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My husband died in march he had Alzheimer's and Parkinson's my one daughter has said that hospice starved him to death. That really hurts me and makes me feel I was wrong.
I'm so sorry to hear of the difficulties that you and your daughter are having. Hospice is a wonderful resource and they don't starve anyone to death...you know that. My mother is under hospice care and they are always encouraging her to eat, but they won't provide it artificially (via eating tube). My mom has never wanted artificial support so I believe that I am doing what she wants. Your daughter has to deal with her own feelings, but please don't second guess the love and care that you have provided.
I think it is common to feel this way. You feel like you are giving up on them to admit they are dying. I think it is needed though, to accept, to let them go graciously. Not that we want to PUSH the issue, but acceptance is ok.
Thank You my daughter went to see her dad everyday either before or after work. she was holding his hand when he died I wish it had been me but am glad it was her my husband died on mar 16th her birthday is june 16th which is fathers day, she was his father day present born 3 months early weighing 4lbs he always said he best one
Thank you, Marco40. I just got a call from hospice advising that my 68 Y.O. husband (young onset AD) is being allowed to stay in hospice "for now". He was re-evaluated this week and the nurse practitioner said he definitely qualifies - Stage 7D. Apparently, Medicare is already backing off the exclusion of dementia (AD) w/o a co-morbidity. But who knows. This hasn't even been published yet. But "failure to thrive" is no longer a diagnosis that will allow someone to enter hospice, even though all terminally people fail to thrive in some manner.
Momobrien, it's called Obamacare, and how these once vibrant people are viewed as "has beens" or "cast-a-ways". Most people do not understand what is going on in our society, nor have a clue as to so many benefits that Medicare once paid...that are now being eliminated, systematically eliminated. And the hospitals, re-hab facilities, are all effected. Medical facilities are closing down, and employees are being let go. The Govt. has a cash crunch, but the politicians all have the best benefits on planet earth. Gee, wonder how that all works.
And for all of these people that are elderly, that helped to build this country...(the WWII and other veterans) that fought and died for this country...to see how their peers and other elderly are now being treated? There are always abuses within systems, but everyone needs to get educated and look at the system..Obamacare, and where it is headed. There are some 15 million "UNPAID" caregivers for Alzheimer's people. That is 15 MILLION UNPAID CAREGIVERS at an economic cost of about $200 BILLION. Where would these people be if not for these caregivers? I have a few suggestions; a) convert all of the Presidential libraries into care facilities for starters..and stop building them until we get our debt under control b) ask all the Govt people with the best health insurance to kick in and help the elderly c)contact your congressman or women and State Senators to voice your outrage.
Hospice provides, by and large, a great and valuable service. Yes, there is a great abuse from all types of healthcare providers, and abuse will never be completely eliminated. However, we can start with basics, and to help the elderly pass on with dignity and respect.
And, Momobrien, my heart goes out to you. You have to try and call/contact people that can give you some help. You are going to need help. Hang in there the best you can. My thoughts are with you. Marco40.
It's wonderful that your father was able to benefit from hospice care. As stated by C. B. Bursack, the hospice nurse did the right thing. Unfortunately, The Center for Medicare and Medicaid has now decided that it's necessary to have a co-morbidity along with dementia or failure to thrive in order to qualify for hospice. I heard this about this a week ago from the wonderful hospice nurse and was handed a letter yesterday. My husband has advanced Alzheimer's disease and cannot do anything at all for himself. But because he does not have a co-morbidity, he's no longer eligible for hospice. The hospice people do not like this at all, but due to abuses in the system by some of the larger hospices, Medicare is simply cutting off this whole segment of the terminally ill population. I posted the letter as a discussion topic as well.
First, I send my condolences to you. You are still grieving it sounds like, and you are going to rehash all the "could have done this" scenarios in your head. Let everything go for now, and concentrate on your own healing process. It will take as long as you take to grieve and do not let anyone try to rush you. Be strong for yourself, and know whatever was done, was done for his best.
Just to add my voice to the others here. Based on your husband's diagnoses, hospice care was likely the best choice for both of you. Near the end of life, people with advanced Alzheimer's disease stop eating, and so the decision not to start tube feeding your husband was perfectly in line with this course. It is how the body shuts itself down and, from my understanding, does not cause suffering in people in the final stages of life.
I do not want to market my book, "Handbook for Mortals: Guidance for People Facing Serious Illness," but you can read it for free online. We devote an entire chapter to this issue, of deciding not to pursue life-prolonging treatments.
I agree, your daughter may be using this as a way to express her own grief and sadness. Families can really be torn apart by their experiences near the end of life. Your hospice team is likely to offer some sort of bereavement counseling. Perhaps you could attend a few sessions, for your own peace of mind, and for some suggestions on how to overcome this issue with your daughter and preserve your relationship with her.
Think about alternatives to hospice. Could he have been cared for as well without them? How about if he had been in the hospital instead?
My father, age 85, had been accepted to go to a hospice facility but the hospital kept making excuses why he couldn't be released. As a result he wasn't given suitable medications to make him comfortable and passed in an extremely agitated state. That was over nine years ago and it still breaks my heart to think about it.
You did the right thing and your conviction of that should strengthen you in the face of your daughter's irrational emotions. Please get grief counseling or go to a support group, whether your daughter joins you or not. Our local hospice offers free individual counseling which I used to great benefit after Dad died.
You each need to process your sorrow in ways that work for you, and for however long it takes. Perhpas your daughter is not ready to accept help. Bless and comfort her and at the same time protect your own fragile state. May you remain in touch with the source of everlasting peace within us all.
Gabbie, for the most part, I agree with those that have responded. Not knowing the involvement of your daughter had on a day to day basis, it is a little hard to understand the dynamics, and of course, your relationship with your daughter and her relationship with her Father. If she was somewhat of an outsider, ocassionaly looking in / stopping by, she needs to a step back. There are a lot of Monday morning quarterbacks. You and your daughter need to put your arms around each other, and embrance your love. Your daughter is entitled to her opinion, and you need to talk through, and with guidence from others, be it Hopice Grief Counseling support groups, or elsewhere.
I will say however, that there is a difference between one Hospice and another Hospice..and clearly can be a difference in thinking or philosophies or level of care between a Case Nurse and/or Medical Director from one Hospice versus another...no different than one Doctor's opinion versus another. I personally switched from one Hospice organization to another, for lots of reasons, primarily because a) the Hospice Nurse didn't show up as scheduled and never agologize, b) equipment and meds didn't arrive when promised c) suggestions to "eliminate insulin doses" d) Nurse and home health aide showed up with bad colds...etc...and I didn't need more problems. Between the first Hospice organization and the one I switched to, my Mother was under Hospice care for one year, and I was 24/7. I can only tell you that in my situation, my Mother most certainly had a "good" quality of life for nearly seven months beyond, and after my switch from one Hospice to the other. Within the last couple of weeks, my Mother started to refuse food, and there was no pushing her. It was apple sauce, water and comfort meds. (no feeding tubes).
Bottom line is that you did the very best you could, so please don not feel guilty about anything. And, I don't know your daughter's degree of involvement. However, anger is a part of the grieving process as well as a multitude of other emotions. Do not deny your feelings, and/or anyone else's feeling, rather discuss them, and with help from compassionate support groups and counseling. There are no magic answers as we are all different in how we process a loved one's passing.
You did the very best you could and watched over your husband with great pride and love. Who could ask anything more of you and/or point fingers. No one.
As you may already know . A doctor takes a oath , First do NO Harm. Feeding your husband may have caused him more Harm. My Father died after a 26 year battle with H.D. & C.H.F.
The last 72 hours with the Cheyne Stokes , I could not handle it. I call it racking death breathing. They were suctioning him but the last 24 hours it would caused him more harm and discomfort , so they stopped. In the end Life is truly about one thing and one thing only. Who is willing to sit at your bedside as you die.
Your Husband had to be Terminal to have Hospice in the first place . With 6 months to live. My Daddy ( a Doctor himself for 31 year ) was gifted by Hospice. Each 3 months you and your case are looked at , very closely. Then given another 3 months. My Daddy was given nine months of this Gift called Hospice. Its end of life care and they are the BEST at what they do . They give palliative care ( end of Life Care) They do not starve a patient. When my daddy was on the unit here in Las Vegas they would give him anything he wanted. Most of the time it was a bowl of cereal with very COLD MILK. We only have a 12 bed unit with a turn around 5 days and if you do not die you go back to where you were once your medially cleared ( as in symptoms managed). They adored my Daddy ( plus he was a doctor himself ) so they extended his stays . They will always hold a special place in my heart. The men and woman that do this at home care or on the unit are made of something beyond human. I have seen their wings many-,many times. They were wonderful to my Daddy and our family. When a loved one dies, you always want to blame. Your daughter is going through the normal stages of grief. Time is her friend. I lost my Beloved Cut Man ( my daddy ) as I liked to call him always in my corner for 49 years 9 months ago. I still have very-very bad days. Plus now my Mummy has had to be put in a group home for ALZ.. So I 've lost both my parents in less than a years time. My Mummy is still alive ( but she is not the Mummy who raised me anymore and never will be again). I'm not looking forward to Fathers day this year at all. It was a honor to be his Daughter for 49 years. I like to say I will love my Daddy forever and 1 day.
Your Daughter needs a support group or to heal from this pain of losing her Daddy in her own time and way .
Prayer's to you both. Please don't ever think Badly of Hospice , they are a GIFT to the dying and we so need them.
I lost my husband last year, he was 56. It had happened so suddenly know one knew there was anything wrong. Having said that there shouldn't have been any room for blame on any one. But I to have a daughter who chose to very nasty and full of blame. I know that she was in shock and suffering as we all were, but she lives 3,000 miles away and I think that her lashing out was her own guilt for not being here. People do strange things when they are grieving but as time passes things will get better. You made the best choice possible for your husband, he was suffering no doubt and now he is at peace. You will get past this milestone. All the very best to you and your daughter.
Dear All, Hospice is won of the best places for persons who are in the ending parts of their lives. They care for people who most could not. We had my Mother-in-Law in a regular hospital with cancer and a bowl constriction. She suffered the most from dry mouth but the taste of food had become foul to her before the obstruction was found.Forcing food when the person does not want it or really need it is cruel and hard on every one. If your daughter wants she should go to grief counseling it might help. This was the Dad whom she (in the back of her mind) thought would live for ever and now he is gone.Both of you will come out on the other end , let her yell untill the feelings are gone.Hugs and Kisses!
I'm sure you have some hidden self-blame (for lack of a better word) of your own, too, gabbie...it would be nearly impossible to escape from such a harrowing experience emotionally unscathed.
And that is something that, like you said, will take time. But it will get better, I know it will. It has to...time heals all wounds but leaves the love and the good stuff behind so that you aren't left with nothing after you've worked through all your grief.
GOD bless you and your daughter...I'm sure you two will come out stronger in the end from all of this.
this site has helped me so much in the last year. Thank You so much I know that my daughter is grieving and would not hurt me on purpose but she keeps bringing it up and when I get upset she will say she does not mean it was my fault. but GOD IT hurts.
Gabbie - I'm so sorry that your daughter is making this situation worse for you. I think the others are right - she's angry and needs someone to last out at. I'm assuming by her thinking he starved to death that the issue is that he did not have a feeding tube placed. Hospice is not there to make end of life patients struggle and suffer. Their goal is to keep them comfortable and help them maintain as much quality of life as they can while they can. A feeding tube for someone with a disease or condition that could improve is without question. That patient would not be one who would be in hospice. A feeding tube for someone going through normal end of life stages - no longer wanting to eat or drink - is only going to prolong the inevitable. It sounds like your husband was at that inevitable stage and, feeding tube or not, would have continued down that path. Again I'm sorry that you are dealing with her blaming you while you are deep in your own grief. Stay strong and remember the good times with your husband. Hugs, Kuli
There is always going to be those little nagging regrets and 'what if's' when someone passes, especially someone as close as as husband and father.
I think surely it is your daughter's way of dealing with her grief but it isn't functional for her to blame you because it just isn't true. The support group is a good suggestion if she will go. Otherwise, maybe try to find a way to get her informed about what palliative measures means and then maybe you two can talk about what happened in time and that will help both of you.
You were not wrong. Your daughter is suffering from grief and needs to blame someone, so she's putting the blame on you. I'd suggest that you both attend the grief counseling support groups that most hospices offer for up to 13 months after a death. You'll find out that they do not starve people. They stop giving sustenance when the body can no longer properly use food and feeding would simply stress the body. If it's even absorbed because of tube feeding, it just prolongs life to enough to keep the person breathing. You were compassionate toward your husband who was dying by not dragging out the procedure. Try to understand your daughter's grief and get the support you need through hospice. You can also seek professional counseling separately. Just know that what you did was allow him to die naturally with dignity rather than prolonging artificial life. Take care, Carol
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
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APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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Remember, "When someone you love becomes a memory, the memory becomes a treasure".
Let us all hold on to our memories and treasures.
And, thanks to all who have dilegently tried to help as best we can, from our own personal experiences. Marco40
he always said he best one
And for all of these people that are elderly, that helped to build this country...(the WWII and other veterans) that fought and died for this country...to see how their peers and other elderly are now being treated? There are always abuses within systems, but everyone needs to get educated and look at the system..Obamacare, and where it is headed. There are some 15 million "UNPAID" caregivers for Alzheimer's people. That is 15 MILLION UNPAID CAREGIVERS at an economic cost of about $200 BILLION. Where would these people be if not for these caregivers? I have a few suggestions; a) convert all of the Presidential libraries into care facilities for starters..and stop building them until we get our debt under control b) ask all the Govt people with the best health insurance to kick in and help the elderly c)contact your congressman or women and State Senators to voice your outrage.
Hospice provides, by and large, a great and valuable service. Yes, there is a great abuse from all types of healthcare providers, and abuse will never be completely eliminated. However, we can start with basics, and to help the elderly pass on with dignity and respect.
And, Momobrien, my heart goes out to you. You have to try and call/contact people that can give you some help. You are going to need help. Hang in there the best you can. My thoughts are with you. Marco40.
I do not want to market my book, "Handbook for Mortals: Guidance for People Facing Serious Illness," but you can read it for free online. We devote an entire chapter to this issue, of deciding not to pursue life-prolonging treatments.
I agree, your daughter may be using this as a way to express her own grief and sadness. Families can really be torn apart by their experiences near the end of life. Your hospice team is likely to offer some sort of bereavement counseling. Perhaps you could attend a few sessions, for your own peace of mind, and for some suggestions on how to overcome this issue with your daughter and preserve your relationship with her.
My father, age 85, had been accepted to go to a hospice facility but the hospital kept making excuses why he couldn't be released. As a result he wasn't given suitable medications to make him comfortable and passed in an extremely agitated state. That was over nine years ago and it still breaks my heart to think about it.
You did the right thing and your conviction of that should strengthen you in the face of your daughter's irrational emotions. Please get grief counseling or go to a support group, whether your daughter joins you or not. Our local hospice offers free individual counseling which I used to great benefit after Dad died.
You each need to process your sorrow in ways that work for you, and for however long it takes. Perhpas your daughter is not ready to accept help. Bless and comfort her and at the same time protect your own fragile state. May you remain in touch with the source of everlasting peace within us all.
I will say however, that there is a difference between one Hospice and another Hospice..and clearly can be a difference in thinking or philosophies or level of care between a Case Nurse and/or Medical Director from one Hospice versus another...no different than one Doctor's opinion versus another. I personally switched from one Hospice organization to another, for lots of reasons, primarily because a) the Hospice Nurse didn't show up as scheduled and never agologize, b) equipment and meds didn't arrive when promised c) suggestions to "eliminate insulin doses" d) Nurse and home health aide showed up with bad colds...etc...and I didn't need more problems. Between the first Hospice organization and the one I switched to, my Mother was under Hospice care for one year, and I was 24/7. I can only tell you that in my situation, my Mother most certainly had a "good" quality of life for nearly seven months beyond, and after my switch from one Hospice to the other. Within the last couple of weeks, my Mother started to refuse food, and there was no pushing her. It was apple sauce, water and comfort meds. (no feeding tubes).
Bottom line is that you did the very best you could, so please don not feel guilty about anything. And, I don't know your daughter's degree of involvement. However, anger is a part of the grieving process as well as a multitude of other emotions. Do not deny your feelings, and/or anyone else's feeling, rather discuss them, and with help from compassionate support groups and counseling. There are no magic answers as we are all different in how we process a loved one's passing.
You did the very best you could and watched over your husband with great pride and love. Who could ask anything more of you and/or point fingers. No one.
God Bless you for all you did for your husband.
The last 72 hours with the Cheyne Stokes , I could not handle it. I call it racking death breathing.
They were suctioning him but the last 24 hours it would caused him more harm and discomfort , so they stopped.
In the end Life is truly about one thing and one thing only. Who is willing to sit at your bedside as you die.
nine months of this Gift called Hospice. Its end of life care and they
are the BEST at what they do . They give palliative care ( end of Life Care)
They do not starve a patient. When my daddy was on the unit here in Las Vegas they would give him anything he wanted. Most of the time it was a bowl of cereal with very COLD MILK. We only have a 12 bed unit with a turn around 5 days and if you do not die you go back to where you were once your medially cleared ( as in symptoms managed). They adored my Daddy ( plus he was a doctor himself ) so they extended his stays . They will always hold a special place in my heart. The men and woman that do this at home care or on the unit are made of something beyond human. I have seen their wings many-,many times. They were wonderful to my Daddy and our family. When a loved one dies, you always want to blame. Your daughter is going through the normal stages of grief. Time is her friend. I lost my Beloved Cut Man ( my daddy ) as I liked to call him always in my corner for 49 years 9 months ago. I still
have very-very bad days. Plus now my Mummy has had to be put in a group home for ALZ.. So I 've lost both my parents in less than a years time. My Mummy is still alive ( but she is not the Mummy who raised me anymore and never will be again).
I'm not looking forward to Fathers day this year at all. It was a honor
to be his Daughter for 49 years. I like to say I will love my Daddy forever and 1 day.
Your Daughter needs a support group or to heal from this pain of losing her Daddy in her own time and way .
Prayer's to you both.
Please don't ever think
Badly of Hospice
, they are a GIFT to the dying and we so need them.
Hospice is won of the best places for persons who are in the ending parts of their lives. They care for people who most could not. We had my Mother-in-Law in a regular hospital with cancer and a bowl constriction. She suffered the most from dry mouth but the taste of food had become foul to her before the obstruction was found.Forcing food when the person does not want it or really need it is cruel and hard on every one. If your daughter wants she should go to grief counseling it might help. This was the Dad whom she (in the back of her mind) thought would live for ever and now he is gone.Both of you will come out on the other end , let her yell untill the feelings are gone.Hugs and Kisses!
And that is something that, like you said, will take time. But it will get better, I know it will. It has to...time heals all wounds but leaves the love and the good stuff behind so that you aren't left with nothing after you've worked through all your grief.
GOD bless you and your daughter...I'm sure you two will come out stronger in the end from all of this.
There is always going to be those little nagging regrets and 'what if's' when someone passes, especially someone as close as as husband and father.
I think surely it is your daughter's way of dealing with her grief but it isn't functional for her to blame you because it just isn't true. The support group is a good suggestion if she will go. Otherwise, maybe try to find a way to get her informed about what palliative measures means and then maybe you two can talk about what happened in time and that will help both of you.
I think you did the right thing, for sure!
Take care,
Carol