Unforgetable

Jim had a wonderful visit with Scotty and Judy Watt from Gettysburg yesterday. He really perked up for a while. He was also able to get out of bed and into a wheelchair for a short while( first time since Christmas day) with the help of Scotty, Judy, the aide, and myself. Unfortunately, last night he had a bad night with renewed agitation (BIG TIME) and the aides quit on me (although they finished their shifts, they let me know they would not be back). The agency would have gotten new aides, but Hospice thought he would be better off in the In-patient Unit again til they get his meds straightened out again. So an ambulance transported him and he is settled in his old room again. All the nurses and doctors and volunteers remembered him well (we all know he is UNFORGETABLE) and welcomed him back with loving arms. I swear anybody who works for a hospice has to be a saint--what beautiful people they are. So we feel safe and well-cared for again. The address at Capital Hospice is:
4715 North 15th Street
Arlington, VA 22205
703-525-7070
But please call first if anyone plans to visit. Happy New Year from Barbara and unforgetable Jim

Home Again

Jim came home yesterday from the hospital into Hospice care again. I have hired 24 hr. nurses' aides to help me care for him. Yesterday was a bit chaotic with the transition and having to meet with so many people (discharge planners of hospital, discharge planners of hospice, agency nurse who will supply aides, and finally the hospice nurse to readmit him). After many hours of figuring meds and doses, we settled into a routine. He was quite agitated during the night and parts of the day, but is sleeping soundly now. We had a wonderful surprise of Kevin Burke from Boston area pulling into our driveway at 8:00 am to visit with Jim and I. His brother, Walter, drove down with him. They only stayed with us a few hours and took off for home at 11:30 am. Kevin had to get home to Linda who has been ill and it is also their 42nd Anniversary tomorrow. It meant so much to have him here. We will be visited by Scotty and Judy Watt tomorrow from Gettysburg--old friends whom we haven't seen for about 2 years. LOVE AND HAPPY NEW YEAR TO ALL. Barbara and Jim

Christmas, 2009

Most of Christmas was lovely. All kids and grandkids and Pat and Rick came to the Hospice In-Patient Unit to visit us. Since they have a very homey family room with Christmas tree, a piano, and a toy box full of toys it was a nice atmosphere for everyone. Toddler and babies came by in am with parents--unfortunately Jim slept thru their visit, but Barb enjoyed it immensely. It was great to have 3 year old Willie come up to me and whisper, "Nan, can I go in and kiss Pop?" So he and I went in to check on Jim and he was still sleeping peacefully in his room, but I was able to get a couple of pictures of Willie kissing Jim--first on his leg and then venturing up to kiss his arm and Pop just slept thru it all. But when I showed Jim the pictures later in the day, he was so pleased. The afternoon brought the older kids and my sister, Pat, and husband, Rick and Jim was awake (and himself) to enjoy them. He was his old teasing self when 14 year old Jimmy (who has never liked being kissed) bent down to give Pop a hug, Jim grabbed hold of his sweat shirt and wouldn't let go until everyone in the room gave Jimmy a kiss! And then he still wouldn't let go until Jimmy gave him a kiss.
Then in the evening Jim ran a fever and was taken to Arlington Hospital, diagnosed with a right lower lobe pneumonia, and admitted and treated with IV antibiotics. I spent the night with him again and he did not sleep a wink! He was extremely agitated and confused trying to pull out all his tubes (Oxygen, urinary catheter, and IV's). Nothing they gave him calmed him down. His temperature is better today, but he remained agitated and confused. A new medication was added and did give him 2 hours of calmness and lucidity, but still no sleep! Our adult children were all there with him today and are spelling each other throughout the night as they are insisting I come home to sleep tonight since I literally was awake all night with him. He will probably remain in the hospital til Monday at which time he will be discharged into Hospice care again, but this time maybe to home. We will meet with the Hospice liason person tomorrow morning for the discharge plan. We think we will need 24 hr. care by nurses' aides if he does come home as he is now too weak to even stand with help. My poor, poor Jim. Love, Barbara

Christmas Eve

After many days of heavy sedation, Jim woke up yesterday morning feeling pretty good, although weak. He talked about wanting to be able to think more clearly and not be bothered by hallucinations. It has been a blancing act on the part of the doctors to relax him, but not so much that he sleeps all the time. Just when we thought it was going in the right direction yesterday his right hip dislocated again and we spent the night in the ER of the local hospital while they knocked him out and manipulated it back into place. He returned to Hospice at about 2:30 am (Joe was with him--he relieved me at 11:00 pm). And it seems like today he is back where we started--very, very, very agitated. Several family members took turns sitting with him and he was visited by friends, but for the most part he was nervous and agitated. The nurses and aides have just gotten him ready for bed and gave him a shot of Nembutal, so he is now asleep and I'm hoping he will sleep thru the night. I will stay with him on a cot next to his bed so I'll be there when he awakens on Christmas morning. May the Christ child be in your hearts this holy night and may it be a "Silent Night". God bless you all. Love, Barbara (and Jim)

"La-la" Land versus Bouncing Off the Wall????

Hi all--posting this from the Hospice IN-Patient facility in Arlington. Jim came here Wednesday night so that the Hospice team could tailor his meds to prevent anxiety while still giving him a good night's sleep. It turns out to be more difficult than anticipated as he is either "zonked" or anxious and restless. But they're working on it. He was extremely restless last night until 4 am when they gave him a Nembutal and then he slept til noon, woke up ravenous, ate a huge lunch and after a bath and massage he's snoring away again. It's 3:40 pm now and he's been napping since 1:30 pm. Seems to be a feast or famine situation!
Our kids and grandkids and Pat, Rick, Susan and John were all here Friday night to sing happy bithday and have cake and ice cream in the Hospice Family room. Jim just loved it, but tired after about 45 minutes. Results of his spinal tap at NIH showed no lymphoma cells in the spinal fluid so the treatment they had recommended wouldn't work for his anxiety. They'll have to control it with drugs. Most doctors agree that the anxiety, restlessness, and insomnia were caused by the toxic effects of the Chemo. Keep praying for his peace of mind. Thanks. Barbara

Birthday in Hospice

Jim was admitted to the in-patient unit of Hospice yesterday. They want to look at all the drugs he's on and hope to tailor them to control his anxiety, restlessness, and intermittent confusion. Also to allow him to sleep. He seems slightly improved today and may come home tomorrow. Many visitors to wish him a Happy Birthday--73 today! Erin came with Finlay and Maeve and Pop invited the girls into bed with him for a birthday hug. Pat and Rick, Carol and Fred, Phil Rodilosso, and Jack O'Hara also came for a visit. And many, many phone calls with good wishes. How blessed we are with family and friends! Barbara

Spinal Tap

Had a spinal tap today to see if any lymphoma cells in spinal fluid--won't have results til early next week. Linda McCullagh, a cousin of ours and an NIH oncology research nurse, was there and sat with Jim and I as he had to lie flat for an hour. She's wonderful and had a lot of good hints for handling symptoms. Jim did well with it and did not develop the headache that sometimes follows a lumbar puncture. But he is pretty exhausted and has napped a lot since we got home. I still can't understand why NIH continues to take care of him, but I don't ask since it's the best care in the world. Nervousness, restlessness, agitation, insomnia still a problem. Hoping for a solution soon. Barbara

Our Hearts are Heavy

We are so sorry to let you know that Jim's lymphoma has become very aggressive again--it's even in his lung--and they (NIH team) don't recommend any more treatment. We have contacted Hospice today and the nurse will come Monday morning to start the admission process. In case anyone calls us, we are going to the Retreat for Seriously Ill tomorrow through Sunday--this time as retreatants and not as nurse and helper. Perhaps it is good timing and will help us through this very hard time. Jim did press the doctor to know how much time he had left and although the doctor was reluctant to say, it looks like anywhere from one to six months. This news was not totally unexpected since we have watched the lymph node in his groin grow larger these past few weeks. Jim seems to be more worried about me and how the children are taking it--he is very brave. Next week he will have a spinal tap to see if there are any lymphoma cells in his spinal fluid. If there are, they will recommend an infusion into the spinal canal to relieve the symptoms of nervousness, anxiety and sleeplessness. At this point we are praying for some peace of mind. Thank you all for your love, concern, and prayers--we are so grateful. Love, Barbara and Jim

Update

PET scan was done on Nov. 27 and needle biopsy on Dec. 2. We won't get results til next Thursday (Dec. 10) when we have a clinic appt. at NIH. But a blood test has shown that Jim is no longer neutropenic--first time in several weeks. Our Thanksgiving was so nice at Kathleen and Dan's--a small group of 18. Jim was able to sleep between dinner courses and he was very comfortable. He's been having a hard time with nervousness and anxiety lately, but had a very good day on Tuesday when we went to the National Art Gallery. They have wheelchairs and I was able to wheel him around to various exhibits, do a little Christmas shopping in the shop, and have lunch there in the cafe--all in all, a lovely day. Looking for more of those. Barbara