dying at home

[farmer mama]

Hi. My dear FIL is in the process of dying from aggressive tumors in his brain. They have always been really close to the kids and I (and dh of course) and when he was diagnosed they moved about 20 minutes from our house so we could be close. So his symptoms are getting worse (seizures, temp. blindness, pain, dizziness, speech problems, etc.) so he can not walk without a walker and can't have a conversation. It is expected to get worse in the next few weeks and then his heart or lungs will shut down. So we have been basically living with them, doing the cooking and cleaning and offering support and he is just overjoyed by the kid's presence. They have a hospice nurse coming in and they are set up for him to die at home. My question is does anyone have experience with this and have any suggestions of any ritual or spiritual elements to help support this process? At a midwifery conference a few years ago a class was about "midwifing the the dying process", but I didn't go as their were other classes. I am looking for ideas about how to help the spiritual, soulful aspect of this as well as how to support the energy and sacredness of the space. I should add that FIL was raised catholic and wants nothing to do with anything related to that religion and we are pagan. Sorry if this is rambling...we have been in the hospital for days, then at IL's for days and I am doing all the practical stuff and supporting everyone...I haven't slept in a week. But on the upside the kids are handling this really well.

[Bippity]

Peace to you and your family during one of the most difficult and emotional times in life. When my Dad died the hospice nurse was amazing. She had lots and lots of resources to help us ALL through the process - she wasn't just there to care for my Dad, she cared for the whole family. She even had a book for my 3 yo nephew to help him understand what was going on at the time. She passed on a pamphlet to my Mom and me that really, really helped us understand and become comfortable with the dying process. It very honestly talked about what physically happens in the last stage of life - it was very comforting and helpful.

Just as a thought, check out ritualwell.org. It's intended for Jewish people, but it has lots of things that I've found can be adapted to suit your needs. Hospicenet.org also lots of great ideas on how to process this event & you can just leave out the parts that don't fit for you.

As my Dad withdrew, I would just light a candle and sit by his side and tell him over and over (as best I could), I love you, we know you're ready to die, it's OK to leave us when you're ready, and we just cried rivers till there were no more tears left. I found that the less I denied the process and just accepted it and went along with it, it got easier. When we knew it would only be a few more days, we quit cleaning, quit cooking and really focused on just being present with my Dad in whatever way he could handle us being with him. Don't let the routines of life be an escape from the sacredness and meaning that can be found though this experience.

{{{{HUGS}}}}

[farmer mama]

Thanks so much for sharing your experience. Your post brought tears to my eyes. I will check out those websites. Thanks

[rainy32]

farmer mama

it sounds like you are already engaged in the most important ritual of all -- using your self and your life to make someone you love more comfortable and at peace. every act of love and caring that you perform can be done mindfully -- and therefore will be even more sacred. you're also doing the important work of teaching your children about impermanence, about life's sanctity, and about family's importance.

every moment you live is ritual.

i understand the pressures given the religious differences -- but there are several things that can be done that cross those differences -- ritually washing your fil's body after he pases, planting something in his honor to symbolize the renewal that death can bring, having everyone say a word of gratitude to him before he passes....

peace to you, and to bippity for sharing her story, too.

[kama'aina mama]

We made a decision to help my mom die peacefully at home when she had terminal cancer. We didn't do anything specifically like ritual.. we just each of us did what we were moved to do. Sit by her bedside and reminisce, read poetry that she liked, read some of the more beautiful passages from the Bible, like the Psalms or Song of Songs, or just sit in quiet and hold her hand. Towards the very end, when she was in a coma it sometime sfelt weird to sit with her alone so we would go in twos and threes and chat while sitting around her. We may never know if she heard any of it, but if she did she spent her last few days here listening to her children talk about their love for her and for each other. Remember, too... to support each other and to take breaks. Go out for a walk, go sit in the yard and enjoy the breeze, take your kids to a park. You are living in a strange land right now but you should visit normalworld every now and then, just for a break.

All the best to you and yours during this difficult and important time.

[farmer mama]

Thanks for the responses. rainy- I hear what you are saying about every moment being a ritual, and I like your suggestion about washing the body, planting something, etc. I will just be MIL, BIL, dh, myself and the kids, so it is falling on me to help facillitate these things. We already have plans in place for what to do after, we have found a co-op funeral home (I think this is what they call themselves) that will come when we call to pick up the body (but we can take our time), and they will cremate (sp?) him without embalming. FIL does not want to be in a hospital even after death, so this is a good fit for him. I think I am going to be the one to help with the washing and dressing before they come and I think this would be a good way to "ritualize" the experience.
kama'aina mama- Thanks for sharing your experience. Although the bible passages don't apply I like the idea of reading to him, and just sitting and remembering. Today is my day to be at home and I am really appreciating it. Ds is napping and I have the house to myself so I am doing laundry, gardening, feeding the animals and pickling beets. It feels so good to be focusing on living. Dh and dd are at the guitar store...it works for him. Thanks again everyone for the advice and much needed support.

[Joyce in the mts.]

My FIL died at home in '99.

He became a very powerful presence to be with, the closer to his death he drew. Being with him touched me very deeply.

We all took turns, his children, inlaws, exwife, etc. We sat with him, held his hand, talked to him softly, read to him, had his favorite music playing.

I can't remember who told me this, but someone told me that hearing was last to go...so loving whispers, singing of loving songs, flowers around...y'know...similar to the stuff you might do for a birthing.

Also....let me say, that my experience showed me that it's the very same energy propelling a person through death as propells them through their birth. Very profound.

Immediately afterwards singing helps to ground the emotions. It's a very powerful experience.

Lovely that you are there with your family. Hospice is wonderful and helpful.

Warm thoughts
Joyce in the mts.

[farmer mama]

Thanks Joyce and Penelope for sharing your experiences and for the support. I am feeling less overwhelmed today.
Joyce- I really hear what you are saying about the birth/death connection. It seems to me that with my FIL, his layers have been gradually removed, and so right now he seems down to his essence or soul. He is very emotional and sensitive to the emotions around him, but his love for his family is completely intact and strong. It is pretty incredible.
Penelope- thanks for sharing, and taking the time to respond. Thanks for the offer to pm, I may take you up on that. Sounds like you found some very appropriate rituals for your dad ( the Missal, Latin, Shakespeare, etc.) What I am getting is that we just need to find the things important to him, and go with it. (I know this is kind of obvious.) For him it has to do with his Irish descent, so we are focusing on songs, pictures and memories from his trips there.

Also, we talked with MIL and I am the one she feels comfortable with to clean and dress him after he passes. She feels really uncomfortable with a stranger doing it, and in my midwifery training I have had to do things that require a level of detachment (suturing, etc.) so I have confidence that I can handle it (I hope). Anyhow, I think I can do this in a way that is respectful of him and of the energy surrounding his passing.

[obeyacts2]

dying at home

Sorry to hear about FILs terminal illness. I work for a home health care company that cares for many hospice patients. I have cared for the dying at home for about 12 yrs. The best advice I can give is to just be with FIL, avoid discussing anything he finds upsetting , and let hime know it is OK to go. Even if he appears to be in a coma/unconcious, he may still be able to hear and comprehend events around him. You say you are a midwife, are you a RN as well? If not, and you have never done postmortem care before, feel free to PM me.

Laura

[farmer mama]

laura- Thanks for the input. Just to clarify, I have been trained in midwifery through the apprenticeship model but I don't do any births since my kids are young. I am not an RN and have no experience in postmort care, so any advice would be great. The hospice nurse was fine with this and will also be available for questions.

[farmer mama]

Just to clarify I mean the hospice nurse was fine with us doing the clean up and dressing after he dies ourselves, and that he is available for our questions. Obviously you (Laura) don't have questions. Last night was rough, FIL had two seizures and was in such pain we had to give him morphine. It was funny how it felt like I was at a birth. DS slept all night so that was convienent. We can't wake FIL up this morning so we are just waiting to see if he is just sleeping off the meds or if this is how he is going to be. Thanks.

[kama'aina mama]

I don't have much to add but you and your family have been very much on my mind. You are faced with an important and difficult job and I admire your dedication to doing it well. And I agree, it is so much like a birth. When my mother died I had never been at a birth. My sister had her daughter about a year later she allowed my older sis and I to be with her. Older sis and I talked later about how much alike in some ways they were... bookend miracles in a strange way.... with those of us firmly planted in this life standing by in awe.

[applejuice]

My DH died last year at home after fighting prostate cancer for seven years. We had hospice care, but you should research your religious faith and research your state's requirements for what you can do and what you need to do. Perhaps ask your FIL what he would like for his funeral. Ask him what he would like for his last days, as a movie or a story or special food.

I looked into building my own coffin, but it turned out that he died before I could put all of the information together.

I looked into sewing a shroud for him, and, again, it turned out that he died before I could finish it. I buried him in his wedding outfit which he hung prominently in the closet. I began to wonder if he did this deliberately.

We planned he would die at home.

He wanted to die at home.

He was afraid of dying.

Our last night together, I stayed with him as I had every night of our twenty-seven year marriage. He had trouble sleeping, however he always had trouble sleeping. He had trouble breathing; I called the hospice and I asked for a tank of oxygen, and they were quite rude to me, which I thought was uncalled for.

When the sun rose, we went through our photo albums with DD, DS#1, and DS#3. DS#2 was away at college.

I made him breakfast, but he did not eat it. He had not been eating well anyway.

By late morning, we took turns of fifteen minutes each sitting with him and reading stories or looking at the photos of our life together as a family. At the end of my fifteen minutes with him, I turned around and checked the timer. I began to reset the timer for the next fifteen minute shift which would be with DS#1.

When I turned around again, he was laying prone, very still. He was not breathing. I began to cry and called for DS#1 who came immediately.

DS#1 and DD helped me wash his body, trim his nails, and shave his beard. We dressed him in clean underwear, and put on his wedding outfit. Then we called the hospice.

They pronounced him dead. They took him away.

I wished that I had waited a while longer before calling them.

It was a shock to see him carried out and driven away....for the last time.

I saw him the next day in the casket I had selected for him. He was buried within twenty-four hours.

Honestly, if I could have buried him in our backyard, I would have.

DH was lucid until the end, so this was a blessing to us as a family.

My Father, who died three years earlier of the same disease was in a coma for the last three months.

[farmer mama]

applejuice- thanks so much for sharing your experience and I am sorry for your loss. As far as legally, we can keep his body on ice for 5 days. The plan is to have him at home, I will clean him and dress him in clothes MIL picks out, the family will spend time with him for several hours and then we will call for him to be cremated without being embalmed. Sometime later we may take his ashes to Ireland. He doesn't want a funeral but is okay if we need to do some sort of service for him. As far as dh's and my beliefs, since they aren't shared by the rest of the family we may do something by ourselves. It interesting that you talk about him being taken out, our hospice nurse recommended saying goodbye to him in bed and then not watching him get into the van, so our last memory is of him being peacful in bed. What do you think?

[applejuice]

Yes, I agree with that approach. Let your last memory of him be of him resting in peace.

I remember seeing my Father in a ziplock bag in a tub on his way to the morgue in the hospital; so sad.

I remember seeing my DH rolled out of my room, down the hall, out the front door, and into the hearse. I stood on the driveway and broke down. I was witnessing the last time he was leaving our home, never to return. The home we both chose, loved and worked on for eighteen years.

[farmer mama]

Hi, just a quick update. My FIL died last week at home, surrounded by his family. It was really hard but really beautiful. The last weeks were really difficult in terms of caring for him and there were times when he was aware and was really frustrated and confused, as well as times when he was very clear and kind. Right before he went into a coma, he pulled it together, and talked with us for hours about how much he loved all of us, how thankful he was, and expressed his concern over how his wife was going to cope. Then he went to sleep and didn't open his eyes until right as he was dying. Taking care of his body was no big deal as we had been cleaning him for weeks already, and I think it was all arranged in a way he would be comfortable with. My 2 year old said "good night" and "I love you" right before his death and then I put him to bed, and my 5 year old was on her dad's lap right there for the experience. She did really well, cried with all of us but was okay, and I think that seeing the process really helped her understand what was happening. Anyway, thanks for all your support and sharing of experiences.

[lisamarie]

I just wanted to thank you for coming back here and sharing about your FIL. I am really sorry. But it sounds like his passing was one of peace, family and love. And that comforts me~not only for your family, but also for him and others here who are going through the same thing. Its so good to hear from others and what they have gone through. We are here for you and please know that you can come and talk about your experiences, your FIL, your feelings and any questions you may have.

Hugs & Love~

Lisa

[Quirky]

I am so sorry for your loss and I am so glad you shared your story here. I have tears in my eyes reading it...it sounds so amazing, and so different from what too many people experience. It sounds like a good (although painful) experience for your whole family.

Take care of yourself, your family, and your little ones.

[farmer mama]

Thanks for the additional support. We are still just figuring out how to process all this. A very close friend died 4 days after my FIL, also from cancer. I haven't even allowed myself to fully grieve for her because I have been so emeshed in supporting my dh and family as well as taking care of my kids and all the practical stuff like cooking and cleaning. Tomorrow we are heading out for her burial and memorial service so I hope I will have the space to let the emotions I have about her loss settle in. Again, thanks for the support.

[Quirky]

Oh my gosh, you've really taken it on the chin this month, haven't you. I am so sorry for the loss of your friend!