On March 21, 2012 I couldn’t get Wilson out of bed, nor straighten his right leg. I dialed 911 and had him raced to the hospital where they discovered a massive buildup of fluid on his brain. He had surgery on Friday to install a shunt, with a drain snaked down to his abdomen. He emerged from surgery with a gleaming bald head! (They gave me his hair, which was pretty thrilling).
He is doing well, and will be in rehab for a couple of weeks. He had been declining the past few months, walking much slower, and getting more confused. I had taken him to all his doctors, but surprisingly no one thought he needed a ct scan! I had started taking him to physical therapy again a few weeks ago, not realizing this was neurological. I’m so glad I called 911. Hopefully some of this is reversible, and he will be walking better and be less confused in the future.
APRIL 4, 2012: A few days after the surgery, Wilson declined for three days, sleeping all the time. I was frantic. The surgeon finally adjusted the shunt, and he woke up again the next day. He has been moved to rehab, and with physical therapy he is learning to walk again. Each day he is a little better. I hope to bring him home in about a week and a half. Thanks to everyone who sent good wishes and donations!
April 14, 2012Wilson is still in rehab. He walks with a walker a little each day, but improvement has been slow. I plan to attend a meeting with the case manager, doctors and therapists on Tuesday to devise a plan. It is likely that his care will be more complicated in the future, as he cannot stand or walk on his own. He will be in the hospital a little longer than I originally thought. Thanks to all who have been writing and sending donations!
April 24, 2012 While in physical therapy yesterday, Wilson had an event. He stopped breathing, and his eyes were wide but not seeing. Shouting his name, there was not response. We called for Emergency Services, and he’d started breathing again by the time they got there. Utterly frightening. He is in the ICU again since last night. Today he is sitting up and eating after lots of tests which all came back “normal”…whatever that is. I am trying to speak to the doctor in order to ask for a neurological consult. It’s like pulling teeth. Obviously, he is not coming home any day soon. I am going to go for CPR training in the event something like this happens again once he is home. I need to know more so I won’t be scared! We’re both getting pretty tired of being in the hospital. But we are trying to maintain an upbeat, cheery attitude.
April 28, 2012 Wilson was suddenly moved to a nursing facility yesterday for a week. It is terrible to be old and poor in America! I hope to get the house ready, and all the equipment we’ll need delivered by the middle of the week, and break him out of that joint. The hospital gave me such short notice I was stunned, as there was no food in the house, and I’ve been having difficulty securing our caregiver. I’ve solved the food shortage, but the other issues need to be resolved before I can bring him home. Thanks everyone for all the donations and encouragement.
May 3, 2012 He’s been in the Tunnell Center for a week now. It has been slow getting all the staff to understand Wilson’s true condition, but after being there with him for many hours every day, I’m finally feeling better about the place. The staff are all really kind and patient with him, and we’re working on getting him up and walking. At first, I thought I’d be bringing him home within a week, but the doctor is in the process of lowering his meds even further, and advised me it would be best if he did that under medical supervision. I’m so glad he is working on that, as it might result in a much perkier Wilson! I think he is being cared for better than I expected. Plus, the wife & daughter of his roommate are terrific dames, and promise to look out for him whenever I’m not there, should he need some attention. (they arrive early in the morning, and leave even later than I do) So for the time being, things are going smoothly.
May 15, 2012 One of Wilson’s collectors saw on Facebook that I’d mentioned not being able to go to NYC to see my ex’s retrospective at the Guggenheim and called, offering to send me with his miles. I raced to the facility to talk to the doctor about it, and he encouraged me to go! So I made it out of here in 48 hours and had a glorious 5 days in the city, seeing my old friends and the exhibition twice. I haven’t had such an incredibly fun break in years. I will be forever grateful to Vince Cottone for being so thoughtful and generous. As well as my friends Diane Hersey and David Cudaback, for opening their home to me for my stay. When I returned home, I found Wilson up and cheery. I’d called while I was away, but really had no idea how much better he was doing. He’s cooperative and getting up earlier, willing to try walking with the PT staff. They plan to keep him another few weeks while the new medication kicks in, and he continues to work with the therapists. While he will not be able to recover the brain cells he lost, I do think he may be able to regain his strength and his interest in drawing again. I am hoping. He also tried to talk several times, which is something new. He had only been answering questions for the past 5 months, really. He is difficult to understand, as he can’t find the right words, but at least now he seems to have something to say, and I can try to help figure it out.
May 29, 2012 The past week has been stressful, after I noticed his right leg was swollen, red, and hot. I alerted the staff, the doctor, and kept at it for a whole WEEK til they finally did an ultrasound and found a clot. DVT. I took photos of his legs the 2nd day to show the Dr, but no one seemed to think this was an emergency but me! He has been diagnosed, finally, and is receiving treatment. In the mean time, he’s been in bed with his legs elevated all these days, slowing down the progress of his Physical Therapy.
June 8, 2012 Today the doctor said they’ll do new scans on his leg next Monday or Tuesday. If the clot is dissolving, they will allow him to get up and try to do some walking, etc. They will discharge him on the following Monday or Tuesday, hopefully, as he can continue his physical therapy at home. He has been confined to bed rest all this time, but his spirits have been remarkably good. I have hired two new caregivers and hope they will be patient enough to wait for their patient to get home. I don’t want to have to go through interviewing another whole list of them all over again.
June 16, 2012 The scan showed his blood clot has not diminished. After wrangling with the doctor for over half an hour on the phone, I finally got him to agree to obtaining a second opinion from a vascular surgeon from St Mary’s. This will take place on June 26th, along with a battery of other tests. It is painful to have to wait so long, but there is no other choice. I have to watch them every second, as an attendant happened to tell me that she had got him up for a shower a week ago, and again two days ago. He is not to be moved! I reported it to the head nurse as well as the doctor…then I placed a colorful sign on the wall, which says”Steven is confined to bed rest. Please do not get him up”.
A funny thing did happen the other day: I had my back to Wilson, getting something out of my bag. “Your machine is getting bigger” he stated. I turned around and asked him to repeat it. “Your book is getting bigger” he corrected. He was smirking.(his aphasia often causes baffling statements).So I asked, “Are you talking about my BUTT?” “YES!” he laughed. He may not be able to say things correctly, but he knows what he MEANS. I admitted I’ve put on a few pounds the past 3 months, snacking during my lonely evenings at home. I asked if he LIKES my bigger butt, and he answered with great enthusiasm. “YES, I DO!” It’s these little moments that keep me going….even though he is frequently confused, he is sensitive to many things. And his sense of humor is still there!
July 1, 2012 After a month of being confined to bed rest, Wilson was finally allowed to get up and do a bit of walking last Friday. He got up again today and walked several steps farther! I am so thrilled by this, but cautious as well, since he will not be having another ultrasound until July 11th. His leg hurts when he is upright, and begins to swell, so he is to be up only under an hour at this point. I am hoping the new scans will show the clot is beginning to dissolve. I also hope to bring him home by his birthday, which is July 25th. Fingers crossed!
July 13, 2012 The scan showed some blood flow in his vein, which is a good sign. He is doing a bit of physical therapy, walking around the ward a little more each day. And sitting up for an hour or so. But he remains mostly bedridden, so I am working madly to get the apartment ready for his homecoming at the end of the month. I know he will improve once he is home where I can get him walking more each day. He will be so much happier, as he is growing really tired of being in that rather depressing place!
July23, 2012 Wilson’s birthday is on the 25th, Wednesday. If you write some comments to him, I will print them out and read them to him.
August 3, 2012 WILSON’S HOME! It’s now the 9th. I have hired 3 caregivers to trade off days. He has met all three, and on the first two days he was cheerful and cooperative. However, starting yesterday he has been a terror. He’s crabby and unwilling to let anyone but me clean or change him, give him his meds, or food. It makes the caregivers feel terrible (when I got back from an hour’s errand yesterday, I found him way down in the bed, legs hanging off, and the caregiver in the kitchen, nearly in tears.) He scared her to death with waving his arms around, yelling at her. I am hoping he will gradually adjust to this huge change. He was in the hospitals for 4 months, and is having trouble with strangers in the house. I pointed out to him that he could choose one of two: one stranger in the house, or dozens of them back at the nursing facility. It is difficult so far with new people, plus the visiting nurse and two therapists invading his home. Hopefully this will all become a routine, and he’ll stop acting out. It’s a lot of work doing everything myself, so I look forward to him accepting some help soon! I’m just glad he will listen to me, and lets me take care of him, at least. I can still get him to cooperate if I’m the only one in the room.
September 21,2012 I’m sorry I haven’t written in so long. It has been a busy time, to say the least. We have settled in to what you might view as a routine, although he still does not allow anyone else to do anything for him but me. However, at least he’s not snotty EVERY day any more! The visiting nurse has managed to draw his blood each week without any further drama, and sometimes he cooperates with the Physical Therapist. Last week we managed to get him out to the back yard to sit in the sun and have a cup of tea. Then he allowed us to help him go down the 5 steps in the front to the sidewalk, and walk to the corner. A banner day. I have been able to take him to the back yard a few more times on my own, although he won’t stay there for long. The rest of the time I have him walk with me in a loop around the apartment, and pedal in the living room while watching a movie. With all this, however, he’s still not as strong as I’d like him to be. On Tuesday he has an appointment with his doctor about 4 blocks away, at the Castro Mission Clinic. I’m still trying to figure out how to get him there, as he has trouble getting in & out of my car. The seat doesn’t go back very far, and the door doesn’t open very wide. I’ll give it a try this weekend. Otherwise, I’ll have to find someone to help me walk him there, with the wheelchair as backup. Let’s hope it’s a warm sunny day!
Otherwise, things are much the same. Except I notice he has lost a few more subtle abilities. When I turn him around during our “loop”, he asks “Where are we going?” “Back to the living room”, I say, and he now looks puzzled by this. As though he has no idea where that is. Or what that is. This is new in the past week. These little losses break my heart, as I have learned they cannot be retrieved.
Today, when I finished bathing him, he said “I love this”. A surprise, since it took about 15 minutes of coaxing to get him in there! I kissed his forehead and told him how glad I was to hear it. Any little pleasures are few and far between. He does sometimes announce how grateful he is, though. The other night he said “Thank you for this, Lorraine”. We were watching a movie. I asked him if he was thanking me for all I do, and he smiled and said “yes….all you do”. Little moments like that bring me such joy……
