NARRATIVES
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3 May 2005
On Sunday, 01/30/05 around noon I found my mother laying in her bedroom floor. She was laying on her back with the telephone cord wrapped around her body. She had vomited. She was nonresponsive but was breathing good. My husband called 911 and I tried to get a response from Mother. She was moving her arms and hands and was making a noise almost like a snore when she exhaled. We did everything the 911 operator told us to do.
The first responders arrived on the scene quickly. My husband stayed with them in the bedroom and I gathered Mother's medications and personal info because I knew it would be needed at the hospital. I called my brother and son. My daughter was at my mother's house with her children. I made arrangements for my husband's sister to keep my grandchildren. Mother was stabilized for transport to the hospial. She was taken to a trauma room.
The RN asked me many questions and told me that he suspected a ruptured aneurysm. An ER physician came in and drew the same conclusion. Tests were performed immediately and the pictures revealed a large amount of blood in her brain. The neurosurgeon was in the hospital very quickly. Because of the spinal fluid and blood that was present in her head he said that he would need to insert a drain to prevent hydrocephalus. On the way to the SICU I asked the RN if this is what he would do because he had been very helpful and informative. He said that if this procedure was successful he would continue treatment, but if it was not he would kiss her goodbye and let her go.
The procedure was successful. Mother continued to breathe on her on and began responding to treatment. After careful thought I determined that Mother had been preparing for bed when the aneurysm ruptured. This meant that she had been lying in her floor for approximately 16 hours when I found her.
M y mother was 77 years old when this happened. Because of her age, the doctors were counting her out, but they did not know my mother. She was much younger than 77. She had only retired two years ago from the school district where she worked as librarian. Previous to that position she had worked as an aide with the special education children who required many different types of assistance. After retiring she was active with her hobbies, meetings and the childcare of her great grandchildren who ranged in age from 1-8. She cared for her 2 year old great granddaughter and 3 year old great grandson daily while their mother attended college. In the afternoons she also cared for a 3 1/2 year old great grandson who has autism and Asperger's Syndrome. She carried her 8 year old great grandson to school each morning and picked him up after school. She was active and healthy.
She was being treated for congestive heart failure, high blood pressure, high cholesterol, and arthritis. She had completely changed her diet eating only good foods, had lost weight and was still on top of her game. She was an avid reader and crossword puzzle solver. She enjoyed doing her own yard work and raising her flowers. She had always been a hard worker and was very independent. Once the doctors realized that she wasn't giving up without a fight they changed their attitudes and approached Mother's care differently.
Mother had a living will and healthcare power of attorney which stated that she did not want to be kept alive by artificial means, etc. I was given the difficult assignment of carrying out her wishes. I told the doctors at the onset that I would abide by her wishes. Well, on day two Mother began running a temp. and the pulmonologist felt that she was developing aspiration pneumonia. Rather than wait for it to develop fully he wanted to start agressive antibiotic therapy and "to make it easier" for Mother he wanted to put her on a vent. My brother and I discussed this and decided to go along with him because it wasn't actually a lifesaving measure but was only an assistance to her. My husband later told me that we heard what we wanted to hear.
Well she didn't have pneumonia at all; she had a urinary tract infection. Days three and four passed with some improvement. The neurosurgeon saw her in SICU before he left out of town for the rest of the week. He had already told us that none of the neurosurgeons in our city would attempt surgery to repair the aneurysm because of the difficulty. He suggested transferring her to UT Southwestern in Dallas as soon as she was stable enough to transfer, but he felt that he would see her Monday when he returned on Monday.
On Thursday, 02/04/05, Mother's doctor's partner was adamant that Mother needed to be transferred as soon as possible, but he wanted her to go to Tyler, TX. Before we could get the helicopter to transfer Mother, East Texas Medical Center had to give her room to an inhouse patient. Another room was assigned to Mother on Friday but she wasn't able to transfer until almost 4 pm because of poor visibility. My brother and sister-in-law traveled to Tyler early so that they would be there when Mother arrived. My daughter and I stayed with Mom and saw her leave in the helicopter. As soon as we arrived at ETMC in Tyler, the interventional radiologist had already started his work-up on Mom. He was waiting for her when she arrived.
Almost as soon as I got into the hospital the doctor came to the waiting room, showed us the pictures and explained the coiling procedure he was going to attempt. He said that he had never seen an aneurysm this large because they always rupture before getting anywhere near this size. Mother had a posterior inferior cerebellar aneurysm that was out both sides of the artery. He was able to coil 95% of the aneurysm. He placed a stint from the involved artery through the lower part of the remaining aneurysm and directed the blood flow to another major artery. The neurosurgeon would not discuss clipping the remaining aneurysm because he said that Mom would have to improve dramatically before it would be considered. During this time Mom is still on the vent.
She progressed slowly. Fortunately she had movement in all of her limbs and everything seemed to be going well. There were ups and downs and several returns for arteriograms to be sure the coils were in place and that there was no more bleeding. She was stubborn and strong willed. She had another pneumonia scare that didn't develop. The vent tube was removed and Mother said that she would never have another tube. Her left vocal cord was paralyzed and her speech was affected. She was even able to write what she wanted when we couldn't understand her. Her throat and tongue weren't working properly so a NG tube was inserted for feeding. It was decided that Mom could be released to rehab. She was assessed and accepted by a rehab in our hometown.
Once again the doctors pulled a fast one on us. Not for lifesaving once again but for her comfort it was suggested that a PEG be inserted. Once again we agreed. On 02/27/05 Mom was transferred by ambulance to the rehab. Before leaving ETMC the neuroradiologist told us that he could see no damage to the brain and felt that Mother was a very good candidate for rehab.
It was obvious to us from the get go that Mom was not ready for rehab. She was not able to do anything for herself; she couldn't even ring the nurse's call button. In spite of this, she was taken to therapy 3 hours six days a week. She couldn't do the exercises and needed more one on one therapy than the rehab could offer. When I went to visit her at lunch time, she would be sitting in a wheelchair facing the head of her bed and was often slummed or leaning over without restraint. I met with and spoke to the therapists and case worker often. Mother's short term memory was gone. She tried to talk and was actually improving. She did not pass the swallow study and had to stay on the PEG. An antidepressant was added to Mom's medication regimen. I felt that she was actually getting worse instead of better. I knew that Mother's mood and condition weren't right. I mentioned this to the nurse and she assured me that she would watch Mother closely.
On 03/22/05 at 4:30 am. I got a call from the rehab telling me that Mom was being taken to the ER because her vital stats were dropping. The RN felt that Mom was in CHF. The doctor agreed especially after seeing the x-rays, but decided to get labs drawn. Mom's heart was as normal as her's will ever be but the labs indicated pneumonia. Just what we needed. I talked to each of Mother's physicians and told them that she would not be placed on a vent again. They each agreed with me under the circumstances.
Mother's family doctor and her cardiologist were involved in her treatment this time and she felt better because she knew them. Mom was admitted and started on treatment for pneumonia. It turns out that she had DVT in her right leg and either a small clot or a piece of a clot had passed into each lobe of her lungs and was causing the appearance of pneumonia. The pulmonologist said that each embolism was large. It was also found that there was a large clot that was loosely attached along with other clots in the right leg. Mother had a filter inserted to catch the clot and keep it from passing to her lungs or heart. The occurence of a mild stroke could not be ruled out. When time came for Mom to be released from the hospital the rehab said that she did not meet thier requirements, but that was okay because we had decided not to return there. Instead we had decided that Mom should move to a nursing facility that also had skilled physical therapy. This is where she would have gone to begin with if we knew then what we knew at this point.
Mother has been in the nursing facility for a little over a month now. At first she seemed to be very content and satisfied. She wasn't anxious the way she was at rehab. The staff treat her very well. Her therapy started out quite well, but about two weeks ago she seemed to regress again. This time she has turned around. Her brain and leg muscles are not communicating. The therapist is doubtful that Mom will ever be able to use her legs, but he said that it wasn't impossible that time would resolve the problem.
Her speech was improving but then she regressed. Yesterday she only said two words to me and today she didn't speak at all. But today she did vomit twice, but it is believed that this is a side effect of the PEG. She still isn't able to use the call button because she doesn't understand its use. She looks at me as if she doesn't know me sometimes and this is becoming more frequent. She seems to be sleeping more and she will be dropped from the skilled therapy program next week if she isn't showing a positive response. The speech therapist doesn't feel that Mom's tongue and swallow response are strong enough to pass the swallow test yet so she must remain on the PEG.
Is this normal? Does anyone have any suggestions? Is there anything I can do to help my mother? Her medications at this time are aspirin, Lexapro, Prednisone, Accupril, Potassium, Albuterol and Robitussin. There was concern last week that she was losing blood causing her to be anemic. Come to find out she is only below norms a little bit. There was no blood in her stools. She is on a high fiber formula, but I do not remember the name. I visit her at least once daily. My brother visits once a week. My aunt and a dear friend of my mother's visit her often. They notice the changes just as I do. I keep in contact with the staff and there is another resident at the facility who watches after Mother when I am not there and is quick to inform me about anything that she notices.
Mom has been sitting in a gerichair in the afternoons after therapy and watching television in the living area with other residents. We participated in family night last Thursday, but her mood and responses have gone downhill since then. Am I going to have to learn to live with these ups and downs? I am alone in dealing with this because my family and co-workers have never been in such a situation and just don't understand. I believe that my brother feels that our mother died on 01/30/05 and he just cannot deal with the situation. Is there anyone I can share this with who will understand?
Update: 4 November 2006
I would like to update you on my mother's progress since I posted our story on May 3, 2005. We celebrated her 79th birthday in August-I really didn't think she would celebrate that birthday, but now I won't be surprised if she doesn't celebrate her 89th birthday!
Mom's progress was nil. She was being tube fed and rarely wanted to get out of her bed. She even lost her longterm memory which I think was because of the two strokes she had. It was very depressing to visit her because I never felt that she truly recognized me, but thought that I was one of the nursing center staff. My aunt and I persisted in our visitation.
Near the end of 2005 I was approached by the nursing center about placing Mom in hospice because services would be offered to her that the center couldn't give and she would get more personal one on one care. I agreed. Mom's roommate died and I requested that she be moved to the window bed. Hospice worked with Mom and me too. There was so much support and it was a great relief to me.
Mom's longtern memory returned but she was still confused and had no sense of time, In March 2006 she became septic and no one expected her to live through the week. I stayed almost around the clock with Mom talking to her and being with her. I laid with her in the bed and talked to her. I told her that she was very ill. I also told her that I knew that she had led a very hard life, but that she had done so much for so many people, and that I knew she was tired. I also told her that if she was ready to leave us and go to see our other family members who had died it was okay, but if she wanted to fight the infection I was there to fight with her. Well, she improved every day! The doctor extended the prescription so that she would receive the full course of treatment. Not only did she beat the sepsis, but she continued to improve almost daily.
It is now Nov 2006 and she is talking, eating, and surprising everyone! She improved so much that she was released from hospice, although the wonderful people still check on us. There are no machines in her room. She is eating pureed food in the cafeteria three times a day plus getting snacks. She requested cornbread and milk last week and the cafeteria workers fixed her up! She remembers our conversations, recognizes visitors she has not seen in a year, and is telling the aides that she is going to walk.
We keep current photos of the family on her bulletin board and keep her up to date on activities and events concerning people she knows, but she still has trouble keeping up with the date. Her medications are minimal and she is enjoying a quality of life that I really never expected her to see again. Why the aneurysm waited until she was 77 to rupture we will never know.
God has blessed us with miracle after miracle in Mom's rehabilitation. It has not been easy for her or for any of us, but we have been supported and strengthen by family and friends and the many, many people's prayers. The nursing center staff love Mom and care for her very well. One of her aides sat with me when Mom was so sick on her own time. Hospice workers visited her when they were not on the clock. Church congregations in five states have kept us on their prayer lists.
It did take around 18 months for Mom's brain to be healed enough to return her to us. Although she still requires intense care, she is so much better. And, if I go to visit her one day or I receive a call from the center telling me that Mom is walking I won't be surprised only joyous.
I have matured and taken on the matriarchal responsibilities of the family. I have learned to live one day at a time. I have learned not to sweat the small stuff so much. There have been other areas in my families lives that have been near crisis levels since Mom's rupture, but I have handled these matters with a totally different outlook and reacted much differently than I would have two years ago. I have been amazed at the calmness that has entered my life since I talked to God on Jan 30 2005 and told him everything was in his hands and I was there as a vessel to carry out what His wishes were. Oh, there have been several times when I still started to return to the old mind set, but for the most part I have sat back and let God take care of our lives.
For any folks who are going through experiences like we have, I can only advise them to let God lead them, and I pray that their loved one will have the quality care from physicians, nurses, aides, etc. the way Mom has had. Mother may not progress any further than she has or she may continue to improve until she is her old self, all I know is that I love her and she has truly been an inspiration to me and others. She has mentioned going home, but that possibility is still a distance off and I truly don't think I would agree to it. We do hope to be able to take her out for short trips eventually.
Don't give up hope and keep your faith. It is also important to take care of yourself which I learned the hard way. God will take care of everything however it is meant to be - just give it to Him and step back. If you don't know God, make his acquaintance!
Discussion, comments, or questions: Kathy Green
© Copyright 2005 Kathy Green
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