Frightening end for my dad. I need to talk about it.

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After 2 years of going downhill, becoming incontinent, very weak, not able to get around, getting dementia, doing the standing up peeling anywhere, becoming bowel incontinent, not getting the best care because my mother insisted on doing everything herself and would not hire help, a few weeks ago my Dad had no strength absolutely in his legs, they took him to hosp, his BP was through the roof, they said he had a stroke, they recommended palliative care, they gave him the meds he needed at hospital, my Mom insisted he go home instead of palliative care place, so she fails to get his prescriptions filled, a team/person from hosp was going to come and assess his care needs but before that happened he died. He died either very late evening or very early morning. There he was taken from hosp to home, and at least hosp provided him a hosp bed at his house but ALL meds are completely dropped. One scrip was for morphine. Couldn't she at least given him that????? I can't wrap my head around this. Three of us adult children are in California and one brother is in same state as my Mom but he doesn't have "take charge" abilities over my Mom. Dad died on 10-20-2017. This hurts. I need to talk about it. If hosp said he needs palliative care does that mean it was certain he would die? Was my Dad in pain when he died? We adult children were wrong letting my Mom keep/take control.

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Top Answer
I'm sorry for the loss of your father. Since, he's now at peace, I don't think I would try to ask too many what if's. It does sound like something is going on with your mother though. For her own safety, I might have her assessed to find out what is wrong, as she likely may need some supervision or assistance in her own care.
It sounds as though your father died very soon after coming home from the hospital. It is understandable that your mom wanted him to be able to die at home, isn't that what most people want? Stopping life saving medications when the end of life approaches is common, at that point the focus is on comfort rather than a cure. Your mom may have been too stressed and overwhelmed just getting him settled to worry about starting the morphine, but it is my understanding that the "comfort kit" would be brought by the hospice nurses. A sudden death can be hard to accept, especially since you were too far away to be there to see and understand what was going on. Your father is at peace, try not to assign blame.
I'm so sorry for the loss of your father.

I don't think a single one of us on here has avoided the "coulda, woulda, shoulda" syndrome that accompanies the death of a parent. You did what you could. Please try to get over the guilt.

Legally, if mom was dad's POA for health, there was nothing you could do short of getting emergency guardianship, an expensive and contentious process which probably would have destroyed your relationship with your mom.

Now it's time to figure out what mom's needs are. Allow yourself, and her, to grieve.
I'm so sorry, Susan. You had very little time or opportunity to come to terms with what was happening before it was all over.

Given the speed with which your father declined, I think it's very unlikely that he was aware. Also, although the decision to discharge to home was your mother's to make, the hospital staff know their business and they speak the language - if they had reason to think that your father was at risk of suffering there are steps they could have, and would have, taken. They wouldn't just have shrugged and said 'oh well, up to you then.'

My mother (also a stroke patient, though she lingered longer) was px'ed morphine as well as other drugs for end of life care which we kept at home in case. But they weren't needed. Not every patient does. Morphine in end of life care is not just for pain relief; it's also used to improve quality of respiration - counterintuitive but true.

You children were not wrong to "allow" your mother to take and keep control. You didn't have any right to do otherwise. It is a great pity that her and your father's healthcare team couldn't persuade her of the wisdom of accepting support because she will now be both grief-stricken and exhausted - and, it seems, she's placed herself in conflict with her children. But believe she did this as a personal sacrifice to your father and try to take her side. She'll need you.

I'm very sorry for your family's loss. Please look after yourself, and take your time processing what's happened.
Trust that the correct thing happened. Because it did. Sometimes a palliative care place is not the right thing for everyone. Its just an option for people who are end of life and may need some support. Sounds like your mum really wanted him home - and maybe that was his wish as well? I'm assuming if he was in pain or suffering, she would have called a doctor. It does sound like its quite possibly he died peacefully and didn't suffer.
It sounds like the level of palliative care your father needed was hospice, and if they provided prescriptions including morphine, that is the level of care he was to get. Personally I think that dying soon in that situation can be a blessing. Dragging it out can be very traumatic. But naturally everyone would want the death to be as pain free and comfortable as possible.

I never used the morphine that came in my husband's comfort kit. In the five weeks he was on hospice in our home there did not seem to be a need for it. I did give him the med for anxiety, after asking him if he wanted it. It is entirely possible that your father was not in pain at the end.

Condolences on this sad loss.
I am going to come at this from a different point of view.

You see, I blame my mother for my fathers death. I blame her for the big “incident” that begun his serious downhill spiral. I blame her for not being there when he needed her the most in his last year. I blame her for him dying alone when it could have been different.

My parents had the most eff’d up, dysfunctional relationship I have ever seen. I could lay out all my reasons and facts as to why I blame my mom - all the history of their marriage - to show that I am right about this but I won’t and really it doesn’t matter to me - what anyone else thinks - because I know I’m right about this. I was there - beginning to end.

But here’s the thing - knowing I’m right doesn’t make any of it any easier. In fact, it makes it harder - a lot harder.

My father has been gone five years now. My mother passed away a little over a year ago. And here I am. Just as angry as I was five years ago. And my anger has made it impossible for me to grieve my parents death and work towards closure of any kind.

Carrying this type of anger around day in and day out is not for the faint of heart. It’s hard work that makes you tired to the bone. It changes who you are - irrevocably and not for the better. I don’t recommend it.

Susan, you are fairly new - into this. Right now, you don’t even know what to begin to think. But you have something that I did not. You weren’t there. You’ll never know exactly what happened and why.

Try to just lay it down - the wondering and the blame - and give your mother the benefit of the doubt. Don’t do it for her - do it for YOU.

My deepest condolences on the loss of your father.
Susan,
My heartfelt sympathies on the loss of your dad. It's very hard when a loved one passes quickly or unexpectedly.

Working backwards from your post;
"We adult children were wrong letting my Mom keep/take control." Your mother had complete control over choices for your dad, legally. You were NOT wrong in letting her choose what care he had and what was refused. Do NOT blame yourself for your mother's choices. You are not guilty of your father's death, neither is she.

With the symptoms you describe, it sounds as if your father was in the last stage of Alzheimer's or other dementia and then had a stroke. He would not have been able to make choices in his condition but, I'm sure, during the years of their marriage, your mom and dad discussed "end of life" plans. Most people say they want to die at home, if possible. Could it be that she was just carrying out his wishes by refusing to send him to palliative care and taking him home? If that was his wish, you have no right to be angry at your mom. She was doing what he wanted.

It sounds like he passed the night he was brought home or early the next morning. That was his time to pass and nothing would have changed that. It is impossible to know if he was in pain. He may not have been. You can assume that your mother would have noticed if he had pain and would have filled the prescriptions or called the doctor/palliative care staff. He may have had enough medication in him from the hospital to be comfortable. He may have been in the dying process and did not need morphine. Please try not to obsess on this point.

I'm a part time hospice nurse and I do 8 hour "crisis care" shifts in the patient's home. I don't work in the palliative care section but I'm sure they use the same meds. As another poster stated, some patients don't NEED the meds available to them. I find that in hospice also.

I know you're hurting for your dad. You don't feel that things were done as they should have been. You can be comforted that your dad didn't linger and that he was in the company of his loving wife. Please don't beat yourself up that you were not present when he passed. I've seen many patients WAIT to die once their loved ones go home.

Have you sat down and talked to your mother about the series of events? She needs your support after loosing her life partner, not your judgement. Can you let it go? If not, counseling is provided from many palliative care/hospice companies for a year following the passing of your loved one, whether the person was a patient of theirs or not. Take advantage of this free service. Ask them if they could explain the possibility of pain with your fathers' condition.

I hope you find peace. Your father has found his. Maybe you can help your mother find hers.
OMG, I just wrote a long reply, hit the wrong key and it's gone. All of what I wrote is gone. There's an exercise in letting go. I just want to thank you ALL so much for your thoughtful replies and kind words. I will write again tomorrow. It's midnight here in California and I need to get to sleep. Blessings to you all. -Susan
I'm sorry for the loss of your dad. When your dad was going down hill, you said that your mom took care of him and wouldn't allow help in. Was your mom afraid to let people in because she thought she would look like a horrible wife for not being able to do everything herself? Or did she have this notion that she knew better than everyone else? If it was a latter, it might be true to an extent because she has been with your father so long. But she could have thought that she knew better than the doctors. Some people can be arrogant that way but I would still look a little more closely at your mom and her mental state.

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