I feel positive about having the biopsy done because the lesion seems to be small enough that even if it is malignant it will not be life threatening..
Preparing for Christmas has been a serious concern
At this point i am certainly leaning to the Atlanta option but I cannot make plans until I get these results..

Scheduled for a "Pet Scan" tomorrow with contrast to determine whether the mass is cancerous. Needless to say I am terrified but trying to remain objective.
I may have to undergo another Bronchostony on Friday but that will be determined by the results.
Yes, this time it really is all about me....
I finally took a shower and changed my clothes...must go to store for cat food and litter..and WINE.....
Then I am watching Homeland on demand and going to be early...have to be in Rehoboth by 7 AM..

OK, the chest exray showed that the mass was still there so i had a Bronschotomy done on Wednesday, the day before Thanksgiving.
Fortunately for me , Gabe and Trin were in the vacinity attending a Memorial service for Ben and Barbara who died in a tragedy last week but that is another terrible story in our lives
I am so grateful that Gabe was here to drive me to the procedure.
It was performed under sedation a tube up my nose and into my chest. He was able to get some cell samples but not a biopsy because I had a nose bleed and i was choking.
SCARY stuff
Gabe made a seafood quiche for dinner, I spent time with Gustav and Greta on T day and they were able to visit my Bro and SIL as well as John and Molly..
So it is Saturday night..I must be insane because I just roasted an oven stuffer that has been on my freezer for months, hoping to peak Jim's appetite...
My way, I guess of making dinner for the family..maybe taking care of myself or just playing those old tapes..
Thanksgiving has some bitter sweet memories for me..There was the year that Zak and Gabe were forced to have dinner with Von"s family with Pork, mashed potatoes and corn, in the "club room" of his sisters home ..I was so ashamed about that because they were so disapponted
Then there was the Thanksgiving after Lou died, and Mom Mom was in the hospital. Gabe was with Amy then and we had her Father there for dinner..and Betty and Sue and David and kids..very sad...

Wednesday

I think I will get the chest x-ray done today so I will be sure that the Doc gets it by Friday.
I really haven't been out much since last week, but I need to pick up some prescriptions and back up cat food in case he wants to admit me again.
I feel better, more energetic and the coughing is becomming less frequent and more productive so I am taking that as a positive. Also spent a lot of time yesterday looking up infectious diseases like Legionnaires and Mercer and I know I am on the right course with the antibiotics if that proves to be the case
I've been such a couch potato but I don't want to exert myself even though I have a million things I should be doing.
I'm also debating whether or not to go to the luncheon tomorrow but I feel like I really need to get out of the house and see the "Girls".
One can only watch so much Dexter at one time...

The waiting Game

Got through the weekend by hanging out with the kitties and watching Dexter almost non stop. The pulmonologist reviewed the cat scan and didn't think the mass represented cancer, although that has not been ruled out.
He wanted to admit me to the hospital for IV antibiotics but I declined. This is one of the hardest things about being alone. I have to make arrangements for the cats etc. in advance. Instead he agreed to start me on oral antibiotics and I had blood and urine samples taken as an out patient at the hospital. I think he is looking for infectious diseases like Mercer and Legionnaires....God only knows what I have been exposed to this past year in my frequent hospital visits.
I see him again on Friday. Some time this week I need to have another chest x-ray. I also submitted a morning sputum sample to the lab on Saturday and was grateful to find a Beebe Express Lab closer to home that was open.
He expressed emphatically that if I started feeling worse to go to the ER but I am not in any pain or discomfort, just crackly when I breathe. The sputum is generally clear, not thick or discolored. I have no fever, chills or other ailments.
It has occurred to me that the first weekend in May, Jim and I went to our reunion in Baltimore and stayed at the hotel where the dinner was. The Monday after we returned, I became feverish and had a terrible cough and went to see my primary. She prescribed a narcotic cough syrup but was hesitant to give me antibiotics because of my exposure to the C dif that Jim was struggling with. Later in the week when it hadn't improved she did allow me to take a mild antibiotic....it could be that I had something that never fully went away...just sayin'
Sooo...I am trying very hard to stay in the moment and not project into the future. Limboland...

Well, the Cat scan did indeed show a mass in my right lung....seeing a pulmonologist on Friday and make plans for Bronchialostomy ( biopsy)
Very scary but am trying to take it in stride.
XXX L

Sunday November 10 Happy Birthday Marine Corps..

So the lasr few weeks I have really had no energy, feeling lethargic and not like going out a whole lot. All my exercise plans had been discarded and honestly, some days i didn't even feel like getting out of bed.
I had a dental appt on Tuesday, and when the hygienist commented on my wheezing I blamed it on my asthma, which has been terrible this year. But in the spirit of the comment, and trying not to be my Mother, I broke down and made an appt. to see my primary on Friday.
She too heard the popping in my chest, said my throat was red, found fluid behind none ear, and surmised that i probably have walking pneumonia which was confirmed by a chest xray on the spot.
Definitely pneumonia, so she prescribed a new inhaler, z pack of antibiotics and a CT scan on Monday which is scaring the crap out of me. She was concerned about a spot which was rather dense, could be infiltrates from the pneumonia(sp) or could be a mass.
Afer looking up the definition of Walking pneumonia, I realize that lack of energy is a key symptom so I feel justified in my laziness.
Since I have been on the antibiotic though, I slept through last night whith out wheezing or coughing so I hope that is all it is...

I have been journaling lately with a Pen so I haven't been blogging much. Unfortunately my desktop computer has been a PITA so mostly I use my notebook for FB and email.
It's amazing how terrible my handwriting has gotten from not using it much anymore aside from addresing envelopes and signing checks.
At any rate, I don't know how to describe my feeling after 5 months withour Jim. It is very lonely. I am still overwhelmed by thoughts of downsizing and moving which is inevitable but not urgent. The big yard sale will have to wait for the spring, and currently my main concern is keeping warm since the temps have dropped suddenly and dontcha know my heat is not kicking on. I have been waiting for service since Wednesday but I am grateful that I have baseboard electric which works in some rooms, a space heater for the LR and heavy blankets for the BR. I personally love cold sheets, but it is too chilly for one leg out :-).
Overall I am in good spirits and have been stepping out with my Bereavement friends at the luncheons and drop in meetings. I still cry every day over the dumbest reminders of Jim, and sometimes actually break down and wail, for no apparent reason...just a release I guess.
I had my 2011, 12 taxes done yesterday and will be mailing them as soon as I get a mortgage statement from BOA. Mary Ann would not accept payment for processing them since in 2013 we will be starting fresh with none of Jim's BS. I was very grateful for that, we both cried, and since I sent some payment in for both years, I think, I don't owe anything.
I still feel lazy. like I am not doing enough, but I think I am still exhausted from the stress of the last 4 years of caregiving, chauffering, cooking, nursing, cleaning etc. I have been taking marathon breaks catching up on Homeland, Dexter and other shows I have missed. I cook almost every day for myself, as that is my therapy and now
My elderly lady friends want me to cook for them, they are in Lewes and not close by, so I am not sure how that would work.
I was invited to stay later after the lunch this week and have coffee with the Hospice Volunteers and that was an honor. They didn't realy know mw so I shared my story and of course received hugs and we all shared tears. I think I may have stumbled onto the "Cougar" faction of the group but they are fun and closer to my age.
I have signed up for a few lectures /luncheons that are held in Milford by a Psychologist everyone calls Dr. Judy. One of them is "Surviving the Holidays" which I know will be tough this year. Another one i am looking forward to is Healing your inner child. Boy, do I ever need that!!! I am on a road to discovering myself...
In my effort to heal I am going back through that old crap I carry around and doing some house cleaning.
Anger is an issue I now have because I don't think I was ever allowed to express it as a child. Now it comes spouting out of me like lava and I am trying to let it go. Everyone who has hurt me has their own issues, which probably have nothing to do with me.
I did a great job caring for Jim even if it was more than hard sometimes. I did it out of love and compassion and I am glad that things between us got a lot softer towards the end. I know he loved me and trusted me more than anyone in his life. Posted by Leslie Wardell at 4:42 PM No comments: Location

Sunday morning
Woke up slowly after a restless night's sleep. The mornings are rough for me as I still have that fear of coming downstairs to face whatever occurred during the night, then remembering that Jim is gone.
This morning I missed the Sunday morning ritual of his making the coffee and maybe going out to buy the Sunpaper.
These were some of our finest days. We would watch the morning talk shows, have a big breakfast and he would honker down for a day of sports events on TV. and I would piddle around in the kitchen planning dinner and later working on the crossword puzzle while watching Lifetime TV or a movie.
These are the moments when I loved our life together the most. The quiet times with no stress or distress.
I had many dreams last night and in one, we had gone out for dinner and the waitres couldn't find our check. I waited for her to produce it while he went out to the car to wait. There was still some problem and I told her I needed to pay it immediately because my husband wasn't feeling well, well actully I said he was dead......very strange...and the meal was unreasonably expensive.

Back from my trip to Atlanta and feeling very tired today, but energized.I am going to skip the luncheon today because I don't feel like driving to Milton. I think I am going to chill and unpack.
The flight from Charlotte was late taking off so by the time I get home it was almost 11PM. The fur babies were excited to see me and I think I saw Beau smile.
Haven't seen Bitsy though, but she had pooped in the litter box so I know shw's been around.
It is a beautiful day here, temps in the 70's which is a great improvement over the weather in Hotlanta..I could not keep makeup on my face at all due to the humidity and heat.
It was wonderful to spend time with the kids..

Sunday Morning,
I woke up this morning feeling somewhat lighter in spirit....Beau was meowing, saying good morning and forcing his head under my arm so I could rub him, Lulu was waiting in the door way, Mouse was on the stairs and the sun was shining.
I checked in the laundry room, and Bitsy was sitting on her pillow looking at me through the glass window.
I hesitate to say I feel good, but I feel like I have turned another corner.I don't feel as anxious as I have been.
I am feeling hopeful for the moment and starting to get excited about my visit...wow, The Atlanta Speedway WooHoo..

Suddenly I realized that I need to get organized for my trip to Atlanta. At least it gives me something different to do.
I am anxious but I am feeling that fear daily. I notice it mostly in the morning when I first open my eyes and remember what has transpired. Of course, when Jim was sick I felt the same way only with a sense of dread and fear of what I would find when I came downstairs. Some days he was up and about ready to go to dialysis. Other days he was still asleep with the alarm blaring. I just never knew what to expect.
I am also remembering the really bad times in our relationship, before he became so ill and dependent.
Jim was no angel, especially when he was drinking heavily, and I didn't think I could ever forgive him for making life changing decisions in regards to his family without discussion, like my opinion was irrelavant and I didn't exist...Bringing both of his parents to our new home to die was not in my game plan but Jim could not see outside the box. I am grateful that Lou passed away before he was discharged but all of the equipment was in place here, the hospital bed and oxygen, etc. He had Prudence and Jody come into our house and move the furniture while I was in Baltimore attending to My Mother's needs..I was furious...
We had some horrible arguments and said hurtful things to one another. Several times it became physical, not beating but pushing and throwing things. I was very unhappy, disappointed in my partner, as he was with me for not being Melanie from "Gone with the Wind", but I was hurt and sad and I felt his loyalties were misplaced..
Looking back, I don't think I realized how depressed I was. I was so down I couldn't even look for a job. My self image deteriorated and I just gave up.
When Jim was diagnosed with Renal Failure we faced it together and once we accepted it life returned to normal.
Then the other ailments started ie the Fall, the bleed, the seizures the rehab, and the burn.
The past 3 years have been an endless circle of Hospitals, surgeries, rehab, Hospitals, surgeries, rehab. It was exhausting, but I started feeling the love again.
Jim was always happy to see me, would lean over in the car and kiss me and thank me for driving him. When I brought the tailgate party on Superbowl Sunday to him in Deershead he had all the nurses come in and partake.
On Valentine's Day I brought him Chinese food from his favorite restaurant and he enjoyed it.
I truly believe that the two of us grew closer in the end because it was just the two of us...no one else participated in his care outside of phone calls and drive by visits.
So Jim, now that you have left I am starting to heal and forgiving both of us for our past anger and resentments.
I miss you every day but I had been missing you for a long time. I am grateful for the good memories we shared, the laughter and the joy. Thank you for the time we had together!

Here it is Tuesday again...my last workshop meeting. I will miss seeing the group on a weekly basis but hopefully will see them at the luncheons and other events,
Diane came down for the weekend and it was nice to have company.
We did some shopping in Salisbury on Saturday, had lunch at the Franford Diner, TOOK A NAP, and watched TV.
Very exciting as I showed her Cypress Swamp and rge Mason Dixon line marker in Selbyville.
The weather was very crappy on Sunday, so we watched movies all day. She had never seen "Enchanted April" or "Big Night" so that was enjoyable. I cooked dinner and we ate in.
She got some mulching done out front and replaced the smoke detectors for me.
She left around noon on Monday and I took another nap...then I slept in until 10 this morning.
I was feeling very tired. stress I think. I may get the car inspected before my Group at 2....

I am still struggling with depression this week and can't understand why I feel like I am running in circles. I have been very busy, attended my workshop. saw Dr G , went to a luncheon, opened a safe deposit account, got a mammogram abd blood work done. I guess that explains why I am tired but not the sadness. I am reassuring myself that it is normal, that it is a slip and that it too will pass. Diane is coming down tonight so I will have some company over the weekend. Hopefully she can help me finish mulching out front and maybe paint the patio set. I also need to get over to Salisbury before Monday to use my Kohls cash :-) The good car is due for inspection so i need to tend to that next week

Blah...

This has been the worst week I've had since Jim passed. I don't know why exactly but i feel like I have fallen in a hole and am clawing my way out. No matter how hard I try, I can't seem to get anything done. At the same time I feel like maybe I am doing too much. I cancelled my dinner party mostly because I couldn't get organized enough to pull it off. In addition there was a lot of drama going on with my guests and I didn't want that to dominate the evening. I shared that with my group and was applauded for taking care of myself. Robbie Russell is in the states working for Nasa this week and is returning to Germany on Saturday. He's been calling to camome over but I haven't been able to make a plan with him because I am so stuck... I am achy from gardening so I laid off that for a while, then I feel guilty.I really do need to spread the mulch and finish weeding... Maybe I'll get that started now...

I am feeling tired again today and decided to give myself the day off. No heavy lifting today, mulching, digging etc.
 I was thinking of going to another luncheon today, but I slept in past 9:30 and couldn't get it together in time to go.
 Delaware Hospice sponsors a luncheon every Thursday at various restaurants in Sussex Co, this week's being at a diner in Long Neck which is about 25 minutes from here. It is a less formal setting so I think I will try to make it next week.
 I feel that  am truly benefiting from the group and it is helping me to put other aspects of my life together.
 Grief is not just sadness, it is confusion. lack of concentration, sometimes guilt, anger and an entire range of other emotions.
 It explains a lot of feelings I have been having for years going back to the passing of Daddy, and later Lou and Mom only 6 weeks apart.
 I never was able to fully grieve those deaths because they were so close together..overwhelming...I just felt hopeless, useless, and stopped caring about myself.I was hurting but I didn't know how to deal with it..
 I couldn't even bring myself to help clean out my Mother's house because I would get caught up in just looking at her stuff and wondering why she chose to keep certain things. I would sit on the floor and cry. Jim did not offer to participate at all and that hurt me too.
 I think my self esteem plummeted when Jim didn't recognize my depression and inability to leave the house to look for work. I was frozen in fear of rejection and I could not bear another rejection/loss.
 I was not able to accept myself as a responsible desirable loving person. He pushed me away. He showed no affection.I sunk lower and lower.
 It became much worse when Betty became ill and moved in. Jim did not discuss it with me, it was a take it or leave it deal because "That's what the Sanders do", in the words of my biggest critic who literally did nothing to help.
 That is where the deep resentment started. Some days I hated Jim for not getting it. Our lives changed so dramatically. We stopped socializing, going out to dinner or even watching TV together. We tried therapy, but he did nothing to contribute to bring us closer. We had many angry and hateful exchanges during this time Betty did nothing to allow us some private space together. 24/7 She was in the middle of our lives no more that 10 ft. away at all times.
 I loved Betty for the sweet person she was but she was meddlesome. She dominated Jim's life over OUR life together and it became an ongoing issue.
 At one point I asked her to leave as she was not in critical condition, showing no ill effects of the treatment and was still driving, shopping and walking the dog daily. She did, but then she chose to have an unnecessary surgery which even the Oncologist discouraged as her quality of life was still good.
 She never regained her strength after that, and she truly need us then. I understood that, and I accepted her with love and compassion. I cared for her until the end, with the help of Delaware Hospice when she finally surrendered. The only time I saw the granddaughters was when her sisters were coming down to say goodbye. That's when they showed up...good photo op.
  Now I am beginning to understand why I was/am such a wreck..I was grieving all this time. Then with Jim's diagnosis and the 5 long years of up and down I am amazed I am standing at all....
 I am hoping to put Joy back in my life..

I attended the second Support group meeting today.
It has been very beneficial to be with a group going throught similar experiences.
There were some new people today, and some missing but it was still on spot because the Facilitator is excellent.
 So, I know it is OK to feel tired, greiving is exhausting. It's OK to be unfocused and unable to concentrate that is normal...as well as confusion..fear..inability to finish anything..anger, unexpected attacks of grief ..
 The only thing I don't feel is guilt or regret. I truly believe that Jim loved me as much as I loved him and in the end he recognized my devotion and his needs.
 I am also letting go of the other anger....their problem to resolve..

I really feel tired today. I have been doing housecleaning and hung some curtains the other day to brighten up the TV room. The floor is hard and getting up and down on a ladder isn't as easy as it once was so my legs are achy from that.
 I also got some errands done like getting extra keys made and buying larger pots for my re potting project happening in the living room, as well as stopping at the bank and taking care of paperwork for insurance and Tax purposes. Even though these are simple tasks, they exhaust me. I also saw Dr G yesterday and shared with her the great experience I had with the support group. I think we got through the entire session with no tears. Now that I have had some space, I am allowing myself to remember some of Jim's not so good traits and accept them as well. I know he was no saint and I want to remember him for the real person he was.
 I am learning a lot from them and the Facilitator and that all of my feelings are normal symptoms of grief..so I am trying to accept my fatigue and forgiving myself for not getting everything done that I plan in a day.
 Taking care of myself is something I've never been good at doing so this is an adventure of sorts...#1 finding out WHO I am, and how to fix me. I am certainly hoping yo make some new friends from this group.
 Hopefully today I will find the energy to haul lots of Jim's papers up to Millsboro for a shredding event at the credit union. I have boxes of old reports and such to dispose of.
 I had a disturbing dream last night, I was in some sort of a facility with other women and had a room with 2 or 3 roommates. That seemed acceptable to me  Then I was moved to a large room full of women and given space on the floor with them. It was like a homeless shelter. I dare say it scared me but them I remembered that I had not taken my Trazadone which I normally do at night. It keeps the bad dreams away and relieves the nighttime anxiety. :-)

Looking forward to the workshop on Loss which I am attending this afternoon.
I am feeling more like being around people lately. I hope it will be satisfying and helpful.
My lawn guy is here, and he has offered to trim all the trees out front for a reasonable price.
That will be a real improvement to the appearance of the house. Some of the branches are so low that he cuts himself riding under them.
 He appears to be quite handy so I may pay him to repair the shed and the soffit on the house.
 Things are coming together a bit...at least for today.

Tomorrow I am joining a 6 week support group on healing after the loss of a loved one.
I hope I can relate to the others attending. The Facilitator said I was a young widow so that was interesting.
The best part is that the group meets in Millsboro so I won't have to travel far.
I am also continuing to see Dr. G. She was so kind to attend Jim's memorial service and actually took some great pictures. I started seeing her again last week, mostly for a shoulder to cry on.
 I've been thinking a lot about Jim's and my relationship and how it had changed over the years.
 We started out as a dream, accomplices to fill the hole of loneliness which was in both of our lives. We loved each other so much that the flaws in both of us were not so obvious.
We laughed together, cried together,  traveled together, loved a lot, invested in a home together and never foresaw the future as turning out the way it unfolded.. It was not what I had imagined.
 First,  Lou becoming ill and being diagnosed as terminal was devastating, but what was more shocking to me was Jim's arranging for him to stay here, in our new home to die. I was in Baltimore assisting Jennie with her health issues while Jim had Jody and Prudence re arrange our living room so that hospice could set up a bed in there...What was he thinking?? A fully staffed hospital could barely handle Lou . He had to be restrained in bed, yet Jim thought he and Betty could manage this....and I was not even consulted...all I was told was that Lou was coming home...I thought HIS HOME which was/is less that 1 mile away.
But Jim liked to make things easy on himself without a thought to how it would affect me/us and our relationship. Thank God Lou passed away in the hospital on the day he was to be discharged..
 I have to confess that this episode was the beginning of deep anger on my part which grew to a resentment through the following years.. Jim drank heavily back then, and was at times verbally abusive and occasionally physically.
By the time Betty moved in with us (way too prematurely since she had recovered from her 1st surgery and was fully able to drive, walk the dog etc). I was really steaming. All the work was on me. I cooked, I cleaned  and entertained her while Jim went about his days spending time at the office and with customers.
I had no outlet for my feelings. The people I shared them with ie Jim, his daughters and Jody could not understand why I felt the way I did..."IT's Family", they said and I was a monster for complaining.
 I Rarely if ever saw any of them come to visit her until the month she died and Mikey brought her Sisters down to say Goodbye...Don't you know the girls showed up for the Photo Op...Go figure
Meanwhile  Jim withheld any affection towards me, holding hands,  touching , kissing.....I got nothing. I was becoming a shrew..I just let myself go ...what did it matter anyway...?
 When Betty became terminal Jim abandoned our bed to sleep on a cot in her room. After she passed, we never slept together again.
 Now for the last 5 years I have stayed by his side during his demise...it's been one thing after another..his hard hardheadedness, and lack of responsibility affected his life and his health. I watched him sit by and waste much of Betty's Estate from sheer laziness.
Our relationship became one more of dependence which I know he hated.and I at times I resented, but I was committed to him and tried my best to fill his needs. The Monday Morning Quarterbacks can think what they will but I did the best I could to live up to my post.
Recently I was reminded by none other than Prudence that "This is what we Sanders do, we take care of each other"...and I couldn't help wondering when and where did she ever take care of anyone but herself.
And Big Sister, who knows everything and cannot have a conversation with me without it turning into an interrogation, has clearly never liked me from day one so no love lost there.I overheard her on speakerphone one morning when Jim was up early . I lingered on the steps as she was relaying a litany of my sins to him regarding my care for him. That was really something to hear from a woman whose husband chose to die rather than live with her.
 Those 2 never made our life easier, and what they don't know is that Jim was on to them. He knew who Prudence was...her carelessness, drug and alcohol abuse, Joell, married into a family  which she chose over her own..Jim chose me to share his life and I did.
 The last few months had been smother sailing for us somehow. The wound was finally healing but then the C Dif became the major complaint, and NO Joell...it has nothing to do with cleanliness it is a bacterial infection.
Jim also became more affectionate...leaning over in the car and thanking me for helping him., and kissing me.
He also said he loved me on several occasions, and my heart is breaking now that he is gone and I know I will never see him again...Thank you Jim for sharing the last 20 years with me. I will always love you

 

July 4

Yesterday was the 4th of July and for some unexplained reason I found myself having a tough day.
Maybe it was just the fact that it was a holiday but I know that we haven't done anything special for several years due to Jim's ill health and general lack of interest. I started weeping, them sobbing at times, and I just couldn't shake it off.
 Part of it was due to the fact the Bitsy, Beau's mother and outside feral cat had disappeared for 2 days, but my heart lifted when I saw her walking across the patio, or should i say limping. She has had a broken foot and missing tail for several years now. which is why I worry about her. She has been spayed so I can't imagine why she takes off like that unless something scared her or, in my active imagination, she is still connected to her colony and they needed her for something, like being a midwife.
 At any rate, she gobbled up a bowl of food, the proceeded to nap under a bush for most of the afternoon.
 I also was reliving 4ths from the past, being a kid at the shore and having company, steamed crabs and fireworks on the water. Having the family over on Mom Mom's patio for a cookout and crab soup when the kids were little,  having a family party here on our patio and dragging lawn chairs across the road to watch fireworks from the Church of God's Huge display which has been discontinued as well.
 .I was flooded with emotions for much of the day, missing former friends, our parents and of course Jim.
 I felt compelled to do something. so I hung a bunting on the Tiki Bar outside and came inside to shower and cool off.
 The afternoon was better. I piddled around which is about all i am capable of these days...can't seem to concentrate on one task.I had planned ahead for a special dinner and treated myself to some crab legs, BUTTER. and corn on the cob..surprisingly satisfying,
 By nightfall I was tired and chose a TV show which due to some cable glitch I could not access...so I watched Avatar, which I had never seen, and thoroughly enjoyed that.
 End of story...

Memorial

Well, the memorial is over and life goes on.
Mine will never be the same again. I have lost my partner, my friend, my love.
I've said this many times in the past year or maybe even longer, but I have missed him for so long now I can't really remember when his spirit left ,  his spontaneity and silliness, and love of life...they just faded away with his body...
 It was a long process of enduring endless pain, false hopes of recovery , fighting too many infections for his body to heal...he became so fragile..he ran out of fight....
 I don't even remember if I kissed him before they took him away. I think I did. I know I ran outside and gave him his cell, but the ambulance was too high up for me to touch him. I told him I would be there right behind him but the next time I saw him he was on the breathing machine and unconscious.
 It was so cold in the ER at Christiana , not the temperature but the chill of the daughters by the time I arrived. I would have liked a few minutes alone with him, but no one offered to leave. I just don't think of thing like that. It would have been nice is someone had given me a seat, but that took a while as well.
 So three of us watched him go, it was painless and peaceful...and so very sad
 There was no touching, hugging or talking.. Just 3 witnesses , all crying...all alone..
 So now it is over....there is no changing anything or anyone..I still don't know why it was that way but it was..does it matter anymore, not really...it is just sad.
 So much to do to move on with my life..a house and garage full of stuff I don't need anymore...or even want..
 One day at a time...today  I am OK.

Well, it is official, I am a widow.
 I would much prefer to have my husband back when he was vital  but I really can't remember when that was..I don't know how else to say it but I am grateful that he is gone.....
 The ESRD started 5 years ago. That itself was a life changing event but we re adjusted and he still lived a viable life as a salesman and worked his meetings around his schedule.He couldn't understand why other patients complained so much..
 Everyone knows what followed that...the Fall 2 years ago , the long road back from the seizures and PT, ST and OT. At one time he could not sequence events , put things in order, that was his Forte, Math in his head estimating on the spot...BUT he was improving...
 That started coming back when the burn happened.. Once again His reluctance to see a Dr about it was an issue ...It is hard to drag a grown man  into a car for medical attention...
 By the time it was initially seen by his PCP, ( I thought it was Shingles) he referred us to the Beebe wound Care center..
.The story continues with many debridements, , a flap surgery, Pseudomonas infection antibiotics  causing C diff  becoming chronic with totally un affordable medication available .$1600 for 10 days of oral meds...
 My Husband's body wore out waiting for help...God Bless America and thank you  Jim, My Dear, for stroking out and not suffering anymore...I love you, I miss You ..but I have missed you for a long  long time.
 Love the good times with you...I think I always loved you because you made me laugh..everyday.

Post from the day before Jim died

Wednesday the 29th of May...The season officially started over the weekend and the traffic was heavy even thought the weather was chilly.
 All's quiet here this morning. Only 1 appointment at the wound center this afternoon at 2. The wound is 80% healed. Once all the slough is removed, they will work on a closure.
 The C diff is really the main issue now. I met with the Nurse Practitioner at dialysis yesterday and she administered some vancomycin in his IV. It may have helped as he ate a little dinner last night.
 I am also looking into assistance programs for medical help, especially for prescriptions. Over the weekend I spent $500 on pads, depends, and meds...even with insurance part d, We really can't afford that.
 I've made some progress with the patio plants and have been trying to get the front started. My 12 year old crew quit on me, so the pool is down, empty and sitting in a big clump on the sand. If i could get a few adults to help, I think we could flatten it and roll it up now that it is dry. Actually, if I had a power washer and some help I could really clean it up and pack it in the bag,  but that is just dreaming at this point..
 So, the dirt therapy is working except it is extremely tiring for me but better than standing still.
 I am going to a luncheon/lecture for caregivers in Milford on the 7th and am hoping to hook up with a support group
  I am juggling as fast as I can but I can feel the balls starting to slip.
It is so difficult to be responsible for everything...I know the car needs service but when can I get that done?
My taxes in Baltimore will be due in July, as well as the car insurance here. I need to pay my personal income tax from 2011, and 12.
 It has been hard to deal with these ailments with no one coordinator in charge. Dr. Gordon, the plastic surgeon has nothing to do with the C diff. Dr. Sharman, the primary referred us to an infectious disease specialist at Beebe who can't see us until July. The Nurse/P at dialysis can only treat Jim 3 X a week with the vancomycin IV which is the only thing that seems to work for him. The oral medication costs $1600 for a 10 day supply. I almost took him to the ER yesterday just so they would get that department involved sooner.
  The AFLAC insurance has been a Godsend, but come August it will be 1 year which is the limit. I am also looking for Medicaid assistance.
 So , how is your day so far....

Oh well, I knew it was too good to be true. Gina cannot take the pool because her Mother is afraid for the little kids who are always at her house. Oh well, at least I got it partially drained and ready to empty.and roll up.
 I also saw the 4 little kids with the "lawn service" and got them started weeding the front yard. They are coming back tomorrow with a rotor tiller to finish up. They are all very nice and polite, around 12 years old, but are way too disorganized. I tried to give them some direction, but they get so distracted by the smallest thing.
 I told them I would pay them $40 for both sides down to the dirt and weeds hauled away and swept up..
In my opinion that is a good deal. The leader is a real hustler but his brother is into riding on the tractor and little else. He may be on his way out of the deal....
 Also, the old grill is gone. Rolled it to the curb and 2 men picked it up around 6 last night.
 Now hoping that Jim gets interested in the new grill. I hope i didn't waste the money on it,...I wasn't cheap..

Step 1
 I think I have some one to take the pool. Gina, who lived with us can use it in her Mother's yard.
Today I am going to start draining it and getting all the parts together.
 She seemed really excited about it so I am happy to pass it on to someone who will enjoy it with her family.
One more crisis resolved. Now to find the number about the trailer.

Rain and thunderstorms perfect day for me. It is the Saturday after my reunion and I have been ill for most of the week.
 I seen to have acquired an upper respiratory infection which is also affecting my sinuses, throat and left eye..
 I just dropped Jim off at Dialysis so I have some time for myself. I have been sleeping a lot since I was given a cough syrup with codeine, but i cannot take it during the day time when I have to drive.
 I've had no appetite other than cold fruit and beverages with ice, As of yesterday I was still running a temp over 101o but my Doc was looking out for me by not prescribing an antibiotic, therefore protecting me from the Cdif which Jim is still struggling with.
 But before I go lie down for a while, I must day that I had a good time at the reunion.. Certainly missed some people who weren't there and surely missed some who were.
 I heard one classmate state that this was the best one yet, but the most difficult in recognizing face as they had changed so much.
 It was fun to reconnect first on the elementary school level with kids I went all through the system from the 3rd grade on, old friends I had re met when I was with Carl, and new FB friends. I have met through our class website..
 I also was grateful for a very frank conversation with a fellow classmate who gave me really good advice about my situation with Jim. It did nor fall on deaf ears.
 In looking around my house, I have lots of living things...Plants I have rescued from dying restaurants, one from 30 years ago, a few I've had for 20...I have 3 loving cats inside, and a feral whom I recently started let sleep in the Laundry room.
 I am trying to focus on that and not the stench of illness in the other rooms...the Cdif. the wound dressing.
I will try to do this...

My body is absolutely aching from the ambulance ride to Baltimore. Sitting up front in a straight seat with no controls with arthritis is bad enough but Jim's bouncing about on the stretcher in the back , on his back, must really be uncomfortable.
  I try to be positive and helpful but he misinterprets my moves.. He doesn't realize at times where he is and we got into an argument today about who is wearing the gear for infection..

I just returned from my trip to Baltimore for Jim's last surgery.
I stayed once again at the Best Western  mostly for the free parking, hospital discount and the shuttle service  back and forth to Hopkins.. They also offer a huge buffet breakfast , included,  and a reasonably priced lunch and dinner menu.The food is not bad and the kitchen also caters Toby's Dinner Theater which is on the premises.
 I don't know what it is about me, but it seems when I travel alone I tend to attract other people who are also alone and generally in the same situation.
 The first night I was there was my Birthday so I went to the dining room the have a few cocktails and dinner. I has just started on my first martini, when the older lady walked over to my table and asked if she could join me.
 I agreed, so we introduced ourselves and and began a conversation. She was from Michigan, outside Ann Arbor and was retired from U of Michigan for many years. She was in Baltimore to have a check up at the Wilmer Eye Center at Hopkins, which is #2 in the world, according to her, with Miami being # 1.
 She was born with one blind eye,which was not noticeable at all, and now has some sort of growth threatening her good eye. She hadn't been satisfied with the treatment at U of M so she had been coming to Wilmer for several years..
 She explained that last year she had stayed at the Days Inn at the Harbor but they had no dining in house and it had rained the entire time she was in town and it was difficult to find a place nearby to eat..
  Unfortunately, with our "IFFY " forecast for snow this time,  her  flight had already been cancelled for the next day already so she was happy to be in a hotel with amenities that she could use such as the free shuttle and the restaurant.
 I enjoyed our dinner together and even though she wasn't a drinker at all,  she didn't mind that I was.She finished and paid her bill and we said goodnight .
 The next day I went about my business at the hospital, taking the 6AM shuttle and staying with Jim in Pre op. When the surgery was completed, he was taken to a room on the 4th floor when I joined him.
 We decided to order lunch for him, and I ordered a guest tray as well. I like the system there. Each patient is given a menu and you call your own order in for each meal. It takes about 60 minutes to deliver it but it hand carried individually on a tray. Suddenly the staff decided that he needed to go to dialysis so by the time his food came he had been transported away. We agreed that I would leave for the day as he would not return to his room until after 7 PM.
 I thought about venturing out for dinner but I was extremely tired so I once again decided to dine at the hotel. Once again I was sipping a cocktail when Ann showed up again. She apologized for wearing the same clothes but she hadn't packed much for an overnight trip. So our conversation continued and we shared  stories about our traveling experiences, failed marriages, unfulfilled relationships, mentally ill children , recipes for making candy, etc etc. so many confidences that are easy to share with a stranger.....
 She turned up again the next day  in the lobby as I was waiting for the shuttle. The earliest flight she could book wasn't until Friday..  I was beginning to feel like I was being stalked, but I had  checked out of my room , loaded the car and wanted to spend a few more hours with Jim.
 She said she had bought a ticket for the dinner theater which was playing THE WIZ. I was sorry that I was leaving because i think i may have enjoyed the show but we once again said our goodbyes
 .

Spring?

OK, I have crocus blooming, daffodils pushing up and signs of spring everywhere But Where is the Sun?
It has been so dismally gray here, cold, then warm, snow then rain...but no Sun. It is really depressing.
 Maybe it is the let down after the Ravens Victory, packing away the purple gear for next year, I don't know.
 It's not that I am not hopeful.... I am just sooo tired of winter....the hospitals...the never ending insurance forms and bills....the daily responsibility for everything... taking trash out.... buying cat food.....cleaning litter boxes....remembering to buy gas...driving to Salisbury 3 X weekly..... paying bills and laundry etc. etc. etc.
 On top of all of that crap, the refrigerator is being replaced today, an unplanned expense, Mediacom still hasn't gotten my digital signal right yet since i moved the box.., my notebook computer ...won't boot up and I am frustrated by the staleness of my life......

Revelations, I guess

I have been journaling lately with a Pen so I haven't been blogging much. Unfortunately my desktop computer has been a PITA so mostly I use my notebook for FB and email.
It's amazing how terrible my handwriting has gotten from not using it much anymore aside from addresing envelopes and signing checks.
At any rate, I don't know how to describe my feeling after 5 months withour Jim. It is very lonely. I am still overwhelmed by thoughts of downsizing and moving which is inevitable but not urgent. The big yard sale will have to wait for the spring, and currently my main concern is keeping warm since the temps have dropped suddenly and dontcha know my heat is not kicking on. I have been waiting for service since Wednesday but I am grateful that I have baseboard electric which works in some rooms, a space heater for the LR and heavy blankets for the BR. I personally love cold sheets, but it is too chilly for one leg out :-).
Overall I am in good spirits and have been stepping out with my Bereavement friends at the luncheons and drop in meetings. I still cry every day over the dumbest reminders of Jim, and sometimes actually break down and wail, for no apparent reason...just a release I guess.
I had my 2011, 12 taxes done yesterday and will be mailing them as soon as I get a mortgage statement from BOA. Mary Ann would not accept payment for processing them since in 2013 we will be starting fresh with none of Jim's BS. I was very grateful for that, we both cried, and since I sent some payment in for both years, I think, I don't owe anything.
I still feel lazy. like I am not doing enough, but I think I am still exhausted from the stress of the last 4 years of caregiving, chauffering, cooking, nursing, cleaning etc. I have been taking marathon breaks catching up on Homeland, Dexter and other shows I have missed. I cook almost every day for myself, as that is my therapy and now
My elderly lady friends want me to cook for them, they are in Lewes and not close by, so I am not sure how that would work.
I was invited to stay later after the lunch this week and have coffee with the Hospice Volunteers and that was an honor. They didn't realy know mw so I shared my story and of course received hugs and we all shared tears. I think I may have stumbled onto the "Cougar" faction of the group but they are fun and closer to my age.
I have signed up for a few lectures /luncheons that are held in Milford by a Psychologist everyone calls Dr. Judy. One of them is "Surviving the Holidays" which I know will be tough this year. Another one i am looking forward to is Healing your inner child. Boy, do I ever need that!!! I am on a road to discovering myself...
In my effort to heal I am going back through that old crap I carry around and doing some house cleaning.
Anger is an issue I now have because I don't think I was ever allowed to express it as a child. Now it comes spouting out of me like lava and I am trying to let it go. Everyone who has hurt me has their own issues, which probably have nothing to do with me.
I did a great job caring for Jim even if it was more than hard sometimes. I did it out of love and compassion and I am glad that things between us got a lot softer towards the end. I know he loved me and trusted me more than anyone in his life.

 It snowed here overnight and since the temps were in the teens, even the roads were covered. Even though it was only an inch or so schools were closed for that reason.
I love the quietness of the snow, less traffic and other activity. Good reason to chill out, or in this case curl up with a book and keep warm.
 My poor feral kitty Bitsy managed to hobble up the steps for breakfast but I imagine she has crawled back into the garage for shelter.
 Jim called me around 8:30 this morning from the dialysis unit at Deershead. It is directly across the hall from his and a full Freesenius unit that also treats daily patients.
His stay there so far has been totally positive and I am hoping it stays that way.
They brought in a clinatron bed yesterday and are still trying to find a way to make the transfer without his bending his back. It looks very comfortable and I was tempted to try it out but it wasn't covered yet and I didn't want to get caught!
 Things have been going smoothly with us since the trip to Hopkins. The distance between us physically has been beneficial for me. I am able to plan my time without feeling neglectful of him. I have had time to waste, not constantly jumping from one crisis to another.
 I have also been having some interesting dreams, touching base with friends from the past...I am not sure if I am saying goodbye to all that but it sort of feel that way..
 Maybe I am making way for our new future without so much illness and stress. I hope so.
 I actually feel better all over and found myself laughing and joking on the phone. Haven't done that for a while..