What If I Don’t Want To?
If I wanted to, I could also easily go into a state of shock right now. But I don’t want to, so there. Instead, as I’m holding on to my sense of sanity with my fingertips, I need to update 1) some of my suggestions from the previous post and, 2) my sister’s adventure. Re: the suggestions – Please highlight BE PREPARED FOR ANYTHING and start practicing tolerance, patience and resilience immediately. At every visit there was something new to deal with. The first few times I noticed myself reaching deeply into my bag of knowledge, skills and abilities, I also noticed the feeling of pride sliding by. I was doing OK. Little did I realize how exhausting it would be. Therefore, I stand by the suggestion to develop a routine. If you wake up each day it’s a good start. Even if every day puts you someplace new, plant the stakes that ground you to some good routine. How we wake up and start the day, and how we prepare for sleep are critical. I’ve seen effects of poor sleep hygiene and they are not pretty. My family has often suggested that I missed my calling by not becoming a mattress tester ala L’il Abner. They call me a Champion Sleeper. The fact is, I need good sleep. So maybe this advice isn’t for everyone but the next is: Eat Healthy Foods! and when the choice is to indulge in a treat do as my 5 yr and 363 day old grandest daughter does, and savor it. Enjoy it Mindfully, as I recall the number of bite-sized chocolates I chewed the other day.
Keep A Diary – but only if you want to
This is part of the ‘being organized’ piece and it starts immediately. I started keeping a small notebook and I’ll probably carry it with me as my Plan B. I’ve found that a simple large calendar / appointment book, yes like in the old days, works well for keeping track of what’s going on at the ‘Extended Care Facility’ and with my sister. For those who use electronic means, same thing. It is equally, if not more important, if you are caring for someone at home because it’s more difficult to notice subtle changes in our loved one’s status without some objective measures. This is an invaluable tool, especially when communicating with Health Care Providers. The following is a sampling of recent diary entries.
Whose Trauma Is This, Anyway?
4/15 My sister’s in ‘lock-up’; spoke with 2 RN’s, 1 RN Manager, 1 Nurse Practitioner (NP), 1 Recreation Director, 1 Social Worker, and 2 CNA (Ceritified Nurse Assistants) to get the story. (names of all pertinent people are recorded). Bottom line: staff was afraid for her safety because she was found going near the elevator twice and threatened to ride her wheelchair to the bus stop and go back to NYC, so they put her on a locked unit. Extracted committment that my sister would be back in her former room by the next day, at the latest. Made appt. for us to meet with Administrator, RN Manager, and Social Worker for next day.
4/16 Meeting agenda: Tell what the experiences of the last 2 weeks have felt like to my sister and myself. No blame, no excuses, just clearing the air, building trust and relationship.
4/17 Good day; out of ‘lock-up’; saw MD; brought pizza; we’re on a roll.
4/18 Phone call mid-day; sis took a fall getting out of bed, no injury; 10:30 PM phone call; sis fell getting out of bed; laceration over right brow; going to ER for evaluation.
4/19 Up to see sis; she’s not in her room (again); 1:45 PM find nurses; sis was admitted to hospital; drove to hospital; she looks fine, has only 2 ‘butterfly bandages’ over right brow and bruising; the food is better than at ‘the other place’, she has a private room with her own TV, and a view of the Lake; MD left instructions to be paged when I arrived; he arrived about 40 minutes later, and so delightfully refreshing; he sat down and proceeded to get to know my sister, in her own words; he asked about any weight loss – she’s weighing 93 lbs today; the food has been pretty terrible you-know-where; and she has had a vicious cold the last 2 weeks, which she attributes to me; MD goes on to explain that within ER protocols, X-rays were taken of her head, neck, spine and chest; head and neck fine; spine shows some degenerative arthritis, and the chest X-ray shows some fluid (probably from the cold), and it also shows a ‘mass’ about 5cm x 3 cm; the radiologist suggests that it is malignant; a CT scan could give us more information; a biopsy would tell us more; etc., etc., blah, blah, blah….He was great.
And the mind, heart, and physiological stuff that is going on in this body I call ‘mine’ is working at warp speed. At the same time that I’m using my Jedi-like powers to laser-beam my focus on my sister’s behavior, I’m noticing all the thoughts and feelings zooming around within me, and they are legion. This was day 20 since my sister and I began this journey, together, from NYC to here and now. Who’s trauma is this, anyway?
So, the MD is barely out of the room when my sister leans over and, clear as a crystal tone announces, “No Treatment”. One discussion down. The Nutritionist came in to fill out the menu for tonight and tomorrow. “You can have anything you want!” she tells sis. And only the red wine was amiss from her pasta, red sauce, and garlic bread dinner.
4/20 A day off for me to rest and play 9-holes of golf, and for sis to decide whether she wants a CT scan or not.
4/21 At the hospital: CT scan done. A visit from another marvelous MD. CT shows additional infiltrates, and involvement of lymph nodes. Referral to Hospice is made. I was designated Health Care Proxy last September. Fortunately, we had a brief discussion about Advanced Hopes, primarily about intubation, ventilation, artificial hydration and nutrition, etc., and with Hospice service my sister will receive palliative care, and returns to the hospital are to be avoided. This is also a great service to me, as designated primary caregiver, aka PCG, Hospice staff will be direct providers of care for sis, advocates, and support for the rest of us.
4/22 Discharged from hospital to ‘old’ room. Hospice to meet with us for Admission procedure tomorrow.
4/23 Met with Admissions person, and had phone calls from several other Hospice staff. The RN will come tomorrow.
4/24 No ‘heads up’ phone call from RN, therefore waiting around for a couple of hours. RN did an excellent job, and will be visiting weekly. More phone calls, and one long one from the Social Worker who will visit with sis next week.
4/25 Trying to make her room more homey. We already ‘lost’ a clock and a large pillow during the ‘lock-up’. Now replacing clock, bringing a blanket (because sis is often chilled), new CD of Elvis Gospel Songs (this is a getter! I’ve given away more of these CD’s than, even, copies of “I Asked For Wonder”), a small oil painting to hang on the wall, a soft lighted lamp, what else? Oh yeah, I forgot about trying to set up a new savings / checking account for sis, for which I’m required to furnish a driver’s license and/or social security card. We have nada; nothing like that among the spartan belongings that succeeded in making it this far. This was a 2 trip day and I’m taking the weekend off.
I’m Still Asking…Whose Trauma Is This?
Another responsibility of Caregivers, secondary as well as primary, is to keep relatives, friends, acquaintances, and news media (as is your wont) informed about what’s going on. Fortunately, again for me, all sis has is me & mine, and more distantly my full sister. There are websites that one can Register with to manage communication with a crowd. I’ve seen them work quite well for those inclined. Back to my good fortune, I sat down to compose the e-mail to my Sister:
……….. I confess though, I’ve been spared [my brother], et al, so sis has to be a cake walk; I prefer my roller coaster rides to be for fun, and at my timing. OMG!
Apologies for the use of ‘cake walk’ that I have since learned is racist. I’ve always pictured a cake walk to be something smooth and sweet and self-satisfied, which is the intention here. The OMG! (so OOD!) refers to a time with my sister when we used the expression ‘cake walk’. My Sister and I LOVE roller coasters and stuff. We even bungee jumped together. One time, we decided to do a marathon roller coaster ride, thing. It wasn’t the Giant Ones, but it was a good sized coaster and we rode it for hours. On, Off, On, Off, look at the pictures, back On, Off, for hours. It took us a lot of Ons and Offs to get our postures correct for our picture. And we notice, right behind us (on one of the Ons) is a picture of a guy and girl, man and woman – mid-to-late 20’s – and He is hysterical on the coaster! Mouth wide open, arms flexed to the max, and half out of his seat, and … next to him his woman is just sitting there, un-disturbed, a bit like The Queen; she looked like she was on a cake walk, and we laughed some more, with the guy in the picture standing right next to us, still chuckling.
Well, compared to the alternative referenced above, I do think that caring for my sis will be a cake walk, but only by comparison. Sis has been doing so well emotionally that it’s easy, for some, to mistrust it. After she said “No Treatment’ she leaned back and relaxed, like a huge weight had been lifted. After the Hospice referral we had a quiet talk. Actually I did most of the talking. I gave sis my spiel, The Last Great Adventure of This Life, the time of making peace, and being peaceful, etc. I guess she heard because when we were just staring at the TV she asked me a question about our Dad’s death 33 years ago. I knew, now, that this was festering all this time. And we talked about it, and re-visited it again a few days later.
At the ‘few days later’ visit she also asked about the e-cigs, and no, she cannot have any when she’s using Oxygen. This was the same day that an article appeared in the local newspaper about a women who got her faced burned to a crisp doing that very thing. Sis was OK with it, “we’ll see how it goes”. And she asked “How long do I have?” I have a different spiel for this question: “That is outside the scope of my practice and my influence, etc.” But… with a referral to Hospice, the referring MD is implying a life expectancy of 6 months or less. She was very OK with this, also. I do reiterate, it could be any time and we have a good chance of knowing when the time is getting very short.
I Think It’s My Trauma
My sis looks, and acts, like she’s on a cake walk, taking it all in stride. This is a women who crashed and burned, tumbled to the depths of despair after her Mother and Sister passed away within months of each other, and now she can rest. I signed on for the duration and now I have to take all my best advice to do this as best I can. There’s still something new every day. I might as well accept that’s the way it is and be ready for anything.
The Self-Care aka “Doing Happy”
As I told my husband when he invited me out for an end-of-work-week happy hour, “I like to do Happy”. It’s very important! We also went to a Leon Russell concert, had friends over for fun and food, played golf – by myself yesterday, had dinner, and stuff, with 2 precious friends I hadn’t seen in about 6 years. I’m tired, and I know it, and I picked up an easy reading novel from the library on my home today, so I can begin my sleep hygiene routine, soon, very soon.
It took me awhile to sort out how I was going to manage this increase in responsibility. For me it means shifting gears and prioritizing constantly, and now my priority is to go to sleep, after ….
For an Excellent discussion about what happiness is, who says they’re happy, and who doesn’t, “Happiness And It’s Discontents” is posted on the MindfulDying Facebook Page. This is a great place to post occasional articles of interest, and keep them easily accessible. Hope you visit, and ‘like’ us also. Goodnight Moon.