What follows is a series of updates that I sent to the family, starting a few days after Mom was back in the hospital following a second surgery. She had been in either a hospital or a rehabilitation center since her first surgery more than a month earlier. I started to write the first message while I was in Kansas City, on my way back to California to be with Mom again. Enjoy!
Monday, October 17, 2011 -- Updates: Jean, Jomania, Shirley, and one addition: TOM!
NOTE: Our son Paul's wife Jomania had extensive abdominal surgery the previous Tuesday (the same day Mom had her second surgery to close her incision), and the next day Aunt Shirley went to the hospital with a mild heart attack and stayed over night to have an angiogram.
Hi everyone! We still need a lot of your prayers and positive thinking and envisioning, folks in the family still need lots of strength and comfort and hope, and we've added one more struggling survivor, my brother Tom!
Yeah -- while we were thinking the family had as much struggle as we could take, it turns out that Tom was in the hospital for two weeks after a car crash! He just got out of the hospital last Monday and went back to work Tuesday -- David and i talked with him yesterday. Thankfully he's back on his feet and feeling better -- let's hope he is fully recovered soon!
Meanwhile, Aunt Shirley seems to be doing well except for being very sore where they inserted the tube to test her heart and there was so much blood leakage there. It makes me cringe to think of it, I hope she feels better soon.
And Jomania is having a tough time. You know that she is back home but she was having a lot of pain until we talked with her this afteroon -- she was starting to feel a little better after going back to eating only liquids, her intestines are still not ready to handle anything more than that. It's not too surprising when we think of all that was done in the surgery, it will take time for her to get back to normal. She was very sleepy and tired after we talked, I expect it's taking a lot of her energy to heal. I hope she is feeling better now, and that she can take food and get her energy back soon.
I can't update you on Mom, I haven't been able to reach her for the last 3 days. I sent an email letter to the hospital today but they won't be able to get that to her till tomorrow. Meanwhile, last Friday the discharge nurse said Mom will probably leave the hospital tomorrow, they are trying to find a rehab center that will accept someone with the TPN nutrition tube. I've also been unable to talk with the weekend discharge staff, so we'll see what happens tomorrow.
Right now I'm at David and Pam's, I'll arrive in California very late tomorrow night and will stay overnight at Aunt Shirley's -- Stephanie arrives around the same time I do. Tuesday morning I'll finally get to see Mom, and find out how she's doing -- I'll send you another update then.
Lots of love,
-- Dona
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Hi guys! Wow, these two days have been quite a trip.
I wasn't sure what I would find when I first saw Mom yesterday (Tuesday) morning.
She had not been answering her phone for days and when we did reach her, she was discouraged and frightened that she hadn't gotten strong enough to start her chemo yet, and seemed confused.
Monday afternoon, on my way to the airport to visit her for 3 days, her surgeon called to say she seemed depressed and ready to give up, and suggested Mom might recover better if she could go home instead of going to a rehab center.
Just to back up and give you the whole picture, Mom was recovering from surgery done as an emergency last Tuesday to close her incision again from her first surgery; she had a urinary infection from one of the more virulent and resistant bacteria; and food was not getting through her stomach fast enough (when they did an xray of her lungs last weekend, there were still traces of the contrast material in her stomach that they put in there 10 days ago!).
Mom was in isolation because of the urinary infection (which by the way is apparently licked! They're waiting for the results of the latest test to make sure). So I had to put on a gown and gloves and go through two doors to enter the room. She was sleeping and looked like death warmed over, incredibly emaciated, eyes sunken. When she awoke she was glad to see me, but seemed weak and listless.
So I asked to her to ask her Inner Being what she wanted. Did she want to peacefully and comfortably go see Dad and her mother, or live to write and paint and dance another few years? I was prepared to support whichever decision she made. After some deep soul-searching she realized . . . she wants to enjoy life another couple years.
I then talked about how the chemo is important to lick the cancer but another essential weapon is exerting the power of the mind against it, and we don't have to wait to start that. She seemed encouraged and together we did some meditation / envisioning. She asked for her meditation tapes so she can work on it throughout the day.
Meanwhile, we started to make plans for her to come home today. I was completely intimidated by all the tubes and wires but was assured we could do it with some help from visiting nurses. I ran to her apartment to get her walker so I could see her working with the PT before coming home. And that afternoon, when the PT came, we had a rude awakening.
She was barely-barely able to stand up for only a few seconds with support from the PT. It turns out that the surgeon is the only one who thought she should go home, and I believe that was because Mom seemed so convinced that it was the only thing that could make her happy and motivated to get better. Her regular doctor (Dr. Ierardi) and the PT and everyone else on the team thought she wasn't ready for going home.
So I had another serious talk with Mom. She and I considered all the choices and I asked her which would facilitate her recovery the most. I assured her that everything was on the table -- if she thought the best choice was to go home with a lot of support, that would be arranged and I would extend my stay a week or two.
It didn't take her long to decide - the choices are fairly straight-forward. The setting that can offer PT several times a day and OT to help strengthen her hand so she can write and paint again, as well as staff there night and day to help her get up between times is the rehab center. At home, she'd get PT/OT only a few times a week, and could be out of bed only while there was someone there to help get her back in bed -- a few hours a day at the most.
So it was decided. When her beloved Dr. Ierardi came last night, he was pleased to find that during the day, she had become motivated to get better and had figured out how to do it. I have some pictures of them after the discussion, including doing a "high-five" below.
So today was a very busy day as she got prepared to go to Country Villa, and she went there this evening. She has a LONG way to go and many challenges but already today we saw a lot of progress (she was standing up with little or no support a half-dozen times) and, twice before in the last few months we've seen her go in just a few days from this same state of weakness to being strong enough to walk. So we believe that within a week, she can get strong enough to get back home with a lot of support. I have extended my stay for another week and a half and we'll see what happens then.
What she needs your prayers for most is for her stomach to open up enough to allow food to pass through it so she can gain the nutrition she needs; for her strength for standing and walking to increase; and for her to clean out the microscopic cancer that remains in her body (the cancer surgeon feels that the prognosis for that is very good if she becomes strong enough to do the chemo).
Tomorrow I'll find out how you can send messages to her and whether she wants to get phone calls and visits. Meanwhile, I'll pass on anything you email to me. Thank you, everyone, for all the love and support you've been sending, I love each of you very much!
Lots of love,
-- Dona
HIGH-FIVE -- Team together for success!
Friday, October 21, 2011
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Hi guys! I can't believe the difference in Mom from when I saw her Tuesday morning (or even Wednesday evening when I last updated you, for that matter!).
It seems that she is progressing at a logarithmic level -- every day she is doing twice as much or she has improved to twice the level that she was before.
- strength: just last Tuesday afternoon she was not able to even stand without help, and today she walked out of her room and about 30 feet into the hall (twice as far as yesterday).
- eating: Her stomach seems to have unclogged! This was the major hold-up (no pun intended!), but she's actually getting food down, and each day she eats twice as much as the day before (Tuesday she couldn't get anything down, Wednesday she ate a few bites, yesterday she ate a total of about a half cup of food and today she ate a whole container of yoghurt, a full serving of potato salad, and a cup of jello with fruit). Tomorrow she'll be eating a banquet dinner!
- Her writing has become legible and relatively strong.
- urinary tract infection -- seems to be gone! We'll get the final report soon but it seems to have cleared.
And there's something more I can't put my finger on . . . I guess it's that she seems to be like herself again! Her eyes and face are what give it away -- instead of eyes being sunken and looking listless, her eyes sparkle and she looks vibrant and eagerly engaged in whatever we're talking about or doing. I wish I had taken a picture of her as she sat in the chair for lunch and then sat by the patio door in her room -- I'll get a picture tomorrow for sure.
Okay, let's list everything:
Lots of love,
-- Dona
P.S. I thought you'd enjoy a dream Mom had this afternoon. I was sitting near the bed as she took a well-deserved nap and suddenly she was smiling and saying something loud that was muffled but sounded like, "okay! okay!" Just then she woke up and I asked if she was having a dream. She thought a minute and said "Oh, I guess it was a dream."
She had been dreaming about a TV show, there was an airplane that was trying to land but the pilot was having difficulty knowing where the landing strip was. The plane landed perfectly and she called out "Hurray! Hurray!"
What do you think the dream meant? I wonder if Mom was the pilot, guiding her soaring airplane to a perfect landing.
Today was yet another great day. It is the weekend so Mom had only one session with the therapist -- she walked a long way with the walker and then we sat in the little patio outside her room and planned what she needs to do to get home.
I took some pictures -- you can see that she is back to being herself.
Mom is making a list of everything that she can benefit from here at the rehab center that she can't get as well at home. First on our list is getting rid of the catheter. So this afternoon Dr. Ierardi approved a plan to take it out tomorrow morning and give her all day to try to urinate (when they tried it in the hospital Wednesday night just before she came here, we tried everything to get her to relax and urinate -- I poured water from one glass to another, had her hold her fingers in water, talked about the Niagara Falls [thanks, Stephan, for that idea, you little rascal -- remember when I had to go to the bathroom so badly and you asked me about our trip to Niagara Falls? It wasn't until about 5 minutes later that I realized you were just teasing me!]) but no success. Wish us luck for tomorrow!
We figure there isn't much else left to do before she's ready to come home -- she just needs to be a little stronger so she can walk around the apartment without assistance, and hopefully be able to eat enough to get off her TPN nutrition feeding. Her writing is much improved -- still a little shaky but she's confident it will come back as she gets stronger.
Enough -- good night!
Lots of love,
Dona
Sunday, October 23, 2011
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Well, THAT was easy! The catheter came out this morning and STAYED out! If we had known how easy that would go, we might have tried it sooner. Or maybe it was so easy because we waited.
Anyway, that's one more thing on our checklist -- DONE! Meanwhile, today was kinda funky. When I called Mom before going over, we talked about going home Monday or Tuesday and when I arrived, she was in bed and looking irritable and said she wanted to go home NOW! The food was awful and if she was home she wouldn't be required to wait for someone to help her get up and go to the potty chair.
But when she did go to the potty chair, she needed a lot of help, and except for getting on the potty, she stayed in bed all day long. And all day long I nagged her -- eat so we can get the TPN out of you, get out of bed so you get strong enough to get around your apartment without help! When she wanted the staff to help her scootch up to the head of the bed, I urged her to push herself, like I had seen her do earlier -- but she just said it feels nice to be scootched up by the staff and asked them to do it for her anyway.
Finally around dinner time, as I was despairing that she would be unable to take care of herself when I leave Friday, we talked with Paula. And oh, my, how she spun our heads around!
Paula explained that days like this are part of the healing process. You take two steps forward but then you need to take one step back to regain your energy so you can take another two steps forward. Days like this are exactly what Mom needs in order to progress and heal. And it is during sleep that we do a lot of the healing process and our immune system does its work. Paula said that Jomania needs to know that the same is true for her.
Oh! Gee! That explains a LOT! So we can relax, take a well-deserved day of rest -- two, if needed. We know she's still progressing, still going to get home and back to normal, there's no rush. Paula imagined Mom going home and being alone like she wanted, but feeling stressful -- Mom and I looked at each other and nodded YES! THAT is indeed what it would be if she went home now.
Well, that lifted a huge burden off our shoulders. Mom felt relaxed about staying there at the center, knowing it isn't forever and knowing she's getting the care that she needs right now, getting scootched up in bed when she wants it, help to the potty when she needs it. There will come the day that she feels she doesn't want it or need it, and THEN she can go home with confidence and without feeling stressed. If food is an issue, we'll work it out -- have her driver or her paid assistant get her the food she wants.
And I can stop fretting about what happens when I leave Friday. I can feel assured that she is being taken care of and when she goes home, she won't need anyone, she'll be herself again.
So we plan to enjoy the days we have together, Mom's not on a marathon, she's recovering at a good pace and I'm relaxing, keeping her company while I get my work done on my computer, enjoying a movie with her in the evenings, and leaving as planned on Friday to go visit Mark and Jill and Thea with Fred (ahhhh, Fred! it will be great to see you again!)
Love,
-- Dona
Thursday, October 28, 2011
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Hi everyone! This is my last night here, and I'm sitting with Mom.
She is smiling and chuckling as she listens to David reading her a "bed-time story" over the phone.
He's been reading a chapter out of Winnie the Pooh every night, and it's such a sweet turn of events, as I remember very fondly that Mom read them to David and me at bed-time when we were very small.
I couldn't resist taking a picture, she had her eyes closed and was obviously engrossed in the story and enjoying every word.
Meanwhile, Mom and I are waiting for Dr. Ierardi, as we want to clarify a lot of things. Mom has felt confused over the last few days, thinking there are conflicting statements from the doctors and nurses and PT/OTs -- should she force herself to get her stomach to work (she hasn't eaten in 3 days) or focus on getting stronger and let the TPN take care of her nutritional needs? What should she be doing to prepare for the chemo? Is she being drugged with pills? Etc. etc. I plan to take notes and leave them with her so there is less confusion, and more consistency in information.
The last few days have been very difficult for her -- Mom felt very discouraged (I just read this to her and she says "Winnie the Pooh makes me feel better! Winnie the Pooh sees a problem and he gets all excited and it turns out it's not at all what he thought, and he shouldn't have worried about it in the first place").
Today has been much more encouraging, -- she walked all across the building (I think it's about half a block in distance!) and then did a lot of exercises. It was incredibly helpful and inspiring to hear from Paula a few days ago and read Uncle Dick's messages with concrete examples yesterday before I destroyed my computer (Uncle Dick, could you please send those last two messages to me?) It was very inspiring and uplifting for Mom (and me!) to realize that these days of rest are not regressing, they are an important part of the healing process.
Oh, here is the doctor . . .
Later: WOW! We are ENERGIZED! Mom has a MISSION and we are all on a team to plan her recovery! Dr. Ierardi is amazing, he's just exactly what Mom (and I!) need, he was so patient (and humorous!) and explained everything and worked with Mom to decide what she wants to do. Basically, we found out that getting back to eating is important to prepare her for the chemo, but NOT critical. So she's going to work on it and if it doesn't go well, she's not going to worry. Meanwhile, some of the medicine had been helping her eat, which explains why she was eating rather well until she stopped taking the medicine.
Above on the left is a picture that Mom took of Dr Ierardi and me -- her "bedside team." Dr. Ierardi was explaining everything and I was taking notes so I could share them with Mom and help her remember later. On the right is a picture that we took of the 3 of us after our meeting.
Love,
Dona
Monday, November 14, 2011
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Hi guys! This is not a regular update that goes to everyone, I just needed to share where we are right now with some of you.
You may know that when I arrived here last Wednesday, Mom was depressed, resigned, lying in bed listless and barely able to conjure up a smile to greet me. The next morning, I had an inspiration -- since Mom wasn't improving after 6 weeks in hospitals and rehab centers, the only way she would recover was for her to get home again. The joy and enthusiasm she showed when she thought it would come true confirmed my belief -- the pictures below show the magical transformation she had that day, changing from depressed and barely able to move to sitting up and enjoying a singing performance.
So I made arrangements to extend my stay to be able to take care of her for a week, and then David would come from Kansas City and take a turn.
To make a very long roller-coaster story short, in spite of some incredible highs (such as finding out that finally her stomach is functioning and nothing is blocking it! she cried with joy and relief when we got that news), we know it will be a long time, if ever, before she can go home. Our beloved and incredibly astute Dr. Ierardi last night gently and kindly told her she needs to SHOW him she can eat before he'll take her off that TPN that's giving her nutrients directly into her blood (and requires that a huge honking contraption has to be pushed along to follow her wherever she goes), SHOW him she is strong enough to take care of herself and use the potty before she can go home.
She understood -- it made sense to her and we were optimistic. Well actually, Mom was optimistic but I've had too many experiences where she says she's going to fly to the moon and then she can't even lift her foot. And sure enough, she didn't accomplish much today.
So I called Mom (at 10:30 at night) and told her I love her. She was so glad I called, and we had a really good talk. We know she may never come home, but that's okay, we talked about the options with assisted living, some of which would allow her to have her cat. As long as she gets her normal, sharp brain back, she believes she'll be happy (right now she's confused and disoriented, which is one of the things that I thought would improve if we went home). And who knows, she very well might rally and fly to the moon -- there's nothing physical to prevent that.
After we talked, everything seemed to lift -- my need to put pressure on her, my disappointment in her failures, her fear of my condemnation. It is what it is, it will lead where it needs to lead. I can relax and enjoy visiting the next few days.
I immediately starting thinking about her cat, Jolala. She had been here alone for about a month and a half, and when I arrived last Wednesday she was stir-crazy, craving my lap and attention constantly. This morning is the first time she started to relax and find places to rest that aren't on my lap. I hate to think of her spending more time alone after David and I leave -- I'd like to find her a temporary home for a month or two until we know if Mom is coming home or going to a place where she can keep Jolala or having to give Jolala up.
Would any of you Californians be able to keep Jolala for Mom for a month or two until we know what will ultimately happen to her and Mom?
Lots of love,
-- Dona
- Hi everyone! This is going to the same small group I sent the last update
to. A lot has happened since then.
The day after I wrote that update (Monday), Mom was very discouraged. Dr. Ierardi had told her she has to eventually eat more than she did before all this started and she thinks she could never get there. But he had given her a very concrete, very do-able assignment to get started -- eat just a fourth of a cup of food every two hours. She doesn't believe me when I explained this even though, as far as I know, I've never given her any reason to doubt what I tell her. That's why I take careful notes when the doctor comes, and refer to them when it seems she has mis-remembered or misunderstood.
When she was finally convinced that he had said all she has to do for now is eat a fourth cup every two hours, she started doing it, and did it well. For less than a day. And then she was unable to eat or keep anything, saying that eating filled her with revulsion.
So the next day (yesterday) she wanted to die rather than stay in the nursing home where PTs tell her what to do. She wanted to go home but can't till she gets off the TPN, and she can't do that if she is unable to eat. At that point, she and I had some gut-wrenching discussions, as you can imagine. We agreed to get some end-of-life counseling and I made plans to cancel my flight home so I could be with her as she makes her decision. I wanted to be sure that the decision wasn't based on circumstances and overwhelming depression, but on what she really wants. I asked Dr. Ierardi to come and help us get things in place for end-of-life.
So last night Dr. Ierardi came bubbling in with an idea for her to try -- an idea that had not been an option when her stomach was blocked. The idea was to get her off the TPN without having to eat by replacing it with tube feedings through her nose. As soon as she can tolerate enough liquid through the tube to get enough nutrition that way, the TPN comes off and she can go home. We are hoping it will be in 5 days or less, but will depend on how much her stomach can take. She agreed to give it a try. Later that night, I decided to go home as planned.
So -- originally the doctor had said she could go home after she shows him she is eating and is strong enough to take care of herself. Now she will go home with arrangements for someone to be with her until she get strong enough to take care of herself.
But she does not want anyone to stay with her, she says she has a feeling "get off my back!" when she thinks about it. When the PTs arrived this morning for her exercise, they told her when she gets home she has to have care all the time. Mom assumed "all the time" means for the rest of her life and she spiraled down into depression again, saying she refuses to have any help when she gets home.
Well, after the PTs left, I looked her in the eyes and explained, "Dr. Ierardi is letting you go home before you are ready -- THAT is why you are getting help. As soon as you can take care of yourself, you won't need anyone there to help you. Do you think you could take care of yourself now?" When she said yes," I said, "If I put a note on your door telling the staff to stay away could you get along okay?" She said no, and I explained THAT is the condition in which Dr. Ierardi is going to send her home and, just as she needs help now, she'll need help when she goes home, until she becomes strong enough to take care of herself. She understood and seemed hopeful. I added that the more she exercises here and gets strong, the sooner she can have the strength to take care of herself and be alone again.
I started writing this in her room before I left for the airport. She's said she's in a lot of pain right now because of the tube they inserted for the feeding, but the nurse said it always is irritating and uncomfortable at first and then feels natural. Having the tube is making it difficult for her to talk but I expect that will improve soon. When I asked her how is her spirit, she said she didn't know, but she looked very depressed.
David arrives tomorrow, is staying until Sunday night. David, be prepared for a Mom who is weak and depressed, but that is exactly what I found when I went there last Wednesday night. The next morning, when I told her of my plan to get her home, she practically leaped out of bed and was a completely different person. When the reality that she is going home sinks in (and/or when she actually believes it can happen), you may witness another transformation.
Since she is going home soon, I think there is no need to have someone take care of Jolala -- Aunt Shirley thank you SO much for being willing to do that if it had been needed.
I'm finishing this in the plane, will send it as soon as I get home.
Lots of love,
-- Dona
- I arrived to visit Jean last Thursday, November 17.
Friday she had decided that what she really wanted to do was to die by the next day.
She was getting nutrition through her nasal feeding tube and we expected her to be weaned off the intravenous feeding tube and go home in just a few days. But she was still in pain from the tube down her throat, and wanted to die rather than go on living that way.
A wonderful hospice nurse, Carol, and I talked with her, and helped her understand that she had been through enough to make her stressed, confused, frightened, and disoriented, and that was not a good state of mind in which to make that kind of decision. She agreed to wait until she had been home for two weeks before deciding whether she wanted to die (thank you, Carol, for your compassion and experience!)
But yesterday (Sunday) she sneezed out her nasal feeding tube, which was probably good news in disguise: she can now get an outpatient procedure that we had wanted but were hesitant to do, to insert the feeding tube directly into the stomach. That is happening today, probably about now, and she will return to the Rehab Center after. Then -- drum roll -- she will be going back home Wednesday or Thursday. She will have full-time care there, as she can't yet take care of herself.
- Well, the roller-coaster ride continues!
Yesterday morning, when Dona telephoned Jean and mentioned that Jean was going to the oupatient clinic to have the tube inserted at 1:00, Jean would not believe that any such procedure had been scheduled, and told Dona that when the van arrived to take her there, she would refuse to go.
Dona couldn't convince her, even after telling her that it was confirmed by the nurse and the caseworker.
Jean would be convinced only if Dr. Ierardi told her. So after a bit of scrambling to contact our sainted Dr. Ierardi, he called to speak with her, and she was satisfied that it was okay.
She had the procedure and it was a success. She now has the feeding tube in place, more comfortably going right into her stomach instead of through her nose. So we are very relieved, and can continue the plan of getting her back home tomorrow, arranging for the medical care that she'll need for the feeding tube and 24-hour caregiver assistance for her other living needs.
- Yow, everything is unraveling!
Yesterday, soon after I wrote the update, Dona called to say that when she called Jean about the plans to go home the next day, including the need for Jean to write a check as deposit for the caregivers, Jean responded by saying, "Home? I don't care about going home.
I just want to stay here in bed where I'm really comfortable, now that I don't have any pain."
Dona was astonished, and asked several times to confirm that she really didn't want to go home and wanted to stay there where she is comfortable and taken care of and everything is paid for. When Dona was certain that is what she wanted, Dona called off the plans. But later that afternoon, Dona and I had a long talk, and realized that Mom has to go home in order to have a chance to recover -- she seems unable to recover in these institutional settings. So we set about trying to get her home anyway, as we had planned -- the only obstacle to that happening now, being, of course, Jean.
Soooo...now the situation is that Jean is going to go home on Friday, with plenty of medical and living care, of course. She'll be under the care of St. Michael's Hospice. This came about after a meeting with Jean, me, Dona, and the hospice care worker, where Jean agreed that that's what she wanted... so all in all this is a good outcome, no matter how it happened.
And now -- the rest of the story
That is simply, that Jean seems consumed with despair. She's responding to that despair with an alarmingly stubborn refusal to imagine that things could be any different in her future than they are this very second. She's unable to stop herself from sabotaging efforts by anyone -- family, good friends, or caregivers and medical staff -- to give her hope for the future, to help her with the process of healing what can be healed, to help her find peace, comfort and acceptance for what cannot...or just to brighten her day with a bath and linen change. Perhaps the best we can do if we wish to help is to be there, send her our prayers and thoughts, and ... what? I wish I had more.
I think with a little time and care and kindness she may decide she wants to stay here with us a while longer, so I'm hoping that's what happens. We (including Mom) are hopeful that once she is home, she can recover her sense of well-being, lose her anxiety and disorientation and become motivated to get stronger and healthier. Physically, there are no longer any impediments to her full recovery and preparation for chemo to remove the microscopic cancer that may remain. But we will see what happens.
Meanwhile, Dona and I want to thank all of you who wrote and emailed and phoned and visited and thought and prayed for her. I do believe those things helped immensely, and will continue to help as she is at home and considering her next steps and phase of her life.
David