Wednesday, August 27, 2008

Auschwitz and Alzheimer's

Friday morning at 9:00 a.m., Saul called Lion's Gate to make sure we could visit his mother Saturday afternoon. He reached an answering machine and left a message that he would like a call back. By noon, we were beginning to get upset that no one had called us back and he tried again. This time, he reached a woman who claimed to be manning the desk for someone else and who didn't know much. She couldn't find any record of his mother at Lion's Gate. By now, we were both freaked out and he called his sister on her cell phone. She said she would have to call him back because she had just arrived in Nashville to return her daughter to college. He insisted that she tell him their mother's whereabouts before hanging up and she gave him a room number at Lion's Gate. After a third call back to Lion's Gate we were told that his mother was in an Alzheimer's unit in a place called Safe Haven and could not be reached by phone. We were told that we would be allowed to visit her the following day. At first, we were not sure if Safe Haven was even on the same grounds as the assisted living apartments in Lion's Gate, but eventually were more assured when we were given directions that indicated that both facilities were in the same place. Given the uncertainty of the situation, our lack of information from his sister, the failure of the institution to respond to our inquiries quickly, and the unfortunate choice of the name "Safe Haven," we were conjuring up images of padded cells.

My own mom was extremely ill on Friday and felt badly that she was not up to joining us for Shabbat dinner when we celebrated Beth's birthday with the coconut cake she had requested. Dinner was heavy on carbs, the better to deal with stress and anxiety--home-made challah, potato leek soup, Israeli salad, wild salmon burgers, warm potato salad and corn on the cob.

Ken and Randi came over early Saturday morning to stay with Mom, and Adele came and relieved them at noon. After a brilliant sermon by Rabbi Addison (based on a sermon by Rabbi Mitchell Wohlberg) which connected the lessons of Parashat Ekev with events which took place at the Beijing Olympics, we nervously headed off with our friend Larry to Safe Haven, about an hour's drive away.

Saturday was a beautiful, sunny day. The Lion's Gate complex which is only two or three years old, is beautifully maintained. We were sent around the parking lot to another entrance where we waited in a lovely reception area for about two or three minutes for a receptionist to appear and admit us as visitors. After signing in and being given visitor's stickers to put on our clothes, we were sent down a long hallway to knock at a door. When no one answered, the receptionist came and put a pass card into a slot and opened the door for us. We quickly scanned the u-shaped seating in front of a large television console and spotted his mother dozing in an easy chair at the end among about a dozen other residents obviously in various stages of Alzheimer's. We went over to her and Saul nervously put his hand gently on her shoulder to wake her. The three of us were incredibly relieved when after only a second or two of confusion she broke into a huge smile and was obviously delighted and surprised to see us there. She politely introduced us to whomever among the group was awake and cognizant enough to be aware of our presence. She remembered that Larry was our good friend even though she did not remember his name.

We asked to see her room which was only a few feet from where she sat in the chair. She ushered us into a positively immaculate small room with a double bed, easy chair, and chest of drawers with some old family photos on top. There were no photos of Sami and Izzy, but in the course of our hour-long conversation it was apparent that she remembered everything about them and the time she had spent living with them at Jess and Alex's home. On one wall was what served as a kitchenette--a built-in college dorm-sized refrigerator, a tiny sink and a few cabinets and drawers, mostly stocked with bottled water. Her private bathroom was also spotlessly clean. Her toilet seat had cracked but she explained that someone would be coming to fix it soon. She opened a small closet door and showed us her clothes (about two dozen items) hung neatly on the bar. As we sat and talked in her room for a few moments, we put the halvah we had brought into her refrigerator. She used to hoard potato chips and eat them whenever she wanted a snack, so we brought her a bag of those, too. We photographed her room and the schedule of activities tacked on the wall, which included manicures!

She herself has never looked better. Her hair had been recently dyed her preferred shade of blonde and was beautifully coiffed. In the last few months that she had been living alone, she had just about starved herself down to skin and bones. Now she has put on a few pounds and appears to be a healthy weight. She was neatly dressed in attractive clothing.

We were very pleasantly surprised when she invited us to rejoin the group in the social area outside her room. All her life we had known her to be anti-social and reclusive, so fearful of strangers that she had taped her window shades to the windows at the edges to prevent anyone from peeking into her house. Now, she animatedly described to us the wonderful staff people that take care of her. As we exited her room, we were introduced to a few of the staff who invited us to take a walk with her in the square atrium garden off the social room. One of the women on staff put a pass card into a slot by the door to open it and advised us that the doors would allow us to re-enter without a pass. We walked around the small square atrium and admired the flowers in bloom and peered into windows at the corners which revealed a craft area with a doll house, and another dining area and play area with a baby's crib. We pulled some chairs together and sat under a shaded overhang and chatted about her life this past month. She was as relaxed and happy as we have ever seen her and not so much at a loss for words as she had started to become in the last two years. She told us that a rabbi lives on the premises and is delighted with her ability to read Hebrew when he conducts services. She said she is satisfied with the food and that she is very well fed. While we were sitting in the atrium, a staff member brought her a small plate that contained chunks of fresh watermelon and cantaloupe and cheese. She characteristically offered it to us first and would not partake herself until we insisted we would not eat it. She ate a bit, but did not finish it.

After a while, we told her we would try to visit next weekend again with Ari, Sami and Izzy. Ari has a wedding in Philadelphia this week for his friend Matt. Jessica and Alex have two different social engagements this weekend and were unable to get a babysitter because of Labor Day. We checked with the receptionist about visiting with small children and she said there would be no problem. I also asked if we could ever take Saul's mother out of the facility for a family function or wedding. At first I was told never, but when pressed, the receptionist told me that it could be arranged with his sister's permission because she has the power of attorney. We would never remove her from the facility because obviously she is thriving there and removing her, even for a family simcha, would cause her anxiety. I asked the question because I was curious about our limitations. On the ride home we were extremely tired from the stress of the previous day and felt as if a great weight had been lifted off of our shoulders.

Saul's mother had been incarcerated at Auschwitz as a girl (an unbelievably horrific experience that she spoke about on only one rare occasion) and had lost all of her immediate family, except for one sister, in Auschwitz. She had told me in recent years that she was not really afraid to die, but was afraid to suffer. To my mind, she has gotten her wish to die without suffering. Eventually, the Alzheimer's will remove all traces of the horrible memories that haunt her and she will gradually fade away in a clean and caring environment. It will be for future generations to never forget the horrors of the Holocaust.

We arrived home about 4:30 p.m. to find Adele extremely distressed with Mom's condition during the day. She had been very weak and had to be cajoled to eat and drink. When we returned, we were able to convince her to come to the kitchen for a bowl of soup using her cane. As I went to warm her soup, Adele turned her back for a moment and Mom slipped and fell to the kitchen floor banging her head. Saul was in the bathroom at the time. Adele and I helped lift her onto the kitchen chair. She was very distressed and did not want to eat even though she said that nothing hurt. She wanted to return to her bed but was too weak to walk. She had a cold sweat and became cold and clammy. Saul went into the attic and brought down an old folding wheel chair and we wheeled her back to her room and tucked her in. Then, we debated about calling an ambulance. I called the 24-hour number for Abington Home Health Care and within 5-minutes I was called back by a nurse named Trish who asked pertinent questions about the situation and finally recommended that we call the ambulance. She recommended that we check Mom's blood sugar, which had been a perfect 113 that morning, and it was only 77. I requested from 911 that they not use their sirens when responding because the experience had freaked Mom out so when we had taken her to the hospital two weeks earlier. The same people arrived as last time and were extremely sympathetic, efficient and polite. Again, I rode in the front of the ambulance and Adele and Saul drove to the hospital separately.

Mom was extremely distressed to be at the hospital again. In the course of doing the usual testing, she was catheterized to get a sterile urine sample. I feared that this would cause a urinary tract infection and it has. Saturday night, however, we were told that all her tests were negative, all her numbers normal, and that probably she was clinically depressed. They sent her home. By 11 p.m., we wheeled her into her room. Saul and I both had a good night's sleep knowing his mother was happy and that my mother, having just been completely checked out, would not die in her sleep.

Sunday morning I was angry. Mom was able to get herself into the kitchen for breakfast and while she was eating a two-egg cheese omelet I made, I stripped her bed, put all the bedclothes in the washer, and piled her pillows on her easy chair. I was worried that she would develop pneumonia if she laid in bed any longer and convinced her that she should sit up in a comfortable chair in the living room rather than use a bed in another room. I took my time finishing making up her bed so that she would not be able to go back to it. I spoke with Adele on the phone and told her what I had done and told her that I was going to clean up the rest of the mess in Mom's room. Adele said she would come and help. I spent the rest of the afternoon gathering huge piles of paper from all over Mom's room and desk, dumping it all on the kitchen table to be organized into important paper and junk mail. Adele sat down after we finally finished cleaning the room and making the bed to begin going through the papers. We were about to go out for dinner together when we were unexpectedly visited by Ken, Randi, Haley and Eric, as well as Haley and Eric's new miniature dachshund, Ziggy. Eric had proposed to Haley that morning and had given her a diamond ring which she proudly displayed. Mom managed to rally to the occasion and we took some nice photos before they left. Haley and Eric have been together for a few years now and we all like him very much.

We waited as Mom finished her bowl of soup and we saw her off to bed before leaving for dinner at King Buffet. Her cell phone has a speed dial with numbers indicated by a sticker on the back to reach all of us in case of emergency.

Adele and I went through some of the pile of papers on the table when we returned. We looked in on Mom and were distressed that she did not appear strong enough to get herself to the bathroom. She whined to leave her alone when we tried to get her to sip some Ensure and while we put a waterproof pad under her from the hospital just in case.

Monday morning I awoke at six to get breakfast ready for Saul before he left for school at seven. I took a glass of orange juice into Mom's room at 6:45 a.m. but she appeared to be very comfortably sleeping and I decided not to wake her. I went in again at 8:15 and woke her. She drank the orange juice and a few sips of Ensure and begged me to let her sleep some more. I told her I would wake her in an hour. At 10:00, she wanted to sleep just a little more. By then, she had been sleepiing for 15 hours. I did not give her her morning medication. At 11:00, Eric her nurse arrived and we stood at the front door discussing her condition and my concerns. She called to us from her room and, when he checked her out, all her numbers were fine. He changed her heart monitor battery and refitted the leads. She sat in her chair and we talked for a while and then I left her watching television to work in my home office. She would only take an Ensure and a yogurt for lunch. Margie, her aide, came about 2 p.m. and sponge-bathed her and changed her clothes. She still will not let any of us wash her hair. I had put in a call to her new doctor about discontinuing some or all of her medication to see if that would improve her condition and was told that her doctor was away and would not be returning until the day of Mom's appointment on September 3. The assistant told me to contact her previous doctor about her medication. Her previous doctor could not be reached because of a power failure and Adele physically went over to his office. He called me while she was with him and gave me permission to discontinue two of Mom's blood sugar medications, Glyburide and Metformin. He also said that Mom was probably clinically depressed and said that any medication prescribed for that would take at least two weeks to take effect. He suggested I return her to the ER if anything really serious occurred. He suggested to Adele, also his patient, that she take a low dose of Xanax.

Saul had a very good day at school. Everything went smoothly there, at least.

At dinner time, I prepared a two-egg omelet, determined that I would get some protein into Mom when I awoke her from her nap. Saul had checked on her earlier and had commented that she was sleeping in a position unusual for her. When I went in with the omelet, I was unable to awaken her even with pushing and prodding. She was feverish to the touch. Stricken, I ran to get Saul and together, the two of us worked at getting her awake. She finally opened her eyes and spoke to us and was fairly lucid. We called Ken and explained what had happened. He put in an emergency call to the new doctor. She called back within a few minutes and asked many questions about our situation. When she heard that Mom had been trying to walk but was too weak, she felt that it was not clinical depression and told us she would be notifying the ER to expect Mom and that she would order some tests other than the usual ones. Mom became absolutely hysterical when she realized we were taking her back to the hospital. Ken and Randi came immediately and the three of us wheeled her to his car and drove her to the hospital around 7:00 p.m. The usual tests were done which she again passed with flying colors, but the ER staff said she was going to be admitted for sure for tests requested by her new doctor.

Randi volunteered to sleep over with her in her hospital room and we assured her that she would not be left alone. Mom was relieved but still freaked out and wanting to go home. We promised her that this would be the last time she would have to submit to hospital tests. While I was making her eggs, I had suddenly remembered that Mom had a sodium deficiency a few years ago that had caused her to take to her bed and not be able to get up. We had rushed her to the hospital against her wishes back then. I remembered that on Saturday night, the ER doctor had said that her sodium level was a little low, but nothing drastic. Last night, her levels were even lower when I inquired about them.

Tuesday, Ken picked me up at noon so that I could relieve Randi at the hospital. Mom could not say enough about how wonderful she was to have there to advocate for her and to help her. Doctors and nurses came in and out all day to poke and prod Mom and ask us all lots of questions. The neurologist said there were some issues that possibly could be treated in his office, but that the problem at hand was not neurological. The endocrinologist came in at 5 p.m. and gave us the most hope saying he was ordering testing to try to find out if the low sodium level was being caused by a malfunction of an adrenol gland and that, in some cases, there is medication for the problem. Adele relieved Saul and me around 6:30 p.m. and spent the night with Mom sleeping on a cot. She left at 6:00 a.m. and I relieved her at 7:15 a.m. having Saul drop me off before heading to school.

Mom was perkier and ate well all day, but can no longer stand up without support. She has not been out of bed since Monday. In the afternoon, she asked to sit in a chair and was able to do so for two hours. Physical therapy was ordered, but was not scheduled in time yesterday and I fear that Mom is so weak now that she will not be able to get out of bed when they do come today. I began writing this in the wee hours of the morning yesterday (Wednesday), but did not have time to finish before leaving for the hospital to relieve Adele. It is now almost 1 a.m. on Thursday, and I had been asleep since I arrived home at 7:30 p.m. Saul met me at hospital in the early afternoon and we had lunch in the cafeteria. He has spent the last two afternoons catching up with work on his computer in a lunchroom on Mom's floor. When Adele relieved us yesterday at 6 p.m. we stopped and had dinner at The Drafting Room before heading home. As soon as I got in bed, I fell asleep sitting up with the television remote in my hand. I don't even remember closing my eyes. The most frustrating part of all this is that Mom has now been tested with every high tech machine that the hospital has available and according to their standards, she is in perfect health except for her occasional irregular heatbeat. Her sodium level is so little below normal that no one believes it is causing a problem. The endocrinologist did not appear again yesterday.

I will be going back to the hospital again this morning to relieve Adele and I dearly hope, as Mom does, that they will just send her home now to be comfortable in her own bed. We all feel that we gave one more shot at trying to find a solution and have exhausted all the medical solutions we have available. Perhaps this is just a situation where medical science does not have all the answers and no one is willing to admit to us that people sometimes just know when their end is in sight as loathe as they are to leave this existence. According to their tests, Mom is a practically perfect 86-year-old specimen. If we had not been living together, Mom probably would have taken to her bed and died a number of times in the past few years. If we had not been there to prod her out of her sleep on Monday, she would have died. It is difficult to know from minute to minute how to handle this situation and to act in a way that will not leave us feeling guilty and questioning our actions in the future. It is no wonder that our society has created institutions where the responsibility for these stressful and unpleasant decisions can be made by others far away from our consciousness.

Izzy was supposed to be here this week, but when it was time to say goodbye to her parents, she had a meltdown. I suspected this would happen and wasn't surprised. I remember how differently time progressed when I was a child. Leaving her parents again for a week must have loomed before her like an entire summer of their absence. Alex and Jess have been alternating and taking her to work with them until day care begins next week. As things have turned out, I would say it was for the best, although I would have loved to have just one more week of summer.


Unknown said...

Great Pictures! Can you send them to me so i can save them to my computer? Thanks for posting!

p.s. It's Erik, not Eric :-)

Ari said...

GG Sima looks really great, and I'm glad to get the extended version of the story that I didn't get on the phone on Saturday.

I think the hair color looks good, but I'm surprised she let them do it so dark--she always goes for the brightest platinum blond they have.

Anonymous said...

Hi everyone,
I was really happy to read that Saul's Mom is doing well and the pictures prove it. I am glad you got to spend time with her and the visit went well. I also hope that Marilyn's Mom will get stronger. I know that you are giving her the best care possible. It is so nice to read what is going on in your lives and makes me feel a part of the family.
Sylvia from Israel