She asks me to bring her a hat, gloves, and sneakers so she can catch a bus and go home.
Never mind the catheter or the fact that she can’t bend over to put shoes on and may not fit any of the pants I’ve tucked into her closet at the nursing home. Never mind the code at the exit door or the long hall to reach it.
But it may be that the hospice designation is wrong. What if she was concussed when she fell that Sunday? And what if the three lorazepam that she’s since admitted to taking afterwards made her loggy, incoherent, and depressed her respiratory function, leading the doctor to mistakenly conclude the next day that death was imminent?
Here’s a short list of immediate problems.
Who’s going to manage this transition?
You can’t get rehab while on hospice and dropping hospice would mean losing the care of that terrific team. The nursing home has yet to inspire confidence.
My sister doesn’t do PT. She just doesn’t — even to the point of turning professionals away at her door. I keep telling her she can’t go home until she can walk a little, but this makes no sense to her because she has barely walked for a long time and has kind of managed (not really, but).
Less critically, I started cleaning up her apartment. The newer hospital bed and oxygen equipment were picked up by the lenders immediately. K put the urine-soaked chair into the dumpster. I gave away some of her dishes and — this is big, really big — I filled four leaf waste bags with some (but not all) of her hoarded paper. Threw out: the collection of Kleenex boxes, thirty-plus truvia containers, stacks and stacks of clippings, travel brochures, coupons, and peapod order slips.
The disorder created by paper in her small spaces has been a major source of contention.
She was going to decoupage gifts, you see. I kept ordering her ModgePodge. Glue sticks. But the piles just grew and grew, like ice floes or delta deposits occupying more and more of her precious square footage. No gifts.
So her place is a little empty. A basis for controversy. A basis for more fucking work. You cannot believe how many chairs, hassocks, and stools we have supplied over the years. Her remaining hospital bed is one K and I obtained through the Freemason’s HELP program. She refuses to sleep in it. Has done nothing but complain about it.
I know she’s feeling better because the fiery temper is back. Her virulent projections. The lack of reason. The nasty assumptions and accusations.
If she’s not gonna die any time soon, I’ve got to rejigger this a bit. And maybe a lot. The thought of another major piece of advocacy comes at me like a tsunami.
Oh Dee … I’m just glad you can vent here …
Wishing you peace of mind as you do “the next right thing” each step of the way …
Thanks Liz. Step by step, you’re right to point out. And just a note — this post ranks for me as a fairly dispassionate description. My rants take it up several notches.
Now I „liked“ your text but of course I don‘t like your trouble – I wish you patience.
To “like” a post signals that you’ve checked in and read. That means a lot to me. It doesn’t have to be more than that. But thank you for chiming in.
Oh man Dee! What a roller coaster. 🙁
I’m across the country, so only know what I know here…but I remember when my mom was passing, the Friday before, she sat up directed us who to call (and who should come by, who we should just talk to on her behalf etc), what she wanted to eat for her 3 meals on Sat. and that she wanted to celebrate early Rosh Hashanah. We were busy that day and if memory serves, her hospice nurses said this can happen, but she was still dying.
However it goes for you, may you take care of what you need to, want to and yourself. xo
from my caregiving….there’s no way to KNOW what the answer to anything actually is…it’s all
playing it by ear, day to day
it is beyond wearing for you…beyond. The one thing i think of this morning is how
reading this emphasizes the need for each of us to really seriously work on all our
rough edges BEFORE these times come. To become the kind of person that our
caregivers can tend with gentleness and hopefully some kind of ease. Your sister was
never able or inclined. and here she is. I am so sorry Dee. Really try to lean on
the Hospice people. Big Love to you…..
Well you’re right to point out the not knowing. Should she be doing rehab? Or not? I don’t know. There will be a team meeting this week. I’m sure some kind of, if not clarity, plan will come out of it. And no, the inclination to make herself bearable has never been there. I have tons of support beyond the hospice people. Just so everyone knows.
Yes to the comment above mine–My dad was sitting up and getting ready to go home–lucid, good color etc–dead by midnight. Hospice rides this like a wave. They’ll be checking the urine bag.
I was told to watch the urine bag. And for blueing of hands and feet. Talking with her this afternoon, she was too tired to form words again, really.
Wishing you patience and strength as well as you continue to navigate this difficult time.
Thank you, Michael. (PS — to my book loving readers, you should check out his blog).
“Beyond” Grace said. I say “Heroic”. I would you had close confidantes to help you through the decisions and the consequences, whatever they are. I really can’t imagine how you manage so much diligence for so long dear Dee. No yoga practice holds a candle to your practice. I’m feeling grateful that both my parents ‘dropped dead’, one in his sleep when I was nine, and the other in her kitchen when I was in my twenties living elsewhere. Terrible to be thinking of me, but only human. I send you virtual love, wishing to bring homemade soup instead.
I DO have close confidantes. Close friends checking in. My husband, who is a rock. A really good therapist.
My father died in 1986. My mother in 1996. I like to quip that my sister robbed me of the primary benefit of The Dead Parent Club, which was not having to do this kind of intense caregiving.
You were orphaned early.
Thanks for the love.
Having lost my husband in January, (he was near to being your sister’s twin in the final months)-It is more than painful, and the stress you have been under can be debilitating. I understand what you are going through all too well. Hang in there Dee, you’ve done all you could do. There is no instruction book for what you’ve been going through, and you have to remember to take care of yourself. Hug your husband and breathe deeply. Love and hugs, Anita.
p.s.-life goes on, and I am more at peace now than I have been in years.
I’m so sorry to hear about your loss, Anita. But to hear that you are experiencing more peace than you have in years is heartening. Sometimes a lot of the grief comes up front, I think.
Thank you Dee, –you are soooo right I.hadn’t thought about the grief coming “up front” as you put it. You’re absolutely right, by the end, about the only emotion I had left was relief for him that his struggle was over. Love and hugs- I wish you peace as well.-Anita.
Dee, I remember when my daughter moved away at 16, after an awful 2 years, I told my therapist that I was actually doing okay. She responded by telling me that I’d already done so much of the grieving as daughter was poised to leave. It made sense. Thinking of you.
I know grief-in-advance happens. There is such a longer story behind your comment and although I don’t press your privacy by saying this — I hear the harrowing passage that this must have been.
Dee, I think of you every day, wondering how you are managing. Giving you imaginary hugs to try to help you along this hard road.
Thank you Sue! I should investigate the comment problem but I don’t have it in me right now. (I did finish the NYTimes crossword today, though). It’s nice to see you over on Instagram, too.
It’s, Sue. B. The name thingy was blank again.
That name thingy is the very least of your worries. I wouldn’t even give it the status of a worry!
K’s mom saw people getting married in the sky… The not knowing- what is happening? what will happen and when? should happen? Exhausting & crazy making. Please use and lean on all of those around you, keep tending yourself, body & spirit. More Love to you Dee.
My sister says there are people at the end of her bed at night. Wonders why Finn is there. And funnily enough, asked recently who was getting married.
Oh this reminded me of a dear friend– her mother in law was dying and kept asking my friend to bring more chairs into the room. When my friend went to sit in one of the dozen or so empty chairs-MIL said “no, auntie emma is sitting there!!!” I hope my room is filled with chairs at the end.
What a wonderful metaphor.
The the not knowing is tough, the just going, even tougher, but we do go on. Dee you have support from near and far, from loved ones, from friends close by and from those of us who dwell in this cyber neighborhood. As someone who is a member of the Dead Parents club, the dead Sister Club, who took care of parents, who wasn’t able to take care of sister, I know the full range of emotions and thoughts that you are facing. Come here when you need to, we will always listen with open heart and arms. Above all, as many have said, take time for yourself.
Thank you thank you Marti. Today walking, I ran into a friend who pulled out her ear bud, opened her arms and announced, “I was just praying for you.” Another last week after a brief exchange said that she would do Reiki for my sister. How could I ask for better neighbors and friends? And you guys here have, no surprise, turned out to be full of wisdom, empathy, and really good advice.
Hugs, hugs, hugs. This is so hard. You are doing great. I’m thinking of you.
Thanks Dana. I’m learning how many others have been through at least pieces of this experience.
Oh Dee. I am so sorry. We went through a lot of this with my mother-in-law, but she was very passive. Had a referral to Hospice, she rallied a bit and then she lived two more miserable years in a Medicaid nursing home. There was no way we could care for her. My aunt is dying at my cousin’s home right now, in home Hospice and in full out dementia. I hope that she goes today. Getting old ain’t for wimps. Holding you in the light.
Similarly, there is no way this house would work with someone with my sister’s disabilities even if I was inclined (which I’m not). My sister could go on for another two years, I suppose. A little hard to imagine, but…