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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, January 2005 (1 story)

Story 1. Received: January 6, 2005

I will try to make this as brief as I can. I have been journalling our "adventures" for awhile and for the sake of space, I will leave some things off. Someone may be interested in hearing my story. And it isn't over yet.

It all started in the summer of 2003. Up till this point I had seen Mom only once a year, with her living in Florida and I living in Virginia. My son and his family and I had been taking our summer vacations in July or August of each year and we would go with Mom to the Beach House in Fort Myers Beach that we had been going to for the past ten or so years. That particular summer we went down in July, and I noticed that Mom was a little shakier in her walking, though she seemed to get around ok. She did take a couple of falls that shook us up though she was not hurt badly, only bruised. Also she was more unsteady in the water and I had to keep hold of her when we'd dip in the Gulf. She seemed better once we got back to her house, and I made sure once we got back up to Virginia that I called her just about every day to check up on her.

A couple of weeks into August, Mom began to complain about not feeling quite right. She couldn't put her finger on it but she said she was feeling "punk" to use her word. She was spending a lot of time in bed and sometimes I would call in the afternoon and she was still in bed. She said she wasn't sleeping well at night. Then early in September her friend B called and told me that Mom had started talking about Dad, that she was waiting for him to come home, and that she was angry at him for leaving her stranded, and things like that. My father has been dead since the end of 1999. Mom hadn't said anything like that to me up to that point, but in the next day or so she began to say the same things to me over the phone about Dad. She was still complaining of feeling sick and wanting to stay in bed. Sometimes I would call and she would tell me B was there in bed (which she wasn't) or that Dad was getting ready to get up, or that J and Dad were taking a nap. I am J and I was not there. Sometimes her mother (my Nana, who had been dead at least ten years) was there, too. ... She was doing fine as far as taking care of her day to day routine, it was just that she was seeing people who weren't there and had no memory of Dad's passing away. She was so angry that he wasn't there. Once B stopped by and Mom answered the door in her bra and panties. This was totally unlike my fastidious Mother. Another time B came by and Mom had candles lit all over the house. She said a little handicapped girl came in and lit them. ... B and I both talked to Mom and explained to her that Dad was dead, and had been for three years. At first she was angry and hurt that we would say such a thing to her, but finally she remembered.

She went in for an MRI and it revealed nothing, but her doctor thought maybe she'd had a mini-stroke. She seemed to be coming out of that episode ok but I still was planning on flying down. Then less than a week before I was due to fly in, vandals slit the top of her convertible. That trauma threw her right back into it - "where is your father, he should be taking care of this stuff, he left me holding the bag again." She was just as bad if not worse than before only she did know I was coming down and was looking forward to it. I was a little frightened of what I might find when I got down there, and I was not sure I could handle it emotionally, but I knew I had to go.

When I got to Florida, Mom and I had a talk and straightened out the fact that Dad was not alive, and we did a lot of reminiscing to solidify that in her mind. We took the car and had it repaired ... I stayed for two weeks and when I left she was as good, if not better, than before. She was even walking stronger. The only unusual thing she would say was "where are the dogs? Aren't there two dogs?" We did have two dogs when I was growing up, but for as long as Mom has lived in Florida there has only been one dog. Still, that was minor. I believed our prayers had been answered, that Mom was going to be OK, but just to keep an eye on things I made arrangements to come back down in November and again in February 2004 just to make sure everything was ok. Everything was great both times. ...

I called Mom every day to see how she was doing, and everything seemed to be great until July. She started complaining of feeling yucky again and not sleeping, and then she started telling me really bizarre stories about her neighbors next door spying on her, and training their pit bull to hate her, and they had a little secret door through her bathroom where they were sneaking into her house. ... Once I called and she said she was taking care of some children, but she wasn't. "Isn't there a little boy?" she would ask. Over the phone I would talk to her and she would seem to clear up some. I started talking to her about moving up here to Virginia to be close to family...

A week or so before our scheduled flight down, ... Mom told me on the phone that she was upset because her mother and father and some other relatives were supposed to stop by and they hadn't come yet or even called, and she had cooked a big meal and set the table and no one was there. We talked it out and she realized that of course they weren't coming, and was even laughing about it, and said she would have plenty of leftovers to eat. So I started to worry again that maybe Mom had had another mini stroke.

...I flew down ... The house was neat and clean, and there were no signs that Mom had been unable to do her routine housekeeping chores. However, Mom had a wild story to tell. She said she had taken a walk the night before and someone in her neighborhood was having a party, and when she went into the house there were people all over the place who she didn't know ... but all the furniture in the house was exactly like hers. So she went upstairs and looked in the closet and all the clothes were just like hers. She was worried that someone was trying to steal her identity. ... I tried to tell her it was probably just a really wild dream she had but she said no, it was real... She KNEW it really happened, and nothing could talk her out of it. ...

While we were at the beach things really went downhill. Mom's walking got shakier and shakier and I had to pull her up off the couch and help her into the dining room chair and steady her everywhere we went. As the days went on, I had to help her in and out of bed, too. ... She was worried about a man who was staying near us, though, she commented a couple of times that she thought he was up to no good, but he was just a man on vacation with his wife or girlfriend... I was a nervous wreck keeping an eye out for her, fearing she would take a tumble. ...

At 3:00 AM she said she had to write bills. Several times she couldn't find the bathroom. She didn't want me to help her and became angry at me when I would try to help because I was being bossy. She went in the kitchen once and pulled down her pants because she thought she was in the bathroom. She heard people talking about her, saying, "What are we going to do with the old woman?" She had to pee, and five minutes later she had to pee again. This went on every night for five out of the six nights we spent there. ... So in the morning Mom was exhausted but didn't remember anything that happened during the night, and I was exhausted and getting really, really worried.

We got back to Mom's house ... I called Dr. G ... right away and he said she might be having something called sundown syndrome and prescribed Risperdal for her. He said it would knock her out at night and take away those psychotic dreams, too. I picked it up at the drug store and she had her first dose that night. The Risperdal did no good that night. ... Mom was up and down all night in spite of the Risperdal, and she even fell over a table in her room and ... she needed to be lifted up into bed... It was like her arms and legs wanted to curl up and be stiff. About 2:00 AM we decided that we better take her to the hospital in the morning to get her checked out. ... When she got up she was moving real, real slow but she was able to make it down the stairs. We told her where we were going... She thought we were being ridiculous but she went with us without a fight. In fact she even showed us where [the] hospital was located.

Mom stayed in the hospital two days. All the time she was there she thought she was either at work, at a party, or a guest at someone else's house. ... None of the tests showed anything except some atrophy in Mom's brain, which was age related. Mom is 74. There were no strokes, no vitamin deficiency, nothing. They tentatively put her in the Alzheimer's category. Then they said they couldn't keep her in the hospital any longer, and since there would be no one home with her, they could only release her to an assisted living place.

...Mom still didn't really know what was happening to her, but she was not happy. ... My uncle in Ohio (her brother) emailed over a Power of Attorney form that we signed so that any legal bases would be covered. Mom was at this point walking, and she knew who we were, and she was not happy because she was not in her own house, but other than that she was pretty much out of it. ...

...I walked over to see Mom as soon as I could the next day, Saturday. I noticed she was really slumped over more than usual and she was holding her neck funny. I asked what happened to her neck and she said a brick fell on it. Then she said flowerpots fell on it. She thought they had her working there, making her lift heavy things and taunting her. What was really going on I have no idea. ... The truth was, I just couldn't take it any more. I needed to get back home where I could have some emotional support and be in a normal atmosphere so I could think things out.

I called Mom every day and she seemed to be getting worse, her speech was slurring and she was having a real hard time remembering things. ... I called her every day and she would beg me to come get her out of there. It was torture for both of us. Finally on a whim I called her neurologist... They ran the same battery of tests on her ... and came up with the same thing - nothing. He told me that Mom did have some form of dementia, and he would prescribe medications for her.

Dr. D kept Mom in the hospital for three days, so she would qualify for Medicare in a skilled nursing facility. ... She was taken off the Risperdal and was put on Aricept for the dementia and Cogentin for the muscle problems she was having. It was supposed to relax her and improve her mobility. He said she would be having physical therapy every weekday. By this time she was incontinent and not even feeding herself much, unable to walk, barely talking, and unable to hold her head up. Tests came back negative for Parkinson's disease, but the doctor said that's what Mom's physical symptoms resembled. Mom also was given vitamin supplements and a diuretic because her feet were so swollen. ...

In mid October when I came down she had really worsened. The neurologist said her diagnosis was Lewy-Body Dementia and the outlook was pretty bleak. He thought maybe the Cogentin was too strong, so he replaced it with Sinemet. Almost immediately she improved and was able to feed herself and began advancing more in her physical therapy. Her confusion was still very noticeable though. She would pick imaginary things off her fingers and give them to me. ... She was afraid of the water on the floor. (no water was there). She was raped every morning. Once she told me I was there and I was raped, too. The nurses would pick her up and throw her against the wall. All this was going on in her head - the people [there] were wonderful to her. She thought a little gray animal shared her bed with her, and sometimes the nurses would share her bed with her, too. Sometimes a monkey or a bird would be in the corner or run across the room. Sitting and talking with her was a really strange experience. ... One time when I called her on the phone she told me she had been bad and she and all the other residents were in jail. I didn't know whether to direct her back to reality or not, so I just went along with her, as did her friends when they would come and visit. When I would disagree with her, she became angry, so I would just try to keep the peace.

It seemed the only course of action was to get Mom up to Virginia to be closer to ... me. ... I got Mom a place in ... the closest skilled nursing facility I could find and I was familiar with it, knowing it to be a clean and caring place, plus it was very close to my church. At the time I made those arrangements I made sure that it was a place Mom could stay permanently if her condition did not get any better, and that it would take Medicaid should finances run out. ... Her voice was getting stronger over the phone and usually she held a good conversation, though sometimes she would have some wild stories. She seemed to think the place where she was staying was filled with children, and some of them were treated very badly. ... Usually Mom was pretty happy, though. She had Remuron added to her list of prescriptions by now, which is an anti-depressant, and it seemed to be working. (Up until August 2004, Mom had never been on any medications and had never been sick.) I was glad to see the change in her mood. Her mood swings caused me to have mood swings. No matter how crazy she was talking, if she was happy, I was happy, and I was miserable when she was. I want more than anything to be doing the right thing for her, and I still have terrible days when I begin to doubt. ...

Mom's first week at [the new skilled nursing facility] went fairly well. I visited her on Saturday and she seemed in good spirits but she said on Friday night (her first night there) it rained in on her through the ceiling. That was the only bizarre story. ...

Mom still did not want to go to church ... She didn't seem to have any concept of Florida being so far away. She said she wanted to go back home. She said they were making her work too hard... I said, "You mean your physical therapy?" She said, "Yes, that too." I am sure she thought she was still doing her old job in Florida. ...

As I was leaving the little nurse who is there in the evenings told me that last night Mom had gotten out of her bed and wandered into someone else's room down the hall with her shirt off to use the bathroom. So I guess Mom is still roaming at night sometimes - but hey, at least she was walking!

...Mom said she wanted to hear all about her problems from the beginning, because she couldn't remember any of it. So I took her through everything, from the very beginning, so she would see why we were so worried about her and why we brought her up to Virginia. It was almost like I had my mother back. She was her old self and was even laughing at some of the things she had done. She said she understood why they were being so careful why she didn't fall, and the need for her physical therapy, and she seemed to understand why I had to do all the things I felt I had to do to protect her.

It was a very good visit and I left hopeful that maybe this is the beginning of a recovery for her - at least enough so that she can come and live with me... This is the first time in three months I actually had hope that Mom would be able to come and live with me instead of being cared for in a nursing facility. ...

...E [of the skilled nursing facility] told me that in spite of how she seems to feel when I am around, most of the time Mom seems very content where she is, is usually in good spirits, and the only time she seems unhappy is when they are doing some of the physical therapy with her. She has never voiced any displeasure at where she is or even stated to anyone that she wants to go home. It seems that when she sees me, that's mostly when those feelings arise in her. E said Mom is still in an adjustment period, and will need some time to fully settle in. ... I mentioned that I was having thoughts of bringing Mom home to live with me when she is able to negotiate stairs better and E said we would have to see how it goes in therapy. She said I would feel really bad if something were to happen when I was not there or if I were sleeping, if Mom fell or wandered away or something. She was right, I don't want anything bad to happen to my mother!

...E said that Mom may or may not remember things from the day before, or even hours before, and not to bring up a subject unless Mom did, especially if it was a painful one. (The funny thing is, of late Mom seems to remember things I tell her quite clearly most of the time.) ...

Later that day at work, Mom managed to get someone to let her call me. She said, "Do you know where to pick me up tomorrow?" I said, "Yes, Mom, I know where you are." She said, "Here at my job, right?" I said, "I know where you are, Mom. Don't worry." She said, "I want to come tonight and spend the night. I thought I was going to spend the weekend with you. I don't want to stay here." I tried to convince her that she was right where she was supposed to be, but all she said was that I was in cahoots with them (whoever "Them" is) and all but hung up on me. ...

We drove through L so Mom could see the Christmas lights. She was very alert and talked about the different styles of buildings and how she enjoyed small towns and traditional Christmas decorations. ... Mom was still good mentally on Sunday when I stopped by after church, and Monday when I came by after work. There was no depression or talk about me getting her "out of there." Monday afternoon E called to tell me that this coming Wednesday is Mom's last day covered by Medicare. Now I have to try to figure out how to handle financial matters. Mom will still continue to receive therapy under her secondary insurance, which is good, we have to get her walking up and down stairs! Monday night Mom began asking me more questions about what had happened to her and what the diagnosis was. ...

...I went in to visit Mom. She was great. ... I told her I was overjoyed that she was so much better now and she could help me make decisions for her now instead of me trying to do it all on my own. ... She told me a man in therapy was trying to flirt with her today. She was in very high spirits. Before I left I helped her into the bathroom and she hardly needed my help at all. I am encouraged that pretty soon she may be well enough to move in with me. The neurologist is supposed to be in this week and examine Mom and talk to her, and I will be very interested to hear what he has to say.

I am still taking it one day at a time though, trying not to get my expectations too high right away, but I felt much better about things than I have in a long time.

...Dr. D agreed with the diagnosis of Lewy-body dementia, but he seemed pleased with her response to medication and adjusted the times of when she takes her Sinemet in order to help her be even more clear headed during the day. K said Mom gets up every morning around 7:30 and dresses herself and waits for them to come in to take her to therapy, and she is always real careful when she gets up to walk. She said Mom sleeps through the night now, she hasn't heard of any more wandering episodes, and sometimes Mom gets up to go to the bathroom but then she goes right back to bed. ...

...Every day I am getting more and more hopeful about Mom recovering from this enough to move in with me. I have noticed no more hallucinations or wild strange talk, and Mom is laughing more readily and seems to be at peace more and more every day!

...Mom was clear as a bell and said nothing strange, and I am greatly encouraged that she is pulling out of this dementia. Her walking is stronger and since her nails were so nicely polished, she is having no problems with small motor skills. ... She had read almost all of her novel and spent a little time telling me about it, so I know she is comprehending the story. It is wonderful to just sit with Mom and discuss a book! It is something I thought we'd never be able to do again!

...She is doing so well mentally, but physically she still has a ways to go. Still, she was able to walk with a little help from me and hardly used the wheelchair at all. She said her lower back was hurting, but I think that was from doing a lot of sitting in different chairs with hard backs all night. ...

My main concern is that though Mom seems much, much clearer mentally, her physical state seems to be staying about the same. Some days she is more limber than others, and she can walk a little bit without help (from her bed to the wheelchair or bathroom) and she can walk with help, but steps are still a problem that will have to be conquered if she comes to stay with me. ...

My thoughts in all this vary from day to day. Some days I think she will do well in my house, surely she can practice and begin to navigate the stairs well enough and maybe we can find someone to come in on weekdays at lunchtime to take care of her lunch if she needs help. Then I begin to worry about her falling when I am gone at work, or when I am asleep. She seems to be so clear headed now, but how can I really know how much confusion she is experiencing? ... Most of all I want her to be happy, and have peace, but I also want her to be safe and shielded from danger. ... Right now Mom is able to be very much included in this decision-making and I want her to be fully aware of everything we are thinking of. Now that the paranoia is gone and she is asking questions and is able to grasp and retain our conversations, and is remembering fully things that transpire every day, it is time to include her in her own future planning. I hope this will last and she will continue to improve, but I don't know how long the medications will benefit her and every report I read is different as well as every patient being different. I am so afraid of making a wrong move. This is my precious Mother and I want to be sure she is receiving the best there is, and that I am doing the best I can. It is like walking on thin ice. The thought of taking a wrong step is terrifying. ...

On December 30 while I was at work, I called the Alzheimer's Association to see what kinds of help and support was available in case Mom and I have to draw on it later on. The woman I talked to ... told me of a nearby support group I could go to, and gave me the phone number of a neuropsychologist... She gave me phone numbers of adult day care centers that are local and also home health care options. She seemed to think Mom should stay ... instead of coming home with me, or possibly she should go to assisted living, which would give her more independence but also keep her safer than being alone all day. She was very helpful...

JB

Update received: June 6, 2006

Hello again to all. I am sending an update on my mother, whose original account appears on January 6, 2005.

In April of 2005, my mother had miraculously recovered to such an extent that she was able to go back home to Fort Myers, Florida. She did very well for the rest of the year. She was living on her own, getting her own meals and taking care of her dog, her finances, and keeping house for herself in the little condo she had lived in for 30 years and loved so much. She was not driving, but she had several local friends who would pick up things from the store for her and carry her to the doctor when she needed to go. I am so glad she had the opportunity to go back and lead a normal life for a little while in the house she loves so much.

In October of 2005 Mom and her dog came up to visit with me to stay through the holidays. The weather was chilly for her and she stayed in her bed a lot, but she would come down for meals and that's about it. After Christmas she couldn't wait to go back home to Fort Myers, so the beginning of January I drove down with her and the dog. I thought being home once again in her familiar surroundings would be good for her. I called her several times a day to remind her to take her medications (she was on Sinemet, Aricept, Potassium, HCTZ and Remuron). She complained every day of having no energy and a little nausea. She was convinced it was from all the pills she had to take, especially the Sinemet, which she was taking three times a day.

Mom was only back in her house for three weeks when I got a phone call on January 29th that she had taken a fall and was in the hospital in Fort Myers. She had to have stitches in her head and experienced some confusion, but other than that they said she was alright. The soonest I could fly down was the 31st. I had to get a home health agency to stay with Mom until I got there, which was pretty expensive but it had to be done. When I got to Mom's house she was in bed, unable to get up by herself. I talked back and forth to both her doctors, and it was agreed that Mom should be taken off all her medications except the Aricept and see what would happen. I had to help Mom in and out of bed and up and down stairs, and her confidence walking was totally gone so I held her elbow while she walked anywhere. After a couple days went by Mom said she was feeling much better. She was eating better and said her nausea was gone, but she was still shaky and needed help with all her activities. Her cousin was supposed to come and stay with her but that fell through, so Mom and I had a talk and we both decided it would be best if we locked up the house and I brought her and her little dog back to Virginia. She said (and this was her decision, one I never thought I would hear her make) she would go back to [the nursing facility] where she could be taken care of. I think she knew then that she needed more care than I could give her, but I told her once she went back we would take it one day at a time. Mom clearly remembered how well she was treated when she was there last time, a year or so ago.

The whole month of February I watched Mom lose ground. She was already a little confused, more so when she was tired, and she would call me by Dad's name when she was upset at me and ask me odd questions like where were the dogs (she only has one, we had two when I was a child) and she would ask me which J I was, but it wasn't all the time and usually she was lucid and peaceful. She was having physical therapy which was covered under her secondary insurance, but I was having to wrangle with her financial people for the monthly payment for the bed in the nursing facility, which was about $5400.00 a month depending on how many days there was in the month. Because she still owned the house and had an annuity, she did not qualify for Medicaid. As February progressed, Mom got more confused and began having bizarre fantasies and stories to tell me. She told me her roommate was pregnant (the poor woman must be at least 75 years old), she took a bus to Disneyland, she took a trip to Alaska, she kept seeing Dad in the halls but he was driving a car, people were talking about her and calling her Stinky, and besides all this it was getting more and more difficult for her to walk. So after a month of being on no medication except the Aricept, her neurologist put her on a small dose of Requip to see if it would make a difference.

The Requip has done no good at all as far as I can see, and it is now June. When all this began with Mom initially back in 2004, she was on Cogentin, and it caused her to be very rigid, and her neck was curled very tightly down to the right which made it very difficult for her to do anything including eat. (She got better when she was switched to Sinemet.) This is how she looks right now. She is back in a diaper 24 hours a day because she is too rigid to walk to the bathroom, even with help. She needs assistance eating. She hardly opens her eyes at all. At times she will carry on a conversation, but usually she mumbles and is in her fantasy world. She does not like to leave her bed. At rare times she will let me take her for a stroll in the wheelchair, but they are extremely short strolls, and then she demands to go back to her room. Rarer still are our trips out in the garden for a breath of fresh air. She is on Requip, Seroquil, and Aricept. She is losing weight. I spoke with her neurologist, and she is going to finish out this week on a lower dose of Requip, and then once it is totally out of her system (in another week or so) we are going to try the Sinemet again since we got better results with that, and hopefully Mom will get some mobility back. I refuse to give up hope. We saw a miracle before, and I am sure we can see one again for her. I feel like we should try everything we know to do. I would love for Mom to get well enough to come back and stay with me again. We have brought all her things up here, and her house in Florida is on the market, but I don't know how much of this she is aware of. I am glad she had the chance to go back home last year, that was a gift from God. I think she knows it was her last time, she hasn't asked to go back home and I have not brought it up. Once in a while I have to remind her that she is at the nursing facility, because she thinks she is at work, or in a store (once she said she was almost arrested for shoplifting), or in a restaurant. I am amazed at some of the things her mind creates! A couple of days ago she and some friends of hers decided to establish a new church. I have found it is best to just go along with the current delusion, unless it happens to be one that is causing her distress. Still, in spite of all this, every day is new, and maybe today will be the day someone finds a cure for this. If not today, tomorrow. I will not give up on my precious mother. She has never given up on me!

I wanted to send this update because the story was not finished before, and it still is not finished. Still hoping and praying for a happy ending, I will keep the rest of you updated, no matter what the outcome.

J

Update received: February 8, 2007

Hello again, and blessings.

I am sending in another update on my mother. The original account is dated January 6, 2005.

As I had written at the end of my first update last June, Mom had to leave her home in Florida once again and be placed, at her request amazingly enough, back in the nursing home she was in briefly the end of 2005. I think we got her there just in time, because she declined pretty dramatically that first month. Then she seemed to level out. She was unable to walk, but would sit in her wheelchair at times and was able to feed herself and get to the bathroom. She was not interested in reading, like she was the last time. She had no desire for a TV either, or a radio. She told me those things annoyed her. Her roommate has a TV but doesn't have it on much, and when she does, she has the volume turned down and besides it is on a Spanish channel so Mom wasn't able to understand what they are saying. Mom was at that time more interested in hearing people's conversations out in the hall, and when I would come in she had fantastic stories to tell me about what was going on in the nursing home. During those first months I was able to get Mom in and out of the car to see the doctor, the dentist, the eye doctor. She had no desire to go to my house though, or to church, because she said it hurt her to sit for long and she just wanted to get back into bed. We had a routine of me bringing her little dog in to see her every Saturday. Sometimes she would tell me that Muffin had been in to see her even on days I hadn't come in. A couple of times when family members from further away would come to visit I would get Mom ready and we'd go out to lunch. That didn't happen much. Mom had no desire to leave her room.

Mom was involved with physical therapy from February until April of 2006. Then she was released because it was determined that nothing more could be done for her. Mom was glad; she told me she hated going to physical therapy. Getting up and down and walking was becoming more painful, it seemed. Any time we went anywhere, even just down the hall in the wheelchair, Mom would say, "I can't wait to get home!" I finally came to realize this meant she couldn't wait to go back to bed. And when she would say, "Let's get going" or "Let's wind this up", it meant we had visited too long and Mom wanted us to leave so she could go to sleep. The times she didn't want me to leave were when other people were there. My cousin would come see her, or her brother-in-law, or my son and his family, and all the chatter would just drive her straight up the wall. Even talking on the phone to one of her friends in Florida, or even her brother, became too much for her to handle. I would put them on speaker on my cell phone and Mom would enjoy it for about two minutes and that was it.

During those first few months there were always children in the room, under the bed, in the closet. I guess I was used to it by now because it didn't seem so bizarre anymore. Mom would say, "Those kids are too noisy" or "Is anyone watching those boys?" or "They are playing under my bed again" and I would answer, "I'll take care of it, Mom" and she would be satisfied. Sometimes she would say, "Who is that man standing over there?" and no one was there, of course. Also she rarely even had her eyes open. She would open her eyes, though, if she was upset about something. I learned to watch for that!

Also Mom's voice got softer and softer. That is something, because her voice has never been loud. Back when she was well, in Florida, I remember her telling me that her voice was seeming to lose power. Now it was a struggle to hear her speak, and I was always saying, "What did you say?"

From April to July of 2006, Mom progressed to Depends and then to adult diapers. She could no longer stand on her own, let alone make it to the bathroom. I was amazed that this didn't seem to bother her. I would be sitting with her and she would say, "I have to go potty". I would say, "It's OK, Mom, you are wearing a Depends". She would say, "Well, OK then". And by August, she was needing more assistance in feeding. It was like all of a sudden she would forget where her mouth was. I think I found this to be the most distressing. Even candy. I would put a Hershey's Kiss or something in her hand, unwrapped, and she would just hold it. Or she would start to move it toward her mouth and then forget what she was doing. When I would get there at mealtime, I would have to feed her. The nursing home staff were feeding her all the time by then. And she was losing interest in food. However, she would always eat all her ice cream.

Also in August, the nursing home staff decided Mom was ready to go on hospice care. The decision was made because by now Mom was not able to do anything for herself, and had lost quite a bit of weight. The hospice people are amazing. They take good care of Mom, giving her additional showers and keeping her clean and comfortable. The nursing home staff are wonderful, too. I have never had a complaint about Mom's care.

September saw more declines. Mom started losing words. She would try to tell me something and just say something really off the wall, and then say, "I lost the word". It became a guessing game to try to figure out what she was saying. Once she told me, "You remind me of my daughter". I said, "Mom, I am your daughter". Then Mom said, "Well, who is your father?" I told her my Dad's name. She said, "Well, fancy that. That is amazing." I just left it alone. She was also concerned about Muffin the dog, and I told her Muffin was fine. "Well, what about the other dog?" So we had to go through the deal again about how there is only one dog. I didn't want her to be lying there worrying about a dog who doesn't exist. Another time she had a party in her room (all her imaginary children, I suppose) and another time she got angry at me for not doing all the laundry that was piled up everywhere. I told her I would get right on it. There was, of course, no laundry.

Amazingly, Mom has never mentioned something that is very close to her heart, her house. I dreaded talking about it, not knowing how much to tell her, and thank God the subject never came up, even though I had to make two trips to Florida in 2006 to take care of moving all Mom's stuff up to Virginia, and actually selling the house. Mom never once has asked how her house is. The first time she came up to Virginia and was in the nursing home, she talked about her little house all the time, making sure I was taking care of things, and how she wanted to go back there. This time, not one word. I decided not to mention it unless she did, no sense causing her distress, and it isn't like there was a choice. She couldn't go back, the house had to be sold, the money was needed to pay for Mom's care. Mom has been up here for one year and not once have I had to talk about the house.

So now it is February 2007. Mom is on an air mattress to prevent bed sores. She is having difficulty swallowing, though she still eats her ice cream. She is on oxygen from time to time because sometimes she says she can't get her breath. Yesterday when I went in to see her, she didn't even wake up, even though I kissed her cheek several times and whispered in her ear and held her hand for about 45 minutes. She seemed to be breathing heavy, in spite of the oxygen. And my prayer for her is now, Lord, please either heal her all the way or take her all the way home. I know she is ready spiritually to meet the Lord, and I am ready to let her go. She has fought this thing long and hard, and though we both believe in miracles, I think we are both ready for this to end.

Update received: February 23, 2007

As the final note on the January 2005 story ... My mother passed away on February 15th, 2007, at 12:33 a.m. She fought long and hard, she was a trouper. Up until the very end she had a good attitude and everyone in the nursing home, the hospice, and my church who spent time with her loved her. I feel relief that her struggle is now over and she is now spending eternity strong and whole and unencumbered by a mind and body that had her trapped for the last couple of years. I rejoice that she is at peace, and I am at peace, having cried most of my tears out the last week of her life when I knew that the end was coming and was indeed in sight. I will miss her like crazy, and I will treasure my memories of her as she was prior to her illness and as she is now in Glory strong, vibrant, beautiful, and full of joy.

Thank you so much for this website, for your account of your mother's journey, it has helped me deal with my own emotions and also the practical aspects of my journey with Mom. I thank also all the other people who wrote, even though it was painful to do so. I think we all have helped each other, and my prayers are going up for each one of you who still has a ways to go. We do all that we can do, and pour ourselves out, because our loved ones are worth it. It is an act of love that we can't see any reward for right away, but the reward and the peace are coming, for all of us. Don't give up.

J

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