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My Father Has Died


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My father would have turned 100 in October. I'm glad he didn't live that long. The last 6 months have been filled with pain and suffering, despite efforts to provide comfort. 

My father was a WWII veteran and served in the Navy in the Pacific. One of his ships was bombed while in port and many of his shipmates died. He survived that but wouldn't talk about it for 40 years. After the war, he married my late mother and built their home, which my husband and I later bought when they retired and moved away. 

My father had many chronic conditions:  polymyalgia (an arthritis-like condition), gout, congestive heart failure and most recently, COPD. I also believe had undiagnosed depression for many years. He was living in an independent living facility when he fell and was taken to the hospital, where he was diagnosed with COPD. A nurse practitioner diagnosed the COPD. He never saw a pulmonologist. The hospital refused to discharge him back to his independent living facility and forced us to engage hospice care. On Labor Day weekend in 2019, we had 24 hours to find a place for him where he could get 24-hour care. There were 2 choices and we hastily picked what they call a board and care home here in California. Generally his care there was very good, and their Covid response has been stellar. 

By December 2020, his health took a turn for the worse, and he was no longer able to feed himself. He was slowly declining and was extremely emotional and sad. The hospice provider we were using was nonresponsive (again, over the Christmas holiday), and I had to scramble to engage a new provider over New Year's weekend. We were able to stabilize his emotional state with medication. 

He started to have difficulty swallowing and clearing secretions from his chest and throat. In the last few months he was bedbound, on thickened Ensure and had a painful bedsore. When he had increasing fits of coughing/choking, I had to request (quite forcefully) that he be given the morphine his hospice NP prescribed. Last week, I had a summit with the hospice nurse, NP and special worker, where we agreed he would be given morphine and kept sedated 24/7, and forego nutrition. Had this protocol been followed, my father's death would have been peaceful. However, I later learned that it was not followed by the caregiving staff, even though it was clearly communicated to them. 

On Friday night, May 28, my father died in a very unpleasant way (I will spare the details). I am traumatized by his end and have tremendous guilt that, as his health care proxy, I was unable to give him the peaceful death he wanted. The social worker assures me that I did everything I could and the failure was not mine. 

As my father's caregiver of 6.5 years, I've been through all the worry, anger, frustration, anxiety and other emotions. I regret that my sister and I were powerless against the hospital who decided they would no longer treat a 97 year old. I realized the first hospice provider's limitations too late. I failed in my efforts to ensure comfort care in his final days. 

My advice to other caregivers is that there are going to be obstacles placed in your way at every turn. Your loved one/patient may be difficult and non-compliant, as mine was, and you can only do so much advocating for them. I wasted years being stressed and frustrated, and I believe those negative emotions played a part in activating my lung cancer (I was diagnosed one month after my father was placed into hospice care). Get the hospice provider with the best reputation in your area and who can deliver comfort medications within an hour. When the end is near, do what you can to be a constant presence to ensure that comfort protocols are being followed. I visited every day but should have been present throughout each day when morphine was administered. 

And take care of yourself. We need our caregivers, and I believe they have it harder than patients. Thank you for all you do. 

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I'm so sorry for your loss, Judy--especially that you feel it was painful or distressing for him. You did the best you could for him--sometimes the obstacles are simply beyond our control.

It sounds like he had a good life--that, at least, is something to be thankful for. But I don't blame you for feeling angry about the hospital's failure to abide by his wishes.

Sending you many hugs and good wishes.

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Judy,

You've told a sad story about your struggles with your father. I am vastly sorry.

One point to reinforce your guidance on hospice providers should be highlighted. Hospice providers and nursing homes should be investigated well before one's need arises. 

Stay the course.

Tom

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Hi Judy 

Losing a father, at any time under any circumstance is traumatic.  I am so sorry.  I can totally relate to the health care delivery system forcing a transition to hospice.  They did it to my mother this Spring-it's was horrible experience for everyone.   The grief and guilt go hand in hand and will for some time.   I actually took advantage of my clinic's Onco-psychology program to talk through the profound guilt I felt in failing to successfully advocate for my mother....  you might want to see if there is a similar program available to you--it's tough stuff your dealing with.   We love you and are here to support you in any way we can.   Michelle 

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Thanks for your advice, @Rower Michelle, and I'm sorry for your experience as well. The hospice social worker told me that there is a bereavement program available to family members for a year. I will call them if need be. 

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Judy, 

I'm so sorry for the loss of your father.  He sounds like a man who did some wonderful things in his life.  Your love for him is obvious and real.  Your guilt is understandable (I felt very guilty/depressed, when I had to put my wife into memory care January '20), but not deserved.  I really like Michelle's idea to get someone to speak to about this.  You did the best you could, under the circumstances and all from a vantage of love and caring.  Others did not do their job and you can be disappointed in them, even angry at them, but you are nowhere near responsible for what they did.  I hope that you will get an outside voice to listen to that can help you sort this out.  You deserve to feel like the loving and caring daughter that you showed yourself to be in all situations.

Lou

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My father was a WW2 vet as well. In the Pacific. He never talked about it either.

I also was the primary caregiver and was pushed to put him in hospice by the hospital on short notice. I wont bother with the details of what a crappy place that was...but fortunately they were competent enough to keep him sedated. Last time I saw him awake was when they loaded him up in a van to take him to hospice. By the time I got there they already had him heavily sedated. To be honest...it was essentially assisted suicide. I was there when he passed.

I was also there when my brother passed away from LC. He had home hospice and that is where he passed. He was so young.

Lesson learned by me...to do as Tom said. Prepare now for your passing (may it be decades).

Your dad lived a very full life during interesting times. It is a shame his end was not peaceful. I'm so sorry.

Peace 

Tom

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