Lois was a wonderful and warm woman
that owned a successful business with her husband, Steve, in NC.
Mom was one of my very best friends, and is the most selfless,
caring person I know. I am what I am today because of her. We
shared a very special bond that goes beyond Mother/Son and for this
I feel grateful. She enjoyed things such as crossword and jigsaw
puzzles, bonsai and plants, and spending relaxing time with family.
This is a story of our journey through the painful ordeal of an
Anuerysm Rupture. It begins from the start in January 2001 till the
end in March 04. Although an incredibly painful journey, it was
filled with so many rewarding times and changed our family and
everyone around her for the better. We urge everyone to live life
with no regrets, and always let the people you love know how much
you love them. This concept in my life has helped me greatly in
dealing with this, as Mom had always known how much I love her, and
I know how much she loved and was proud of me. She told me often.
..Be Strong and NEVER GIVE UP.
Moms Story: The Journey
7 March 2001
My mom's story sounds much like many of the stories I have read here. On January 30th of 2001 it happened. I look back now at all the warning signs over the last year. .blurred vision, major headaches occasional dizziness. She had gone to several doctors only to be referred to another. The headaches were increasing and she went to another one mid January that gave her pain pills and told her if they persisted to go see a specialist. She had told everyone that although they still happened, it was with less frequency. I know now she was afraid; afraid of what was going on. And we all assume we have time to find out what was wrong. Lois didn't. I got the call that morning about 5:45 AM. Dad told me that Mom was unconscious and he had called the ambulance. He told me in a panic she may have had a stroke.
My mind was instantly racing. recalling all the headaches mom has had in the last 3 months to a year. Knowing something wasn't right, remembering her fear, I stumble in the darkness with a panic and put on the first available clothes. My wife is awake and is telling me to stay calm. Yeah right. My heart races a million beats a minute. It's about 6 AM. I rush to the car, not thinking of anything else. Its cold, and so very dark. I start to sob and the tears are rolling down my face as I race towards the house. All I can think of is " PLEASE don't die!" I finally get to the driveway - the ambulance was there. I run into the house. The stretcher is between the hallway porch and the kitchen and there is mom slouched back in the kitchen chair, wearing her robe and dog print jammies. The calm of the paramedics takes me by surprise. " Heyyyyy partner, how are you?" The young man says.“How do you think I am?" I think to myself, Why aren't they rushing? How can he be so calm? Dad is no where to be seen. I tell them who I am. She seems to be breathing, almost snoring, and totally limp.
The paramedics struggle with getting the stretcher into the house. I help anyway I can. They are trying to lift her but at the angle they are at it isn't easy. I step over mom and help them. I take her feet. We lift her into a more sitting position in the chair, then onto the gurney. She continues her loud snoring, struggling to take a breath. I ask what they think is wrong. "She may have had a stroke partner. That's what we are checking" Slowly, sooooooo slowly, they finally get her out the door. Dad comes rushing out. I found out later he hadn't gotten dressed till the paramedics arrive. They ask about medication. I run in and ask Dad. He is in a bit of panic to say the least. She was only taking a little of her blood pressure medicine. I grab ALL the assorted bottles and head out towards the ambulance. We rush towards the hospital and Dad rides with them, giving them information. Its cold, raining and dark.
We wait, wait and wait. The rest of the family gets there and we cry and hold on to each other. Finally a doctor calls us back and tells us Mom had an aneurysm burst in her head. An intraventricular subarachnoid hemorrhage, not that we used that term after finding it out except to look up info online.
Over the next few days we found they had put a tube in draining the blood from Mom's head. We see her finally. She is totally limp, and has tubes down her nose and attached everywhere. It was totally horrifying. After a week, the doctor, a great woman, said she had an aneurysm that couldn't be clipped but she would attempt the coiling process which involves inserting platinum coils into the bubble, (which had stopped bleeding) in an attempt to reinforce the walls of the artery and keep it from happening again. But much damage had been done. The "bleed" was a very bad one. We were all devastated as she lie there, totally helpless and on life support.
We had at least one or more family members in that waiting room 24 hours for nearly 2 weeks waiting for some kind of news of her coming out of it. Her vital's were stabilized enough where we felt we could go home which for most of us was only 25 minutes away. Dad had brought their motor home to park outside the hospital so he could stay within a few minutes of being told to come It was to a point where we were no longer there in that horrible waiting room full of pain to find out things happening to Mom, but to field calls for everyone else. So eventually, everyone tried to get back home and Dad even took the motor home back . It was cold and was costing a fortune to keep heated and parked. We made sure the nurses had our numbers, and vowed to be there every visit till she came out of this.
They had scheduled the coiling process twice and had to stop it last minute due to a fever one time, and after getting her down to the operating room the second time, her BP rose so high, the doctor said she was surprised it didn't rupture again. We found out that she didn't get put totally under and even though she was given medicine for BP and a sedative, it still shot up. Did that mean she knew more about what was going on and when they started she panicked? That would mean she was self aware. We waited.
In the middle of the third week, the doctors confirmed one of our biggest fears. There was some signs of a brainstem stroke. It was unsure how bad or how much damage would be permanent, but we were devastated . Because our ignorance to the subject, we kind of felt for a short time it was the end of the line. The doctor gave us a choice to either stop trying the procedure and see how she did over the next few weeks, or continue. We had to live with the knowledge there was a possibility that she could remain in this state forever. After consulting and having family meetings, dad decided we would continue. We couldn't give up now.
The doctors opted to take the tubes out and put in a trach collar for breathing and a peg for the stomach to feed her directly. At least she would be more comfortable, but it also made us aware that this would be something that would be happening for quite a while. They found hydrocephalus and had to install a second drain in her head. A few days after the trach is when I feel I made contact. She seemed SO much more comfortable. She was nearly breathing on her own as it was. Taking only 2 breathes per minute from the ventilator, and now, totally bald and bandaged, I stood in her room by her bed with my wife and tried all I could to stay strong and comfort her. Her eyes had started to open for a time but until that night they seemed so distant and non focused. As I held her hand and she seemed to be looking right at me, she started mouthing words. I couldn't believe it. not just random mouth movements, but words. clearly words. Joy swept through me as I realized what was happening. I told her that I couldn't read lips and that I was sorry if I couldn't understand her, but comforted her in knowing that the trach had caused a depression of her vocal cords and no sound could come out anyway. I asked if she understood and she nodded her head. Oh My God! She nodded her head!!!.
Tears welled up in me and I broke down. I finally made connection after more than 3 long weeks. I regained my composure and told her what had happened and to not be afraid. I explained in not great detail of what was going on and reassured her that it was going to be alright. She nodded again. It was a most amazing day. I told my family, and everyone, including myself was a bit skeptical . I didn't want to let myself have this. What if I was wrong? Was I just trying to grasp for straws? Three days went by with nothing more. Nothing. I really started to doubt what I had seen. Then one evening on the third day after first contact, my Dad and I were at the 9 PM visit. She was awake and mouthing words again! Why didn't I know how to read lips! It was the ultimate in relief and frustration and the same time. Dad was at her side telling her how much he loved her and reassuring her it would be OK. She was mouthing something to him and he wasn't understanding it. Neither was I. He put her hand down to reach for a tissue while she was trying to say something. I saw the frustration in her face. I went over to the other side of the bed and said, “I saw that!!" . She got the biggest smile on her face. it was glorious! Again I broke down in tears of joy. I KNEW she was in there now.
That night she was nodding yes and no to questions and was obviously much more coherent. It was an amazing visit. Dad and I embraced and cried, knowing she was there for sure. Finally someone else besides my wife knew.
Her coiling was scheduled for that Wednesday and all her vitals were very stable for some time. She slept most of the time between that Saturday and surgery. It severely frustrated much of the family that didn't witness what we had, but at least we all knew. We gathered that morning early to see her before she went in. The nurses bustled about to prepare her for surgery. We tried to comfort her and let her know it was OK. Then we left and went to the waiting room.
From 8 that morning till nearly 3 that afternoon we heard nothing. But honestly after the last attempt in which we saw the doctor after only 1 hour, we were relieved. Standing in the hallway, waiting, we would nearly jump at any stretcher that came around the corner. Finally I recognized one of her nurses and went running towards the stretcher. The nurse had said 3 times,“Give us half an hour!" but I didn't hear her. I just wanted to make sure it was Mom. I realized for sure it was and heard the nurses words, followed by “But she is doing fine!"
I rushed back into the waiting room with my aunt who had seen the look in my face when I saw her , and told everyone the good news. We were elated! The doctor finally came out to us and told us that everything went without a hitch and she was VERY pleased. Pheww!. .talk about suspense.
That night we came in and she was bundled on the bed with tons of blankets wrapped around her to slowly raise her temperature from the anesthesia. Seemed so helpless, but she was there, and alive. I reached under the blankets to hold her hand and her eyes flew open with a start. Her arms and legs started moving around and I could see panic in her eyes. I think because the weight of the blankets, she thought she couldn't move. I spoke with her calmly and told her not to fear and that is was just a lot of blankets that was keeping her from moving. She finally calmed. and when I asked her if she understood that everything was ok, she nodded. Another big relief for me.
The day after surgery, we were visiting her at the 6PM visit. We walked in and she was wide awake. My wife and brother and his wife were there and she was amazing. She was smiling at jokes, even to the point of laughing, mouthing more words, nodding her head to questions. It was such a relief.
Unfortunately, since then, she has been fairly unresponsive and much of the time has been sleeping or has that blank stare. This truly has been a roller coaster of emotions and fears. We know she needs her rest and the doctor says everything is OK. They have turned one of the drains off and plan on putting in a shunt to regulate the pressure. The nurses said that she actually was pointing and doing things on command, which is awesome, as she hasn't for us. The doctors are very pleased with her progress at this time.
The road has been long and steep and will continue to be, but we do have some hope in all of this. The people I have contacted from this website have been totally amazing and supportive. I thank you all. Even though we don't have an amazing recovery and success story YET, we know its coming with time. The simple fact that she IS alive and still with us IS a miracle in its own right. We are all thankful for this. She WILL continue to improve daily and we make sure that we see her each and every visiting time. Our family has pulled together quite well in the face of this crisis and even though we have had a few spats here and there due to stress and pressure, we always regroup and realize it is MOM we are here for and what is REALLY important are her needs. I will continue to update her progress and am willing to answer any questions or comments anyone has.
Thanks to everyone.
Update 9 Mar 2001
Wanted to do a fantastic update on Lois' progress. Went to visit last night at 6. What a visit! As soon as I walked into the room I knew she was back. We all have been so afraid since she went unresponsive to us. Its been nearly a week since we got anything from her. ANYTHING. She had done a few things for the nurses. .maybe we just had bad timing. Last night, she was smiling, nodding and more. I was asking her to start thinking about pointing her finger for me. Not to rush or stress, but to give it a shot. Nothing at first. A few minutes later she squeezed my hand, looked at me, looked down at her hand, raised it out of mine and pointed and then smiled. WOW ! Then did it again a few minutes later just to show me she could. .without asking!
I asked her to PLEASE give Dad a big smile and a kiss for me when he came up for the next visit. "You know the doctors have been saying you've been fine all week, but you know how Dad is.", and got a big smile. I meant just to say to give him a smile. Dad called me after the 9 visit and was so excited. He told me when he came in and she realized that both her sister and he was there, she smiled big for him and tried to raise up and give him a kiss! Dad didn't even know I asked her that!
The tests that were done on Monday to see how the coiling worked were so positive, they don't intend on checking again for nearly 6 months! Mom is scheduled to have a shunt put in on Monday, and we are all very positive about her progress!
Thanks to everyone for the positive encouragement and letters. I know this isn't by far the last chapter but only the beginning of Mom's recovery. And there will be ups and downs. But Wow. This has been an amazing UP!
Love and Peace to All
Update 16 Apr 2001
Hello everyone. First of all I want to say THANX to everyone who has been supportive and written with letters of encouragement. Also, I hope those who I have written have gotten some hope from my letters about Mom's progress, despite her bumpy road. .and it has been a roller coaster that, as one of Mom's nurses said, " wont let you take your hands off the hand rails. ."
Soon after the last update, the Dr's internalized the drains and put in shunts. Because of a pressure build up they realized that they had to install DOUBLE shunts. The first surgery went great. Mom was ok but unresponsive. Unfortunately, one of her eyes grew extremely dilated soon after the surgery. The CT scan revealed that pressure was suddenly building up. .and dangerously so. The Dr's had to perform an emergency installation of another external drain. At least one of the shunts wasn't working. We almost lost her the Dr said. There was more pressure there than when she originally came in. . 3 more times this happened. .each with the same results. .An installation or revision of the internal shunts, followed by pressure build up and total unresponsiveness. All this was REALLY wearing on us. and of course her. Each time we would be hopeful of the surgery, only hopes to be dashed by another pressure build up. The Dr's said what was happening was her aneurysm bleed was so bad there was MAJOR scar tissue around her brain. .forming pockets of pressure in a honey comb-like webbing in her head. One pocket would be relieved, only to be replaced by another pocket that wouldn't drain correctly. She would have only brief periods of any responsiveness, followed by a major shut down time when she would be totally out of it.
Finally after the last failed shunt installation, the Dr's were puzzled but tried a different approach. They installed an external drain in her spine. They said what this would do was reduce the pressure BEFORE it got to her head, and possibly create an area for the fluid in her head to go to. Since her spine had no scar tissue and no problems with getting blocked, this seemed logical. At first, it was GREAT. She became responsive within hours of the spine drain being installed. She was VERY aware suddenly and it was WONDERFUL! They drained a lot of fluid from her spine over the next 48 hours. .Unfortunately, she took another downturn. She had to go back on the ventilator, and went unresponsive AGAIN. .ARRRRGH! They basically figured out that they might have drained too much off, clamped the spinal drain, and increased her ventilator settings. Over the next 2 days, she came back around. .slowly. .She slept A LOT, which was fine, and within about 72 hours was coming back STRONG! We visited her this past Wednesday night and she was AWESOME! Smiling, laughing, mouthing words to us, pointing, squeezing our hand on commend. .Its been amazing. She went so long with no responsiveness or very little, and now she is back and doing much better. She actually has had insomnia the last few nights, so when we visit and she is in a deep sleep, we let her rest, and just whisper to her that we are there and everything is ok. It seems that what MIGHT have happened is the spinal drain created a negative pressure in her head, and actually got the shunts to work. Kind of a vacuum clearing the way. Its been 5 days since the spinal shunt was turned off and all is well. She is totally off the ventilator and her CT scans look GREAT! At one time the Dr's were thinking they might have to keep the spinal drain and internalize it, but since that time, it appears they might not have to. We hope this improvement continues and we can get her on to rehab. Its been since January 30th that Mom has been going through this and in NICU. Out of all those weeks we have only had about 12 or 13 days that she has been really responsive, but as things progress we hope this will increase as well. We know she is still there, knows us all, knows basically what's going on. Her sense of humor is intact, laughing at things we know she would find funny. and she has, on responsive days, that loving look that only mom has.
For all those out there looking for hope and information, know that in this area and these Dr's (which are among the top in there field), have said that Mom is truly a miracle. Mom's aneurysm required 20 coils. The average, from what I understand, is only about 4 or 5. Her bleed from the aneurysm was as bad as ANY, if not worse, than Dr's here have seen. She has been through complications and situations that have BAFFLED the Dr's here, and basically the Dr's said that the book is being written as they go. No one they know of has been through so much, only to bounce back. and still be with us. So to all you victims of this and the families. .keep the hope. The Dr had a patient come in recently with a devastating bleed. The family said "I bet no one you know has had a bad of one as this and still come back". The Dr pointed over at Mom's bed. .told them that Mom's was worse, said how well she has come back. .and it gave the family hope.We hope this gives everyone out there hope as well.
Love and Peace
Update 6 Jun 2001
My Mom was starting to get better when I last wrote. They had removed the external spinal drain and after 5 days she was doing great. Unfortunately, that didn't last. She went unresponsive on the 6th day and the Dr wanted to go ahead and install the spinal shunt. During this, they had noticed that when she was given the drug Diamox, a few hours later, she came around more. Come to find out, Diamox has a side effect of reducing the production of spinal fluid. The next day after her going unresponsive again, they started giving this to her in small periodic doses. She started to come around, and we felt that if this might do the trick, we owed it to her to hold off on the surgery till we see what would happen. The Dr didn't like this too much, but the family got together and felt that if we could possibly spare her yet another surgery, we should try.
She was almost immediately removed from NICU and placed in a regular Neural room, which left her unmonitored. This scared the hell out of us because for the first time since all of this, we couldn't look up and know immediately how she was doing physically. Immediately after leaving NICU, she developed an infection which made her responsiveness drop to nearly nothing in 3 days. Antibiotics were brought in and she seemed to come around a bit, and was transferred to rehab. After a few days settling in, she seemed to do rather well. They were dressing her and trying to get her to some sense of normalcy. She still had her trach collar and peg feeding, but everything was done to get her back in a routine. This went well after the third day being there, but after a GREAT day on Thursday, Friday came leaving her totally unresponsive. That Saturday, they had her in a wheel chair and dressed. We took her outside for the first time in 3 months. .and she was so out of it she slept the whole time. She didn't rouse AT ALL while we wheeled her around. We knew this was not good.
Monday came and confirmed that her scans showed increased pressure once again, and obviously the Diamox has stopped working or was not doing enough. By the next Wednesday, she was in respiratory distress and was readmitted to NICU. .We were crushed, but were glad that the Dr was going to continue to try to get her back. We were all afraid she had given up. We also found out that day, that she had gotten a Vancomycin Resistant bacteria in her urinary tract. She was moved from her sunny, bright room, to the dark gray room she was in for nearly 3 months when she first got here. Back to square one. .and we all had to wear gowns and gloves whenever we got near her and in her room. That was VERY difficult, not being able to touch her skin. Obviously, this is a danger of long term hospital stays. She also had some bronchial infection. The Dr's scheduled the surgery for the spinal shunt. and we waited.
The surgery was successful. .at least for a while. Part of the pressure on one side reduced, but there was still her left side that remained high. Then she went totally unresponsive again. this time not waking up at all. The Dr's scheduled another shunt installation for her head. This would make 3 shunts in her head and one in her spine. She was moved to a monitored neural room as we waited to see if she would get better. At least it was sunny and monitored. .but she didn't wake up. She was asleep for nearly 4 weeks. Three more surgeries were done, revising the shunts to try to get them to work better. Obviously there was much scar tissue keeping them from working on a continuous basis.
Finally last Friday, the last revision, we knew something was different. We could just tell, even tho she hadn't woken up yet, that this may have been the one. Sure enough after nearly 4 weeks of unconsciousness, she opened her eyes last Saturday morning. She has been making gradual improvements daily, but she remains mostly unresponsive. We are concerned that the pressure is building again as the last visit was not any better than the first several days where she was making good strides. Her scans have returned to normal, but we were informed that she now has a bacteria in her spinal fluid. This is being treated and Dr's are unsure if it is anything serious.
We still have to wear gloves and gowns, but at the end of every visit, my gloves come off and I caress my poor mom's face and hold her hand, trying to let my touch comfort her. I of course wash thoroughly before and after contact with her. .for her and my sake. .but I can't deal with not touching her skin.
We pray things get better for her. She has been in the hospital 4 months as of May 30th and the family is trying to deal with this the best we can. We haven't lost hope, but it sure is getting harder to stay positive. We want Mom back and we all realize that she will have certain disabilities in one form or another. But if she can regain responsiveness and react to her surroundings and know what is going on, we know we can make the rest of her life stress free and happy.
Mom was such a happy and vibrant woman who I miss terribly. She is one of my best friends and I can hear her words like she was here right now telling me, "If I end up a vegetable hooked up to a bunch of machines, pull the plug and go on with your life." It's as if she knew what was going to happen years ago. She even did a living will in case this happened. I never liked talking about this subject with her but she insisted. However, we kcouragement is appreciated.
Love and Peace
Update 25 Jun 2001
We have a GREAT update for Lois today. . Last update, Lois was finally awake after an extended period (nearly 4 weeks) of sleeping 24 hours without being able to rouse her. The last shunt revision seemed to go well and although she was totally unresponsive, she WAS awake. This went on for a period with NO response from her at all.
One evening as I was lying in bed, nearly asleep, I was wracking my brain as to what was the difference was between now and when she was in rehab right before she went unresponsive. My Dad had said from day one out of rehab that she hadn't been the same and he was right. but what was the difference? We were afraid her oxygen level got too low and maybe caused more brain damage or something. We were unsure and it totally puzzled us. Suddenly while lying there it hit me. The very last day we had a good day was in rehab. .and that very day was the day they had changed her anti seizure medication from Dilantin to Tegretol. We kind of assumed that because she was getting double doses to raise one level before they lowered the other, was the reason she went out of it. Then, immediately after, had the pressure problem, was moved back to NICU and hadn't been the same.
I woke my wife in bed and told her what I thought and she agreed it was worth a shot. It stuck in my head so much I wanted to get up right then and call the Dr's, but I knew that wasn't feasible. I didn't sleep much that night and was ready to tell the family and the Dr's my theory. The next morning I told my Dad and he agreed that it may have at least contributed to her situation. He was going to the hospital that morning anyway so he asked the nurse what the difference was between the 2 medications. She wasn't sure and called the pharmacist, wrote down some notes and basically dropped it. Dad told her what I had said about the timing of the medication and her unresponsiveness, so she said she would consult the Dr.
We also found out she had a cavity or 2 that needed care earlier that week. She had an upper plate that unfortunately got left in for nearly 4 weeks or more in NICU when she came in. We assumed they took it out and they didn't know she had one since she kept so tight lipped most of the time in the early days of this. This was another idea we had about her unresponsiveness, is that if she had a bad tooth ache, she would be much less likely to respond. She had a tooth pulled and was given some pain pills that same day we told the nurse our theory. When that was done and when we left, she was resting comfortably. That night Dad called to check, and the nurse said she was resting well and the only change was her medication back to Dilantin.
The next morning Dad called up to the unit. The nurses were VERY surprised that she was MUCH more awake that morning than they had seen. Dad called me and told me and he immediately went up. When he came in she was smiling and mouthing words and pointing and trying to communicate. It was awesome. We didn't know and still don't know what caused the change but it seemed like a miracle. Had it been an allergic reaction or just the medication itself? I came up immediately that morning and it was so great. She was nearly as good as she ever was since this happened. She was pointing on command, mouthing words to us, smiling and most of the things we have been waiting desperately to see. The Dr was amazed and totally excited , but remained unsure and uncommitted as to what may have caused the change.
That was Friday, June 15th and Lois is still making improvements. She has been sent back to rehab and we are hoping she can stay there for a time and get help. The response isn't all the time or consistently as good, but it is there and like a roller coaster we will ride it thru. We have had down days where she hasn't woke up much at all, but the ride has gone back up. The best day was yesterday. It was a slow starting morning. .awake but no response. My wife and I got there yesterday afternoon and she was up out of bed in a wheel chair. They had come in and put her there about 20 minutes before we got there. She was fast asleep and we just hung out and decorated her room. When they put her back in bed, she started coming around and was awake the rest of the afternoon. She was doing things on command, smiling, and mouthing things to us. She even saw my wife come around the other side of the bed. I was holding her hand and she lifted it, reached up for my wife and pulled her to her for a big hug. YEAH!!
We are praying she can get back to a point where she can come home and not have to be put in a nursing facility. We have dealt with her condition so much in the last 20+ weeks and have seen what the nurses do and realize that we think we can deal with doing this with the whole family pulling together. As it is now, my wife and I alone spend between 4 to 6 hours with her daily at the hospital. We help the nurses and because she is stable physically they only are needed for 20 minutes every few hours. Can we do this? We spend so much time as it is, wouldn't it be easier if she was right down the road instead of half an hour away? AND she would be in her own home where I KNOW she wants to be. We are pondering options now and would love feedback from families who have taken on this task.
Thanx to everyone for the supportive letters! They have definitely helped us through this. We hope this also gives people going through this some hope. Never Give Up! Never be afraid to question the Dr.'s. Be PROACTIVE in your loved one's care. They need you now more than ever.
We know this story isnt over. .hopefully this is truly the beginning of Mom's story of recovery. We know there will still be ups and downs, but as long as the ups still come, there is always hope.
Love and Peace
Update 31 Jul 2001
We have another wonderful update on Lois's progress and wanted to pass it on. We often wondered if our "happy ending" would ever come. with all the challenges Lois went thru in these last 6 months, many, including myself, wondered if she would ever return to us. We are VERY happy to report that Lois has been making GREAT progress and is ready to come home!!
Last update we mentioned that Lois was doing some better, and we are ecstatic to say she has made improvements by leaps and bounds. She is speaking now, altho sometimes more than others, and some times a bit slurred, but that is improving daily. I think she feels a bit self conscious about her voice when she hears it because it is slurred sometimes. .and whispers mostly, but that IS getting better. She totally blew the therapists away the other day by completely verbalizing her name, how many kids she had (complete with using her fingers to say "2" as well), what her husbands name is, and what she does for a living. As we knew all along, she is very much aware of everything going on. .sometimes we can tell it makes her sad and frustrated, but that dosn't last long and we can always get a smile eventually.
She is gaining more and more control of her right side and doing things that the therapists said a few weeks ago she wasn't doing , like controlling her environment, making herself comfortable, telling us what she wants and doing things like brushing her hair and teeth with a bit of assistance. She is now also eating pleasure foods such as pudding and apple sauce and Pepsi. The Dr's feel confident that she will be able to eat a diet within a fairly short time. With only a bit of help she is doing this on her own. A few weeks ago the Drs and therapists were not very positive because of her not doing things on command. Now we know that she just dosn't see the need to "point her finger" or "stick out your tongue". She does things that make sense and have a reason.
A week or two we spoke to her about coming home, and that we would be taking care of her. We told her bottom line is we needed her help and the therapists are just there to help her to HELP US. Mom is a very selfless person who would do for others rather than herself. .so we put that logic to her and almost over night she started to respond to the therapists more. As a matter of fact, the very next day is when she told her speach therapist all those things when asked.
Our original plans were to have her go to a rehab facility/nursing home for a few months to get her stronger and get her home ready with ramps and so forth for her. She was IN TRANSIT in an ambulance to the new place when they called my Dad on his cell phone and told him the insurance company had backed out and she couldn't come. .ARRRRGHH!! That was a most frustrating day to say the least. No other facility would make an offer for her care that was within a 50 mile radius, so we knew we had to bring her home. So, knowing that she would never get any better in a facility that we would only be able to be with her a few hours a day, we set it up, and she will be home this Friday, almost exactly 6 months from her being admitted to the hospital. We know she has a long road to go, as we all will. My wife and I are moving our home based business to their house to watch her during the day, at least until we can get her mobile and bring her here during the day so my father can work. We have all been trained and will continue more this week, learning more and more about how to care for her. She will have therapy coming to the house for the next few months. .and with us working with her, we know she will continue to make major improvements.
We know it wont be easy, but we are willing to do whatever it takes to make her life happy, and we feel that with all of the family pulling together, we can all still have a life ourselves. Any comments or advice would be appreciated.
For all of you going through this horrible ordeal, know that miracles DO happen. .Just 45 days ago I was wondering if I would ever be able to get a hug from my mother or hear her say "I Love You". Now I get big hugs and kisses from her every day right before she tells me how much she loves me. She is coming home!!!!!
Update 9 Sep 2001
As I sit here at my computer, I listen to my Mom sleeping soundly. .on my couch. Thats right. .Lois is not only home. .but easily transportable and very mobile. She just made her first trip visiting today since January 30th when this happened to her. As you may have read in the last update, Mom was about to come home and doing pretty well. We are very pleased to report that she is adjusting well at home now, and getting stronger every day. When she first came home we all were scared to death. the unknown really does that. not knowing what to expect... not knowing what really comes next. We had no real formal training and Mom was pretty much reliant on EVERYTHING from us from the tube feeding to cleaning and changing. My wife and I moved our home based business to Moms home and began getting into a groove with her care. We have been very fortunate to have a great insurance company that provided her with a wheel chair and 12 weeks of a home care worker 4 hours per day as well as 60 visits of Therapy and nursing care when needed. The last visit from Physical therapy was great as she saw much improvement. We scheduled it so the therapist would come in and show us some exercises, we would learn them and do them with her daily, and she will come in once a week or so to measure her progress and help us get her to the next level. When she first came home she required using one of those awkward and clumsy Hoyer lifts. They made her feel very helpless and unsafe and were a BIG pain in the butt. Now she stands with help and pivots into her chair and now into the car! Mom is standing with a little assist and getting stronger by leaps and bounds. She is even taking some small steps. Walking is next!. Considering she was nearly totally inactive for 6 months, everyone is VERY impressed by how far she has come. Her right side is still fairly week but obviously getting better. When she left the hospital there was very little movement on the right. now she is getting more and more functional use from her leg and arm.
She is eating much of her diet on her own.We have been able to cut the tube feedings from 7 cans a day to 5 on most days, and that is improving weekly. Her responsiveness varies on many days according to her moods...and she obviously isn't as alert as before this happened, but she is still Mom...laughing and joking with us...giving us a hard time and smiling the whole while, loving and kissing and hugging us...which is AWESOME. Now that she is mobile and able to basically come and go when she or we want, it takes a huge amount of stress that has been weighing on us all. Getting her in the car and out and about made EVERYONE feel better
Her voice is improving some although slowly. It can be very slurred and unintelligible at times and at times clear as a bell. As the home care worker and her physical therapists pointed out to us, she is still very much there, very much a vibrant and wonderful woman, just trapped for the moment in a body that dosen't listen to her all the time.
Mom is due for a angiogram soon and we are sure the results will be good. Being out of the hospital and home has made a huge difference in ALL of our lives. Home care is obviously not for everyone...especially ones not in our situation. We feel very lucky to be able to be her caregivers. If we had regular jobs instead of owning our own business, she would have to be in a nursing facility. Dad can stress out at times, but now that she is mobile and can come with us and hang out, it takes the pressure off him quite a bit and is relaxing some with the situation. We have been trying, along with Moms sister, to give him breaks in the evening as she still needs moving and possible changing every 3 or 4 hours. Now that she can come over here, we intend on having her sleep here for 2 or 3 nights a week giving him major breaks and respite. She is making herself comfortable more and more which should reduce the amount she needs to be moved.
She has a catheter which REALLY helps and dosen't need changing every hour or 2. The way we figure it, until she is able to get to a bathroom basically on her own or with some help, its a lot less stressful on her not having to be changed that often. We were warned that it was inevitable that she get another urinary infection soon, as she had 2 of them in 4 weeks in the rehab facility. We are proud to say there has been NO illness in the over 5 weeks she has been home and in our care!!
Other than that, we are just so pleased with her progress. If we had known in May, when she was totally unconscious for 6 weeks, that she would come this far, we would have felt obviously so much better. but, one never knows what tomorrow brings...and we all made it through.
For those looking for some hope in their situation, please consider my Mom and know to NEVER give up. If you read back on this narrative, you will see that she has been through more than many. A giant aneurysm requiring 20 coils, a VERY bad bleed, 11 shunt revisions and over 6 months in the hospital. yet she is here. interacting with the whole family and still giving love like only Mom can. We are so fortunate to have her still alive and with us mentally...and we thank you all for your support and encouragement through the most difficult time in our lives. We will keep you all informed as her progress continues.
Love and Peace
Update 11 Feb 2002
Wow!..Just reread my narrative about my Mom and its been a LONG time. Last update was Sept 9 01 and here it is Feb 02. A LOT has happened since then, both good and bad.
Lois made some excellent progress in the next few months. It was still a roller coaster with her going up and down in responsiveness, but in general she was doing so well that by December 3, 01, we had her totally weaned off tube feeding and had the feeding tube removed. That same week she pulled her catheter out...AGAIN...(4th time) so we decided to keep that out as well. It was a GREAT Thanksgiving, with Mom using her walker to get to the dinner table, (with help) and eating her diner completely on her own. We all took a trip to the beach after that with my aunt and uncle and had a great time. She wasn't as alert at the beach, and we were starting to notice a cycle of her standing up for long periods and going down in responsiveness for several days after. The whole holiday season was CRAZY.
Right before we had her stomach tube removed, we were able to have a wonderful conversation that was so clear...but the content of the talk broke my heart. We were sitting on Mom's front porch enjoying an unseasonably warm day, when she started speaking... "30th...Tuesday", she said. I replied, "January 30th? When you went in the hospital?" She nodded. "Tuesday, January 30th...the end of my life..." I was shocked...not only did she remember the day and date her aneurysm burst, but she was expressing HOW she felt about it. It was HORRIBLE to hear her say those things, but I was so excited we were sharing a meaningful conversation. I mean, sure, we had talked before, at least as much as her speech would let us. It was very up and down, varying from VERY clear to non audible whispers. But this was VERY clear and took me off guard. I said, "Do you really feel that way?" She nodded... "But Mom, I know its been tough, but look at the good things that came with it. You got to finally retire from your business, and you get to spend A LOT of time with Virginia (my wonderful wife) and I.
She basically expressed that she felt bad we had to take care of her...but I redirected the conversation to more upbeat things and we had such a wonderful talk. I had missed talking to her so much. It was like she was back and things were ok. We were very glad, as all her home therapy visits were done at the end of December, and her home care worker was done in early January.
Unfortunately, (I seem to say that a lot in this narrative...hehe) things took a downturn. Her responsiveness and alertness went down slowly but surely...down, down down...until by the holidays she was talking very little, and seemed to be very depressed...or just out of it. We didn't understand but we soon found out. We had a HUGE snowstorm here in NC in the beginning of January...snowing us in. Dad was taking care of Mom without help as we couldn't even get out of our driveway, and the health-care worker couldn't either...and her alertness was slipping away. She was running NO fever and seemed physically fine, but we knew something wasn't right..
Finally after the snow had let up and the roads were a bit clearer, she was so bad off she couldn't even hold water in her mouth. I agreed with Dad she needed to go to the emergency room. After the ambulance blowing a snowtire...twice...they finally made it to the hospital. Her temperature was only 92 and a VERY low blood pressure. She was totally out of it. Come to find out she had a major urinary tract infection again...and it was a bad one. They felt it had gone into her blood and they couldn't even say if she would make it. She was in rough shape...and we had no clue other than her lack of responsiveness that anything else may have been wrong. She never ran a high temperature, and we had no idea a lower temp could mean bad things. But here she was, in the hospital, back to square one, and mostly unresponsive.
They told us her responsiveness might never be back the same again as being this sick can really put those compromised way back. I should have known better. They didn't know my Mom!
After 2 weeks n the hospital, she came home. Unfortunately we had to put the feeding tube back in as well as the catheter. But Lois has been coming back STRONG. Since being home for the last month, her speech and mental capacities have staggered everyone to the point where she was responding to everyone and everything. With her being back at the hospital, it reset her home health visits and therapy visits, and she has been responding to them wonderfully. She has been so alert and speaking so clearly it has been WONDERFUL. We can carry on conversations, and she hasn't had that blank stare she got so often...until Thursday...and this is where the family may be able to help me out...but maybe not, as we have been told her situation is VERY rare.
While in the hospital last year, she had over 11 shunt revisions. the pressure in her head had to be kept so low they put in a spinal shunt in her lower back to drain fluid...with NO valve...and then another in her head when that didnt work right...with NO VALVE. That last one seemed to do the trick and is when she really started coming around. I mentioned before the roller coaster. I charted her up days and down days and tried to make sense of why she would go down. It all seemed to revolve around when she spent al ot of time standing.
Since she has been home from the hospital with the infection, we hadn't had her stand up for any length of time other than to just pull herself up and standing and pivoting to her chair, couch, bed etc. Her mental capacities and understanding and speech and comprehension had been going up nearly DAILY. Occupational Therapy had made visits and exercised her on the floor. Physical Therapy had been doing a lot with her on the bed restrengthening her trunk muscles and such...and only briefly standing up. Thursday, as instructed, we took her to the parallel bars, and had her stand up. She decided to push it a bit further and take a few steps, and was standing longer than she had since being home. She did wonderful and was very pleased with herself. Unfortunately the next day marked a downturn in everything. She became quiet...had that blank stare again...wouldn't answer many questions...and yesterday was even worse. The little she did talk was a quiet whisper again. Everyone was trying to ask her what was wrong but she wouldn't answer much...just stare, an occasional smile. She looked confused and kind of blank.
I explained my theory about her fluid and pressure and that I was on it, and would find out why she was feeling like this. I would get a nod when I asked her if she wanted me to pursue it. I plan on consulting her neurosurgeon again here in Raleigh, but when we broached the subject last time with her, she said that the CT scan would show if there was too much draining. What we are wondering is, can the fluid be draining enough to impair her mental abilities, but not enough to show up on the CT scan or do any actual physical damage? Does the brain fluid have that much of an effect that the slightest difference in pressure can cause this kind change in responsiveness? As I have said, we marked her ups and downs and we seem to have a correlation, but what to do? It was so difficult for the neurosurgeons to get the pressure right in her head for her just to be alive, will they even think about redoing something that may put her back in jeopardy?
If anyone in the family has any suggestions or comments about this, I would love to hear from you. It may take a bit of time to return your mail, as it is very hectic and we are not on our computer nearly as much.
I know my Mom will make a wonderful comeback from this. Earlier this week was the most awesome time since she has been home. She went into the hospital a little over one year ago and has come so far. Even if it means NOT working on walking as much and having her mostly wheelchair bound, it is a fair trade off to have her with us mentally and be able to communicate. We will figure this out and respond accordingly and she will be fine. The way I look at it, things are so much better now than they were 1 year ago today. I am thankful for that everyday..and when things look down, I remember her in the hospital with tubes down her nose and drains from her head and her totally out of it and say..."It could be worse"
Thanx to everyone who has been there over the last year...Its meant a lot to our whole family.
Love and Peace
Update: 8 October 2004
Time flies so quickly...in the blink of an eye, over 2 years has passed like yesterday but a million years ago.
My last update was in February 02. We were battling with mom's ups and downs..Trying to figure out what was causing her roller coaster. Lois battled urinary infections every 4 - 6 weeks. Her inactivity and stroke seemed to bring them on like clockwork no matter what we tried. We did the daily dose of antibiotics, but that left her totally a mess...out of it...frustrated and confused. We decided it would be better to give her the antibiotics for 7 days a month than have her out of it 90 % of the time..
Her ups and downs continued, with us basically realizing that they were a part of her and our life now. There were times when Lois worked out and exercised HARD with me. She came so far as for me to even dream she may walk again. She would finish a work out and be so VERY proud of herself as we were. Her speech seemed to continue to worsen at times making conversations difficult but its amazing what you can understand without speech. At times she was totally there...obviously VERY aware and understanding of what was going on...and still other times she would stare blankly. Those were some of the tough times. It was like she would visit. I relished and cherished the times when she was there. She would look at me as only a mother can...with love in her eyes...and sadness behind them. My wife and I would care for mom from about 11:45 till about 4:30 or 5 PM daily during the weekdays. This allowed my father to continue the business he and Mom started 25+ years ago. In April 03 we were approved for the CAP program, allowing more time from a home care worker giving us till 2 PM daily..This was a GodSend but it was difficult letting that time go with her..especially on the good days. We would still do things as a family...go to dinner...go to the mall or somewhere nice to hang out. Dad did his very best to take such good care of her. The stress of the situation made it difficult at times, but we stuck together and kept moms best interest in mind. Dad willingly took care of her every need for 18 hours a day, constantly telling her how much he loved her...and always telling her it would be ok. It was hard for us all seeing her like this, but we gave all we had to make her days as good as they could be. We knew she HATED us giving up so much to care for her but we would have it no other way.
We got to the point where Lois wasn't admitted to the hospital at all for over a year. Her ups and downs continued, but we seemed more accepting of them but she did not towards the end of 2003. Lois became more and more frustrated and more than a bit angry. I feel she became more and more aware of what was happening and her condition and the frustration mounted inside her. Good Times were still very good but the bad days got much, much worse. We tried antidepressants, which seemed to help for a time and actually seemed to help her think more clear and aware..Normally that would be a good thing, except it may have made her even more aware of the condition of her body, and what her family had to sacrifice for her. At one time, during an especially clear moment, I asked her how SHE was...how she was handling things..for the first time and very clearly, she said, "I'm accepting it" That was a wonderful moment. but short lived as the roller coaster continued. The lows got even lower, and her frustration got worse. She was starting to have some sort of spasm and seizure, which the doctors couldn't explain...this scared her badly, as well as us. The episodes got worse and no one could explain why. We would try something or think we got a handle on it when she got a bit better, only to have our hopes dashed by another episode..Her frustration grew as well.
I found out before I went out of town with my wife for 5 days that the weekend before she was with my aunt (her sister) and uncle and my father..My dad had asked her what she wanted...her simple reply, "To Die" This was very upsetting to say the least, and I realized that even though she was VERY "there" and very coherent, she was VERY miserable. From her actions lately, that was NOT a surprise.
The week before the end we had her in the afternoons as usual..On that Wednesday the healthcare worker called and needed some help with her, as she refused to get up..I went over and when I saw her it was as if she hadn't seen me in years. She was overjoyed and hugged me and smiled so big and kept saying PHEW. It made me feel so good. It was almost as if she was thankful she got to see me in time...in time for what?? Something was not right ...she was refusing to eat or drink despite being quite alert. I told her that she really had to or she would end up in the hospital again. She looked at me straight in the eye and said, I know... I told her that her having to go in the hospital would make HER miserable and be a very unpleasant thing for everyone..She eventually decided to eat and drink, although much less than usual.
Her mood seemed to improve in the next few days she seemed rather quiet but at ease and not overly frustrated..
I got the call on Friday night / Saturday morning that she had another episode of some kind of a seizure or something... She was taken to the emergency room unconscious and not breathing on her own, and had to be put on a ventilator.. For 3 days she didn't regain consciousness ..all the tests came back negative, but the doctors felt she may have had another brainstem stroke which could take days and days to even show up..We were devastated in realizing if she ever came out of this , she would be in even worse shape..Mom left a living will stating her wishes and we decided to honor them. Her vitals were very low and she still had not regained consciousness. They even had to give her a shot of something to bring her BP up so we could get the family together.. With her family by her side, they gave her morphine for any pain she may be in and took out her breathing tube. Mom being the fighter and stubborn woman, she was held on..and her vitals actually improved but didn't regain consciousness. We stayed by her side non stop..they eventually moved her to a private room so we could be with her at all times. Four days passed..We found out we could keep her pain away with a morphine patch..so we decided to take her home so she could spend her last hours in peace. It was a cold rainy evening that Thursday... The hospice volunteers brought her in covered in blankets to her own bed. The family was all together and at least thankful she could be at home. My wife lit candles around her room. We played her favorite music..It was very peaceful and how she would have wanted it. We all spent the evening with her...telling her it was ok...and she could go when she was ready. She never regained consciousness but she seemed so much more at peace. We all said our goodbyes and cried and laughed at memories of times past.
The next morning was sunny and bright..the temperature had gone up and it was a gorgeous spring day. Birds were singing and sunlight was shining in her bedroom..Mom finally took her last breath peacefully that morning.
We all realized that it was my fathers birthday that day and although we were all so incredibly sad that it happened that day, we also realized that this was her final gift to him. It was all she had left to give, but yet the most precious gift.. Her peace and his freedom..
Mom was cremated and we spread her ashes at some of her favorite places. She surrounds us in spirit. We know beyond a doubt that this is how mom would want it..Isn't that how someone lives on? When you know without a doubt how they would react or what they would want or what they would say in a certain situation, its their spirit and life force and influence guiding your actions and thoughts.. She comes to me in times of sadness. She says. "Mikey, don't you dare be sad."
One day while going thru her things a few weeks after her passing, I was alone and weeping. In her jewelry box I found a note on a yellow piece of paper..It was a bit tattered and obviously had been there for years..
not stand at my grave and weep
It really blew me away finding that. I spoke to her and told her I was trying to deal and would move on but she would be a part of me forever.
I'd like to once again thank the members of this site who have been incredible over the last 3+ years. Your support and the information has been invaluable. I apologize for taking so long to get this final chapter in to everyone. Its been mostly written for months but been so painful to relive..
Everyone that reads this narrative I hope gets some sort of usefulness and inspiration. Never, never give up. Even in an altered state, your loved one IS in there. Love them as you always have, if not more..be patient, understanding, and know their love has never changed either..Live EVERY day to the fullest...never have any regrets...and never let a day go by without telling your loved ones how much they mean. We are never guaranteed tomorrow..
Love and Peace — Mike Porteous
Discussion, comments, or questions: Michael Porteous
© Copyright 2001 Michael