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virginias55 Asked April 2016

How to get over the guilt of putting my mother in a hospice inpatient facility?

My mother died March 15 and I feel that I killed my mother. I feel that she would be still alive if had not listened to the doctors and my brothers. Not that she is gone , I know it was the wrong decision. She had advanced Alzheimer's so they say and had recently developed blood clots in her stomach and lungs. She would scream out sometime but I believed it was due to the disease,not pain. I have posted here before but I feel so lost now and so guilty.

Gershun Sep 2016
I too have felt the guilt over things that were beyond my control. When it was time to place my Mom into nursing care it was such a hectic time. The case worker deemed my Mom's case to be urgent and we didn't have time to search around for an ideal place. We made her room cozy and she seemed quite content but a year later they rebuilt the nursing home. The new place was cold and clinical. They did not allow her to have her own stuff and she declined quite quickly after moving there. A month later to be exact. I've thought quite often that had I looked into another place for her where she might of been happier that maybe she would still be here. But with hardly any support from siblings, that did not prove to be an option. My siblings commented to me about how they didn't like the new place but no one lifted a finger to help remedy the situation. The last time I visited with her there I could tell she wanted me to stay longer but I didn't and I regret that every day cause it turns out that was the last time I saw her conscious. She died two weeks later.

But Virginia there is no room in life for guilt and regret. It's a wasted emotion. No one knows the future. We do what we think is best at the time. As long as you do what your heart tells you is right then leave the rest up to God. I hope you learn to not beat yourself up about things that are beyond your control.

Memories2016 Sep 2016
The guilt of Hospice will never go away it seems. I had no idea what to do when the medical field gave up on my mom and she passed away at home with us under the care of Hospice on 4/5/16. Yes she was 88 and until they did a scope I really believe she had many years left. Every day I blame myself for letting them throw her away.

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Eyerishlass Apr 2016
Virginia,

I'm so sorry about the loss of your mom. And I think a brief period of going over everything again and again is normal. I did it after both of my parents died. I kept replaying everything over and over in my mind. I had no peace. Things got better eventually. My brother and I talked it out repeatedly, I had a best friend to lean on.....time passed and I came to accept what had happened.

I have a blood clotting disorder and blood clots are extremely painful. I have them in my legs and I've had them in my lung. Before I even knew I had this disorder the pain in my leg was bad. Even pressing down on the accelerator in my car was painful.

When people scream or yell out they're in pain or they're in distress of some kind. It's awful for families to experience this but you did nothing wrong. You didn't have power over your mom's life or death. Your mom died because it was her time not because of something you did or didn't do.

I'm going to tell you something that is very personal to me: my dad was in a nursing home. I had cared for him at home for years but was unable to continue doing so. My dad began dying of liver disease which caused mild dementia. The time came when we called in hospice. I had spent several days with my dad, all day at his nursing home, because of his dementia. I just didn't want to leave him but eventually I had to get back to work. I was working 12-hour shifts, 3 days in a row. I had to drive right by the nursing home on my way home from work. On my 2nd day I tried to talk myself into stopping in to see my dad even thought it was late and he'd probably be asleep but I had to work again at 8am the next morning and I made the decision to not stop in to see my dad. I decided to stop in the next night instead.

When I got home I called the nursing home to check on my dad and I was informed that he had died not 10 minutes before my call. Had I stopped in to see him I would have been with him when he died. As it was, he was all alone when he died. I shared this with my brother who reassured me that there's no way I could have known our dad was going to die that night. I beat myself up over this for several days. I was horrified that my dad died alone and that I had come so close to stopping in to see him but decided not to.

I had to make this OK in my mind so I could live with myself so I just kept replaying those few days in my head. 12 hour shifts. I was exhausted. We had no indication that my dad was going to pass away as soon as he did. I had been with my dad for days prior to my work shifts, I had spent those days caring for him as if he were my child. Stroking his hand. Smoothing back his hair. Putting cold compresses on his forehead. Reassuring him that everything was OK.

Gradually I began to feel OK with my dad's death and the fact that I wasn't there. I'm a woman of faith so my faith played a role in comforting me and easing my guilt and within a week or so of my dad's passing I was OK with how it happened.

Don't carry that guilt around with you, Virginia. It will weigh you down and dictate everything you do. It will erode your self-confidence and eat away at your self-esteem. And I know that by my saying to you, "Don't feel guilty" won't ease your pain but please work on not feeling guilty. You did nothing to feel guilty about! It was your mom's time. We don't have control over things like that.

My dad's hospice offered grief counseling. Does your mom's hospice offer grief counseling? Maybe a few sessions with a grief counselor might help you get over this hump so you can grieve because the guilt you feel will prevent you from grieving your mom's loss. You don't want to drag this around for the rest of your life, do you?

You didn't kill your mom in any way, shape, or form. She was sick. She had a terminal illness. The guilt you feel is going to interfere with your grieving. You won't be able to move on and we all have to be able to move on when a parent dies. Not being able to move on will make you sick and it will color your entire life. I hope you avail yourself of the grief counseling the hospice offers or seek out your own counseling. I don't think you'll need long-term counseling, maybe just a few sessions to purge your guilt and get some healthy tools to apply to your grief.

And come back to let us know how you're doing.

jeannegibbs Apr 2016
virginias55, this may seem a bit harsh, so let me first offer my sympathy for your situation and my condolences on your mother's death.

1) Your mother died of complications of dementia and/or of blood clots. She did not die because she was in a hospice house.
2) No matter how important you were in her life or how much you loved each other, you did not have the power of life and death over her. That is decided in a whole different realm.
3) Maybe -- possibly -- if Mom hadn't been in the hospice house she would have lived a few more days, or a week, or (very unlikely) she would still be alive today. And she would be screaming out in pain and/or the agony of her diseases. She would still be out of her mind. Is that what you would really wanted to prolong? Please read Lindylu's post again.
4) Dementia is not curable. It is not even effectively treatable. Your decisions have no control over that reality.
5) You have plenty to feel mournful about. Your dear mother died. You miss her. You wish some things in your life together had been different. (Everyone does.] You wish you'd had more time with her, and she'd been in her right mind to the end. Be sad. Give yourself time to truly mourn this great loss.
6) You have nothing to be guilty about. Please don't waste your emotional energies in that direction. Don't be distracted by a delusion. You've had a genuine loss. Focus on it.
7) It would be a further tragedy if this episode estranges you from your brothers. Or that you forever blame the medical profession. They had a different view of the situation, but that, too, did not kill your mother. Your mother died from a terminal illness she had had for some years. Not your fault. Not your brothers' fault. Not the doctors' fault.

I hope that accepting the reality of your own limitations (mankind's limitiations) will help you find peace.

anonymous326422 Apr 2016
PS I don't want to scare you saying we still feel bad so many years later! I just meant that my family and I still catch ourselves questioning what happened and feeling like we could have done something different.

The first year was the worst -- I was waking up feeling terrible and remembering what had happened. It took me awhile to realize I was replaying that day over and over because it was traumatic, not because the whole thing was my or my family's fault. Once I was able to sort out those things, then things started to calm down feelings-wise. I'm not sure if that is what you are going through, but your descriptions of self-doubt, guilt and the upsetting descriptions of your mom's experiences rang a bell for me.

anonymous326422 Apr 2016
Virginia, It really does sound like you did the right thing helping your mom to get treatment for her pain. It is so hard to know what to do in the moment. Families are put in the position of making major decisions, but often we don't have enough information (either from our loved one or from the medical perspective) to feel like we are doing the right thing. When someone has multiple issues, things can start to go downhill very rapidly. Everything starts to happen at once and there just really isn't a good way for the doctor to fix things without making things even worse.

It sounds like with your mom's health issues, things were not heading in a good direction. In that case, the best thing you can do is just to try to minimize physical discomfort and let them know they are loved. It sounds like that is what you and the others caring for her tried to do.

Our situation with my grandma was kind of the reverse; doctors recommended medical intervention when she should have been on hospice. Her last couple of days were painful and frightening as a result of pointless medical interventions. We still have major guilt 9 years later for allowing that to happen. I so understand the guilt and questions. I completely understand how you feel, but your mom's decline was not your fault at all. I am so sorry you and your mom went through this.

I am wondering if it's possible that you might have some PTSD-like symptoms from seeing your mom suffering like that. If you are replaying a few upsetting memories over and over again in your mind, it might help to talk to someone such as a grief counselor. It took me a while after my grandma passed to be able to think of good memories without it switching immediately to something upsetting. It is so hard and the guilt feels very real -- the feeling is so strong that it seems like you must gave done something wrong to cause it. But really it is the shock and hurt (and not your actions) that are causing the guilt feeling.

It really does sound like you did the best you could and made the right choices for your mom. I hope you will take some time to work through your feelings and find peace knowing you did the best anyone could. You sound like you are a very loving daughter and took good are of your mom. Again I am really sorry for what you have been through.

virginias55 Apr 2016
I meant " now that she is gone".

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