This is a post mostly about stuff I really do not want to write about, but which I feel like I have to write...
I have been hearing a lot of direct questions about why I’ve chosen to be in my own home while I’m dying, and I’ve been hearing second hand consternation from people who aren’t talking to me directly, and I’m tired of defending myself.
So, of the million reasons why I’ve chosen to be in my home, and the hospice home if need be, while I’m dying, here are a few:
-This is where I want to be.
-This is where I feel peaceful and right about being.
-I have not only bent over backwards, I’ve twisted in circles, tied myself in knots, and stood on my head trying to make this process easier for people around me, and trying to be available to spend time with people for the last two years. So if this last part of the process is inconvenient for some people, so be it.
-Dying is very hard work mentally/emotionally/physically, so now I am making myself available to myself and God to do the work that needs to be done. Time alone has always been crucial for me, as an introvert, and now it’s absolutely critical as a dying introvert.
-Here is a quote from http://www.hospicenet.org/ on the well-researched end of life stages of relationships, which can start happening long before the last few weeks of “life”:
The person may only want to be with a very few or even just one person. This is a sign of preparation for release and affirms from whom the support is most needed in order to make the appropriate transition. If you are not part of this inner circle at the end, it does not mean you are not loved or are unimportant. It means you have already fulfilled your task with your loved one, and it is the time for you to say Good-bye. If you are part of the final inner circle of support, the person needs your affirmation, support, and permission." (LINK)
If you have more questions, please use this hospice site as a resource. I’ve shared it many times but I don’t know if people are using it....
It is what it is. If you’re not involved any more/right now, don’t take it personally, this is normal.
-I am making this decision for myself, after praying about it. It’s not a question of making people happy or making things easy for everyone else any more (although I do try when I am able to). If people are happy, that’s wonderful. If people aren’t happy, take your unhappiness to God and let Him help you with it.
I am dying and my needs as I die are a higher priority than making people happy.
-This city has been my home for over three years, and it’s the first place that has felt like home to me in fifteen years. My community is here, my church is here, and my ministry is here. This is my home and this is my space.
-This is where my spaces are for creating art, it is where I feel best making art.
-This where all of my earthly possessions are.
-This is where my hospice care team is. I am NOT going to move somewhere that is not my home and try to summon the energy to form the kind of relationships I already have with my current hospice team.
I have spent over four months forming relationships with my team here, including communicating my philosophy of dying and end of life care with my team and answering questions from them about what my wishes are.
Why would I want to do that all over again when it’s already done? That would be foolish and an absolute waste of the small amount of energy I have.
-Along the hospice care lines: I need my family to love me and support me and affirm me. I need my hospice care team to support me and care for my physical needs. It is not my family’s job to wipe my rear and bathe me. Over my dead body (Ha ha, get it?). I think separating those areas of responsibility is very healthy and I think it will make everything easier for all of those involved.
-I have safeguards in place—two friends with keys to my house who my nurse can call to let her in, in case of emergency, a bed (and extra tea bags) for my parents if they need to come up here at any time of day or night, people who can do errands etc for me if needed, people lined up to take care of my wonderful dog... Etc.
-I don’t feel like I should have to defend my position, so here it is for the whole world. I hope this is the last time I have to go over this.
-The bottom line is that you can take a pancake tortoise out of it’s desert habit and put it in the ocean, or you can take a sea turtle and put it in the desert, or you could even set up terrariums with the right environments for each of them, but it won’t be RIGHT, it won’t be the real thing, and they won’t thrive in the wrong environment or a synthetic environment.
I’m going to choose where I will be while I’m dying, and I’ll let you choose where you would like to be while you are dying.
One last thought, while I’m on consternation:
Over the last few weeks, mixed in with all of my super-encouraging, helpful, loving, thoughtful, amazing communications from people (for which I'm very thankful), I’ve gotten a few emails from people who are contacting me for the first time in many years simply because I’m dying and they feel like terrible friends.
I haven’t really known how to respond.
Part of me wants to say that they should have been living all of that time without regrets, and if, at some point along the way, they felt they should have communicated, then they should have.
Part of me wants to say that God used the vast majority of my female friends who got married or moved away and fell off the face of the earth to teach me that friends come and go, and that I need to hold relationships loosely—and that is very helpful to me now.
What I have been saying is thanks for your letter, no worries, peace be with you.
The point of all of this is to say if your path naturally or unnaturally diverges from a friend’s path, either do whatever it takes to fix it or make sure things are healed and move on at that point, not way down the road.
We all need to live with no regrets.
We need to live so we could die tomorrow and not leave anyone in pain.
We need to do what we need to do to keep things right with people.
We need to take care of our own issues/needs/etc and not put them on someone else.
It is also true, as you know if you read the above hospice information on relationships at the end of life, that the circles of people who I have the energy and need to communicate with, or be with, has gotten smaller and smaller and smaller. It isn’t anything personal toward anyone; it’s what has to happen when your resources are limited in every way.
If I died tomorrow, or right now, I would not have any regrets about anyone who has been in my life at any point: God has gone over the things I know of that needed to be healed and they are healed. So if you’re reading this, please know that I hold/held nothing against you, and that I died in peace toward you. That goes for every single person who reads this.
Meanwhile, I must be in the quiet part of the intermittent bowel obstruction because my digestive tract has been relatively peaceful since Friday or Saturday.
My parents came up this past weekend and we got a two year burden off my shoulders—in the form of sorting, throwing, and giving away all of the excess stuff in my house, so my house will be easy to deal with after I am Home. I even got through all of my paperwork. It was amazing and it was the first time I’ve had energy to do anything that physically intense in at least three months. It was incredible and it feels incredible to know it is done.
The trade off on the organized and cleaned out house is intense hip pain. My right hip flared all the way back up to where it was LAST JUNE and it is/was unbelievable. At this point, I don’t think the pain is going to go all the way away but if I rest it and don’t stress it, it’s mostly bearable.
My understanding of this break from the bowel obstruction mess is that it’s a reprieve God has given me to get things done—like the house sorting and finishing a bunch of paintings I’ve been struggling to finish.
I’ll take it for as long as it lasts and ask for grace for whatever is next.
Which reminds me, speaking of what is next.... It struck me as stupid to be praying for a clot to take me home gently, quickly, and easily while taking aspirin daily to thin my blood, so I’ve stopped taking it. If you have a bone to pick with this, talk to God, not me.
Okay, I’m exhausted and going to sleep.
Please don’t feel any need to defend me etc, I’m done with this.
I hope this isn’t my last post because I really don’t enjoy dealing with this stuff.
Peace and love to everyone, everywhere. Martha