Family disharmony

[razz]

Tybee, just a quick addition to the discussion. As hard as it may be to do, don't take any of the disharmony personally.

Our society's death practices have separated us from the death experience so most of us are only learning as we go through it for the first time and each passing is different for each member of the family

[iris lilies]

catherine, I agree with you that there is always resentment from the principal caregivers. I see it every time and in every situation. And who can blame them? But fortunately, there are degrees of it,and in my family it was minimal. My brother was very very very good about not playing martyr when he and his wife looked after my mother. I was very very very good about being loudly enthusiastic about every decision they made. Because truly I didn’t care as I didn’t want to make the decisions.

Sure I think that some things they did were a little bit silly but in no case did that hurt my mother. So it didn’t matter.

[Tybee]

I’m sorry for all this. It’s so difficult. I like the social workers offer - this is their specialty.

I agree, they know what they are doing, and know when hospice makes sense.

[Tybee]

Catherine, thanks, that's a sad story, and I get what you mean about the bad feeling between you and SIL sabotaging your chance to see your mom. There is some of that happening here, I think.

[Simplemind]

One thing that I was thankful for was that when my parents drew up their trust and medical POA they were crystal clear about what they would want. We knew mom was slipping a bit but neither of them felt the end was going to come with them not being competent. It did, for both.
Mom was still at home when we put her on hospice. My dad and my brother didn't want it, my sister and I were all for it. I think a lot of people think of hospice as a quick death sentence and unfortunately it often rolls out that way because people - the ones not needing it - are afraid. It doesn't hasten or delay what is already happening. It can assist the family in a great many ways. It was a great education for me and actually led to some of the volunteer work I do now. I was able to prepare for what we could expect my mom to transition through. I was able to assist with meds. We were able to take breaks when they came to assist as mom could do less and less for herself. She was actually kinder to the hospice people than she was with us...... (no great surprise there). I learned a lot about anticipatory grief and how that was playing out between my dad, brother and sister. A lot of times grief looks like anger, like anxiety, like fear. It brought out the best of us, it brought out the worst of us. Something happened to the dynamic of our family during that hospice time and I'm glad they were there to guide us through it. My dad and brother didn't want my mom to have morphine at the end because they wanted her conversational. My sister and I wanted her to have it because she was in pain and gasping for breath. We gave it to her even though it angered them. I've made it clear should I ever be in a similar situation - give me the damn morphine. We've had years to talk! Anyway.... I have nothing but positive things to say about how they helped us through a horrible time.
With my dad, he was at the hospital and there wasn't anything more that they could do. This was a couple of years ago during the flu season and that is why he was in. They discussed sending him home with hospice but I knew that transition was going to be problematic and very very short anyway. I had a heart to heart with the doctor and said that I watched my mom die gasping for breath and now I was reliving it with my dad. I could tell he was in a panic and was fighting against the suctioning they were having to do. He had dementia and was tied down to the bed. I knew my dad, I knew what he wanted from when he was competent. I told her I wanted her to ease his anxiety, that I didn't want to have him released to home. She explained that if she did he would go quickly do to his lung issues. I let my siblings know. He was gone within 6 hours but he was peaceful and no longer needed to be tied down. We all got to talk to him and say goodbye. I know in my heart that was the right thing to do, just as I know without a doubt hospice was the right call for my mom.
We also had a great doctor for my dad that allowed us all to come to one of his last appointments to talk about where things were headed and options for dad. He would not have this meeting without my dad present (kudos there) but we all got to ask questions and got the info all at the same time to make the hard decisions we knew we needed to make. Part of that was knowing that none of us were set up to adequately take care of him at our homes. It took a huge weight off my shoulders to grasp that loving my dad and wanting him to have the best care did not mean that if I loved him I wouldn't turn over his care to others. I learned that loving him meant that I provided the best care and that the best care was going to come from a professional. I was able to spend our last days together just being his daughter, not his primary caregiver. It saved my sanity. It also saved our sibling relationships which are now stronger than they ever were when our parents were alive.
Long story short.... have a family meeting with his doctor for guidance on hospice. Have a family meeting with the social worker for guidance on hospice. It does not mean giving up, it does not mean giving in. It is every possible resource available to you to assist navigating what is expected for you and your loved one on the journey and that journey can take much longer than 6 months. My mom's order was for a year although she didn't make it nearly that long.

[jp1]

Several years ago dear FIL had an undiagnosed illness where he was requiring regular blood transfusions because he wasn't producing red blood cells. After 3 years of this, along with multiple co-morbidities and having spent literally 50% of nights during that time in a hospital or rehab facility he was done. He made the decision to go into hospice care. Two weeks later we went for our final visit. He was home and mostly seemed content with his decision. Friends were coming to visit and say goodbye from near and far. The whole family was there every evening. It was good. At least as good as can be when a very loved family member is about to die. In the middle of the week one of SO's sisters, when no one else was in the room with him, begged their father to go get another transfusion. He told her no, that he had made his decision. The rest of the family, who agreed with his decision, were very frustrated with this sibling for doing that. She can be 'difficult' to be around sometimes but at the end of the day she's still very much a loved part of the family. Later that evening when SO and I were alone he went off on her for several minutes. After he had vented I let him settle down for a bit and just said "C isn't trying to subvert your dad's wishes just to be contrary. She just loves him very much and doesn't want him to die. Don't be too hard on her."

[razz]

So much good sharing here for all of us to learn.

I have mentioned in earlier posts that my late DH and I had discussed our wishes when near life's end for years. We shared that with our family. It was DH's call when to go to hospital for the final trip. Having acute difficulty breathing, upon arrival, he could only shake or nod his head when asked about resuscitation. The young nurse at the ICU had asked him to confirm his DNR order as soon as he arrived by ambulance. He confirmed it by a vigorous nod and a gasping 'yes'. The MD asked him again when he came in to assess, the nurse was there confirming his nod. I repeated that we had settled this question over years of discussion and also when I called for the ambulance. He needed to be relieved of his acute distress in breathing! At that point, the MD prescribed morphine, DH's breathing stress eased and in 6 hours he was gone. I have no regrets about how it was handled.
From that experience, I have come to believe that professionals will do all they can to prolong life but when they advise hospice, it is because it is the best choice.

[catherine]

...I learned a lot about anticipatory grief and how that was playing out between my dad, brother and sister. A lot of times grief looks like anger, like anxiety, like fear. It brought out the best of us, it brought out the worst of us. Something happened to the dynamic of our family during that hospice time and I'm glad they were there to guide us through it. My dad and brother didn't want my mom to have morphine at the end because they wanted her conversational. My sister and I wanted her to have it because she was in pain and gasping for breath. We gave it to her even though it angered them. I've made it clear should I ever be in a similar situation - give me the damn morphine. We've had years to talk!

I do wish there was a "like" button for our posts sometimes.

[Teacher Terry]

Razz, it sounds like it was handled perfectly.

[Tybee]

Thank you so much for sharing these stories--they are really helping me to think through this situation and my response to it.