How do I stop feeling guilty about suggesting to put Mom in hospice?

6 answers | Last updated: Oct 02, 2016
Noproblem67 asked...

My mom has been bed ridden for a while now. She is in ex stream pain, and has taken pain meds for years, she is a large woman, and my dad has struggled for so long to care for her, and cant lift her anymore, though, he does have some equipment, its not enough. She also has congestive heart failure, and is on oxygen full time, she is diabetic, and really should be on dialysis,but cant. She hasnt seen a doctor for months. I suggested hospice to my father, and he wasnt sure, but they decided to do it, and it was good, but they came in and gave her so much medications that she wasnt even able to talk. All she did was sleep. The backed off on as much, so she could at least communicate with them, but seams to be going down hill Fast since she has been on it. My sister and father has said that they are upset, cause she was doing ok, but he just needed help, and now I feel its my fault... She isnt eating, and not drinking and has urinated but 300 units in 24 hrs. (she has a catheter now.) She isnt even asking for her pain meds any more... I am in Arizona, and they are in Oregon, and I felt that they could help~as I wasnt able to be there to help :O( It breaks my heart to think that my wanting to help her and my father, has now lead to her death. How can I ever make them understand that I just wanted to help? I know time is getting near, and in 2 days is my fathers birthday~ I couldnt bear to have her pass away then..My Heart is aching...My father loves her so much, as do I but I cant help but feel Intense guilt... :O(

Expert Answers

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

This is a situation in which communication with the Case Manager would be helpful. Call the hospice treating your mother and speak to the Case Manager or the Social Worker. Express your concerns; and you'll, also be able to get current, first-hand information on what is really happening in her disease process. Sometimes, as the patient declines, the family members are so overwhelmed they cannot process all that is happening.

The normal end-of-life process would include more sleeping as the body is exhausted from fighting the disease. While her medications may be making her less interactive, they can be helping control her pain. In your mother's case, she has many things going on (or co-morbidities) that she has to cope with. And, your father has been her caregiver for so long that giving up "control" to others may be difficult (and cause guilt). Please realize that the body is very wise in that it knows when food and fluids are too much to digest"”so it is normal and natural to eat less. Being unable to swallow is also a normal physiologic change as death draws near.

Remember that hospice is supportive care"”for mom and for all of your family. Our job is to keep your mom's pain and symptoms controlled so she can have a peaceful life closure, in her own home, with family present.

Community Answers

Marly26 answered...

Please dont' feel guilt over what has taken place. Your father could not handle the situation anymore, there is only so much one can do. You have to think in terms that had she not gone into a home and your father was still caring for her, it could as well cause him problems. My father in law looked after my mother in law (Alzheimers) with help throughout the day. He cared for her for 2yrs. ended up with a hernia from having to carry her. It got to the point that he couldn't handle it. She had taken two bad falls during the night, the last being when she got out of bed she split her nose open. He took her into the hospital and he was about to tell the Dr. to handcuff him (he was having a mental breakdown). Prior to him saying anything the Dr. said "she is not going home". It was just to much for him. I as well hope that she is still here for your fathers' Birthday it is understandable that he would be devastated after so many yrs. of being together. At some point it must have been agreed to that she go into a home, its not something that you yourself decided. Remember we are only one person, we have only two hands. When someone is in the condition that your mother is your father would have ended up failing himself, you may have had both of them gone. We all want to do whatever possible for our loved ones', keeping them at home being number one, however as I said there is only so much the body and mind can take. If at this point you feel or your family feels that they want your mother home, this is not something that cant' be done. My own mother, rest her soul, ended up in hospital (emphysema). She had been on life support and pulled through for another 3yrs. She was in hospital the week prior to her passing, she asked to come home which I know was closure for her. She came home on the Sunday, I went up to her place on the Friday (I live out of town). As a Healthcare Aide I noticed the mottling (changes in fingernail color as well as toes) when I arrived. She had company and her sister said to her I will see you tomorrow. My mothers' reply was "I wont' be here". Talk about catch me off guard. She asked me at 8:30pm. to call the ambulance which I did. I followed to the hospital, they put a (butterfly/morphine) on her and took her into the hospital room. I got a call which I knew I would at 1:30am saying to get up there. When I arrived she had already passed. I shed my tears, kissed and hugged her, at that moment looking at her I never seen anyone look so peaceful and content. She just wanted to come home to her family, I know that prior to her passing over. Death is never easy but pls. remember, you did the best thing possible for your father. When a person ages they tend to stop eating normally as well as drinking. This is not something uncommon. Sorry for such a long story but I want you to know that you shouldn't feel that you did wrong, you did the right thing. If you now feel that the end is near and your father wants her home even for a short period, Hospice is very well educated and they will stay with your mom. This way your father, yourself and sister have the comfort in knowing that when she passes over, you did as well as your father and sister all that you could do. Do not put blame on yourself this was a situation that needed to be taken care of. You still will have your father, and I am sure that when your mom passes she will go quietly in her sleep. Near the end they dont' feel the pain that they once used to, this is them telling you that the end is near. I am sending hugs and prayers to you and your family. You did what any other family member would have. Take care my dear, when your mom passes you will be left with fond memories and love, the love of a mother and daughter.

The kingbird answered...

I have had a Mother and a Mother in law that have passed away that were in the care of Hospice. I am now following in their footteps I was diagnosed as terminal a few weeks ago. I have CHF and all the goodies that go with it. It is a terriable thing to try to exhist each day in the pain that this problem can cause. I have a permanent cathiter now, don't have the strength to leave the house, etc.

But, the most important fact that I wanted to being up was about your guilt for having put Mom into Hospice. #1 if you hadn't your mom would have almost certainly have suffered through more pain than you can imagine. With the drug problem the way it is, most GP Doctors will not order strong enough pain meds, if she could have gone to see one. #2 You were looking out for your Mother's welfare, no matter what anyone else says. #3 I have found that the relatives that would accuse you are the ones that haven't lifted a finger in the care of your Mother.

Do what I have had to do witeh my family, tell them to either put up or shutup. You are taking care of Mom or they are, which is it?

Noproblem67 answered...

Thank you all for your kindness and thoughts and prayers... My mom passed away last week, and I was blessed to be able to go see her before she passed. :O) She was not talking when I got there, hadnt been able to, and then on the 3rd day I was there, I woke up to go check on her, and she said "Hi baby" wanted hugs and kisses, and she wanted my dad, to give him hugs and kisses. I was sooo excited, I thought, "SHE BETTER" "SHES GOING TO BE OK" but my father said, that hospice, said, she may do that. I was sad, but Happy, she told us all to be "Good girls" and my father to be a "Good boy" that she was going some where... That she loved us all... She asked for her angel, (a necklace that my nephew had gotten her) She spoke that day, and then didnt speak again. She passed 2 days later. I know she is no longer suffering, and is free of all her pain, and is finally able to walk... I miss her terribly, and a selfish part of me wishes she was still here, but Iknow now she is ok, and was for the first time in 5 years able to walk, best of all, to walk through those pearlly gates of heaven.. I love you mom...

Samstone11 answered...

Several years ago my parents both died within a few months of one another. This eventually lead me down a road to developing a highly specialized hospice service, the first in the world, that specializes in caring for a patient in their last hours or days as opposed to the full last six months required for a hospice appropriate designation. Hopefully you will understand that my passion for hospice care is unsurpassed by anything else in my life excluding my immediate family. It is that sincere love of these patients facing their last short time on earth, and I am absolutely convinced without any shadow of a doubt that hospice is a blessing and something that should be viewed as the greatest gift you could ever give. When hospice is performed correctly, it opens up a windfall of benefits, comfort, dignity, and financial assistance for Medicare patients specifically. I must caution, however, that to my great disappointment, I have found many, many hospice operations who exhibit a profit-first mentality, and in fact, there exists a culture whereby many hospice directors receive their annual bonuses based on how little service they could provide, thereby placing profit above care. With a bit of research, however, you can find the ones who care. The ones who will go more than the extra mile. These are the ones whose reputations truly reflect their sincere concern for the patients and their families in their charge. In one of the world's best cases of getting what they deserve, they will rise to the top of the profession. Interestingly, they are rarely the larger hospices in any region largely because by placing the emphasis in the right place, they are not as concerned with becoming multimillionaires and realize that their work is far more important than the financial reward, which by the way, is still financially impressive enough to attract the good ones.

In closing, I have never before heard of being ashamed for suggesting hospice as an option. I think by doing so you truly have said "I love you more than I can ever say'. You just used a different set of words.

Best wishes to all.

Oegongirl answered...

Well, I understand the guilt. I too feel guilty for suggesting Hospice. And the DRUGS...I remember one night he was in so much pain and the nurse on duty told me to up the morphine. That is very scary as I am not a nurse. He just began to fade and did not talk at all. He was coughing so much and fluids were difficult as he actually would start to choke. I am torn as to whether Hospice was good or bad. If I did not use hospice, would he have found some other means of helping him and lived, or would the pain have been so bad, his quality of life would have been horrible? I miss him terribly. I have no idea whether hospice was good or bad. For me it was not that good as I feel so much guilt. He never used drugs and neither do I. Our bodies were free of things like morphine so the morphine probably was such an odd feeling for him. I know it would be for me. We only have ONE hospice in our area and there are no choices. I also depended on his family physician (who is also the hospice doctor) to make the right decisions. I spent every second with him. I slept with him in his hospital bed so I would know when he needed help. I tried everything I could to help him. I called hospice all the time before I gave him anything. Hospice was only there twice a week. I did not see that much of them, so I carry the guilt of being the one who gave the drugs. I wrote down everything I gave him to avoid giving him a drug twice. I tried everything to do it right, but still feel so much guilt.