Maggie

MAGDALENA’S MOTHER STORY

"All that is true, all that is noble, all that is just and pure, all that is lovable and gracious, whatever is excellent and admirable - fill all your thoughts with these things."

I can not think of other way for starting this story, than Myra's words: "Do not entertain a moment of guilt for what more you imagine you might have done for your mother. I believe the "enemy of our souls" takes delight in our mental torments of such thoughts. He will see to it that we play this guilt over and over in our minds like an old broken phonograph record. " Fill your thoughts with all of the good memories about your mother and the good time you had together! Think on these things!

My mother was an incredible person. She was the strength and support for me. She was always there for me to turn to in time of trouble. She was a very true, very loyal friend and would do anything to help me when I was in need. She was always there to listen and could always comfort me just by her steadiness, strength and love. My mother has been my best friend, my confidant, and my support for my whole life, but since my parents divorced in 1959 we became inseparable. As I made my own life for myself by going away from Bucharest (Romania) to New York and eventually marrying, she was always there cheering me on and providing support through the hard times. She managed to come to visit me here in New York three times. The last time was the unlucky one. I remember it was the summer of 1995. The month of August was very hot. Two or three weeks we had temperatures over 90 degrees. Trying to beat the heat we went to a Catskill Resort for a week, but even there the humidity was bad. By the next month, my mother started to feel a bad pain in her hands and knees. By the end of October she barely was able to bend her knees. I remember we had tickets to Metropolitan Opera and we got there by train, and climbing the stairs was a big effort for her. Other symptoms that I remember were that in the mornings, after the breakfast she was having a sort of dizziness, so she had to take a rest (she was blaming the milk she was eating with the cereals), when she was taking shower, she couldn't stay longer because she was getting dizzy and she couldn't breathe and also at nights she was sweating. She was trying all kind of medicines like Advil, Naproxen, Relafen, Voltaren, Lodine (antiinflamatories drugs) but they wouldn't ease the pain and by November she couldn't even bend her knees. So we went to a doctor, who said she has a bad arthritis and put her on prednisone (40 mg for two weeks, and then reducing gradually so by the end of January she was off). Right next day after she started the prednisone, she had a spectacular improvement, she felt better, she was able to seat down without pain, so she did ok for the next two months.

In February, two weeks after she stopped the prednison, (it was a very cold winter) she started to have flu like symptoms (coughing, over 100F degrees temperature). After three days of not improving with cold and flu medications, we went to the doctor and he said she has pneumonia. So he started her on pneumonia medication (bioxin). After 10 days of no improvement he changed the medication. Another week went by and not that we couldn't see any good signs but her tongue and esophagus were caught by candida so she hardly was able to eat. So finally she checked in to the hospital, with me by her side all the time since she wasn't speaking English. She was put on IV for pneumonia right in the emergency room, while they were running all kinds of tests on her. I think the medication was too strong for her, (or she was having like a panic attack) because her heart started to beat much faster, so they have to give her some medication for the heart and to keep it under control. That night I slept on a chair by her side, not knowing what is going to happen. For the first three days I thought she is going to improve, but by the fifth day the temperature was not backing off. After more tests, by the end of the first week in the hospital the doctors came up with the diagnosis: TB. The prednison was suppressing the immune systems, so the disease surfaced. So she was isolated and she was given those 4 pills (part of the TB treatment). Only at that time she was not able to eat anymore, forget about swallowing pills, so "they" had to put her on feeding tube. It's an image I will never forget: she was so terrified and helpless, as the doctor was struggling with her to stick that hose into her nose and all the way through the esophagus. That night I stayed again by her side and thanks God I was there, because all of a sudden her hands and then the whole body started to turn blue and she almost passed out. I run desperately to alert the doctors and the nurses, so finally they took her to the intensive care unit where she was hooked to a ventilator. When I saw her in the morning strapped to the bed, tubes through her nose, through her mouth, wires and monitors, IV, it just broke my heart. She was alert and all she could do was to move her eyes. She was just moving her eyes, as she was asking me "Where I am? What is happening to me? Why you let them do this to me?" I was trying to explain things that not even doctor knew. She took all this with courage and sort of abandonment in the hands of God. So more time went by, no improvement and one-day a rheumatolog came by, he looked at her face and her hands and he popped up the magic word, that she might have scleroderma. After test where done the diagnosis was confirmed. I remember when we have been told that she had scleroderma neither of us had heard of the disease and the doctors told us little about it. I was very worried. It was just something else that we were going to get through together. The doctor who was a specialist in lung disease, told us that the only medication effective at this point for her lungs would be prednison, only they have to stabilize the TB, and only after that they can start her on prednisone again. Regardless the hate I had for the prednisone, this time I was so anxious to have her started again on prednisone. On top of every thing she had also emphysema. She had two more moments in intensive care when she almost died. They called me at home in the middle of the night. By the time I got there she was back to life. Later she told me that she saw the light at the end of the tunnel, she felt her legs getting cold up to above the knees and she was thinking that is not hard to die. They finally started her on IV with quite large dose of prednisone. From this point she started slightly to improve. After a week she was able to wean off the ventilator, so after three weeks in intensive care she was back in a regular room, still her heart on monitor. She had to spend another month in the hospital, because of all kind of complications: kidney infections, stomach inflammation. At one point, all her skin pealed off and she started to have temperature again and nobody could figure out why and they had to put her on ice. Finally they decided that must be an allergic reaction to the medication so they had to reduce some of TB medication and give her some Benadryl. By the end of the second month, they finally took off the feeding tube so she could start little by little to eat on her own. I was bringing her homemade soup and all kind of soft meals.

I had no more vacation left at that point, so I was supposed to go back to work, but in the mornings I was dropping by and in the evening I was spending more time by her side, I was pampering her, I was "mothering" her, I was nursing her, I was getting her ready for the night. Three times a day I was going to church and I was praying like I never had before. After almost two month of lying in bed she had to start physical therapy to relearn to walk. First time when she got of the bed she wasn't able to stand, but she was so determined and after a few days she took her first steps.

One-day by the end of April I came and told her " Mami, we are going home." She just couldn't believe she got to live this moment. Actually, everybody in the hospital said that it was a miracle she came alive from the intensive care unit. At this point I took three-month family leave from work so I could dedicate myself entirely to my mom. She couldn't walk on her own yet, so I was taking her to the bathroom. She was so happy to be able to go to the bathroom, because of the humiliation she had to go through not being able to do so in the hospital. At that point the medication she was taking was prednison, all kinds of inhalers, propanolol and lanoxin for the heart, carafate for the stomach, diflucan for candida, furosemide combined with pot chloride twice a week to eliminate to water, and two TB pills. She couldn't swallow all these pills, so I had to crush and fill gel caps, so she could get her medication. She started to improve and to put on weights. By the middle of May she even helped me in the kitchen to bake a cake for my birthday. We started to take short walks outside, (only I had to carry a chair with me, so she could rest each block). In July I had to go back to work, but she was able by now to stay by her self. By the end of August, she even went out by her self. Meanwhile, we where visiting regularly the lung specialist and the cardiologist, and they reduced gradually the heart medication and the prednison. By beginning September she was off prednison, and by the end of the month she started again to have joints pain, hands first, then knees, going up to shoulders and then all of a sadden she had again flu like symptoms and coughing, and burning sensation on her back. The doctor immediately recommended hospitalization, only this time they knew exactly what to do. They put her on high dose of intravenous prednison, some oxygen given through the nose, so after ten days she was checking out. The doctor told us that she has to stay on prednison for the rest of her life. Only she hated that. She always was saying that everything happen because of prednison. I will never know what would have happened, if she had never started taking it. Anyway she started to get better again. We got to spend Christmas that year and next year she got to live a happy day, the day I got married to a wonderful man. In June 1997 she was strong enough to take the trip back home to Bucharest. She left New York helping her self with a can, but after a week back home she threw that away. She was back in her own world. She had someone coming two times a week to help her with the heavy housework and shopping, but most of the things she was doing alone. She used to laugh and say; "I am strong". She started to go to see other doctors, but mainly they told her to stick with the treatment she had from New York. They added to her medication some medicine for blood circulation (trental or pentoxyfiline) some unguents (Elocom for her hands and Hirudoid for her legs) vitamin E, some other medicine she was alternating, I don't even know what it was for (like Claritin, Troxevazin, Aspacaradine). I was checking on Internet each time she was getting a new medicine. So she went on like this for the next three years. Two times a year she was having some vitamins shots and at a certain point she got to reduce the prednison to 0,5 mgr. but she had to go back to 10 mgr. She didn't manage to come again to New York. The trip would have been too long for her and also she was afraid of New York weather, too humid for her condition. But for the next three years, my husband and I traveled three times to Bucharest to spend some time with my beloved mother. She was so happy to have us around. She was quite well under the circumstances. She was able to go out, to do some light shopping, to take short walks or even to travel by buses. She was cooking for her self. She had a little help for laundry, house cleaning or heavy shopping. What I noticed in the mean time, her hands had gone from bad to worst. Her fingers began to swell and stiff. She couldn't close her fist and her fingers wouldn't straighten out all the way either. Her breathing wasn't quite well and she was getting tired after a short period of time. Quite often she was having Raynaud's flare-ups when she was getting cold, chill sensation and her hands were turning purple. Her abdomen became abnormal big and hard, (it was not fat) and she was having some bowel dysfunction, (she was blaming the prednison for this). On April 15, 2000 was my mother 75th birthday and I had such an urge to go to see her. So my husband and I boarded the plain for what was to be "my last vacation with mom." I'm so glad that we got to spend 10 days together. Even she was a little more wore out than previous summer, she still was able to go out with us. We went out for dinner a few times, we went shopping for Easter. Only one evening she had a bad flare up of Reynaud's and I also notice that her breathing was getting faster. She was only on 0.5 mgr. of prednison at that time, so I told her that she should get more and she should go for a check up. So she increased the prednison, (and she felt better again) and one week after we went back to New York, she went to her dermatologist, who told her that the prednison doesn't help her anymore and she stop the prednison and put her on methotrexate. I almost fricked out when I heard that, because no one would stop the prednison all of a sudden. I checked all over the Internet, I went to my doctor to ask him about my mother medication. So all the information indicated that she was not supposed to stop that. I was calling her every day, so after four days she resumed the prednison and went for a thoroughly check up to a hospital. She didn't stay in the hospital but she was going every morning for the tests and was coming back home in the afternoon. She was told that she did right to resume the prednison and also the doctor recommended her to stop the methotrexate, since she wasn't feeling to well (she was getting even more tired and was nauseated, and also she was accusing a chest pain). The test weren't too encouraging. I was talking to her every day on the phone so she was keeping me up to date. The blood results weren't too bad. The liver and the kidney were quite well. The stomach was abnormal large and hard but no pain, (except for the dysfunctional bowel, but she was used with that, even it was annoying). The worst part was her blood circulation and her lungs. Her pulmonary capacity was 46%; she was having interstitial pulmonary fibrosis and emphysema. She was giving me confusing information: one day she was telling me that is nothing to worry about, that she will be fine, other day she was telling me that God is getting her ready. The doctor gave her a long list of medicines (Captopril, Diltiazem and Pentoxifilin for blood circulation, Motilium to increase esophagus motility, Colchicina, Sucralfat for the stomach and some other medicines, I don't even know what they were for and they are more used in Europe, so I couldn't find information about them, like Omez, Aulin, Cytotec and her long run medication (Prednison, Vitamin E, Aspirin). For the first week she was getting the medication from the hospital, since she was formal "admitted" to the hospital, or she was having a nurse coming home with her medicines. By the beginning of June she was telling me that she feels every day that she is getting better and better.

One week after that, every thing took a turn for the worst. With someone's help she cleaned the house like Christmas would have come. On June 8th she went to church to celebrate the Ascension. She was happy that God helped her to do some offerings (she was often using to bring food for the poor). Only the weather was sort of hot for the beginning of the summer (mid 80's F). Two days after that, while she walking from kitchen to the bathroom, she felt like she was going to faint, so she said that she laid on the bed, took a few breaths and felt a little better. In the evening she had one of those Reynaud's flare-ups, with chill sensation, turning purple. She took some Tylenol and was able to rest, only next morning she woke up with a burning sensation on her hands, knees and back and also another candida overgrow that was affecting her tongue. Being Sunday her doctor couldn't be reached, so she had to wait for the next day to put a call to the doctor's office. She also called a friend of her to come to help her, since she was very weak to do things. The doctor came next evening, and she stopped all the medicines for blood circulation. (I was to find out later that she advised my mother to go to the hospital, by she didn't want to hear about this.) Next day when I called (I was calling every day, even a few times a day) it was not my mom to answer the phone, she was too weak to get up the bed. Her girlfriend, who has helped her for the last days, told me that they were waiting for some medication the doctor was supposed to send her. I spoke though to my mom. I guess she was holding things from me, she didn't want me to get worry. Anyway, I told my mom "Mami, I'm coming home to see what is going on and to take care of you." I couldn't find tickets for that day, so I booked a flight for next day and I called her again and I told her "Mami, tomorrow I leave and after tomorrow I'll be there, if you have to go to the hospital, go, don't be afraid I will find you."

On June 15, 2000, my beloved mother, quietly, left this world. She died a few hours before my plane was taking off. I cried desperately, "Mom, why you didn't wait for me?" At least She knew I was on my way. My life will never be the same. She was 75 years old and after four years of fighting with scleroderma, her life just couldn't go on. I guess She was tired of fighting because She didn't want to go through another hospital experience. I keep on asking my self "What if she would have had gone to the hospital? Would have she survived? For how long? But what if she would have died in the hospital?" I knew her wish was to die at home, in her own bed. So at least this happened. Only I couldn't be at her side when she left.

She was the most wonderful mother in the old. She was my best friend, my goal and my support. She always stood up for me against the whole world. She would have fought for me no matter what. She always was there for me. We fought together against this monster called scleroderma. She died like a candle in the wind. Mami, I will always love you. You have been wonderful.

"My mother's love will live forever in my heart."

Magdalena - maggiemayjune@yahoo.com