Tears for David

Here's how I am doing.  I'm getting through each day concentrating on my classes and trying to attack the list of stuff to do accomplishing at least one thing each day.  I still have not located his credit card case with his credit cards.  It is here somewhere in all the piles and boxes of stuff.  I thoroughly searched all of his coats without finding them.  Then I donated the coats.  I open his closet but cannot bear to hold his clothing, so that avenue of searching is not yet available.  He saved the mask from his radiation that is on top of his closet shelf.  It is his dear face and I burst into tears just thinking of it, much less seeing it.

And yes,  I am drinking a lot of water to stay hydrated.  Friends and family visit and call.  There is really nothing new.  I am eating, sleeping and constantly hearing sounds that make me think for a second or two that David is coming home, coming into the room yet I know that he will never come home again.  It sounds lame but we were always really happy to see each other when one of us came home to the other one.

I have a huge list of home repairs that were waiting for spring and am looking for someone new.  Our former handyman is less and less available.  So if you are in Fredericksburg what you can do is give me the name of your favorite handyman.  David kept the toilets going, the garage door adjusted, the carpets spot cleaned and had fresh coffee for me every morning.  So, yes making coffee causes me to sob and cry.  I am determined not to buy new stuff until several months pass so that it is not a knee jerk reaction.  It is entirely possible that making coffee will be a cherished task reminding me of how thoughtful David was to make coffee for me when he was unable to drink it himself.

What doesn't kill me makes me stronger, over and over again I have experienced this.  I'm looking forward to his Memorial Mass on May 10 and then celebrating Nathaniel's birthday.   Loosing David will not kill me so I assume that eventually I will be stronger.

Mourning

Surrounded by people who love me and feeling alone because David is not one of them.  Everywhere I look I see and feel his absence.  I kind of wish his body was still here but even when I held his body he wasn't there anymore.  I put on his Ohio State ring because long ago he wore it.  I hug his clean laundry to my breast wishing it was filled with him.  I sleep close to the edge of the bed to give him room and don't pull covers away from his side of the bed.  I thought I would migrate there but didn't.  So many people writing on my wall about how wonderful he was and I weep that so many of us will miss him...and appreciate that others recognized how special he was.  Oh my David I wasn't ready for you to leave me.  I had a plan to help you get well again and walk with me in the park.  We did walk in the early spring and I wanted to walk in the actual spring, to wake up at 5 in the summer to walk before it got hot with bad air.  Walking was our bookends.  We began our friendship jogging through the trails in Reston before getting ready to go to work.  You would knock on my door and I would jump into my cut off jeans, a tee shirt and my yellow and blue Nike running shoes and off we'd  go.  I kept going because you were an old man and you kept going because I was an out of shape "girl".   We made it to 5 and 6 miles before breakfast.  We'd sit in that little kitchen on Tanners Cluster Court, drink coffee and talk before you left to practice law and I got my boys ready for school.  We continued with that as friendship deepened and we fell in love.  We did Jazzercise after work and on Saturday mornings.  You started swimming with the Master Swim team.  When I hurt my back most of my participation stopped but you continued and somewhere started a daily walk with Fred and his dogs on the W&OD and Sunday drives out to the mountains for serious hikes.  Last summer we started walking together again on Lee Drive in the Battlefield.  You pushed on and on.  Our goal was 30 minutes and we got up to 1.5 miles in that time.  We never did explore the trail to the old slave quarters. People called out that you were their inspiration as you plowed ahead with your walking stick, big hat and oxygen/pulse meter.  You kept a count of your steps on your iPhone and shoved the phone in the face of a doctor who was treating you like a fragile old man. You did over 10,000 steps for several days before you were hospitalized with low platelets and bleeding.  Oh my David I thought we would have a long walking history at the end of our time not this abrupt bookend.  What am I going to do without you as my sounding board, my support, my dear love.  I may never eat those Godiva milk chocolate bars you kept bringing me this last month.  I found one in my purse Monday and remembered your saying "I found these and couldn't resist getting them for you because you love them."  You gave my life meaning, purpose, structure and so much love, so much love.  I continued to be surprised at the depth of this feeling and how it encompassed ,,,,,,,, just everything.  My love for you will never go away.

Memorial for David

The Memorial Service for David will be held on Friday, March 31, 2017  at 11:00 a.m. at Beth Sholom Temple, 805 Lyons Boulevard, Fredericksburg VA. 22406.  540-373-4834.   There will be a gathering following the service at the social hall.  Friend are also welcome at our home through Sunday.  I miss him more than I can relate.  He was at home.  We spent time together this morning and he was fresh and clean when he went back to bed at about 6:30 a.m. Where he wanted to rest while he got his pump feeding.  I went to wake him before the home health nurse was due at 9:00 and he was gone.  I am devastated.  He is still so much a part of me.  I had a plan for him to recover but it was not to be.  Please pray for his soul and for me.  I cannot stop crying.

David died this morning at home.

David died this morning at home in his bed.  He looked peaceful with a tiny smile when I found him. I will post memorial details once we decide what to do.  I miss him  so much.

Weekend update

Sunday evening.  This is going to be stream of consciousness with lousy spelling and grammar due to my being tired and possible interrupted by needing to see what's happening with David who is in bed.
David is unable to talk due to the horrible congestion in his throat.  It is bloody.  I hope that tomorrow's Nplate injection starts to help with platelet formation/reduction in leaky tissues.  He continues to cough up big chunks of bloody stuff.  He had an X-ray and blood work on Friday.  I am hoping for results tomorrow.  His home health nurse comes at 9:30 a.m.  We have many questions for her.  Today he went to bed twice for naps and fell asleep when his friend Fred visited him.  His energy level is extremely low.  A series of leg raises in bed left him too tired to get up and continue with chair leg raises.  His weight is down to 129.2 today because he disconnects himself to go to the bathroom and sometimes forgets to turn the pump off.  There are stains on the carpeting that I can't get out so far.  I've stepped up the rate of the pump to 140mL/hour and he has no backups into his stomach and out the stoma.  I may try to go to 150mL/hour tomorrow to reduce the time that he has to spend hooked up to a pump.  He finally got six full cans of Jevity today and I hope that the weight loss stopped.
He is definitely not depressed and I think that most of the effects of the prednisone are gone.  He is not angry anymore.  I am sad that his body is falling apart.  He is having a big problem hearing.  Tuesday he sees the ENT Doctor and I'm hoping that he cleans David's hears.
Natalie and Fred visited David today.  Fred is unable to talk due to after effects of his stroke and David could not talk due to his congestion.  Still they held each other and hugged; they really formed a tight friendship since Fred moved here.  Natalie and I share a lot too.  Too bad we aren't able to have a usual couples friendship and have sick husbands in common rather than common interests.  Than spend time sitting beside David and hugging him.  I did too.  He has so much phlegm that I am unable to understand what he is trying to say.  He wants to see if we can get a suction device to clear his throat like they had in the hospital. Mucinex is just not working and he keeps bringing up huge chunks of junk.  That's on the agenda for the nurse's visit tomorrow.  I haven't heard from the physical therapist yet and hoped that she could come tomorrow too.
It is now 9:00 p.m. He is in bed for the night.  When I kissed him goodnight he hugged me hard.  I love him so much and wish that I could find a way to help him get better so that we could have another 15 or so years together.  I am so worried that we won't even have another anniversary.  This has been a terrible year for him.  I don't want him to suffer.  He says he is not in any pain and when the nurse or Physical therapist comes he rises to the occasion, tried hard to talk and to demonstrate that he is strong and committed to trying to get well.  When they go, he dozes off.  He has not checked email, read Facebook or played with the new MacBook Air once he verified that he is able to print from it.  He was happy that I got him audible books that he is able to hear using it but after listening for an hour turned it off and is not interested in trying it again.  He barely watched the NC/Kentucdy game that was extremely exciting and went to bed rather than watch 60 Minutes.

TGIF

Thanks for Friday.  I am having a delicious balanced dinner of a martini with olives (my vegetable) and peanut butter (my protein) pretzels (my carbohydrate).  God will understand.
David had a big day and I drove him and interpreting for him all day long.  He saw Dr. Clemo at 9:30, had a blood test later (we waited an hour to be seen), had both a home health nurse and PT visit for evaluation.  He is also scheduled for home speech therapy.  He loved seeing the nurse and physical therapist again.  They made a big deal over him remembering his progress last summer and are very optimistic.  He also had to have a chest X-ray...another hour delay...because of his awful cough and the really yucky junk he coughs up.
Right now David has the feeding pump administering food to his jejunum at 120 mL/hour for a total of 1422 mL each day.  He'll spend a lot of time on the pump.  I hold it when he goes to the bathroom etc.  Tonight his breathing was so labored and his O2 level vacilitated between 86 and 92.  He asked for oxygen and so he is now on O2 again and seems to be breathing much better.  He's agreed to try Nplate to raise his platelet count and will have his first injection Monday afternoon.  He will also see the home health nurse and physical therapist on Monday.  Luckily I will be here too as my students have an online exam and no face to face class.  Katya has been really generous with her time to be available for us and Than sat with David while I did my exam tonight.

I am thankful that he is getting food and not expelling it out of his stomach onto towels and his clothes.  This should give him fuel for energy.  I am thankful that we still have the oxygen concentrator here and he can breathe easier.  I am thankful for Dr. Clemo and her nurse Tracy who are caring, competent medical practitioners who listen to what is happening and make it better for David.  I asked Dr. Clemo to find me a teaching hospital that is full service for active elderly individuals on feeding tubes.  She is going to try but offered little hope.  There is no Facebook group or support groups that I can find to explore options for him (and me).  I think that I have a book here about Caregivers for the Elderly who get written off due to their age and possible short term gains for massive issues.  I also want to report the practice of Dr. Lee for their lack of preparation to help atypical patients.

I am well lubricated from my martinis and David is intently watching Real Time with Bill Maher so he is ENGAGED.  Joe lived to at least 102......16 more years to shoot for.  I'm in.  I think he is too.

We don't do that here.

Apparently this is an acceptable medical response in Fredericksburg - We don't do that here.  We don't inventory a GJ tube.  We don't tell physicians who order this for their patients that we do not have it in our inventory.  We don't call patients whose procedures require such GJ tube that they will be unable to have it installed.  We don't show patients/family how to use the jerry-rigged set-up of a GJ tube that was done on the fly.  We don't follow up home health care services to see if they accept the patient's insurance.  We don't notify doctors that we don't take their patient's insurance.  We don't notify the patient that home health care will not be forthcoming.  We don't find another home health provider that takes the patient's insurance.  We don't have many patients on Medicare. (A quick look around Gastrointerologist Associates of Fredericksburg refutes that statement.)

UNTIL I point out the lack of communication is counterproductive nothing got done.  It was another excruciating day of battling with Interventional Radiology at MW hospital.  The intake nurse informed us that they had no GJ tubes in the hospital and asked if we brought it with us!!!  Later we were dealing with people who thought that they were helping when they were not because they did not have enough information and were making assumptions that were not valid.  Yes, Dr. Vaughn is treating David.  Yes, Dr. Vaughn is a hematologist/oncologist.  No David does not have cancer - but the IR folks plugged him into the cancer dietitian who was halfway through her "thing" before she realized that doesn't do this.  When she got nowhere with the GI practice and the home healthcare company that the GI practice assured her were on board, I took David from the outpatient part of the hospital with his jerry-rigged Jtube threaded through his Gtube with colorful ports for each and a kind of twist tie holding it all together, to the GI practice and started my litany of complaints.  This is because he cannot be fed through the J tube without a pump, bags and possibly a different nutrition formula that would be supplied by the phantom home health company.  After about 15 minutes the perky nurse manager for the practice told me "oh  We faxed everything to the company we usually use but they don't' take his kind of Medicare (I was unaware that there were different kinds of Medicare.). There is another company and they will contact you within 24 hours."  OK so this is wrong on so many fronts.  No apology.  No offer to expedite the matter.  And she was smiling.  I asked to speak to her supervisor who did apologize and asked perky nurse manager to give us a timeline.  I complained that their procedure was flawed and that communication was terrible.  Before making an appointment for a patient to receive a device they should verify that said device was going to be available.  Before placing a device into an elderly patient who is loosing weight, they should verify that follow up care was in place.  I asked to speak to the Dr. Lee, the gastroenterologist who ordered the GJ tube.  This is his practice and he should know about the problem.  Basically he said NOT MY FAULT.  I don't tell IR what to order or what to do.  Eventually I asked him how many of these he does every year and he said that each doctor in their practice orders 3 - 4 a year.  So not many at all.  He was defensive, unapologetic and said that I can still use the G port to feed and medicate David.  Meanwhile perky nurse manager said she completed all the paper work for home health care for Dr. Lee to sign and then she would fax it to the company and they would respond in 24 to 48 hours.  So nothing changed, nothing was expedited.  Their assembly line medicine continued to crank through the waiting room.  We spent 7 hours with what should have been a 15 minute procedure in IR and an hour visit with a home healthcare nurse who delivered equipment and demonstrated its use.  Katya had to come to the hospital to rescue Jeff and take him to his train so that he could get to the airport for his 6:55 flight home.  Real quality time visiting in hospitals.....not.

At home I used the syringe to give David meds and breakfast about 4.  The syringe tip barely fit into the port and there was a lot of resistance because the G port is attached by a 45 degree angle so the flow is somewhat hampered.  I want to scream but instead had a slice of left-over pizza and two Reese mini peanut butter eggs.  I have mountains of assignments and exams to grade.  David is sleeping while sitting up on the couch so that he doesn't aspirate his breakfast or cause it to leak.

On the bright side the weather has improved