23 September 2014: Tuesday ... 20 days since ... Why? ... watching Netflix movies ... caring for mom ... stuck in house ... Dr. Maged today ... First Day of Fall 2014

A gorgeous, chill, sunlit day today as Mom just yelled to me this midday, as she does on occasion and I'm watching Netflix with my earphones on, and initially, I am perturbed, but she told me that a nurse was arriving soon to see her. Did not get her name but the door is open on this crystalline-blue first day of fall in Delaware in the home, that is not mine, and where I feel imprisoned because that is my decision.

  

        Silver Linings Playbook with Jennifer                   Brad Pitt, starred in the zombie flick,
Lawrence, who won Oscar for role, and Bradley           World War Z, quite a decent film with superb 
Cooper in 2012, in a painting renderings of the end       special effects.
of the film where their love is expressed.                          

Leslie, a new nurse, young, petite and married, is here at this time (1:01 p.m .) checking mom. As all the other personnel from Delaware Hospice, she is thorough and professional and engaging. They were laughing a few moments before I typed these words. It feels good to be at least making an attempt to record feelings and events in my life. About 2 hours from leaving for my appointment with Dr. Maged, who is my named provider through Delaware Care. (I have it mentioned with the numbers for the service on my phone.)

The visit to Dr. Maged was so worthwhile. He's a listener and he provided me options and feedback that made me feel whole when I left. I'll have blood levels taken (after a 12-hour fast) in the morning and I've already secured medication for my mood swings from Pathmark this afternoon, which after presenting my Delaware insurance card, cost me a total of $1, after Divya reconfigured the amount.

My relationship, the physical one by necessity, with mom reached a new level today when I did what she did to me when I was a baby. I wiped her bottom with a washcloth and you just have to get over it and deal with it and not be embarrassed by it. There are needs and one just has to get on with it. I did and she did and we moved on.

I phoned my new and developing girlfriend (for wont of a better term), Peg, today about my appointment and I had a welcome ear. She listens, much like my doctor, and she is responsive to the needs of others and she provides solace and answers to life's challenges. She is a remarkable person who I am very fortunate to have got to know, whether through her guiles to mom-sit or not, it has been in that word often forsaken by UUs, a "godsend" in my life at present. Thank you Peg for being there for me and my mother. You have the heart of gold and a steel determination and wealth of knowledge and experience. I am lucky to be able to share in its bounty. 

11 November 2013: Veterans' Day dawned clear and pretty warm ... it has been a good day with dad and Liz's first full day of her visit, good to have her here as she keeps mom ...

On a Veterans' Day early afternoon, Liz has a conversation with her beloved uncle,
who just learned today that he will be tapered off the prednisone being used to treat
his SVC Syndrome after talking with Dr. Grubbs' office. 

Today has been illustrative of better communication. Rather than go ahead and contact Dr. Maged about getting nursing assistance for mom, I spoke to dad and he said to wait (for what reason I do not know) until he spoke with Dr. Grubb's office. Well, he did talk to them and he did allow me to call Dr. Maged's office and speak to his nurse and get the ball rolling regarding care ... probably contact Manor Care service as they worked with mom before. I feel a need to be insistent as dad protests my going too fast. But what's too fast, we have such little time, but it worked out and hopefully things will move forward and we'll get help for mom to bathe.

Got a call and called back the social worker with Delaware Hospice, Linda Wills, Social Worker, who made an appointment for this Wednesday at 2:30 - 3:00 to be here at the home and discuss the options available. She is the one that suggested I call Dr. Maged because DE Hospice cannot provide nursing care for mom as she is not a patient of the service.

Last night dad made some drink/food requests that were interesting. He want Ginger Ale and smoked salmon and I got him some sugar-free chocolate covered vanilla ice creams. He ate one last night and he had another this afternoon at my suggestion as we listened to another singer I'd never heard of, August Seider (lovely tenor voice singing a variety of operatic roles on a 2-record set). 

Great to see him eat. 

He is eating more as I type out this note at 6:01 p.m., the NewsHour is about to start, and he is adding yogurt/mandarin oranges to the roast beef sandwich (with a little mustard) he finished earlier. He has completed it all. Perhaps it's due to the corticosteroid he's taking, at least for three more days.

Today has been confrontational. I got a call from Dr. Maged and he suggested a service Home Instead Senior Care, which I called and spoke to a, for real, Bob Bird, who arranged for a visit this Wednesday. Mom exploded when I told her and focused on the cost, which she would not pay and the fact that she did not need help to bathe. Well, thanks to dad's patience and Liz's help, she calmed and she may not need this help yet, but why not meet with this service and get an idea of what is available.

Dan from the RTA Home Medical Equipment company arrived as night fell to check and replace three of the oxygen tanks. He also mentioned that the oxygenator was too loud and also needed replacement. That will happen in the coming days and he also showed me the filter in the back that needs washing out at least once a week. I have never done it. We did the task in the bathroom sink and it was quite dirty. He had three more stops tonight before heading home. The office is located in Chadds Ford, PA.

Is it lonely dying? He locks the screen door at the front and earlier wandered where the CD box was for the Emerson Quartet performance of the Bartok quartets. He is detail oriented and this is how it has always been done (he has now arrived in the TV and asks me to go get some water in his cup because he is out of breath and is shaky, so shaky ... he mentions the mailbox and no mail and then remembers that it is Veterans Day today and thus no mail service). Dad also asked for his regular buttermilk with four, count 'em, Splenda. He is now watching Antiques Roadshow and Cecil Stoughton, the White House photographer who took the iconic image and only photo of the LBJ getting the oath of office on the jet with a blood-stained dress wearing Jackie Kennedy. 

I hope he gets some rest tonight. As Dr. Maged said today, he will sleep when he needs it, but he needs it tonight and I hope he gets it. 

Had to include this priceless image of Bethany Smith, yoga teacher, and her daughter.

"My little nugget isn't feeling well today. Praying its not a virus! #Naptime"

6 November 2013: Wednesday -- power outage, WIFI reconnect, Dad's diagnosis, Doug consult, Superior Vena Cava (SVC) Syndrome ...

What a morning. Heard a pop outside, a small explosive sound and the power went out and mom's machine began buzzing. I turned it off and started up the supplemental oxygen and then called 911 since I did not have the number handy for DELMARVA Power (I do now) and got tremendous response from two Mill Creek fire department trucks, one driven by Krissy and the other, bigger truck (and he was tall, too), Scott. We went to the backyard and I showed them the power pole that I thought might have been the source for the outage and Scott retrieved the number of the pole (each one has a unique identifier), which Krissy copied down, dutifully.

Mill Creek Fire Company3900 Kirkwood HighwayMarshallton, DE 19808302-998-8911

 

He insisted, once I told him about mom on O2 to provide their oxygen container, which he switched from ours. Later, I called DELMARVA and left a message on their automated call line. The power came on soon thereafter and I received a call from them. No idea what the problem was ... didn't stay on to hear any, if there were any, details. 

Lost our WIFI connection as the blue light was not on and could not find Dutchman on the selection list on the iPhone or the iPad. Went to the Web and searched "Belkin troubleshoot no blue light" and came up with iYogi and an Indian technician, Andrieshik (sic) Jain, who was just terrific. Knowledgeable and upfront about the problem, he took control of my computer screen and in less than an hour had literally cleaned up the problem and had me back with WIFI and Internet connectivity to my iPad and iPhone. There was a charge but he was also upfront about that, too, and even got the amount cleared with a supervisor ... they billed by Amazon/Chase VISA $119.99 for two services and loaded a Malware program that I can run weekly to clear up problems on the computer. Thought the money was well spent. I was glowing in an after-service assessment of the work with an online questionnaire. 

http://www.prweb.com/releases/iYogi/Internet_Security/prweb2960084.htm

Mom moves from the hallway into her room just before getting pain
medication as dad follows her into the room. We were expecting a visit from
the case manager nurse from Delaware Hospice this early, brilliant, summerlike
November day. 

Two important calls from dad's doctors today. The first, from Dr. Maged, concerned mom's INR blood test which came back as 1.9. He said to continue the dosages of Coumadin as previously determined ... switching each day from 2.5 mg. to 5.0 mg. The other call was from Dr. Grubbs who first discussed things with dad and then called back to advise me of the plan regarding the corticosteroid administration. It is not indefinite due to dad's diabetes ... we need to watch his blood sugar and make adjustments accordingly with his insulin amount ... but we will try it for 5 days and see how the swelling from the SVC syndrome is affected. He is to take the drug, which I forget the name to all the time, prednisone (thank you, once again, Google), once a day with some food. He can take it this afternoon, which is quickly dissipating, with a little food and again in the morning with his Cream of Wheat. In the meantime, I HAVE FINALLY LAID OUT ALL OF MOM'S MEDICATIONS FOR THE WEEK and dad won't have to assemble her nighttime meds anymore and that has tragic intonations. He will continue getting his own meds for bedtime. Here is a picture of all the meds that she takes during the day. It is considerable.

Wednesday is empty as this picture was taken on Hump Day but the meds include Vicodin, metoprolol, xanax, lasix, Vitamin C, Vitamin D, One A Day Vitamin (every other day), Coumadin, and Fergon (iron supplement). Administration takes place four times a day -- morning (6 a.m.), noon (pain), mid-afternoon (Coumadin/metoprolol), evening (pain, anxiety, sleeping pills). 

Just finished a note to Susan that I enclosed with the book I'd borrowed many months ago by Rev. Dr. Dietrich Bonhoeffer, The Cost of Discipleship. I also enclosed a picture of Dancer in the stream near the park and mansion of Rockwood, not far from the home of
Bob and Alice and Mt. Pleasant High School.

Dad ate well tonight. He finished his Holland rusk with liverwurst and some milk. As a result, he took his first dose of the corticosteroid, prednisone, two tablets of 10 mg. each for a total of 20 mgs. Well, it's been a fascinatingly diverse day starting with the power outage and ending, soon, with a walk. The day has been absolutely gorgeous and so warm, closer to 70 than 60 degrees. May it be so. We may have rain tomorrow but the weekend is suppose to be clear and beautiful.