the feeding tube and water, she lasted 10 days, she was physically in decent condition, apparently it was lack of brain activity, or no activity, that caused them to come to these measures.  At that time she was sentenced to die or Forced to Die.

I feel the same way about my mom, if her health was really that bad, which physically it wasn't, except for me being told that her kidney level was low, but the head nurse had told me it was not really far off from 2 years ago, that is when I asked for a copy and compared each test to the one that Rhode Island Hospital did 2 years prior. 

The reason I left last time, was I could not find one person in the same place I was, yes their mom or dad may have been on Hospice at the Nursing Home that they were in, where they were familiar, they may have been able to keep their eyes open, they were not taken out of their familiar surroundings and put into a comma, their mom or dad may have passed after a couple of days, which is easier to understand that they were at the end and it was time, for them to go to a better place as they say.  If a person can hold on for 11 days than physically they must be in decent condition, and they are left being Forced to Die and their was not one thing I could do or say to convince Phillip Hulitar different, no matter which md or nurse I spoke to.  I was in a way hoping that by starting a new thread, and basically saying what I did, that maybe their would be someone that went through a similair situation.

I ran into a friend who lost his mom to Dementia, she was on Hospice in the Nursing Home being kept comfortable, but able to speak and eat a little.

I dont understand why when I arrived at the Nursing Home that afternoon, the Hospice Nurse that was signing her on, asked me if I was sure this is what I wanted, I hear those words over and over and over, I told her no, but what were my choices, she said that it would be best because my mom was in pain and very aggitated, than why would she ask me such a question.  I never wanted to have any regrets about loosing my mom, I knew it would be one of the hardest things I would have to go through, but I never throught for one moment that it would ever be  this hard.  I throught about joining groups in my area, but I know I would never find anyone that went through what I went through, my mom was forced to die, becuase they did not know what else to do, if she wasn't forced than why can I not find another person that had the same experience.  My mom was strong and tried to fight what she was being put through in Hospice.  I dont mean to sound angry I am just so angry with what happened and the way that it happened, your letter brought me peace and that is worth more than anything.

Thank you Johanna I am going to try to get some sleep

Diane


Loveumom
Posted: Thursday, July 11, 2013 5:12 AM
Joined: 7/9/2013
Posts: 16


Hello MLB61

Im surprised that you recognized me, I havn't heard back from Deb, she seems as though she is still going through a difficult time also, maybe that is why, it is best for her to talk to someone that can offer her help, which is not me.  I wanted to make a new profile and start a new thread, I havnt been on in a long time, I just kindof put things in a box for a while, I had to, although they come out everynight when I go to bed, during the day, I have been trying to keep my mind a busy as possible, but that obviously is not the way to go about it, and my daughter has been doing the same.

Thank you for welcoming me back, I am going to seek help, I know now more than ever that I truley need it, if I intend to go on.

So good to hear from you again

Diane


farawaydaughter
Posted: Thursday, July 11, 2013 7:11 AM
Joined: 4/19/2012
Posts: 414


Actually, I told you way back when that was the cause of death for my mother, lack of food and water, and that it was a natural death that way. I told you it is called inanition, that is #1 on her death certificate.

 

I hope you can find some help and some peace.


Marjk
Posted: Friday, July 12, 2013 5:47 PM
Joined: 11/29/2011
Posts: 799


Diane,

 

Your mother would have stopped eating and drinking on her own.  That's what happens.  My mother pretty much stopped eating for awhile before she ended up in hospice.  She had passed out in the home and was sent to the hospital, where they ignored her living will and kept pumping her with fluids.  We took her out of the hospital and sent her to hospice.  We (my sister and I, nurses, aides, etc...) tried to feed her and give her fluids, but she refused them.  At one point she actually told me she was thirsty and hungry (this is the part that kills me) but when I brought food and drink to her she refused it.  She put the straw in her mouth and did nothing.  I stayed with her in hospice for over a week and watched her become a skeleton.  She was semi-conscious at first but then was essentially in a coma for about a week.  My sister and I counted the seconds of her breaths.  We kept leaving, thinking she was hanging on for us.  Finally after a week the doctor told us to go home, and we did.  She died later that evening.

 

It is so hard for us to watch.  That is honestly their way of being ready to go.  Two days before my mother collapsed and went to the hospital, she had a little bounce back.  She had already stopped walking and eating and had the head lean and the drooling, no facial expressions at all.  But that day she took my arm and started to swing it to music.  She ate a cookie, she drank some iced tea.  She smiled and she appeared to be having some fun.  We think that was her goodbye to us.

 

My mother could barely get a word out, yet her first day or two in hospice, she was on her side and asleep.  She essentially never woke up while there, but I would sit next to her bed and talk to her.  At one point I leaned into her ear and told her I loved her and she replied, 'I love you too." as clear as day.  That was the last thing she ever said.  For the rest of the week I just watched her whittle away.  As hard as I try I can't get those last days out of my head.

 

My mother's last days were in a coma.  She felt no pain.  She felt no hunger or thirst.   A few days prior to her last days she was on morphine if she got agitated, she felt no pain, no hunger and no thirst.  I listened to her breathing.  I watched her sleep.  She was comfortable.  There was no torture there.  She was ready to go.

 

The doctors and the nurses (at least at my mother's hospice) knew what they were doing.  Hydrating my mother would have been horrible for her.  They did that at the hospital and she still just kept going downhill.  She had a comfortable death, and that's what anyone can hope for.  I wish she never got sick, I wish she was still here even with the disease, but I am glad she is not suffering and deteriorating anymore.

 

My mother's death certificate states cause of death as complications from dementia.  I know that is for sure what caused her death.

 

All the above being said, I understand your pain.  I blamed the home for many things at first, I blamed the hospital too, I was angry and angry at everyone.  People did their jobs (maybe not perfectly, but I am not their shoes).  Nothing at that point would have saved my mother, except for a feeding tube which would have essentially kept her breathing and even more miserable for some time.  She would have had a longer, drawn out death.  Point is, I had to think logically and realize that it was my mother's time.


SueK
Posted: Saturday, July 13, 2013 1:24 PM
Joined: 8/28/2012
Posts: 318


Loveumom - I realize I don't belong on this board quite yet.  You said your mom lasted for 11 days without food.  My mom went on hospice in May, because she was losing weight although she was still eating, and she was getting progressively weaker.  At that time she was down to 102 pounds. After a month she refused to eat.  We are now on day 33 of Mom not being willing to take anything but sips of water.  I've offered her everything I can think of, including a type of cookie that she loves so much that she actually said she wants a package of them in her coffin with her when she dies, and she won't eat anything.  I've been sitting here for over a month, literally watching her waste away.  She's not in any pain, sleeping 23+ hours a day, and peaceful in the little bits of time she is awake. 

 

She was very specific in her health care POA that she wanted absolutely no feeding tube, no IV, no CPR, no anything.  I won't go against her wishes and have those things started, but this is just killing me.  But this is, in a sense, a natural death - she felt that her body no longer needed food, and feeding tubes would be artificially keeping her body going when it was ready to quit.  It's just amazing how long she's lasted.  She asked me 2 weeks ago if she was dying.  I told her that I thought she was, and she wanted to know what was taking so long...

 

 

 

 


Loveumom
Posted: Saturday, July 13, 2013 4:20 PM
Joined: 7/9/2013
Posts: 16


Farawaydaughter Im glad to hear from you, I guess I was so upset at the time, that I didn't realize a lot of things people were writing or telling me, I just could not deal with the fact that my mom had to be taken out of the nursing home, where she was familiar and brought to a Hospice Facility, with suddenly stopping food and water, she would eat some and drink for me in the days prior to them sending her, I know she wanted to go home, but my brother had sold it, I wished that I could have taken her home.

I know that I need to get help, I still feel as though my mother was forced to die, my daughter feels the same way, and she will not even talk to me about it, she said it hurts to much, I know she needs help to, in understanding something that we think and believe was not a good death by Hospice, but a death that was forced on her.

Maybe I am missing something, I clearly cannot remember the last 2 weeks that my mom was in the nursing home, even though I was there everynight after work.  The nursing home had to put her into a Geriatric Chair, becuase she kept trying to get out of bed and out of her wheel chair. It all happened so fast that I honestly don't have a clear mind as to the events that took place, I was her poa, perhaps I cant or just dont want to remember that it was that bad, becuase I must have known she had progressed to her last stage and could not deal with that fact.

I hope you are doing well, you are so strong, I felt so much of my strenght leave me, when my mom took her last breath, I so badly wanted a part of me to go with her,I am not the same person I used to be, I am no longer the person that speaks up and speaks my mind, the nothing can get in my way type of person that I used to be, I lack self confidence in myself, I dont know why, maybe it is becuase I just dwell on this, it is time to get professional help so I can be whole again.

Please keep in touch

Love Diane


Millie263
Posted: Saturday, July 13, 2013 5:41 PM
Joined: 2/21/2012
Posts: 44


lovumom

 

I understand the heartbreak you are feeling.  My mom passed away on September 6, 2012 after 9 years with Alzheimer's.  I was her only caretaker.  I visited her every week for 6 years at the nursing home, I watched over all of her medications, her care, her medical conditions, her activities, etc. in the nursing home.  Last year in July 2012, I spent July 4th sitting in her hospital room babysitting her because she had heart palpitations and was sent to the hospital by the nursing home.  It is a night I will never forget.  There were fireworks going off all over the neighborhood, there was a thunder and lightning storm.  Mom was asking me all night long why she had all these wires on her - blood pressure monitor, oxygen monitor, heart monitor etc.  I told her it was to watch over her.  All night long she took off the wires got out of bed and tried to walk down the hall in the hospital.  I did not sleep all night, constantly had to run to the nursing station to tell them she took off the wires again.  This happened three times during July and August - I was totally exhausted.  On September 1st 2012- it was my 62nd birthday and I was determined to enjoy it and have some fun.  My husband and I went to NJ to celebrate with some friends - four hours away from my home.  We had so much fun for a few days - went out to eat, saw Nik Wallenda show at the Tropicana in Atlantic City.  Then on September 6, 2012, I got the dreaded phone call while I was sitting on Long Beach Island with my husband - mom is going back to the hospital.  I was devastated, we ran back to our hotel packed up our clothes and called the emergency room.  They told me she was in critical condition and most likely she would not survive the night.  I cried all the way home in the car for four hours as my husband drove home.  It was not fair - I took care of her for so many years, and now she was going to die without me there.  I was heartbroken - when we arrived at the hospital - she was already in the morgue.  It was the worst day of my life.  But, after many months of pain and suffering I realized so many things.  I did everything I could for her - and so did you.  There are so many things in life that are truly beyond our control.  When God calls us home - we need to respond.  My mom is now in heaven.  Today would have been her 90th birthday so I bought her flowers and put them in the church where her casket was blessed.  I cried in my car for 15 minutes then I went home and watched the Rolling Stones Concert on T.V. and ate my dinner.  I know in my heart my mom would not want me to suffer because it was her time to go to heaven.  You did everything you could for your mom.  You were there for her - you can't always control how the medical profession treats her.  My mom actually died from internal bleeding caused by Pradaxa - a drug that is used as an anti-coagulant for heart palpitations.  I read on the Internet that thousands of people have died from internal bleeding from this drug.  I did not know that it was dangerous at the time, I did not even know that the hospital had been giving it to her two months before she died.  We are not always in control of every situation.  Do not beat yourself up about this with your mom.  It was her time, and now she is at peace and no longer suffering.  God Bless You.  


deb97
Posted: Saturday, July 13, 2013 7:40 PM
Joined: 8/7/2012
Posts: 218


Hi Diane, I didn't see your post that you wrote me previously.  Just read it.  I have been seeing a counselor since last November and she is terrrific. 

 

I am dealing with a lot of anger issues about hospice too.  One thing is that they are required by Medicare (if they are a hospice paid by Medicare) to fully inform and decide with family about the "plan of care" for your loved one.  Medicare requires that the family receive support and that a social worker (and pastorial services) be assigned to your case before your loved one passes in addition to after their passing. 

 

When they don't do their job and prepare family for the inevitable and what hospice's true part in it involves, they do family a GREAT injustice and they, in my opinion, cause the turmoil, guilt, additional grief, and psychological trauma that you and I are going through.

 

I'm sure you feel like "something is missing"  as in "knowledge" of some kind.  You can learn quite a bit by reading the current U.S. Department of Justice huge lawsuit against VITAS.  I think Bloomberg has a link to the full 50 page suit. Things that happened to my mother are listed in that suit. 

 

I don't mean to sound like I'm not encouraging you to feel better.  I just feel the more people know the truth (if it applies in their case) and speak up, the better off future patients will be.    I am not saying, Diane, that any of this applies to your case.  Only you know.  But, I do feel that you were not guided, informed, or cared for by those that are paid to do so and that is why, I believe, in your case, you are suffering emotionally. 

 

Hugs to you, Diane.   

 

Deb

 

 

 

 


Loveumom
Posted: Sunday, July 14, 2013 2:42 AM
Joined: 7/9/2013
Posts: 16


Mark

Thank you for sharing what you went through with me, I know how hard it is, no-one can know, except for those who have been through it.

I was shocked when you said your mom did a little bounce back, my mom did to, about 1 months before, it did not last long, she talked about taking a plane with her cousin, my mom never had been on a plane, and we laughed as she continued the story, I told her it was interesting to hear a funny and I thanked her for sharing it with me, I knew that would be the last time I really got to talk to her, that is one thing that I saw in my grandmother, she bounced back, she had a major stroke and was in the Hospital and after not eating for a few weeks, she was also at a nursing home, she wanted to eat at the hospital, so my mom feed her pureed food that the hospital provided, I think she aspirated and died a couple of days later, but at least she got to eat one last time.

I dont understand how everything just nose dived so quickly, she had dementia for 5 years, another hospice was going to the nursing home, and they recommended taking her off Zoloft, Namenda and Aricept, because she was not taking much of it anyway, I agreed, and that is when I noticed a rapid decline, I begged them to put her back, that it was keeping her mind within some sort of order, no yelling, screaming, aggitation so bad, she would actually take her clothes off and try to rip her skin, she was trying to get out of her own skin.  I blame myself, I should have never agreed, she did not want to take her medication, so she was not getting much, but I should have let that be her decision, which she was leading up to, but I may have had her a little longer.

Mark I blame myself for so much, part of it is becuase I really didnt understand what was happening and why, the hospice that went to the nursing home, was not very good, not much was explained to me, and I didnt know what to ask, becuase I had not been through it before.  Another thing I dont understand is when the Home and Hospice took over, why the case worker asked me if I was sure this is what I wanted, when I asked her my choices, she said this is best for her, she had been with my mom a couple of hours and saw that she deserved an easier death.  I thought she could eat a little in Hospice, they have puddings, applesauce, ect, but they had to keep her so sedated, that it was not recommended after the 3rd day, becuase she would asperate and that would cause her more pain.

In the end as you said, it is something we will never forget, they are so helpless, the person in our life who was the strongest, was now so weak. when she passed I felt so much of myself go with her, it was just me and my daughter the entire time, I remember saying where is she where did she go, why cant I see her, It took me over a half hour to leave her.

My daughter also feels hurt and guilty, she feels as though her grandma is mad at her for not doing somthing, she said she saw her one night at the foot of her bed and she did not say anything to her, but gave her a mad look, my daughter reached out for her and she slowly dissapeared.

I want to thank you for sharing your experience, it has helped me, this time around, I am saying what I have been feeling, I havnt been able to grieve yet, becuase up until now, I havnt been able to accept


Loveumom
Posted: Sunday, July 14, 2013 3:07 AM
Joined: 7/9/2013
Posts: 16


Dearest Sue K

You belong here, just as much as myself and everyone else.  I wish I did like you and looked ahead to see how people feel, how they handle it.  I am so sorry to hear what you are going through, I know that nothing in the world can make you feel better as things are now.  I just pray for you and your mom, I hope that you have a good Hospice that is supporting your emotions and that you have family with you.  I didnt have either, but I pray that God gives you the strenght to take this, in a sad way we are lucky, becuase we get to say everything we want before they go. So many people die of heart attacks, my dad did young, I didnt get a chance to say goodbye, to let him know I loved him.  

You are going through a lot for a long period and we here all know how emotionally exhausting it is for you, I hope you stay with us, I feel as though we are all family, we have all been down the same path, the same emotions, feelings, thoughts.

Your mom really is a character wanting her favorite cookies with her and asking you what is taking so long, this must bring you peace, knowing that she knows and accepts it. I dont know if my mom knew, I did tell her each day that she would not have to suffer anymore, even though her suffering was for a very short time, she may not have even remembered it, I dont know they say their mind function somewhat comes back for a short while in this way.

I pray that God gives you the strenght, peace and closure that so so much deserve

Sue

Love Diane


Loveumom
Posted: Sunday, July 14, 2013 3:29 AM
Joined: 7/9/2013
Posts: 16


Millie

Thank you for your kind words and understanding, I have to say that so many of the new people that I have been hearing from this time around, after giving up months ago, have helped me out tremendously, helped me to understand that I was only doing what I was told, would be the best thing for my mom, even though the weeks following the Home and Hospice seem like a blurr.  I usually write things in a Journal Book that I kept just for her, any changes in meds, weight, ect, but somehow, the 3 weeks before her being sent to Home and Hospice, those pages are blank, maybe becuase I was, her Dementia was so slow progressing that at times my daughter and myself were not even sure if she had it, the only thing, was that she became quit, and her short-term memory was not good, but hey sometimes mine is not either.

Dont blame yourself for not being with your mom, again another fault in this horrible health care system, especially for the elderly, for not letting you know that she was on this medication, shame on them.  They say that sometimes a family member that is dying will either wait for a person, or wait until that person is not there, to make it easier in both ways, how they get to choose I couldnt begin to tell you, hospice did tell me that they had one lady that waited 28 days for her ex-husband to go see her and give her permission to go to heaven, shortly after he left, she left also.

We all have out heartaches to carry, I could not even go to my moms services, it was all to much, I arranged them and my so called brother and his wife came in from out of state, their was no-one else, so I had it private, with a small cereomony at the Cemetary Chapel, I havnt been to the cemetary, I cannot even drive near it, I hope someday I will be able to, I know how important it was to her to keep my dads grave, they are burried side by side.

I cannot believe that the hospital would leave it up to you to watch your mom, one of the hospitals, here in RI, they have what is called a 24 hour watch, people go in 4 hour sessions, and sit in the room, they read a book, watch TV, but they are basically there to watch that this does not happen.  This must have been a nightmare for you.  You were a wonderful daughter.

I would like to ask one question, has your mom ever visited you, in Spirit, I am still hoping and praying that it will happen, I know it does not usually, but with some it does. The apartment that we moved into 2 years ago, my daughters bedroom used to be the elderly man that passed and she used to see his shadow on the wall at night, I told his wife, I hope your husband knows where you are, my daughter sees him and tells him he can have his room back, she actually does not like it, to small, but his wife said his bedroom was his palace.

Blessings to you Millie, Please stay in touch

Diane


Loveumom
Posted: Sunday, July 14, 2013 4:03 AM
Joined: 7/9/2013
Posts: 16


Deb

I am so glad to hear from you, as you can see I gave up the last time, I just couldn't connect myself with anyone, I felt as though I was the only one going through the most horrifying thing anyone could have experienced.  You are correct, Hospice did me no justice, my mom was transported their from the nursing home, becuase they could not control her pain or aggitation.

When I arrived at hospice, I found my mom in a room with a Johnny already undressed and sedated, no-one sat with me, to go over a plan, help me to understand what and why this is happening, why my mom was in pain and had to be on Morpheine and 2 meds for aggitation, why she was basically un-reposive.  No-one ever came in, I went every afternoon, than would go back and sleep for an hour, being emotionally exhausted, than go back at night, no one ever consoled me, it was just me, I left it up to my daughter if she wanted to come, she started going after a few days, when her vitals were not good, it was to hard for her, my mom and myself raised her,, she was her second mom and her grandma.  No-one ever offered any infomation.  My daughter was so up-set on night, becuase the nurse at the desk just kept saying yeah I know, like she didn't care what we were going through, my daughter is very quite, but she told her, knowing I was to weak, and that nurse did a 360 turnaround. 

Still no one ever came in the room, no priest, no councelors, no pastors, just the nurse that would keep giving her those darn needles, through the plugs in her arms and the people that would come and turn her, it was like they were all mute.  I hate that place, we cannot go anywhere near it.  I had to take my daughter to a hospital close by and had to call the hospital for directions to take so we would not have to see the Home and Hospice building.

Another thing I find strange is I told them anychange call me immediatley, the change occured just as we walked in the room, she had just been re-medicated and turned, 2 minutes later she was gone, their was a young nurse that came in after I told them her breathing changed and listened to her heart, she had tears in her eyes as me and my daughter were holding my mom, saying every last word we could, and than they closed the door and left us with her, which was fine by me.  The lady next door also passed wright before my mom, somoneone accross the hall a couple of people on 2nd, the last thing we wanted to see were body bags going by us, it was like they were clearing the place out for more, that was the impression we got, I didn't even know if my mom  had her last rights, they said they believed so.  Yes Deb, if they would have handled things with compassion, they were billing my moms medicare, and explained to us, how she may feel, I was so concerned about her being hungry and thirsty and all I could do was swab her mouth.  I had to ask for a CD Player several times, for comforting music for my mom.  Like I said in the beginning of the 2nd time joining here, I would rather have a knife stuck in me than to have to go through this emotional pain, not knowing if it was the right thing to do, did I have options, this should have been explained.

You did the right thing by going to a councelor right away, I am going to make some calls this coming week, to get started with one, I just hope it is someone that understands, i also have to find help for my daughter, she has no insurance so it will be difficult, but I am afraid that she may harm herself, she blames herself also.  

Believe it or not, I did call their one night a few months ago, looking for pastorial help, I wanted to know if my mom was really in heaven and if their was really such a place, I know no-one can answer that, but I thought pastors, were trained to be able to give some kind of comfort.

Deb please stay in touch, I am so happy that you are doing somewhat better, I just wonder if that day will ever come, I guess I have to accept first, before I can even begin to grief in the proper manner, not just cry becuase of what happened to her and the way it happened.

Love your Friend   Diane


Millie263
Posted: Friday, July 19, 2013 5:44 PM
Joined: 2/21/2012
Posts: 44


Lovumom:

 

Yes, I understand that you were not "ready" to let your mom pass away.  I was not ready either.  After my mom died, I found out that she died from internal GI Bleeding, it had nothing to do with her Alzheimer's Disease - it was a VERY BAD DRUG THAT KILLED HER.  I am now in contact with an attorney who told me there are over 1,100 claims for death -due to a drug called "Pradaxa"  it is a anti-coagulent - usually prescribed for patients who have rapid heartbeat, or, irregular heartbeat, and what is does is cause massive, sudden, internal gastro intestinal bleeding.  I did not know this until after my mom passed away.  Please let all the readers on this website know that Pradaxa is a DEATH DRUG AND THERE ARE THOUSANDS OF DEATHS FROM THIS VERY BAD DRUG.

 


Millie263
Posted: Friday, July 19, 2013 5:54 PM
Joined: 2/21/2012
Posts: 44


Lovumom:

 

Yes, I understand that you were not "ready" to let your mom pass away.  I was not ready either.  After my mom died, I found out that she died from internal GI Bleeding, it had nothing to do with her Alzheimer's Disease - it was a VERY BAD DRUG THAT KILLED HER.  I am now in contact with an attorney who told me there are over 1,100 claims for death -due to a drug called "Pradaxa"  it is a anti-coagulent - usually prescribed for patients who have rapid heartbeat, or, irregular heartbeat, and what is does is cause massive, sudden, internal gastro intestinal bleeding.  I did not know this until after my mom passed away.  Please let all the readers on this website know that Pradaxa is a DEATH DRUG AND THERE ARE THOUSANDS OF DEATHS FROM THIS VERY BAD DRUG.

 

 


Millie263
Posted: Friday, July 19, 2013 5:59 PM
Joined: 2/21/2012
Posts: 44


l
lovumom:

 

Yes, I have had a visit from from my mom.  It was very ironic because it was Saturday night - the night before "Mother's Day".  I was sleeping.  I had a dream that she was there with me - we were in a store - where I shop all the time for earrings and jewelry - Kohl's Department Store.  I was looking at the jewelry - all of a sudden-she was there - looking at me with a smile on her face - she said to me "what are you doing", I said, I am shopping for earrings" - she smiled and looked very happy".  Then I woke up.  This one one day before Mother's Day.  I believe that she wanted me to know that she was happy in heaven.  I am so relieved that I received this beautiful message from her.  Have no fear - your mom is near.  Love Millie 263


Millie263
Posted: Friday, July 19, 2013 6:27 PM
Joined: 2/21/2012
Posts: 44


lovumom

 

I understand your feelings, but remember we have no control over what happens to our loved ones. God determines what happens.  It has NOTHING TO DO WITH ANYTHING THAT YOU DO, HAVE DONE, OR WILL DO IN THE FUTURE - WE ARE NOT IN CHARGE OF OUR LOVED ONES PASSING.  MILLIE 263


Millie263
Posted: Friday, July 19, 2013 6:30 PM
Joined: 2/21/2012
Posts: 44


mlb61

 

I think you have the wrong person on your web site.  Please read my post and remember, my post is Millie23 not any other post.  Thank you. 


Millie263
Posted: Friday, July 19, 2013 6:39 PM
Joined: 2/21/2012
Posts: 44


loveyoumom

 

y
yes, my mom visited me.  The day before mother's day.  Yes, they are in heaven.


MLB61
Posted: Saturday, July 20, 2013 9:18 AM
Joined: 12/2/2011
Posts: 726


Hi Millie263 -- I was referring to "luvumom" who made a new profile, not you.  That's the "Diane" I was addressing.  Sorry for the confusion.
Loveumom
Posted: Tuesday, July 23, 2013 3:22 AM
Joined: 7/9/2013
Posts: 16


Hi Millie

I havn't been on in a couple of weeks, doing some soul searching, spending more qality time with my daughter, she is 26 and also took her Grandmother's passing with a lot of difficulty, she will not talk to me about it, she says that she won't go there and can't, but I hope someday soon, I can talk her into speaking with someone else.  The emotions are still much too raw I think we may both be suffering from PTSD, maybe it was not a good idea to stay with mom for as long as we did after she passed, as another friend on here told me, that I may be suffering more than I should because we were not provided with the support and knowledge that we should have been, before her passing, she is dealing with a very similair situation, and this just makes it 100 times harder, when you know that death will be the final destination, but you really dont understand why?

I am so sorry to hear that it was a medication that took your mom, that must have been difficult for you to hear, truly I am so sorry.  It is difficult with the medications, we try to do our best to know which medications are given, but we do not know the hidden dangers, you had no way of knowing, none of us do, we ask about the medication, look it up online to read about it, what it is used for, the benefits, ect.

Im sorry that you were not there when your mom passed, as you had planned to be, but one thing that I learned in Hospice is that much of the time, they choose who will or not be with them, I know that my mom would not have left without saying goodbye, I can only wish that we arrived earlier that Sunday, she passed within 7 or 8 minutes of us being there, I immediately noticed a change in her breathing, but if we had arrived earlier, she would have left this world earlier, I just knew she would not leave me and my daughter without saying goodbye, we were all each other had, just the 3 of us.

Millie I am soo happy to hear that your mom visited you,  and that you really felt it, that she was letting you know she was just fine, that must have been one of the happiest days of your life, I am so thrilled that you had that wonderful experience, that is what helps us to go on. I said to my mom, starting a couple of days before she passed, that she would have no more suffering and pain, that she was going to be with my Dad and her family, and please mom, send me a sign to let me know you are ok, I will be waiting.  It is 9 1/2 month's I dont know what I believe anymore, I am so confused, I want to believe as I always did, but when it really hit's in such a manner, I can remember saying to my daughter when my moms heart stopped, the nurse was alerted by me to come into the room, I said where is she where did she go, that it hit me hard, my faith, what have I been believing for 51 years and 2 days, she passed 2 days after my birthday.

Thank you Millie for sharing your dream and the visit that your mom made to you, to let you know that she is ok, I am still waiting, I dream about her often, more so lately, but I don't feel as though they are dreams that she is visiting me in, I guess you only know when you have experienced it and I can only wait until she visit's me, in a dream, or any other way.  I don't know why heaven is such a mystery, why no-one know's, I know I am thinking negative and maybe this is a reason that I have not gotten a message, but I am so happy for you.

Love your Friend Diane


Loveumom
Posted: Tuesday, July 23, 2013 3:42 AM
Joined: 7/9/2013
Posts: 16


Hi Mark

Thought I would stop by and see how you are, I just re-read your message you wrote to me and seems like we have experienced a lot of the same, in our moms death, sitting and watching trying to talk, even though they were not able to respond.  It was not until my daughter came with me that I had learned something, I don't think she was aware of it herself until she came to see her Grandmother in Hospice.

My daughter was talking to her Grandma in a very simple way, that I should have realized, but I am happy that she had the opportunity to do, she would ask her Grandma a question, for instance, Grandma, do you know how much I love you, if you do just squeeze  my hand, and my mom, with her eyes still clothes, no movement except she for movement in her hand that my daughter had in her hand, she continued talking to her that way for about an hour maybe a little longer, we went   back that night and things were not the same, I guess it was a special time that just my mom and my daughter had, which was 4 days before she passed.

I cannot believe I hadn't thought to do that, as Im sure many of us didn't, it was just so magical to see, how my daughter was communicating with her Grandma, they had been close, since the day my daughter was born, we lived with my mom and took care of her, until it became a danger for her to be at home.

I remember on my moms death certificate, their were 3 causes of death listed, the first being anorexia, I was shocked, how could they do this, my mother was far from anorexic, I will take this up with them one day soon, I know it cannot be changed, but I would like an explaination, that made me feel horrible when I saw that.  I remember you stating that your moms said complications from Dementia, which is the actual cause and is acceptable, just shows you how careless and carefree they can be, which is why I am having such a hard time with accepting what happened, even though I know now, that their were no choices, it still makes it so darn difficult, when a person in this situation, is not guided through the process, as Hospice is paid to do.

I hope you are doing Ok Mark

Your Friend Diane


Loveumom
Posted: Tuesday, July 23, 2013 4:01 AM
Joined: 7/9/2013
Posts: 16


Hi Deb

I havn't been on in a couple of weeks, taking some time to try and heal, but I feel like I am getting know where.  I hope you are doing better, I have learned so much from you about Hospice, I also read the suit that is being filed, this Hospice is not in RI that is where I am from, but I would like to know what I can do, to see that this does not happen to another person, if I can prevent it.

You are so correct, that is why it is even more difficult and hurtful for us, becuase we were not guided, spiritually and psycologically through the process, we were not informned on what to expect, why this was happening, why it was the best way, why anything, I sat alone for the first 6 days, no-one ever came in my moms room to talk to me, I had to ask if she was given the last right's and one Councelor, who I had little contact with said I believe so, than quickly, caught herself and said, yes, yes she was and apologized.

I hate it that their were 3 causes listed on her death certificate the first one was death from Anorexia, I am so angry with them , they will have to answer to me soon, my mom was not Anorexic, I should know I only lived with her my entire 51 years and 2 days of my life, she passed 2 days after my birthday.  It naturally should have been listed #1 Death from complication of Dementia, or Dementia death resulting.

This really upsets me.  I have 3 more month's to get free services from them, I cannot and willnot go their, and I always wondered, why can I not go and get group counceling that they offer, specific to Death of a Parent, why can I not even go anywhere near the building, know I know Deb, thanks to you, you helped me to make sense of these feelings,  feelings that I before did not know where they were coming from.

I hope you are doing better, I am seeing my psycologist Thursday, hopefully she can see me tommorrow, I have been seeing her for 7 years, at the time that my mom had to go into the Home, if I can call it that, although they were pretty good up until the last 6 month's that she was there.  I need her to refer me and my daughter to Specific Grief Counceling, which I thought I would have sought out by now, but my daughter had been out of work and has no health Insurance, I don't want to go for counceling, unless it is a place that she can go to also, although, she cannot talk to me about it, she is very hurt also, it is too painful for her, I am hoping that she will open up to someone else.  I did let her know the information that you shared with me, that it may be more difficult, and my daughter knows first hand, she had to tell the nurse that was sitting at the desk, to stop shaking your head yes and no, this was her Grandmother, and she had seen enough of that at the nursing home, this is the last place she should be seeing it, well that nurse that was their everynight did a 360 so fast, she than started to come into the room once each time we were their for any questions or concerns.  

We should have, like you said Deb, been receiving Spiritual and Psycological Care through one of the worse things we can experience in our lives

Would love to hear from you

Your Friend Diane


Tomc5592
Posted: Saturday, August 3, 2013 5:38 PM
Joined: 11/17/2012
Posts: 1203


Loveumom wrote:

Hi Deb

I havn't been on in a couple of weeks, taking some time to try and heal, but I feel like I am getting know where.  I hope you are doing better, I have learned so much from you about Hospice, I also read the suit that is being filed, this Hospice is not in RI that is where I am from, but I would like to know what I can do, to see that this does not happen to another person, if I can prevent it.

 

You are so correct, that is why it is even more difficult and hurtful for us, becuase we were not guided, spiritually and psycologically through the process, we were not informned on what to expect, why this was happening, why it was the best way, why anything, I sat alone for the first 6 days, no-one ever came in my moms room to talk to me, I had to ask if she was given the last right's and one Councelor, who I had little contact with said I believe so, than quickly, caught herself and said, yes, yes she was and apologized.

 

I hate it that their were 3 causes listed on her death certificate the first one was death from Anorexia, I am so angry with them , they will have to answer to me soon, my mom was not Anorexic, I should know I only lived with her my entire 51 years and 2 days of my life, she passed 2 days after my birthday.  It naturally should have been listed #1 Death from complication of Dementia, or Dementia death resulting.

This really upsets me.  I have 3 more month's to get free services from them, I cannot and willnot go their, and I always wondered, why can I not go and get group counceling that they offer, specific to Death of a Parent, why can I not even go anywhere near the building, know I know Deb, thanks to you, you helped me to make sense of these feelings,  feelings that I before did not know where they were coming from.

 

I hope you are doing better, I am seeing my psycologist Thursday, hopefully she can see me tommorrow, I have been seeing her for 7 years, at the time that my mom had to go into the Home, if I can call it that, although they were pretty good up until the last 6 month's that she was there.  I need her to refer me and my daughter to Specific Grief Counceling, which I thought I would have sought out by now, but my daughter had been out of work and has no health Insurance, I don't want to go for counceling, unless it is a place that she can go to also, although, she cannot talk to me about it, she is very hurt also, it is too painful for her, I am hoping that she will open up to someone else.  I did let her know the information that you shared with me, that it may be more difficult, and my daughter knows first hand, she had to tell the nurse that was sitting at the desk, to stop shaking your head yes and no, this was her Grandmother, and she had seen enough of that at the nursing home, this is the last place she should be seeing it, well that nurse that was their everynight did a 360 so fast, she than started to come into the room once each time we were their for any questions or concerns.  

 

We should have, like you said Deb, been receiving Spiritual and Psycological Care through one of the worse things we can experience in our lives

 

Would love to hear from you

Your Friend Diane

 

I think in this case, Anorexia refers to lack of appetite and food which is a medical condition. Anorexia can be medical (your mom), or psychological as in Anorexia Nervosa which is an eating disorder.


The death certificate would say Anorexia Nervosa if she had that eating disorder.