Del and I met on July 3, 1973 and were married July 5, 1974. We were together 80% of the time from the day we met until the day he died.

In August of 1994, Del began to lose his balance and his speech was a little hard to understand. I asked him to repeat himself and he said it was me! Sometimes, I do have a problem hearing. But his speech was becoming slurred. He went to a doctor and was told he had ear wax build-up.

In June of '95 he was becoming worse. Friends teased him about hitting the bottle. They knew he didn't drink. I took him to another doctor and he thought Del had Parkinson's Disease. In September of '95, the doctor put Del on Cogentin as he was drooling. His walking was getting worse so they said to try a cane.

In October, he graduated to a folding walker. He was having problems with the walker, so they put wheels on it. We were advised to go to Social Security and apply for total disability. Del, being self-employed, didn't have insurance. But we heard horror stories of people getting denied. On Oct. 31, 1995, we went to Social Security. They made appointments with a neurologist and psychologist in January of '96. The neurologist said that Del was an a-typical Parkinson's case. He was approved for total disability on February 1, 1996. Del also qualified for Medicaid because of his lack of insurance and the fact that he had been totally disabled for over two and a half years.

Del had a big recliner and everytime he got into it, he would fall asleep. I would ask him what was wrong, and his reply would always be that the recliner was so comfortable. I didn't think much of it. He was becoming kind of short-tempered with the grandkids. One of them has ADD and can be a handful at times.

Being around my husband almost 24/7, I did not see these changes in him. My daughter-in-law pointed it out. Plus I was caring for my mother, who came to live with us after being diagnosed with Alzheimers.

Once Del was on Medicaid, the doctor put him on Sinemet. When he was diagnosed with Parkinson's, I went and got a book on it. According to the symptoms, Del had the oily forehead, increased dry scalp and rigid arms. I had always teased him about walking with his arms rigid. Now I knew why. He never had any tremors though. With Medicaid we had to have a doctor on their list. The doctor treating Del wasn't on it, so we had to find a new doctor. As I went down the list, I came across my mother's doctor. He knew Del before he showed any signs of being ill.

I called him to see if he would take Del on, and he was happy to. He saw Del wasn't responding to the Sinemet and ordered an MRI the first time he saw him. That came back negative for a brain tumor. He tried Elavil along with the Sinemet and Cogentin. In April of '96, Del graduated into a wheelchair.

I was watching my husband become unable to do things that he loved, such as talking and doing things around the house and yard. The doctor ordered physical and speech therapy for Del and added some drugs to his system.

One day I went out in the yard for a few minutes. I came back in and asked if anyone called. He said, no. I checked the caller ID and my son had called. But he didn't leave a message. I called him and asked why he didn't leave a message.

Chris' reply was that he had talked to Dad for almost ten minutes. I asked Del afterwards why he didn't tell me that he had talked to Chris. He didn't remember talking to him. What was happening to my husband? This wasn't Del. Normally he had the memory of an elephant.

Now when he went to the store with me, he would go in the "out" door and out the "in" door. I had to catch him, as the doors opened automatically. He couldn't remember where I parked the car, even though it was within our sight. I had to get a handicapped sticker for our car.

I called the doctor the next day and took Del in. He said that Del was probably in the early stages of Alzheimers. I looked at him and said, "I can't have two of them with it!". I took Del home and got out my book about prescription drugs. I started checking out the drugs he was on. Almost all of them affected the memory (memory loss, memory confusion, etc.) I could see that some of the drugs, such as Cogentin and Elavil weren't helping Del. I called the doctor and asked if I could cut down on some of the meds that weren't helping. He said yes. Del's memory improved 1,000%. He didn't have Alzheimers; it was the meds affecting his mind. We were so relieved.

The doctor sent Del to a neurologist in September of '96, as he seemed to be going down. After some tests, his MD said they were leaning towards PSP. I called the Michigan Parkinson'g Foundation and got a phone number for the Society of Progressive Supranuclear Palsy and asked for some books. When we went to the neurologist, I mentioned to him that I ordered the booklets on PSP.

On November 11, 1996, we went to see the neurologist. He told us that Del in fact did have PSP. I asked him what it was, what we should do and what was going to happen to him. His reply was, "When you get the books, they will answer all your questions. See you in three months." Then he walked out. I didn't receive the books for another six weeks, and our doctor was unfamiliar with PSP. We were in the dark and had nowhere to turn.

When the books finally arrived, we read them eagerly. As difficult a disease as Parkinson's is, we could have lived with it.... but PSP? It was a nightmare.

With PSP, your symptoms progress rapidly; usually it is aspiration pneumonia that eventually kills you. One of the main problems that is characteristic of PSP is the inability to focus your eyes up or down.

In February of '96 when Del got on Medicaid, I took him to the eye doctor, as he needed a new prescription. Medicaid approves glasses every two years. In November of '96, Del complained again about his eyesight. I called the eye doctor and took him in once more. His prescription needed changing. We sent it through Medicaid again along with the books from the Society for PSP and they approved Del. This is rare, as it had only been nine months since the last pair. I was so grateful, as we didn't have the funds to lay out for the glasses.

I talked to the MD about the neurologist's treatment of us when he diagnosed Del. He told us that the neurologist was an excellent doctor. He agreed that it wasn't right what he did, but he advised us to try and give him a chance. We went back and I had questions for him. He received a call on his cell phone and he took the call. When he was finished, I was going to ask the questions; instead, he starting making phone calls. That didn't set very well with either Del or me. I never did get to ask questions. He asked Del if there was any change and then gave the customary "See you in three months."

The MD said that perhaps the neurologist's behavior was due to Del being on Medicaid and that once the Medicare kicks in , we'd see a difference in him. I have to admit that he was always very busy....overly busy. His waiting room was like a production line. If we had a 2:00pm appointment, it was 4:30 before he saw us.

In'97 Del was having problems with his swallowing. His gagging caused him to wind up in the hospital a couple of times.

Del had a throat infection in December of '97. He was given E-Myicin, an antibotic, which he stayed on until January of '98. Since he was getting unable to climb stairs to get to bed, I bought a sofa bed for the living room. Mom had the downstairs bedroom. Del's balance and falling were getting worse. I had to stay with him, and thankfully he was cooperative with me in helping him get up. I had taken to the recliner for my bed, so I'd be close to Del and Mom if they needed me. This began the long road with me getting only three-four hours of sleep a day for the rest of their lives.

In late March, he was admitted to the hospital with a high fever and what they thought was pneumonia. They released him on March 30th with the stipulation that he had to have a hospital bed before he was discharged. I explained that he had the sofa bed, but they insisted that he had to have a hospital bed. So that was brought in along with a pressure mattress and trapeze for the bed. I had to do some fast moving of furniture as well as give our organ away to make room for the hospital bed. But I knew we'd make it. Del came home on March 30th. On April 2nd, his fever came back and was 103.5. I had to take him back to the hospital, until he was released on the 12th. The hospital ordered a visiting nurse who came to help us. I noticed he was running a fever again and called the MD. I was beginning to think that he thought I was looking for a break, considering that I was the full time caregiver for both Mom and Del. I had the nurse take his temperature and call the doctor. He couldn't figure out why Del would get rid of the high temperature in the hospital only to have it come back when he got home.

Having a small-built frame, I found it difficult to get Del up on my own. I found a transfer belt in a catalog by North Coast Medical. Different from a gait belt, it has handles on both sides and in the back, and it is tested to bear 1,000 pounds. I could literally pick Del up with one hand if necessary. The Emergency Medical Service and phyical therapist were very impressed with this belt.

On April 18th, I went to get Del up out of bed. He was cooperative and pretty easy to handle with the transfers. He almost fell into me and was so weak that I had to fight to get him in the wheelchair. I took him to the bathroom. He was burning up with a fever of 104.5. I called the doctor and was told to call for EMS. When I got Del off the toilet, I smelled the worst foul odor I ever encountered. He was admitted to the hospital again. They couldn't figure out what was wrong and called in the Infectious Disease Specialist. In the meantime, Del was becoming weaker by the day with the nagging symptom of a foul odor when he had a bowel movement.

My son was afraid his dad wasn't going to last much longer. Del moaned so much that the nurses put him in a private room. I received a phone call early in the morning from a surgeon needing permission for emergency surgery. Del was allergic to E-Myicin.

The allergic reaction caused his bowels to completely shut down and his colon to nearly explode. If this happened, he would die. The doctors said they may have to remove his intestines and colon to save him. Fortunately, they were able to do what they called a double barrel colostomy. Del would survive!

He came home on May 12th as an incontinent man who had to wear diapers. This man who had prided himself on being every bit a man was now reduced to an invalid who depended on me more and more. The roles had been reversed but not by choice. I had a very weak stomach and had to master the art of the colostomy. God, I was frightened! But my husband depended on me for his life. I was the only one for him and Mom.

I still had the services of the visiting nurse, as the doctor said Del would be bed-ridden for at least three months. The doctor ordered me a Hoyla Lift so I could transfer him into the recliner or wheelchair. Physical therapy started a couple of weeks later and we had Del up once again.

His speech was so incoherent that I couldn't understand a simple yes or no from him. I was starting to have to give him soft foods and add Thick It2 to his liquids. I taught him to tuck his chin into his chest whenever swallowing so he would have an easier time. It also helped prevent aspiration, which is food or fluids going directly into the lungs. Many patients have died from this condition.

In June, I thought we were on a roll, as Del seemed to be doing quite well and there had been no hospital visits. Then he got a fever again. It turned out that he went back in the hospital, as he had an infection in the blood. There were three trips to the hospital for this before it was straightened out. The night Del was admitted, I had to take Mom down to the ER. Because her leg was so swollen, I had the nurse look at it and she immediately called the doctor for me. Mom was admitted for congestive heart failure and put on the floor below Del. With the the Alzheimers, she gave the staff problems, so I bounced between her and Del for ten days.

The hospital staff allowed me to bring Beau, our little Shih Tzu, up to the hospital to help calm Mom down. This worked so well that Beau was allowed to come in whenever Mom or Del were in the hospital. Mom and Del were released one day apart and brought home in an ambulance. When I looked at Del, I couldn't believe what was happening to my hulk of a husband. He had always been so strong and so healthy.

Our friends didn't come around anymore and neither did Del's five children from his first marriage. Only one would bother to call and come over maybe once or twice a year. Everyone was deserting us except for my son, Chris, and his family.

We were able to get Del a power chair, so he could get out more. Our city councilman was in the carpenters union, and he was instrumental in getting a 50 foot wheel chair ramp constructed in January of '98. Del was unable to walk down the stairs, even holding on to the rails and using me for support. The only thing Del could do was watch TV. The neurologist suggested Play Station to help keep Del's mind and limbs mobile. Del loved Play Station, as I was able to find a fishing game for him. He would spend hours trying to catch a fish. Del was never one to give up. He was always so persistant in everything he did. Even though I couldn't make out what he was saying, he'd keep trying until I was able. It broke my heart to see this once so vibrant and eloquent speaker being unable to communicate anymore. He wanted to get out in the yard and run the lawnmower in the summer or the snow blower in the winter. There was no way that he could do any of these things.

I could see it in his eyes that he was asking, "Why me? What did I do to deserve this disease?" It was and still is heart-wrenching when I think back and see him in this condition.

As Del progressively went downhill, his MD was able to order speech and physical therapy for him at home. I began sending the books on PSP to Social Security, Medicaid, and the health department in Michigan where we live. I sent them anyplace I could think of so the organizations would be aware of PSP.

Most of the the rest of '98 went quiet as far as hospitals were concerned until December 1st. Del was taken in by EMX for choking and high fever. He once again had aspiration pneumonia, and he stayed in the hospital for twelve days.

A video taken by the hospital staff showed that Del's swallowing problems were getting worse for him. I had to purree his food. He had been drinking Ensure for several months and now this also had to be thickened.

During 1999, Del was becoming even weaker, and it soon became necessary for me to begin feeding him. Del was so very good about letting me help him. Knowing my husband, I knew he felt bad about having to depend on me for the least little thing.

My son, Chris, wanted us to come up to his house on July 4th at 2:00pm for a barbeque. I was getting Del and Mom ready and went to change Del. He hadn't urinated for twelve hours which is not normal for him. I called the doctor and he said to take Del to the ER. When I called my son, he had alreay left on the two-hour drive to pick us up. My daughter-in-law wanted me to wait on admitting Del until later. I felt that I had to take him to the hospital, so I piled him and Mom, both in wheel chairs, in the car.

Del had a blockage, and they had to put a Foley catheter on him. My son arrived and talked to the doctor. When I heard them both laughing, it suddenly dawned on me what was going on. I told Del that they probably had a surprise 25th wedding anniversary party for us. The doctor said he would discharge Del with the Foley, and then he showed me how to use it; I was becoming a nurse!

We finally got up to my son's house at 7:30 pm, and sure enough, there were people we hadn't seen since our wedding. Most of them had to leave before he even got there. Three of Del's kids even came. It was the first time they had seen him since 1994.

In August of '99 I talked to the neurologist about a support group in Michigan for PSP. He gave me the phone number of another neurologist, Dr. Peter Lewitt, who is the President of the Michigan Parkinson's Foundation and the teacher of Del's present doctor. I called and spoke to him. He asked if I would mind letting him see Del. We jumped at the chance. I got Del's records from the first neurologist and took him in. He examined Del and said that he, in fact, had PSP and that most of the tests the first neuro did were uncalled for. It then dawned on me that he was doing them just to get paid more from Medicare.

Dr. Lewitt suggested the Botox injections to help Del's eyelids open. Del had been using his fingers to pry them open. The first dose wasn't strong enough and the doctor had to increase them on the next visit. What a difference! I could finally see Del's beautiful blue eyes. He also started Del on Amantadine. There was such an improvement with his speech. Del could say enough words to make a sentence, and I could actually understand him.

-8- Del had always been top heavy, but now if he leaned forward just slightly, he was on the floor. He hadn't been able to stand or walk since January of '98. On October 30, 1999, Del was weighed in at the doctor's office at 182 pounds. That was a good weight for Del ; the Ensure was doing it's job. I had been crushing his meds up since April of '99 and giving them to him in applesauce or pudding.

Del wound up back in the hospital in December of'99 with aspiration pneumonia once again. They weighed him, and he was 169 pounds. Even though he made it back home in time for Christmas, Del continued to become weaker. He was losing an average of ten pounds a month.

On January 30, 2000, Del was able to get up and stand unattended with his hands behind his back. It was a miracle! The Amantadine was helping. He had physical therapy and was even beginning to use his walker once again.

In March of 2000, he was rushed to the hospital again for aspiration. I made signs and put them above his bed telling the staff not to leave him unattended while he ate or drank anything. I also gave them instructions on how to clean and drain his colostomy. I couldn't believe that I, a lay person, had to show the hospital staff how to do the colostomy. And we were on the Ostomy unit to boot!

Mom and I went in to see Del the next morning after he was admitted. There he was , drinking ice water with no one around him. I yelled and grabbed the cup from him. The aide came rushing in asking if there was a problem. I said, "Yes, can't you read these signs?"

-9- I had printed the signs on the computer so they could be easily read and had used red in the "cautions". The aide apologized, but I noticed that the ice water wasn't even thickened.

Del was scheduled for a video on March 10th to track his swallowing. Instead I received a call from the speech doctor saying that Del had to have a feeding tube ASAP. I asked why and requested to know what the video had shown. She hadn't done the video. When she went into his room to take him for the test, she found him choking on his breakfast. She almost had to do the Heimlich on him two times. No one had been with Del; they simply gave him his tray and left.

At first he didn't want the feeding tube. I asked if he was ready to give up - to die and leave me. He shook his head "no" , so they put the tube in him. He was down to 136 pounds in February.

Del was sent home and actually started to gain a little of his lost weight. But there I was, having to learn how to handle the feeding tube. The hospital staff never showed me; they just brought it in and took off. I had to call three times and use some rough language to get them out. I mastered the feeding tube pump which was actually easier than the colostomy. Del depended on me as I literally had his life in my hands. I had to do everything I could to keep my beloved husband with me. That included asking the doctor for a suction machine.

Del started having urinating problems again in February. The doctors put a Foley on him, but he would rip it out. In April, he had it in for a week and the doctor ended up taking it out. Del wound up in the emergency room that night, as he couldn't go to the bathroom. They put another Foley on him and were going to discharge him. I told them to run some damn test and find out what is going on. I had to take him to the urologist and he said that the brain wasn't getting the signal to the bladder to relieve. He said he'd take the Foley out, but I would have to straight cath him. The nurse was supposed to show me how to SC. Instead, she handed me the catheter and told me to do it. I was so scared! I was so afraid I'd hurt Del. How was I going to be able to do this? The nurse said it would be worse as far as Del's discomfort if she did it, and then I tried. I was so scared, but he depended on me. How could I let the love of my life suffer? So I did it, and they sent us home.

Medicare only allowed four catheters a month. I was supposed to use the same one 56 times a week. No matter how I disinfected it, Del would get another infection. I had to fight with Medicare. After telling them Del would be back in the hospital with infections, I was able to get 30 a month. They decided it would be cheaper for them to allow one per day.

Del began to have trouble breathing in the latter part of May. The doctor ordered a breathing machine and oxygen. I n

ow had every piece of equipment you could think of, including all the diapers, colostomy supplies, Hoyla lift, etc. Our living room had been turned into a hospital room.

-10- I had to take Del to the urologist, as I was wondering if he had an enlarged prostate and if it was the culprit. I couldn't believe PSP was causing these problems. They put a scope in Del and on the monitor I saw all the tissue floating iin his bladder. It looked like the bottom of a dirty fish tank. His prostate was a little enlarged but not enough to cause problems. I had been straight cathing him and at the same time pressing on his bladder. I would have him grunt when he was strong enough to force out the excess urine. No one told me to do this, but I figured out why the Foley's were making him uncomfortable. He couldn't talk, but he'd point down. You'd be so surprised how much residual we got out of him.

I told the urologist about pressing on Del's bladder to get the residual out, and he said I was doing the right thing. Pretty good, whenI have to figure things out myself that the medical profession should have educated me on. Why was I doing their jobs?

We went home and I called Dr. Lawrence Golbe, who wrote the book,"PSP : Some Answers", to ask him if there was any truth about the brain not getting the message to the bladder to relieve. He replied, "Most definitely." This encouraged us about the urologist.

During 1999 and 2000, Mom had also been in the hospital. On her left breast I discovered a tumor, hard as a rock and as large as my fist. She also had low hemoglobin and had to have blood transfusions. In September of '99 they wanted to remove her breast. She was 90and in congestive heart failure. Her legs, feet and ankles were swollen like elephants. Based on her condition, I would not let them do the surgery, as she never would have made it through recovery. I never told her she had Alzheimers or breast cancer.

-11- Mom started taking Tamoxifin in October of '99. On December 7th, she went in for a check-up and the tumor was completely gone. Mom was in remission.

As Del's swallowing problems got worse, he couldn't even swallow his own saliva, as it became so thick and elastic, I had to use my fingers and try to pull it out his mouth. The suction machine couldn't even get it.

On June 1st, Del was gagging and coughing. I had to drive an hour on the freeway to get to the doctor. On the way to the doctor's office, I had to keep tapping Del on the back with one hand while driving with the other. I could literally hear the rale in his back and also on the front side by his collarbone. When we got there, I asked the doctor if he had a suction machine and the answer was "no." I got the neurologist to listen to him. He was so loud that you didn't even need the stethoscope, and if you put your hand on him you could feel the rattle. The neuro had two other doctors listen and told me to take him back home to his MD.

I was so scared while driving so far on the freeway for fear that Del might have serious trouble. We made it, and then I had to drive him to the ER. Now, if you have swallowing problems, you do not give someone Compazine. It may depress the gag(cough) reflex. Some people who have taken this drug have accidentally choked to death, because the gag reflex failed to respond.

Without my knowledge, these idiots gave Del Compazine. He had fallen asleep and they had a hard time arousing him. I had his meds with me and he was due for them. I got the nurse in, and then I found out what they gave him. He was admitted for observation, and they put a Foley in him. I told them how to get the residual out of him.

I went home and got The Pill Book out and looked up Compazine. Then, I hit the roof! What in the world is wrong with these doctors? I called the hospital and started yelling at Del's nurse. When she heard what the outcome could be with Compazine, she red-flagged his charts four times.

-12- Del was admitted. I had instructed them on how to do the straight cathing for the residual and how to handle his colostomy. Whenever Del went in the hospital, I had all the booklets on PSP to leave for the nurses. I also told them that he was mentally competent, but he just couldn't speak. He could answer by shaking his head "yes" or "no".

When Del was in the hospital, I was always worrying whether he had been given the proper care. At 7:00 the next morning I called to check on him. I was told to get there ASAP, as he was totally out of control. When I asked what was happening, I was told that Del was ripping out the IV's as well as yanking at the feeding tube and colostomy. And then the nurse had the nerve to tell me that she didn't have to straight cath Del all night as he voided in the diapers. I blew a gasket! I told her to get busy and straight cath him and press to get the residual out. The staff got over 1,000 cc's, equivalent to a quart. That was his whole problem! By the time I got Mom ready and got up there, he was laying almost flat on his back choking. There was no suction machine, so I had to run and have one brought in. Then, they forgot the yanker.

The next day, I went in and found him choking and unable to find his call button for the nurse. I trailed the cord down and over and found it hanging on the bottle for used syringes. I went after the nurse and lit into her. She looked for it and finally found it after I told her where to look. I asked why he didn't have it in his reach. Her response was, "After what he did the day before, grabbing at everything, we didn't want him destroying that, also." I told her that if they had done their job right, he wouldn't have pulled on anything.

On the 7th, Del was discharged. They never straight cathed him, and he had over 500 cc's when I got him home. I tried getting them to do it before we left the hospital as he let me know he had to go. They passed it off as muscles tightening up and gave him Valium to settle him down. I made yet another phone call to the hospital and then to his MD's office.

On the 18th, Del was having a very labored breathing and what I call "sweat beads" on his forehead. I knew he had aspiration pneumonia again. I called the fire department. They had been so great with Del and Mom over the past few years. If Del had fallen and I couldn't pick him up, they would come. He wouldn't be hurt, but I just needed another body to help me. I would ask for a police officer, as I didn't want to take EMS away from a possible threatening problem. They always sent the fire department. In fact, the firemen asked for the PSP books and posted them up on the bulletin board at the Central Fire Hall.

Because our normal hospital was shut down to ambulances, Del had to go to another hospital which happened to be the largest trauma center in Detroit. They had no clue what PSP was and thought Del had a stroke, but thankfully they could find nothing wrong with his heart.

Del was admitted and basically had a repeat of the same problems described on the previous admission. He was released on June 18th, Father's Day.

On the 22nd, I had to call the doctor and get a portable x-ray machine brought to the house. Del couldn't even stand. They confirmed what I already knew. He still had the aspiration pneumonia. I had to call 911 and get him back in the hospital for what would be his last stay.

I received a phone call from his doctor on June 23rd telling me that we needed to discuss Del's need for a ventilator. My God! I was losing my husband. How could I even approach him with this? I had always hidden my emotions and tried to remain brave for Mom and Del's sake. After I had a loud screaming and crying match, I called his brother in Maryland. Then I called my son. We arranged to tell Del on the 27th, when his brother could be with him.

The morning of the 27th, I went in to wake Mom. I could see her breathing, but she was not responding to me. I turned the light on and could see that she was almost gone.

-13- I called 911 and quickly got Del's oxygen machine on her. The fire department brought her around and said they had to take her to another hospital. She couldn't go where Del was.

The hospital admitted her, and I finally reached my son. Although he was ready to leave the state on a job, I had caught him just in time. It wasn't looking good for Mom, while Del was in another hospital fighting for his life. I had to bounce between the two of them. At 8:00pm I had to ask Del if he wanted to be put on a ventilator if the need would arise. He gave me the signal "no". It was the hardest question I ever had to ask my husband, and it grieved me so. I didn't want him to think that I was giving up on him. I didn't want to leave Del after that conversation, but I had to get back to Mom. I stayed with her until she passed away a little after 3:00am on the 28th.

I went back to be with Del and had to break the news to him that Mom was gone. I checked his mouth and it was so full of saliva. He had a piece the size of a quarter lodged at the back of his throat. It took me twenty minutes with my fingers to finally get it out. The doctor came in and I showed it to him. I begged the nurses to please check Del's mouth as I was not up to it, having just lost Mom. But they came and went. My daugher-in-law and I worked over two hours getting his mouth clean. I went out at 3:00pm and read Del's chart. The doctor had a written order to keep Del's mouth clean and clear. He had written it at 8:30am.

I had taken a picture of Del on June 22nd. He was trying to smile for me in the picture. I left early on the 22nd and told him I'd see him when he came home. I was just completely wiped out and hadn't even begun grieving for Mom.

Del was discharged on July 3rd, the 27th anniversary of when we first met, and I was happy to have him come home to me. When the ambulance arrived, I was so completely in shock. He looked like he had lost ten pounds in his face overnight. He was still running a slight fever and in a lot of pain. I asked him if he had to go the bathroom. While he was still on the stretcher, I had to straight cath him and got 800 cc's out of him. I told the ambulance drivers that this should have been done before he was released. After all, we just live fifteen minutes from the hospital. They told me the nurse did it, but they didn't get the residual out. I got Del settled in and called the hospital once again and complained.

-14- Beginning in January of 1999, I had been able to have an aide come in a couple of hours a day. She was my Angel of Mercy and the only relief I had. When Del came back home, the aide was reassigned and physical therapy had been scheduled to begin again.

Our 26th wedding anniversary was on the 5th of July. It wasn't a very good one, but I still had my beloved husband with me and that was what mattered.

The physical therapist came out on July 8th. He had known Del since he was first diagnosed with PSP. He took me aside in the kitchen and told me that Del was so weak that he couldn't do anything for him. Then he told me that it was time to call Hospice. He wouldn't leave until I made that call. He had given up on Del, too. Why was PSP doing this to us? Why do patients have to suffer so?

Hospice came out the next day. My son and his family had been with us since June 27th. The PT was there for support, also. None of Del''s kids bothered to call, even knowing the seriousness of his condition.

I had to ask Del about the DNR and then I had to sign it. I couldn't even see the paper. And I thought the question about the ventilator was hard. But compared to this, it was a piece of cake.

On July 9th, a nurse from Hospice called me. She had never even seen Del, she knew nothing about PSP and yet she wanted me to disconnect his feeding tube. I was outraged. She didn't even want me to give him water, other than enough to flush his meds with. One thousand cc's of water a day were being put right in Del's tube with a syringe.

-15- The nurse was coming out the next day to meet with me and Del. I called the MD and told him what she was suggesting about the feeding tube. He said to leave it where it was. I didn't want to assist in my husband's death.

The nurse came out on Monday and was surprised to see the pump at the same rate. I told her that I had called the doctor. She left me some Morphine drops, and I talked Del into the Foley once more just for a couple of days to give him some rest. It was so hard for him to grunt, but he tried so hard.

On July 11th, the MD came to see Del. He spent almost three hours with us. I asked him if he sent Del home to me to die. His eyes teared up, and he shook his head, "yes". He said I could give him the proper care at home that the hospital wasn't giving.

Del wasn't moving much at all. On Wednesday morning, I could see that he wasn't putting anything in the Foley and his colostomy bag was empty, too. His hands and ankles were swelling. I had to call the nurse at 2:00 am to come and give him a shot of Lasix. I got his wedding ring over the knuckle and taped it to his finger. I literally watched the muscles leaving my husband's upper arms.

They put some patches behind Del's ears on Tuesday to dry up the saliva. On Thursday at 2:00pm, I knew my husband wouldn't make it through the night. I had my son take the grandkids to his in-laws. I told him I thought that Del would have gone Wednesday, but he held on because he didn't want to go with the grandchildren at home. They brought the kids back after supper to give Grandpa a good-night kiss. The kids loved him so much, and three of them can't remember hearing him speak or seeing him walk. But he was their grandpa.

At 3:40 am on Friday, July 14th, I got up from sitting with Del and went out in the kitchen for a drink and a quick cigarette. Chris came out and told me that Dad was gone. I ran back in the living room and confirmed that Del wasn't breathing. I went back and called the Hospice nurse to let her know. I had her on the phone and went back to Del. He took a huge breath. I told the nurse that he was still with us. She tried telling me that it was just the muscles. He did it again five minutes later. Finally, she decided that she had better come over. That was so nice of her. That was her job!

-16- I got out the stethoscope and listened to Del. My hearing isn't great, but I could swear that I heard a very faint heartbeat. The kids listened also, but they couldn't hear it. I put the blood pressure monitor on him, but I couldn't get any pressure. I even checked the places they did with Mom, but nothing worked. I was kissing him and saying good-bye when all of a sudden he let out a deep breath. The nurse came in, and then Del went into ten minute intervals of breathing. This lasted until 4:20am when he took his last and final breath. When Del died, he was under 100 pounds and was just skin and bones.

The nurse said in her 30 years of nursing, she had never seen anyone go like my beloved Del did. He was a fighter to the end.

Del is now free to walk, laugh, talk and eat again. He is free to experience all the things that he loved to do and that Progressive supranuclear palsy stole from him. PSP took the love of my life. No one should ever have to suffer from a disease. Del was truly a man "trapped in his body." But mentally, he was fully competent to the end. He suffered as he watched the changes coming over him , and he had no control. There are no meds or cures for PSP.

Once you are diagnosed with PSP, it is a sure death sentence, as you will most likely die from aspiration pneumonia. Without the patches, Del's greatest fear of choking to death would have come true.

For the last year of Del's life, he could not be left unattended. I had to be by his side 24 hours a day, seven days a week. Had he gone to a nursing home, he would have been restrained and sedated for the rest of his life due to the common lack of knowledge about PSP.