Playing Catch Up

Whoa!

I see it has been a while since I posted. After I talked with Tina, mentioned in last post, I want to clear up a few misconceptions she had of the conversation as related in an email to Cherie and accidentally forwarded to me. Have you girls not figured that out yet?

“caught wen driving home from mom’s
at one pt she wanted to get off but didnt”

There was a traffic situation emerging which resolved itself. If I wanted to get off, I probably wouldn’t have answered.

Later re: Amber’s report:

asked Wen about all this – is mom in bed, etc. cracked feet etc.
she downplayed most – she said Amber always wanted to get mom into hospice !
i asked if we should … thinking its a good sign
wen went off about no - she just revived last time, etc.
she calmed down – said no hospice – i said remember we were going to change companies, etc..  she still said no we are not there…. 

I wouldn’t really describe what I did as “went off” but I was adamant that we do not want a repeat of the nightmare that Hospice turned out to be. They moved a bunch of crap into her room, changed beds, wheelchairs, etc. Lost the leg pieces of her old wheelchair which have just recently resurfaced. They did visit and read to her and pray with her, but as I tried to describe to Tina, hospice is no longer strictly and end-of-life deal. They use it ALL THE TIME to keep them alive and the checks rolling in as long as possible. In the over four years that Mom has been there, I have had many conversations with others whose parental units are incarcerated there and they all seem to agree that the focus has shifted.

As fas as a different company goes, the reviving results would probably be the same. If Tina does decide to go with hospice, for some reason wanting to keep Mom alive as long as possible, then she can take the lead with moving all the stuff in, rearranging Mom’s whole room, dealing with the people, meeting with them, trying to describe Mom’s situation so they can best deal with her… And then, in six months, when Mom graduates, she can meet the equipment people on their own loose timetable, move all the stuff out, deal with Sunrise transition, set up the old bed, rearrange everything, etc.

Repeat: Sunrise LOVES hospice, since their workload is cut and they still get all the money. It’s a no-brainer on their part, and serves the one and only purpose of keeping them alive.  I also should have learned by now to not recommend anything to Tina, even when she asks. It seems like whenever I do, she ends up doing the opposite.  Example: Hospice company I researched and recommended based on people’s experiences there. She picks another one without even making any phone calls. So, done.

Of course, I just did it again. The recommending. When will I learn?

Then from a follow-up email:

“do you go in her closet and check for clean cloths (smell test) ?  one time i found a pile and washed them in the evening while i was there.  you could report them to caretakers and ask for action if needed. 

one time i went and she was wearing someone else’s night gown so someone else had her good ones or they had to trash it – please let me know when she needs something critical like gowns, etc.  blah blah blah”

 

Normally, I do not check her closets. If she is asleep when I get there (99.9% of the time…) I straighten up the room and water the flowers. I bring her hot chocolate or a coke, get the candy out and  make sure the Teddy Bear is there, that she is comfortable and positioned correctly in bed. This is something I have mentioned to Stacey several times and if Tina wants to emphasize too, it may help.

 

Jim actually noticed it first, that when she is in bed, her legs are often all twisted up on the wall side of the bed. It looks like they dump her out of her wheelchair into the bed and then don’t straighten out her legs. When I help her get settled, she is very squeamish about touching her feet, so I take her lower limb into my hand and stratighten out that way. The first time I did this, Mom said, “You are an angel.”

 

Instead of messing with her clothes and room, I spend all my time with her, stroking her arm, kissing her, telling her I love her. Many of our conversations simply boil down to this now. It really is sweet and touching and proves that nobody loves you like your mom. She always says, “You’re the only one who comes to see me, I’m so proud of you.” Then she moves on to how nice my teeth are and how curly my hair is. This is a sure-bet repeat each time. I actually carry a pair of halloween teeth around in my glasses case now, and put them in whenever she is going on and on about the teeth.  She hates them. I should get a wig…

 

More from Tina.

 

“Cher and I were talking about when mom dies and appropriate actions.  Cher thought we might all want to go to Kansas, but I told her that presumably, you would take care of disposition of mom’s body for donation – OR IF YOU ARE OUT OF TOWN, that Sunrise knows exactly what to do in your absence.  You have not sent me papers or contact number so YOU ARE THE LEAD FOR THIS unless you let us know otherwise.   RSVP

 

Then we have to get the room cleaned out.  If you are out of town or don’t want to deal with this, I can call 1800 got junk and they can swat team it.  you will be able to decide what you want if anything – Jamie ?

DPOA – please let us know how you see the above playing out – what you are willing to do – what you won’t …”

 

I will get the room cleaned out ASAP after Mom dies, if she ever does. For a while there, she was saying she was tired and “ready to go” but the last time I was there, she said again, “I’m not dying anytime soon.”

 

There is really nothing there worth keeping, the furniture can easily be sold or given away on Craigslist right from the room, probably so no extra transport required. Maybe some photos and personal items and the EMC pillows, if Tina wants them. I will keep the Teddy Bear, he is such a great companion for her and always makes me smile. Clothes can all go to Goodwill. Unless by the time she finally kicks, you guys are old enough to start wearing them. HA HA. Joke.

 

As far as going to St. Louis, any legal questions can probably be cleared up on the phone, and save the money spent on a trip to St. Louis, where Mom actually has no business anymore.  We have lots of great steakhouses in KC, much better than Outback, and the fact that Cherie was willing to come would be great. Like I told Tien, I think I am done with St. Louis for my lifetime except for a couple of friends there.

 

I do have the KU paperwork and Sunrise does too. I have not chosen a funeral home yet. At some point I did make some calls and found a fairly inexpensive service. In Kansas, it is different. KU will not come and pick up the body, like Wash U did. They have to be picked up by a funeral home, a death certificate issued and then they transport to the hospital or wherever the fuck they take them.

 

In conclusion:

“Wen and Cher – please let me know your thoughts on all this – it will be a surprise when she finally goes, but at least we will have a plan and know how the 3 of us will go on.

 

I still love you both.  Its fun to be in frequent touch with Cher. Wen – I miss being in touch with you.”

 

I did respond to Tina’s email but haven’t heard anything back. This closing is interesting, seeing how events have unfolded with Tina during all this. Maybe if you miss being in touch, you might want to think about the events leading up to why we’re not in very close touch anymore. And your part in that.

 

Anyway, I agree that at least we talked and I will keep trying to touch base with you both when I visit. We call Sally once in a while and Mary Hancock. There really a’int a whole lot left. I left you both messages when I saw her for Christmas.

 

Tomorrow is my day to go again, so will try to do better on the updating.