Medical Updates
This is the collection of updates sent out by Evey, and occasionally by Alan, while their father was in the hospital and then in rehab.
- September 1, 2006 — From Evey
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Dear Family - I just erased the whole megillah I wrote! Here I go again. As you know, our father is in New York Hospital - Queens with a problem involving his right calf. He has developed considerable swelling from knee to toes as well as considerable pain. An attempt to aspirate the fluid this afternoon wasn't successful so tomorrow a vascular surgeon will operate to remove what shouldn't be there. Ted - the decision to do this was made this afternoon before any more damage is done. He is scheduled for a biopsy at the Hospital for Special Surgery by Dr. Joseph Lane but not until Wednesday. The chairman of vascular medicine in consultation with the other doctors felt that this procedure should be done now. It will be done in the morning - we don't know what time.
Since timing is everything, Mark and I picked this week-end to fly to Austin to visit Steven! (Dad said he'd kill me if we didn't go!) We're leaving on Jet Blue tomorrow at 7:55am. Andrew will go to the hospital after dropping us at JFK and Ruthie will meet him there about 8:30. (Thanks Ruthie!) Alan will get to the hospital about 10am.
Also, Dad's very private when he's not feeling well. I'm pretty sure he won't want visitors. He'll let it be known when he's ready.
Thank you all. Talk to you from Texas!
Love,
Evey
- September 11 — From Evey
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Thank you all for your thoughts and prayers. My father had no temperature today, but no word on the final pathology report - hopefully (again) tomorrow. We hope it will shed light on the cause of the painful swelling in his lower right leg. He's in New York Hospital - Queens, but doesn't want visitors. He is so disciplined and brave.
I'll keep you posted.
Love,
Evey
- September 12 — From Evey
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Hi All - Well, the decision was made today to transfer my father to New York Presbyterian tomorrow. Dr. Joseph Lane will be his doctor - he's the authority we were trying to get to last week. The pathology is still inconclusive and the doctors at New York Hospital Queens feel strongly that another biopsy of his calf should be done. The one to do it is Dr. Lane and the place is NYP. They are specialists in soft tissue issues. Sol is feeling pretty crummy and has continued to need heavy pain medication. His leg continues to be very swollen from knee to toes. He still says "no visitors". We thank you again for your thoughts and prayers.
I'll be in touch.
Love, Evey
- September 13 — From Evey
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Well, believe it or not, we haven't made it into the city yet: there was no bed today at New York Presbyterian. The waiting is wearing us down. Dad's underlying condition, whatever it is, is not being treated. He's getting antibiotics and pain medication and he's very discouraged. He's been somewhat disoriented at times, but I'm told it's not unusual when someone has been in the hospital for 15 days.
We're pinning our hopes to Dr. Lane, but the waiting is tough. Hopefully tomorrow we'll see some action.
Again, thank you all for your messages - they mean a lot.
Love,
Evey
- September 16 — From Evey
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I know I haven't written - I've been getting home very late from the hospital. Believe it or not, we're still stuck in Queens. We've been trying to get in to North Shore since yesterday morning when we found out through the grapevine that Dr. Joseph Lane at NYP had decided not to accept my father. No one told us. So we waited from Tues. afternoon to Friday late morning for a bed in NY for nought. Dr. Mel Klein, Fran and Walter's internist, made the arrangements at North Shore, but there was no bed yesterday, and pulling strings didn't help. My father is suffering from pain and depression. The way our health care system works is unfathomable. Alan came in yesterday morning and I'm glad not to be alone. My father still doesn't want anybody else to come, but it's hard to be alone all the time and my heart aches for my poor father who doesn't deserve this. Mark is trying to get him in to LIJ through a friend, but it looks like nothing can happen until Monday. You get to really hate the weekends. I can only hope North Shore comes through today.
Thanks for listening.
Love, Evey
- September 18 — From Evey
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Finally some light ahead. My father was transferred to the Acute Geriatric Unit at North Shore Saturday night. Dr. Klein came that night and three times yesterday. We have great faith that he will get to the bottom of this. My father's pain doesn't seem quite so severe, but it's hard to tell. He has so much courage - he's trying to take less pain medication because he's concerned about his mental confusion as a result of so many pain killers.
Still no visitors - not even Judy - and he really doesn't want calls yet. I'll let you know when. He still has his sense of humor though, despite his humiliation at being so helpless and dependent: when we found out that he was going to a geriatric unit, I told him that the staff would soon realize their mistake, and he laughed.
Thanks again for all your messages. We do so appreciate them.
Love, Evey
- September 19 — From Evey
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I thank you all again for your messages. I know that many of you have experienced what Alan and I are going through now. A reconstructive plastic surgeon came tonight to examine the wound left by the procedure 2 1/2 weeks ago. I'll spare you the details, but he'll be back in 2-3 days to see how the wound is doing. He may decide on a procedure that will encourage the tissue to grow. The doctors seem to expect this "condition" (for lack of a better word) to heal, but it's going to be a long, tough road. The swelling is still extreme and the pain considerable. My father is very weak from all this time in bed - he can hardly raise himself up to sit on the edge of the bed to eat. I have to say that he's despondent about his condition. We may never know what caused this - the doctors still don't know and are concentrating on getting him over it. I hope he sees some progress and that will help lift his state of mind.
Thanks again.
Evey
- September 21 — From Evey
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Nothing much new. The physical therapist was in today and started teaching my father how to use the walker. It exhausted him, but I think it gave him the feeling that he could do something besides just lie there. He still has a lot of pain and the wound is a big problem - it's not healing well. The doctors will have to do something, don't know what. My father needs a break!!!!!
I wish you all a happy, healthy New Year,
xoxoxoE
PS Don't feel you always have to respond to my messages - I just figure you'd like to know what's going on.
- September 25 — From Evey
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Well, I thought I would have some positive news today, but no dice. My father's intense pain has only increased and they started giving him morphine every two hours over the weekend. Even that doesn't do more than take the edge off. Dr. Klein, the internist, and Dr. Skalasky, the plastic surgeon, came in this morning. The problem continues to be with the margins of the large wound from the surgery 3 1/2 weeks ago. The tissue continues to degrade. The plastic surgeon has debrided it twice but the area has not stablized. The chief of vascular medicine was called to consult by Dr. Klein but did not show up today or tonight. A psychiatrist visited my father because he's been telling the nurses and doctors that Dr. Kevorkian should get a medal, not jail time. The psychiatrist also deals with pain management and suggested a nerve block that should almost totally relieve the pain. I hope it's appropriate and that when Dr. Klein reads his report tomorrow morning, he orders the procedure. It's so hard to watch my wonderful father suffer like this. It's such a helpless feeling and I am heartsick. I can only hope tomorrow brings some relief.
xoxoxoE
- September 26 — From Evey
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I thank you all again for your messages. They really do help shore me up. The only positive thing that happened today was that Dr. Sastry (not to be confused with Dr. Skalasky! -- and as my father has been saying, don't they have any staff with normal names that a person can remember?) the chief of vascular surgery at North Shore, came to examine the wound. He feels he can surgically remove the bad tissue by doing an extensive debridement and preserve the leg. He arranged for my father to be transferred to the main hospital down the hill. A bed became available tonight after I left. Early tomorrow morning I'll find out what time the surgery will be. Here's a spooky thing, and I choose to take it as a good omen: my father will be in room 607, the window bed -- and that's the same room number and bed position he had in New York Hospital Queens!
Otherwise, today was very difficult. The doctor increased the morphine to 3mg. every two hours, and that has made my father somewhat incoherent. My big cousin Ted came today to stay with me awhile - and my father couldn't throw him out because he wasn't really aware that Ted was there.
The decision was made not to administer the nerve block since the surgery is tomorrow. Dr. Sastry feels that even with the post-op pain, it won't be as bad as it is now. I really got a positive feeling from him and I'm counting on him. He said this appears to be the result of a "compartment syndrome" where for some reason part of the muscle dies. Let's hope and pray that this surgery will work and my father can start on the road to recovery.
Thank you again for all your thoughts.
Love, E
- September 27 — From Evey
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Well, believe it or not, the surgery wasn't done. We waited at the hospital until 9 pm - there was no operating room available. It will be done tomorrow about mid-day. My father has had nothing by mouth since 6 pm last night in preparation. Two positive things: Dr. Sastry seems confident that this procedure will be successful and that he will be able to apply the "vac" dressing to encourage healing; and they finally hit on a drug combination that seems to relieve a lot of the pain but it does make my father somewhat "loopy" and it's pretty hard to tell how he's feeling. I arranged for a private nurse to be with him tonight thinking that he'd be recovering from the surgery. Well, at least there will be someone right there to care for him. Of course, I told him that the doctor arranged for someone to stay with him when it became apparent that the surgery would be delayed -- otherwise I'm sure he would have summoned the where-with-all to protest!
Well, as Scarlet said, "Tomorrow is another day".
Love, E
- September 28 — From Evey
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This is a difficult message to write. My father wasn't taken to surgery until almost 5 pm and the results were not good. There was a much more extensive amount of bad tissue and muscle than the surgeons anticipated. They removed what they could - about 70-80%. The rest couldn't be removed because that would have restricted the blood flow to the rest of the leg. As it is, my father will not have the use of his right leg at best. We have to hope that the tissue heals. The "vac" dressing couldn't be applied because there was not enough tissue left to apply it to. If healing doesn't occur, the doctor will recommend amputation above the knee. My father doesn't know yet. He's being kept in the recovery room overnight so they can stay on top of the pain medication. Tomorrow morning they'll insert a spinal catheter to administer pain medication more evenly. It couldn't be done tonight because he's been on blood thinners.
- September 29 — From Evey
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Another day. My father had much less pain today than he has been having and needed much less pain medication - a very good thing. He's still having trouble expressing exactly what he wants to say and is somewhat confused. He realizes it and is annoyed by it. The doctors, and he has lots of doctors, say it's because of all the pain medication still in his system. The end result is still in doubt. He doesn't know yet what was done and what the prognosis is. The surgeon said he would explain everything to him and I'm sure he will when he feels my father is able to focus a little more. He's being given an anti-depressive and I have to say that seems to help his mood. We'll see what tomorrow brings. One day at a time.
Thank you again for your messages.
Love, E
- September 30 — From Evey
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What a roller-coaster. Today was not a good day. My father was not at all lucid, babbling things we couldn't understand. It's hard to believe this is my father. Alan thought maybe the anti-depressant was interacting with the Percoset because Percoset hasn't caused these kind of problems up until now. We discussed this when I was on my way home tonight, so I called the hospital, spoke to the nurse and told her to call the resident. I suggested that the anti-depressant not be given until we know. I also got an aide to stay until tomorrow morning. Maybe I'll sleep better! I tell you one thing, you really get to hate the week-ends when you have someone in the hospital. The lack of co-ordination and carry-over is so frustrating that I want to scream sometimes.
I thank you again for all your messages, suggestions and love for my father.
Love, E
- October 2 — From Evey
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It was too late last night to write. The night before last, the doctor called a little before 1am to say my father's hemoglobin was low and they wanted permission to give him a blood transfusion. By mid-day yesterday, the count was better.They can't figure out what is causing my father's confusion and every day he seems more diminished. The surgeons change the packing every morning and said yesterday the wound looked "better" but that a lot of healing still has to take place and they're not sure if it will.
I'm about to leave for the hospital and then I'll be going to concluding services this evening - the only thing I'm going to pray for is that my father, who never asked for anything in his life, find peace.
Love, Evey
- October 2 — From Evey
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Well, we have to make a very painful decision. The surgeon came in this afternoon and said that the wound isn't healing and the surrounding tissue is becoming necrotic. There is the probability of sepsis. He feels that amputation above the knee is necessary. He and I told my father but I'm not sure how much my father grasped. Alan is coming tomorrow and we'll have to make a decision. The doctor wants to do it on Wednesday.
If you have any thoughts, I would welcome them.
Love, Evey
- October 3 — From Evey
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Dear All of You - My father made the decision today to go through with the amputation. Rabbi Gellman spoke to Alan, Marsha and me for some time and then went in to speak to my incredible father alone. My father summoned his resources and, as Marsha said, perked up when we told him Rabbi Gellman was there to see him. We are so grateful to the Rabbi for clarifying the issue for us and for my father, who has always had boundless resolve and is otherwise healthy. We don't know what lies ahead except that it will be a great challange and we'll do our best to help him through it. The surgery is scheduled for 11:30 tomorrow morning.
Thank you again for all your loving messages.
Evey
- October 4 — From Evey
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The surgery was done today and the doctor said it went well. My remarkable father now has to struggle to accept what is. It's one thing to make a decision and another to live with the reality of the consequences. For all of us, every day is a trial and my heart aches.
I thank you again for your messages. I know how much my father is adored by all of you and I hope he will relent when he gets into rehab and welcome visitors.
- October 5 — From Evey
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My father seems to be increasingly aware of the amputation. Sometimes I'm not sure. When I got there today, he really seemed depressed to me - very subdued, even though he has been pretty quiet all along. The doctors were all in this morning and Rabbi Gellman came to speak to him again. The doctors say things are going as expected except for my father's confusion which became more apparent as the day wore on. They have reduced the type of pain med. and the dosage, giving the minimum - just enough to manage the pain. A head scan will be done tomorrow to see if there's any reason for his confusion. They're looking at him from all angles. Sometimes hospital stays can cause what they call "hospital psychosis" which disappears on its own once the patient is out.
We have an aide staying from 11pm to 8am so at least we know he's not alone during the night if he needs anything.
I know this message is rambling, and I wish I had more enthusiastic news. Maybe tomorrow.
I thank you all again for your messages by phone and e-mail. I'm sorry I haven't been able to respond individually - I am just out of steam at the end of the day.
Love, Evey
- October 6 — From Evey
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Well, there seems to be light at the end of the tunnel! My father was more himself today than he's been in weeks. His color was good and he was completely lucid. Everybody saw the difference. The vise that has been around my heart is easing. The doctors expect to discharge him to rehab on Monday or Tuesday and I'm sure that's when he'll get the support he needs to help him accept, adapt and live a full life. We're hoping he'll be able to go to the rehab facility right at North Shore, but we won't find out until Monday.
Love, Evey
- October 7 — From Evey
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I think the enormity of what has happened is sinking in and my father seems to be trying to grapple with it. A hard road lies ahead of him. Until now he's been in bed most of the time. It takes two people to transfer him to the chair - we haven't been able to do it - and he stays there until we can get two people to transfer him back. The dependency is awful for him and I hope that he'll soon have the physical strength to learn to transfer himself. It will take a while before he gains back the weight he lost and builds himself up. Monday is the day we expect him to go to rehab, although we won't find out until then if he's going "up the hill" to the North Shore facility. He's started complaining about the food - a good sign - so I'm bringing some of the things he likes tomorrow.
This will be a journey for all of us.
Love, Evey
- October 8 — From Evey
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The realization is sinking in and my father told two people today that he is "terrified" of what lies ahead. I told him that he'll get all the support he needs at rehab and that they're experts at teaching him what he has to learn to be independent. He hasn't been too impressed with the physical therapy in the hospital but I assured him that the rehab therapists would be much more effective and focused. The doctors will decide if tomorrow is the day when they examine him early in the morning.
Love, Evey
- October 9 — From Evey
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My father was moved to the rehab facility at North Shore today and I thought we'd have smooth sailing. He's just feeling lousy, principally because he's been beset by nausea - they're not sure why and they're having trouble controlling it. I hope he gets relief after a few doses of Reglan prescribed by the doctor. The place looks good and I think the therapists will really be able to help him, he just has to feel well enough to be able to give it a shot. It's so hard to see him laying there completely helpless. As you can imagine, his frame of mind is not good and I feel he's on the verge of asking us what we've done to him.
I thank you again for all your messages and prayers - I hope they hit their mark.
Love, Evey
- October 10 — From Evey
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I've added a number of my father's friends to the updates thanks to my brother providing the addresses - it's amazing how many of you use e-mail! You can scroll down to read the whole story.
Today marks six weeks that my father has been in the hospital. We brought him in on August 29. He wore clothes today for the first time in all these weeks and he was taken to physical therapy and occupational therapy this morning for the first time. He said the therapists exhausted him. He also really saw the stump for the first time and he was shaken. He still has digestive distress but was able to eat a little lunch even though he can't stand the institutional food. We're trying to give him supplement drinks to put some weight back on him. Alan and I took him for a walk in the wheelchair since it was such a beautiful day and then he slept for about 2 1/2 hours. We're hoping that if he sees a little progress every day, his spirits will lift.
Love, Evey
- October 11 — From Evey
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I have to characterize my father as being despondent. He doesn't see the point in going through this and doesn't see himself ever getting back to having a meaningful, active life again. He still will not accept visitors, although I am working on him to relent. I've told him he needs the companionship. If he could just eat enough to raise his energy, I think he would be open to company. I'll let you know. As it is now, everything exhausts him and he just wants to sleep. He couldn't really get the benefit of physical therapy today because by the time they came for him, he was to weak to do much.
I've spoken to the doctor and have asked for the psychiatrist to come to see him again. Can you believe it - my father? He needs to talk about the way he feels but it's really hard to see him like this.
Again, for those of you who've just "joined us", if you keep scrolling down, you can read the whole story of my father's hospitalization.
Thank you again for your messages.
Love, Evey
- October 12 — From Evey
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Today was much like yesterday. I called on every doctor I could, including Dr. Klein, my father's internist, who's been involved since we came to North Shore on September 16. Dr. Klein came to see my father, even though he usually doesn't visit patients once they're in rehab. We appreciated his visit. The psychiatrist also spoke to my father and then said he's "very depressed". I didn't need her to tell me that! The nausea that he's been feeling only compounds his misery. The doctors think it's from the medications, so they're making some changes, including discontinuing the anti-depressant. Don't laugh -- it wouldn't have started to work for another two weeks anyway, and it may be contributing to his distress. He'll also be switched from Percoset to Vicodin. Hopefully the medication for the symptoms and these changes will help him develop an appetite.
He is doing everything he's told. He makes every effort with the therapists and thinks they're wonderful. He's just painfully aware of the things he won't be able to do. The medical director asked him today what he enjoys and my father reeled off a list - but he only included the sedentary activities. I was very surprised that he made no mention of dancing. I guess he doesn't allow himself to "go there" - I'm sure it's painful enough when he thinks about it.
I've been talking to him about visitors, especially a pyschologist friend of his who's done work at the VA. He's thinking about it. I'll let you know when he opens the gates!!!!
I think that I won't write again until there's some progress to report. You never know - it could be tomorrow! I imagine it hasn't been easy for you to read my accounts, so I'll try to "accentuate the positive" as my father always said and did.
Love, Evey
- October 15 — From Evey
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Today was a good day! My father ate breakfast in the common eating area, had a good lunch in his room and let Judy come to visit. She stayed about two hours and it was good for both of them. They really miss each other. They talked and even sang a few songs. My father, of course, remembered every word! I hope he'll be open to having Judy come regularly - and then others. I'll let you know.
I hope he's starting to see that he's still the same person and can sing, enjoy and laugh. When he starts gaining weight and strength, I think his natural optimism will re-assert itself.
Thank you again for your all your messages and cards - they're filling his shelves.
Love, Evey
- October 16 — From Evey
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Things are looking up. My father is starting to eat better and, although the therapists are exhausting him, he's trying. Super Sol never has never turned away from a challenge and I'm sure he will do his best to meet this one.
We found out today that he'll be in rehab another seven weeks or so. Thanks again to all of you in our cheering section!
Love, Evey
P.S.
Sol Stein
North Shore CECR, 104 D
300 Community Drive
Manhasset, New York 11030
- October 18 — From Evey
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I think this is going to be a slower process than we hoped. My father is going to therapy twice a day and is making progress but is extremely fatigued all the time. He's also very depressed and the doctors are concerned. They started him on a different anti-depressant this evening but it will take several weeks to kick in. They're not sure if his fatigue is part of the depression or not. I hope he lets Judy visit this weekend since her visit the other day gave them both a lift.
Mark and I are going to Florida tomorrow until Monday to go to the bris of Trudy's seventh grandchild! I can't wait to see them all and it will be good to get away. You won't hear from me again until Monday night when I hope I can report some real progress.
Love, Evey
- October 19 — From Alan
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Evey and Mark are off helping Trudy and Joel celebrate a simcha - aren't they too young to be grandparents again? - so I get to send tonight's update.
I got there late afternoon. He was lying in bed, looking exhausted, and this was the first time he didn't immediately seem better than the last time. (I had last been there on Sunday.) But then, for the first time I know of, he asked to get out of bed without being prodded. We took a walk outside (well, I walked; he rode) and then went upstairs where I made use of the Internet connection and downloaded both my email and his. After dinner - he didn't eat much of the chicken, not his favorite - he took my laptop on his lap and, for the first time, looked through his own email. (Next step - writing his own replies. He has roughly 200 undeleted email messages left, although most are jokes.)
He also made me take a picture of the Sunflower candy seeds sent to him by Estelle Gottesman. (Thanks, Estelle.) A photo of our father holding them up, with some of the get-well cards in the background, may be viewed on the Schlissel family web site, .
In general, the progress continues, although much more slowly than we'd like. He still thinks I'm putting him on when I say I expect him to come back to the rehab center in a few months to entertain, playing his violin while Judy plays the piano, and also expect him back on the dance floor, albeit a bit less spryly. But they didn't name a grocery chain in Israel after him (Supersol) for no reason.
- October 22 — From Alan
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There were some more small positive signs today.
When we (Marsha, Audrey and I) got there early afternoon, our father was playing gin rummy with his roommate. (He won, of course.)
After the card game, he asked about going for a walk, even before we suggested it. We wound up going into a music performance (Pete LaRosa singing along while playing a synthesizer). Our father was the most vocal of the audience calling out requests: Startdust, Besseme Mucho (sp?), sang along, and seemed to be enjoying himself. He went up to LaRosa at the end and complimented him on his repertoire, and on the fact that he kept the volume below the level of an SST.
He also called his friend Sid Hirsch, who's a psychologist with experience with disabled veterans, and asked him to visit. Hopefully the day when he wants to see more people is drawing closer.
He's still depressed and argued (both yesterday and today) that he'd been around long enough and we'd all be better off without him, but didn't protest much when I pointed out his kids had a different opinion and that he still had some good years left.
- October 24 — From Evey
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Hi Everyone - I'm baaaack! We had a good time in Florida - it was great to be away a few days. My dear friend Trudy is a trooper. I'm so proud of her!
We went from the airport to rehab last night and found my father in pretty good spirits. Last night and today he seemed much more engaged - asking me if I took care of certain things and if I made some calls. He's funny - he doesn't want visitors and doesn't want to talk to many people, but he wants to be sure that I'm in touch with certain people!
We see his sense of humor resurfacing from time to time and that's very reassuring. He still feels very tired all the time, even after a good night's sleep he feels like going right back. Hopefully, this will pass.
He has agreed to keep his car, at least for the time being, as long as I take it to my house and remove the plates so that he doesn't have to pay the insurance. Those insurance payments have really been bothering him! At least this will keep his options open and, in the event he has an aide, they'll be able to use the car when necessary.
There will be a staff meeting Thursday morning to discuss my father's case and I've been invited to attend. The sutures will probably be removed Friday by the surgeon and then a compression bandage will be put on to prepare the stump for the prosthesis. The "boot" that is being put on during the day now is really just to protect the wound.
So, things are moving along and I do see subtle changes in my father's demeanor. I think that he'll feel more encouraged as he continues to see progress. He's started to manipulate the wheelchair himself, something he wouldn't even try last week. He still needs to be transferred from bed to chair, but I heard him tell the aide that he can stand on his foot, a big step forward!
One last thing, but very important: All your cards have made an impact! I tape them to the wall opposite his bed as they come in and there are a lot ! The sheer number isn't lost on him and he said today that all these cards with their good wishes should be enough to get him up and out! Thank you, thank you, thank you!
Love, Evey
- October 25 — From Evey
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Nothing much different today. My father was feeling low. He's so tired all the time and I think that's enough to get him down. He told the doctor today, " Rest was never in my vocabulary." They're trying to figure out the cause. I told him that once he gets the prosthesis, probably the only thing that he won't be able to do is drive - and maybe at 95 it's time to hang it up anyway. I guess it's one thing to decide it's time and another to have the decision made for you.
I'll be going to the meeting tomorrow and I'm anxious to see what they have to say.
For those of you who didn't catch my father's address last time, it follows:
Sol Stein
NSUH, CECR Room 104
300 Community Drive
Manhasset, New York 11030
Thanks again for all your messages. I know you don't hear from me other than my e-mail, but I'm so drained at night that's all I can do. I owe you all - big time!
Love, Evey
- October 30 — From Evey
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Things are moving along - albeit slowly. My father is not as fatigued from the therapy now and is really very much himself - feisty as my cousing Ted says. He's eating a little better - I came up with a meal plan - I remove half the food from the plate and he pretty much eats the rest. It's enough for him and at least he feels like he's eating. He also has a supplement shake that I add protein to after most meals, so that helps. He still looks pretty thin, but seems to be getting stronger. He practices standing up and sitting back down 15 times every day.
You've all been wonderful and I can't begin to thank you. You can't imagine the impact all your cards and messages have had on my father. He sees the number of people he's touched. I always thought my mother was the communicator, the "keep-in-touch-er", but my father really has become the same way over the years and he sees the fruits fanned out before him.
Love, Evey
PS: I'm trying to cut out the string of e-mails after the latest one I write, but I'm having some trouble. My brother, the computer guru, will have to give me a hand. Please be patient.
- November 3 — From Evey
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My day had a good start: I called my father and he answered the phone with "Good morning!" I haven't heard that greeting from him in almost three months. He's settling into a routine and I see him making progress, getting stronger and asserting some control over his environment.
The old CAT scans and x-rays were compared to the current ones today. The doctors are still concerned about what they see; I wasn't able to speak to them directly today. My father is now using a nebulizer to help open his airways. This evening, he and his roommate were both facing the same way in their wheelchairs sitting a few feet from each other, puffing on their respective nebulizers! I was laughing to myself, thinking I should take a picture of them. Don't you know my father removed the mouthpiece and said, "Take a picture!" Tomorrow I'll bring the camera! What I really must take a picture of is all the cards! Thank you, thank you, thank you again.
Love, Evey
- November 6 — From Evey
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We're making progress: my father is starting to let visitors come. Of course, he tells people they can only stay 10 minutes, then they have to leave! I'm just glad he's starting to let the drawbridge down! Ted and Debora prevailed upon my father and visited Saturday. Judy was there a little earlier and two friends came today - for 10 minutes each!
I saw the doctor today. The CAT scan was compared to the earlier tests. The old lung "masses" are smaller, but there are some new areas of concern and there's no way they can tell what's what without a biopsy. The blood clots are being treated. The gastritis is a problem and my father will have an endoscopy to see what exactly is going on. His appetite is almost non-existent. His prostate is also quite enlarged. He says it's been that way for some time and he continues to take Avodart for it. It doesn't bother him.
The doctor wants to call in an oncologist, but my father says, "NO!" And no biopsy. Yes to the gastroenterologist and the endoscopy. I hope they can restore his appetite. He tries so hard to eat because he knows he has to build himself up. He hasn't gained any weight - he's still 110.
Did I mention he's having trouble with his vision? It's one more (big) annoyance. It may be related to a bout of double vision he suffered about six weeks ago. We're hoping it improves on its own, but... As he said - no matter where they look, they're going to find something else that's broke.
Measurements for the prosthesis were taken on Friday. He's really healing beautifully; he's remarkable. I just wish he weren't so down. I'll keep you posted about visiting.
Love, Evey
- November 7 — From Evey
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Not too much to report today. My father is tentatively scheduled to have an endoscopy and biopsy on Friday to see where the gastritis is coming from. It'll be done by a gastroenterologist. He was very subdued today - I'm sure the test is weighing heavily on his mind. I guess we'll be talking about it tomorrow.
The therapy is going well - in fact he had a substitute therapist yesterday afternoon who had him doing a lot more than his regular therapist, Emily. He said Emily is good but she talks too much! I told him to let her know that the sub really worked him hard yesterday but that he was able to do everything she asked. It worked! Emily gave him more to do.
We've been using the computer - I've been forwarding some mail to him and we spent quite a while reading today. I'm trying to get him out of the room as much as possible so he doesn't just sit there and dwell on his situation. For someone who is used to filling his days with activity, doing nothing is very tough. A friend of his will be coming into rehab soon after a heart problem and I hope they'll be able to spend time together. I'm sure it will good for both of them.
Love, Evey
- November 9 — From Evey
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My father should have the "practice" prosthesis next week: Marshall brought the "sleeve" that goes on first and fit it today. He remeasured and will be back next week with a clear plastic model that my father will learn to put on. Once necessary adjustments are made, the final prosthesis will be built.
The endoscopy and biopsy will be done tomorrow morning. I'm hoping whatever the problem, there's an easy solution. My father is so brave. He is angry about what has happened to him and wishes it could be different, but he complains about nothing and never asks, "Why me?"
Love, Evey
- November 10 — From Evey
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I had the best birthday present I could have had today: the endoscopy was fine and although the doctor took a sample for biopsy, he doesn't expect anything. He said my father has the insides of a 20-year-old! The lack of appetite may be due to the prolonged hospitalization/rehab and/or his state of depression. The rehab doctor said that in another week he'll see about increasing the anti-depressant dosage if there's no improvement. My father does have a small hiatal hernia which is probably causing some of his discomfort. He'll continue to take Nexium which may give him some relief.
Today was a long day, but we're so relieved. David flew in for my birthday - a real surprise - and that gave me a lift. Next week we're flying to Austin to see Steven - it's been almost three months since we've seen him.
Thank you all again for your messages - they really do help!
Love, Evey
- November 12 — From Alan
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A video of our father singing along today as Judy plays the piano at the Rehab Center can be viewed on YouTube at
. It can also be viewed by going to our Schlissel and Stein family web site at .
- November 13 — From Evey
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Well, you never know where it's going to come from...Today we were talking when the TV guy came in to my father's room to collect the fee for the coming month (right, my father's been in rehab four weeks already.) He asked how he was doing and my father started to cry. He said, "I'm terrible, just terrible. I'm a burden to my children. They'd be better off if I was dead. I was always independent and active. What do I have to look forward to - being dependent and an invalid?"
I spoke to the doctor and told him I'm anxious to see how my father does with the prosthesis. Hopefully, he'll feel that he'll be able to have some independence. His total reliance on others for his most personal needs, for even his smallest needs, is so hard for him to accept.
I just spoke to him and he sounded fine - watching Larry King and Judge Judy! I must remember to take my vitamins!
Love, Evey
- November 14 — From Evey
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This is David's answer to last night's "you never know where it's coming from" message. Most of you know David since, well, for a long time, and I thought you would like to see this. I'm still overcome by my own kid. For those of you who read it earlier, one more time couldn't hurt! I sent it to my father and he read it when he saw his e-mail today. Even he was impressed, although when Alan called and we were talking about it, my father called out, "Who was David talking about?" He still has his sense of humor!
Love, Evey
Dear Grandpa,
I can not imagine how hard it has been for you to overcome your pain and suffering over the past few months. When I left you this past weekend, the one thing I told my mother was that I couldn't believe how alert you were. You are a truly amazing man. Your heart, energy, and dedication to keep going is so admirable. When you reached out with the razor to shave my beard as a joke, I loved it. I'm still laughing about it. I realized once again how wonderful you are. Your wit still amazes me. The more I mature, the more I begin to understand life and what it means. You mean so much to this family and it is important that you realize we enjoy every moment we share with you. It doesn't matter where you are. You will never a burden on anyone. If there is someone that disagrees, give me their address and I'll pay them a quick visit! I'll change their mind rather quickly. The other night (more like a couple weeks ago) I had a dream (for real) that you were out of the hospital and back to good ole Grandpa Sol. We were all sitting around the table and enjoying yet another dinner together. When my mother told me we were going to have thanksgiving at our house, just us, I realized my dream would come true. I believe in my heart that this is the case. I can't wait till next week.
You have never, and will never be a burden on your children. My father always says to me "Are you gonna take care of me when I get old?" and I say "No, but Andrew and Steven might." Just kidding. You've taken care of your children and your children have taken care of theirs·.and in our case, still are, in more ways then they probably should. But that is what makes our family so special. We don't do anything "normal." You've know that for years though. The one thing we know how to do better then any family in the world though is love each other and help each other. As mad as we are and as annoyed as we get, we are always there to take care of one another. That's what it's all about. We feed off each other to keep going, look out for each other, and under no circumstances do we give up or say no. Unless it's about money. But other then that, we are a yes family. Grandpa, we will look out for you until your back in action. Whatever it takes. We won't give up and you can't either. Your children will continue to take care of you until you send them home. And us, your grand kids will visit you and bring you the love that you've brought us since we were born until you send us home too.
I'm sure I can speak for everyone else when I say, you are in our hearts, in our prayers, and we're not giving up without a fight - we never have. We love you Grandpa Sol and we're with you always.
Love,
David
- November 15 — From Evey
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Nothing to report today. Tomorrow is the big day: my father will try the prosthesis for the first time. I'm on pins and needles. So much depends on this. Stay tuned.
Love, Evey
- November 16 — From Evey
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Well, this is the beginning of the next chapter. My father wore the prosthesis for the first time this afternoon. It's a real piece of equipment. Marshall, our prosthesis guru, showed the physical therapist and me how to attach (?) install (?) it. My father tried to move his "legs" between the parallel bars. It's going to take a lot of work. Even though I've seen him every day in bed and in the wheelchair without his leg, it was a shock to see him upright with this metal thing where his leg was. I guess we have no idea what is involved in learning to use a prosthetic leg. He'll have to learn to walk again but in a completely different way.
When Marshall took the leg off and my father was back in the wheelchair, he said, "I thought I'd walk out of here tomorrow." So did I.
Mark and I are off to Austin tomorrow morning to see Steven - we haven't seen him since the beginning of August and he won't be home for Thanksgiving. We'll be home early Monday. Alan will be here as much as he can.
Love, Evey
- November 17 — From Alan
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Today was a fairly routine day, although the rehab sessions, with his bionic leg (not quite bionic, but maybe in a few years he'll get a real bionic leg and change his name to Steve Austin), took more energy. They had him walking holding on to parallel bars. He gets the weekend off from therapy and then we hope to start seeing significant progress next week so we really have something to give thanks for on Thursday.
- November 20 — From Evey
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We're baaack! It was terrific being with Steven. We really miss him. I wouldn't recommend taking a 7am flight home, though! That's what we did today because we wanted to have the whole day with Steven yesterday - really our only day with him because of his schedule. Mark had to be in court at 2:30 today and just came home! (it's 9:25pm.)
Before I go to sleep, a few words about SuperSol: He's working very hard to master the use of the leg. Today he told me to take it out of the closet and lift it to feel the weight of it. It's heavy ! I actually lifted it last week. It's supposed to approximate the weight of his leg so that he will be able to maintain his balance.
My father got a new roommate today and, of course, "Harry" asked why he was there. That dredged up the whole ordeal again. Harry said, "I can't think of anything worse. And they don't know why it happened!" I'm sure this is going to be a regular occurrence that my father will have to get through. And he will.
Love, Evey
- November 23 — From Evey
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Hello Pilgrims -
Well, I thought I'd be writing a bubbling message tonight, but today did not go as I had hoped. Mark, Andrew and David were terrific, but the obstacles for someone confined to a wheelchair are daunting. We got him from the car into the wheelchair, then the boys carried him up the few steps into the house. Later, we found that the chair didn't fit through the bathroom door, as it wouldn't in most homes. We got a kitchen chair, transferred my father onto it and pushed him into the bathroom. Then David took over. Bless him! The episode upset my father, though, and he became even more subdued. I thought we'd all find some normalcy today, but I think the difficulties that lie ahead became more apparent. If he can learn to use the leg, which he is not yet ready to wear regularly, his daily life will be somewhat normal. If not, well, that's another story.
I spent so much time preparing for today ( actually, making up for all the cooking I haven't been doing ), but I was very distracted today worrying about my father. He hardly ate anything - his appetite is still almost non-existent.
The boys were great - Andrew kept up the conversation and David was a tremendous help to me in the kitchen. They both enjoyed the day, although they saw in a real setting what their grandfather faces.
I know he was happy to go back to the security of rehab where he's used to asking for the help he needs. I was helping him take his jacket off and he shook his head and said ruefully, "It's awful being so dependent." I told him that as he continues to get stronger and learns to use the leg, he'll be much more in control.
As I left, all I could think of was, "My poor father." This is so unfair. I hope we both feel better tomorrow.
Love, Evey
- November 27 — From Evey
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Nothing much to report. My father is struggling with the prosthesis. It's much more difficult to learn to use than we anticipated. I watched today from outside the therapy room while two therapists were working with him. They were trying to get him to use the walker, but he had little success. The effort and concentration it takes exhausts him and the lack of progress frustrates him. I asked the main therapist what she thought about his chances of success, but I couldn't really get a straight answer.
My father has now been in rehab seven weeks. The normal stay for this type of thing is eight weeks; they will probably extend it an additional week. I can't see them discharging him until he has some success with the leg. He keeps telling me he's a millstone around my neck and I sometimes feel that my daily visits do more to perpetuate that feeling in him, but I can't not go. I hope tomorrow will be a better day for him.
Love, Evey
- November 28 — From Evey
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Another day and I see the "oomph" seeping out of my father. I watched him doing some finger dexterity exercises in therapy today and he looked so small and alone. Although there are other patients there, I don't think he sees himself as one of them. He was always a "doer" and in control of things, and now he has to wait for others to make the decisions that affect him.
The prosthesis will be adjusted tomorrow morning - he wasn't able to work with it today because it was too uncomfortable. The therapist was encouraging this afternoon but I think he doesn't give her words too much weight these days.
To be continued...
Love, Evey
- November 29 — From Evey
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Okay - everyone just take a deep breath: we were both feeling better today! There are some other problems that we're dealing with in addition to the amputation, so there there are layers of things to worry about. I asked the nurse for a list of medications that my father is taking. Are you sitting down? 12 - that does include vitamins, but even so...
Marshall, the prosthetist, made some adjustments this morning but also has to order some parts. My father said the leg felt a little more comfortable this afternoon.
We have nowhere to go but forward.
Love, Evey
- November 30 — From Evey
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Nothing new to report. Hoping that the prosthesis parts come in tomorrow so that the fit is better. It's now too big and, therefore, even harder for my father to control. Once there are no more physical changes, the final prosthesis will be made. In the meantime, Marshall is trying to tweak this one.
Til tomorrow...
Love, Evey
- December 3 — From Evey
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I'm happy to tell you that we had a wonderful evening tonight! Mark and I picked Judy up and then my father at about 6 pm and took them to a cantorial concert at Dix Hills Jewish Center. It was great! My father (and Judy) really enjoyed the five cantors and their choirs. Everything went fine and my father stayed out until 10:30 with no problem! I'm happy to leave you tonight on a high note!!
Love, Evey
- December 4 — From Evey
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Thank you for all your messages! And we're moving along -- today the therapist said they expect to discharge my father on Thursday, Dec. 14! I'm so glad he'll be out of an "institution" finally. By that time, he'll have been in for 3 1/2 months! The prosthesis is not yet right - it's very uncomfortable and my father hasn't been able to work with it since Thursday. Hopefully tomorrow the fit will be adjusted with the new parts and we'll see some progress.
Now we have to move into high gear. Although I planned to have my father stay with us, along with an aide, to adjust to the "outside", last week I changed my thinking: I think that it's important for my father to be in his own home with his own things at long last. When I talked to him about it, he immediately agreed. He's anxious to be home. So, Alan is coming in tomorrow and we'll meet at my father's house to see what has to be done and how we can rearrange the house for him. (No, we haven't forgotten about the steps! ) I'm still expecting to take him to sunny Florida before long where he'll have many more people around and activities. Of course, everything depends on how he feels and his success with the prosthesis. I must say, though, his mood has lightened somewhat and I think it can be attributed to the increased anti-depressant.
We'll meet an aide early Thursday morning who has been recommended by my father's friend's aide. She knows my father well and assured me that the woman is very capable and kind. This is a whole new world. I'm actually amazed that my father is as accepting as he is of what is to be. Despite what has befallen him, he continues to be interested in people and the world around him. I think that once he's home, he will adapt and his natural optimism will float back up to the surface. My prayers are flying up for success with that leg!
Love, Evey
- December 5 — From Evey
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We're trying to keep all the balls in the air! My father is working with the prosthesis even though it's still not fitting properly. We hope for a better fit towards the end of the week. Alan and I spent hours at the house today figuring out how to rearrange things and we were able to have the carpet on the steps and in the den pulled up. We expect to get an electric chair rail from someone in Cousin Audrey's congregation - what a break! So things are falling into place and my father seems, if not optimistic, at least looking ahead with interest.
Love, Evey
- December 7 — From Evey
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Long day today, longer one tomorrow: we met the prospective aide this morning. Her name is Shaida and she seems kind and friendly and has experience, although not with an amputee. We're not sure if Dec. 14th will be the discharge date yet, but whenever it is, Sita, who recommended Shaida, will spend that day helping get organized at home.
We met with a social worker this afternoon to get some very general information about resources when my father is home. We'll get much more specific information from my father's social worker and from the person who helps coordinate the adjustment to home.
The actual date depends on the prosthesis fit. My father really hasn't been able to really use it yet because it's so uncomfortable. He has to be able to concentrate on walking without being distracted by the fit. (Let's hope.)
Early tomorrow I'm meeting a cleaning service at the house to give it a good scouring and Saturday Audrey will bring the stair-lift in her van and Alan will meet her at the house.
My father is looking forward to going home, as you can imagine. I just hope everything falls into place and that the general malaise he feels disappears once he's back in his own home.
Love, Evey
- December 8 — From Evey
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Not a great day today. My father told me by phone that he didn't have the strength to get through the morning therapy session and had to quit early. He was going to skip the afternoon session entirely. I spent the morning and part of the afternoon at his house with the cleaning service and when I walked into his room mid-afternoon, he was sleeping. I told the supervising nurse that I was concerned. When he woke up, she checked his blood pressure, temp, chest, etc. Everything was normal but he just didn't feel well. He's taking an antibiotic for bronchitis, but if it's viral, the med. won't help. He's also using a nebulizer. They started cough med. again tonight. Maybe that will help.
He was so weak today that he needed a lot of help getting from the bed to the chair and back. He's been able to transfer pretty much by himself. I sure hope he feels better tomorrow.
My father's friend Sidney came with Thomas for a visit. I can't tell if seeing his friends gives him a lift or not. Maybe when he's home.
Marshall came about 5 pm with the new cup. He spent quite a while adjusting it and it seems to fit well. Although there's no therapy on the weekends, I want my father to wear the prosthesis even if we just go around in the wheelchair.
Today was a real struggle for him. At one point he said,"This is what I'm reduced to." It's very tough to see him like this and I hope today was an aberration.
Love, Evey
- — From December 10
- Alan
Today was a slightly more upbeat day than yesterday.
The downside, which still overshadows everything else, is our father is still noticeably weaker than he was last weekend and I don't know how he can get much stronger unless he starts eating considerably more. We can't really tell whether he's still weak because of the hospitalization and not eating or whether there's some other factor at work.
The upside today was two stints by the piano. In the morning, my friend Cy came by and we went into the room with a piano and Cy played for a while. He also tried to teach our father some origami (Cy's an origami expert).
In the afternoon, Judy came and we again went by the piano. I took some videos this time (I didn't have my camera with me when Cy was there) and will post them to YouTube when I get a chance, either tonight or sometime tomorrow. We hope the next time Judy plays it will be using Andrew's keyboard at our father's house, and maybe in the not-too-distant future he'll join in on the violin.
- December 11 — From Evey
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Things are not looking great. My father said today he would spend the days sleeping if left to himself. He just doesn't feel well and has no kuyach. He managed to get through the two therapy sessions today in some fashion, but had to get into bed and go to sleep after the second. His friend, Estelle Gottesman, came to see him late this afternoon but he didn't want to get up and into the chair. But I enjoyed Estelle's visit and I'm sure my father did too, although he still doesn't like anyone to see him as he is now. I don't mean without his leg, I mean being so helpless and lethargic.
I expect he will go home this Thursday, although I've been told that the final decision hasn't yet been made. I'll push to have him discharged because the rehab environment isn't doing him any good at this point. I try to make him laugh or at least smile every day at something but it's getting harder and harder. I hope that being in his own home will revive his spirits somewhat and that perhaps his body with follow.
Love, Evey
PS - I asked for the "read receipt" because I understand some of you have stopped receiving my messages and it's the easiest way to find out who.
- December 12 — From Evey
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We're planning on bringing my father home on Thursday but will find out definitely tomorrow. I'm meeting a "stair man" at the house tomorrow morning. The stair-lift we were given can't be installed the way it is and the cost of re-fitting and installing it was almost as expensive as buying a new one. We found a company that rents them and that makes the most sense. I found a wheelchair that will fit through all the doors and a portable ramp to get us in and out of the house.
My father seemed a little more positive today though just as tired. He wants to see a neuro-opthalmologist ( I took this as a good sign! ) because his vision is not clear and the problem isn't with his prescription. He also said he needs a good examination because something must be wrong - he shouldn't be feeling like this.
I'll tell you one thing - rehab is only good if you need a week or two of a "halfway house" between hospital and home. It's not for anyone who may need continued medical care or a diagnosis. No matter how often I ask and even prod the staff, nothing really happens. It's frustrating and upsetting. Here my father is in a top facility and it's like no-man's-land as far as real medical attention is concerned. I guess that will have to wait until he's home - and then we'll cross that bridge.
Love, Evey
- December 13 — From Evey
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Tomorrow's the day! I sure hope the house acts as an elixir, a panacea and a magic potion all rolled into one. I'll let you know.
Love, Evey
- December 14 — From Evey
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The best thing I can say about today is that my father is in his own home. There has been a marked deterioration in him since last Thursday. The staff at rehab was no help. Tomorrow the home care nurse is coming to assess him and we're taking him to Dr. Klein to try to get a handle on what's happening to him. The aide is with him and thank God Alan is sleeping there tonight. It is so hard to see my vital father like this. He is feeling miserable when he's awake and really just wants to sleep all the time. I can only hope that Dr. Klein will be able to help us make him comfortable.
- December 15 — From Alan
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We have a little more hope today.
The nurse from home care came this morning; they'll send a home health aid 3 hours per day, 5 days a week, which will be in addition to the woman we have full time. They'll also provide physical and occupational therapy, with the physical therapist coming tomorrow about noon.
But the hope comes from our visit to our father's physician, who looked at the list of medications and decided he had been overmedicated at the Rehab Center. In particular, he's phasing our father off Effexor, an antidepressant with side effects including most of the problems he's had. (I don't really think he needs an antidepressant; what will get him undepressed will be regaining his strength and getting some use of his prosthesis and a measure of independence again.)
- December 18 — From Evey
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I have nothing good to report. My father is getting weaker and just wants to sleep all the time. The home care nurse came today and said he may be anemic; his "vital signs" are okay. Tomorrow the lab. tech. will come to draw blood. I spoke to Dr. Klein and he added to the blood tests that will be done. The phys. ther. will be there in the morning but I don't know how much my father will be able to do. He would not put the leg on today - he said he was too tired. He did do some other exercises on the bed. He's not eating much - we have to coax him. The stair lift was installed this morning. It is actually bolted into the steps but even this is not without problems: my father has to be lifted from the wheelchair onto the lift seat and he can't help raise himself at all now. Shaida was able to get him onto the seat at the top of the stairs but, later when he was ready to go up, the two steps up and the landing presented a challenge because there's so little room there. Shaida managed, but I'll try to figure something out tomorrow so it's not so difficult.
My father seemed a little sharper mentally today when he was awake but he is painfully thin. I don't want to push him to do anything. He still knows what he can do and tries to do it. He's still amazing but it breaks my heart to see him like this.
Love, Evey
- December 19 — From Evey
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Another day. The PT came this morning and my father was back in bed. The therapist is a bear of a man and he got my father moving. We even got him to wear the prosthesis. Then it was back to bed. The lab tech came to draw blood. Marshall came to take the prosthesis to make the mold for the final cup. Tomorrow the RN will be back to check and Thursday the PT will be back and the social worker will pay us a visit. This afternoon Shaida and I took my father out for a walk up and down the block. He didn't protest. He seems to be only in the present now, not the past, not the future; he doesn't talk much except to respond. He seems accepting of his situation which I find upsetting. I hope some changes in the meds bring some of my father's zest back even if it's laced with anger.
- December 20 — From Evey
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Nothing new. Time will tell.
- December 21 — From Evey
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I'm not sure what to say tonight. There has been a great deterioration in my father since we brought him home a week ago. He is not really here, except when we ask him a specific question. He answers in a couple of words and then goes off into words that don't make sense. He's only awake for a few minutes at a time, but today after I left, Alan played my father's violin for him and Alan said he hummed along. The PT came this morning and my father did his exercises. I was amazed that he was able to pull himself back from wherever he is to focus. The social worker came today also. She didn't rush through her visit and I found her to be the most helpful and specific of all the medical/support people we've met during the last four months. Rabbi Moskowitz came to see my father today as well, and then Alan and I spent time talking with her.
My father's now finished with the anti-depressant so we should know in a few days if his current condition is the result of that medication.
Love, Evey
- December 22 — From Evey
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My father continues to spiral down. I called hospice today.
- December 24 — From Evey
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To all of you who knew and loved my irrepressible father, Solomon Stein: He is now re-united with my mother. I know his soul is at peace and once again joyful, as he was in life. I want to thank each and every one of you for your caring words during these past four months. You should know that they gave me courage and strength each and every day. I will be forever grateful.
Love, Evey