Dear Friends: A year ago this week, I updated everyone on the status of my wife and her health problems. I am re-posting that update and at the end, I will update everyone as to what has gone on in the past year. I hope my experience can help someone.. _______________________ September 15, 2013 I wrote: _______________________ In response to a request for our story about my wife and our experience with LBD. My wife, Linda and I first met on October 12, 1980. We were married on January 3, 1981, just 12 weeks after we first met. She was 31 and I was 27. She had a daughter from her first marriage and I had a son from my first marriage. I had no access to my son since he was with my ex-wife in a foreign country and I had no idea if I would ever see him again. But that’s another story. We live in Northern Indiana. I was born and raised in this area but spent 6 years living in New York City when I was very young and spent a while in Haiti when I was married to my first wife. Linda did not want her daughter to go back to her ex-husband if something happened to her so I agreed to adopt Rhonda later that year. She was 10 when Linda and I married and she was 11 when the adoption was finalized. From the beginning, it was apparent that Linda had issues with her temper and a volatile personality. I always just accepted that as part of being married. About 2 years after our marriage, she had some “female” issues that required surgery. She had endometriosis and a cyst on one of her ovaries. At just 33 years old, we asked the doctors not to do a hysterectomy unless it was absolutely necessary. We wanted to maintain the option to have children if that became our choice in the future. Afterward, the doctor told us he would have preferred to see her get the hysterectomy but because of our request, he managed to save most of the ovary that had the cyst and of course all of the other. However, soon after her surgery, other problems began to crop up. These were problems which were much harder to handle since these problems began to involve her emotions. Whether this was a result of the surgery and disturbing the “balance” of her hormones, or maybe it was just part of her makeup, soon after the surgery she developed depression. She started getting Agoraphobia and did not know what was wrong. I remember times when she would go into a panic just walking into the Mall. I mean one of her favorite pastimes was shopping (typical of many of the women I have known), but this condition prohibited her from doing much of anything. She started wanting to just stay home. We sought the help of her physician and he diagnosed her with depression. This was very new to us but we were willing to try just about anything.. Over the years she has taken just about every antidepressant they have ever invented.. usually after a time they would lose their effect over her and the doctors would recommend something new.. Over the years she would sometimes show some signs of what was to come. There would be just “little” things and some “pretty big” things too.. More than once in the past 10 years or so she has completely “lost it” on me.. hitting and punching and scratching me violently. I mean all it would take to trigger her rage was for me to say just the wrong word at just the wrong time and she would tear into me, knowing I wouldn’t hit her back. Maybe 3 times she has left me bloodied and bruised… She seemed to think that since she’s a lot smaller than I am, it was ok because she seemed to think she couldn’t leave any damage on me.. I told her that if it had been me beating on her that way she’d have me in jail by now. There came a time when the threats and actual violent outbursts caused me some serious concerns. After some of her angry spells, sometimes she’d say things like “You have to sleep sometime” I began sleeping on the couch and then I got a job in security that required that I work from midnight to 8 am for 5 days a week. It somewhat diminished my fear of her doing something unusual at night. In May of 2005, she got so angry at me that she moved out.. and moved in with our daughter in Pennsylvania (10 hours away) I was devastated that she actually left me. We had been married 24 years at the time.. She spent our 25th anniversary in Pennsylvania. I took a long weekend in the fall of 2005 and went out there to see her. I missed her terribly and wanted to let her know that. At that point in time, I don’t believe it occurred to her how her absence affected me.. She got a job at Wal Mart and lived with our daughter’s family and during that time our daughter and her husband divorced. I don’t believe Linda’s presence contributed to it. Apparently the roots of their marital dysfunction started long before Linda moved in. I kept in touch with Linda every day by email… and several times she asked me to send her some of her things which I gladly did. After a time, I saw her declining. Some of her old fears and phobias came out and she had a terrible time doing the job she had at Wal Mart. In May of 2006, she called me and asked me if she could come back home. I never changed any locks or did anything that would appear hostile to her. I welcomed her back with open arms. When she came home she was in terrible shape. She had lost a lot of weight (she wasn’t very big to begin with) and you could see in her face how terribly stressful that year had been.. I had a job at that time working in security at a local hospital. After a few months working with our doctor and trying different things, she seemed back on track. In August of 2006 I helped her get a job at a housekeeper at the hospital part time (2 days a week) and she seemed happy with that. And she had health insurance which was very helpful to both of us. She remained employed there for the better part of the next 5 years. I could see “little” things that made me wonder during that 5 years. She remained on antidepressants and seemed relatively stable. However, she was still very anxious and sometimes she would display traits that made me think “Alzheimer’s”.. one day she called from the mall. She was frantic.. she had lost her car. She was convinced someone had stolen it. So I dropped everything and went over there and after about 30 seconds we found her car.. right where she had parked it.. Several times during this period she would call me from home because she couldn’t get in. A few times she accused me of changing the locks. I would go home and take HER keys and open the door.. there was nothing wrong with the locks or her keys.. but she became obsessed with practicing opening the door when I was there at home so if she couldn’t get back in I’d be there to let her in.. I didn’t know what to think about that time period. By 2010, she was starting to have pretty serious delusions. It seemed like she would always find a time when I was most stressed. I remember January 31, 2010 very clearly. I own an Income Tax Service and have several employees and over 2,400 clients. January 31 is always a very busy time here at the office. Well, that day our main computer server failed… and we had customers lined up clear out the front door because they all wanted our services.. and we couldn’t perform any work because of the computer issue. Well, when I told Linda about this (she was home at that time) she started to call me continually on my cell phone because she became convinced there was somebody in the house.. She said they were in our attic and they were laughing at her. She somehow crashed our home computer and pushed all the “wrong” buttons on our tv remote so the television didn’t work.. and was sitting there hearing “giggling” from the attic. She was frantic and in a rage at me because she was convinced that I had sent people from my office to go up in our attic and harass her. To her the computer here at the office and the computer at home and the television and the laughing from the attic were all connected. I had to take out from what was probably the busiest and most stressful day here in my office just to go home and show her that there was no one in the attic.. and the tv was fine and the home computer was ok. She was still convinced that I and my ‘cohorts” here in my office were harassing her. I know that in her mind this was all very real.. Soon after that, she started hearing “voices” supposedly coming from the computer at home. She really thought these were friends and family talking to her. She became quite familiar with the characters she talked to. She fell in love with one of the “male” personalities More than once she was told to meet him somewhere. At one point she walked 2 ½ miles down a very busy road and ended up at the home of our friends.. but it was because this “person” had told her to walk down the road and come meet him.. Another time she went out in front of our house and waited because “he” said he’d come pick her up. She because obsessed with the cars driving up and down the road in front of our house. She somehow was convinced that some of the doctors at the hospital where she worked were kidnapping people and harvesting their organs in the basement of the hospital. This had to be horrifying to her considering she actually believed these things. More than once she would start babbling.. and I would realize that I was hearing “Both sides” of a “Conversation” she was having with one of her “voices”.. It was quite bizarre. She became obsessed with one of the doctors at the hospital. She told me he had a camera installed in place of one of his eyes.. that he supposedly had a “glass” eye but she knew it was actually a camera and he was spying on her. She was convinced that the cars driving up and down our very busy street were either there to kidnap her or to protect her. I never did know which it was.. She found out that this doctor had a white SUV and so every white SUV that drove in front of our house had something to do with her imaginary world. I’ve always told her she had an active imagination but it came to the point where her whole world revolved around this imagination. On April 15, 2010 I came home very late at night (about 1 am) from a very busy culmination to a quite hectic tax season. As I was coming in to the house, she was heading out the door. She was sleep walking.. I woke her and got her back to the bed and settled down.. well, about 3 in the morning someone was banging on the window by our bed.. She had gotten up in the middle of the night and gone to our neighbor man’s home. .She went inside his home and in to his bedroom and woke him up and told him someone was trying to kill her. He got up and got his GUN and went outside with her to see if he could figure out what was going on. Then of course, she was locked out of our house so she came back to our bedroom window and woke me up to let her in. This was quite disturbing to both of us as well as our neighbor. (He locks his doors now). That was a situation that could have gone so wrong in so many ways.. The next morning she didn’t remember it happening. Interestingly, now she remembers it but at that time she didn’t. I went to our family doctor the next morning and told him what was happening. He said apparently she has paranoid schizophrenia and he wrote her a prescription for Seroquel. She started taking it and within 2 days had a bad reaction to it. She woke me in the middle of the night saying she couldn’t breathe. She begged me to take her to the hospital (Not the one where she worked because at that time she was still convinced they wanted to harvest her organs)… So I took her to another hospital nearby. They said she had an unusual amount of Seroquel still in her system but I knew how much she had taken and somehow the amount in her blood seemed to be more than she had taken. I told them about her symptoms and they called in their psychiatrist and they gave her Prednazone to counteract the allergic reaction she seemed to be having.. but they couldn’t wake her from unconsciousness. Later that morning she was admitted to the “Psych” ward of that hospital under the care of their psychiatrist. She stayed there for 3 days and was released. I should say that for 2 years before this, she was taking something similar to Adderol because she had told our family physician she had no drive or focus. It was called Vivance and it did give her quite a “boost” during the day. But apparently it wasn’t supposed to be prescribed for more than a year and she had been taking it for 2 years. Well, during her first visit to the “pshcy” ward, the psychiatrist told her to quit taking that stuff because he said that was what was causing the “voices”. Well, unknown to me, she had a “stash” of it hidden and she kept taking it. After her first visit to the hospital in early May of 2010, she kept taking her Vivance and the voices and the delusions got a lot worse. The doctor prescribed Zyprexa which is for Paranoid Schizophrenia. She was taking that and the Vivance at the same time. During this time she got so angry one day that she told me she was speaking for God and that I would be dead by the end of the day. She was still in close contact to the “voices” and was still doing what they said. She had another appointment with the psychiatrist on the 23rd of May. That morning I asked her if she was going to meet me at the Doctor’s office or should I come home from work and pick her up? She said the Doctor called and told her she was fine and didn’t need to come in. It was 8am on a Monday Morning! I said “when did he call” She said he contacted her through the computer and she wasn’t going in. Of course I called the doctor’s office as soon as I got to work and they confirmed that they had NOT called her and they still expected her to come in. So I came home about a half hour before the appointment and she had locked herself in to the bedroom and wouldn’t come out. She insisted she was just fine and didn’t need to go to the Doctor. I ended up taking the hinges off the door so I could get her out of there and take her to the doctor. She got dressed and went in and the nurse said the doctor had asked her to take notes and communicate with him later. Well, Linda proceeded to sit down and explain to the nurse all about the voices coming through the computer and how it was a “new technology” and it was quite normal… and she said this as if was an everyday thing and nobody needed to be concerned. The nurse said very calmly “Ok Well, let me consult with the doctor and I’ll be right back” Well, she didn’t come back. The doctor came back and said “It’s time to go back to the hospital”. I drove her to the hospital and she was admitted again to the “psych” ward and this time she stayed a week. I went home and got rid of all the Vivance and was determined to keep her off that stuff. Once she got out, she was prescribed Zyprexa for paranoid schizophrenia. This seemed to keep her more-or-less “In Balance” for the next year. She had her “ups and downs” from about June 2010 to May 2011. During the spring of 2011, she started slowing down. She would “shuffle” along instead of walking confidently. She came home more than once from work telling me of getting “written up” by her supervisor for neglecting something she was supposed to be doing at her job. Finally, on May 4, she went to work and about 2 hours later she ended up at my office and told me she lost her job. I just hugged her and told her everything was going to be ok. Quite honestly, I was worried about not having insurance. The income from her job was of little importance since it actually wasn’t that much.. But I figured we’d find a way to survive. We went to the doctor and told him of the new developments. He gave her a 7 week supply of “samples” of the Zyprexa and told us how to apply for assistance to get her medications taken care of. We were in the process of applying for that and I figured we’d be ok. Well, after about a week she decided on her own that since the cost of her perscription was going from about $75 a month with insurance to over $950 a month without insurance, then we wouldn’t be able to afford it and so she quit taking it. We had a 7 week supply but she was convinced that we weren’t going to be able to afford it. I kept telling her she NEEDED to take her medication but she just plain refused to take it. From what I understand, it’s not a good idea to just quit something like that “Cold Turkey”.. so I believe that decision had an adverse effect on her. During the night of May 28 2011, she got out of bed and told me that something was wrong and that she needed to go to the emergency room. I told her that her medication was right in there and she should just take it.. but she insisted that she wasn’t taking it and that she needed to go to the ER. She got in HER car and left. I figured she’d be back in a while.. but about 7 in the morning she called me from Oaklawn Psychiatric hospital where she had been admitted. This time, she actually went to the ER at the hospital where she worked and after they diagnosed her problems as being psychiatric, they took her to the Psychiatric hospital. For her first stay at Oaklawn (which lasted about a week) they kept treating her for paranoid schizophrenia and got her more-or-less stabilized. For the next 60 days after she was released I took her to “therapy” (a group session” thing) at the psychiatric hospital every Monday Wednesday and Friday for a couple of hours. I really don’t think that was of any help to her considering that they had her misdiagnosed as being paranoid schizophrenic. Early August of 2011, she was going downhill again so they admitted her again for another 2 weeks.. They were starting to realize that something else was happening with her.. and I believe it was about that time that they realized that she had Lewy Body Dementia. This time when they sent her home they had me apply the Excelon Patch every day along with a whole array of medications. She kept getting worse and was so dependent on me being around that during this time she wasn’t able to let me out of her presence for any length of time for any reason. I remember once we were at church and I had to go to the rest room. I must have been gone for maybe 3 or 4 minutes and she was so anxious that she came and opened the door to the restroom and yelled for me because she didn’t see me for a few minutes. I like to go for walks at night and she was so anxious and dependent that she couldn’t stand for me to do that even after she went to sleep. It was during this time period that I started having to take her to work with me because her anxiety was so bad. Finally, about September 3 2011 they admitted her to Oaklawn again and this time they took her off all her medication and one-by-one they gave them back to her just to see what would help and what would harm her. At that time they realized that the symptoms of paranoid schizophrenia were actually some of the symptoms of LBD and that the meds for p/s were hurting her. It was during this visit that they recommended that she be admitted to a nursing home and on September 27, 2011 she was admitted to Golden Living Center in Elkhart (about 15 miles from our home). We were able to get her on Medicaid and it was retroactive to May 1 2011 so they paid for all her hospitalizations and medications. They also agreed to pay for her entire Nursing Home stay. Her first day of Nursing Home care was probably worse for me than it was for her. Believe me, I shed many tears that day. I realized that her life as she had known it up to that time was over. Quite honestly, she was so “out of it” that first few weeks that I don’t think she even realized where she was.. I never missed a single day of being there with her at the nursing home. For a year and eight months, I was there every day either for Breakfast or Dinner or both.. Soon after she was admitted, some of our friends came to visit me in an effort to help. They asked me what they could do for Linda and I made some suggestions about visiting her on a regular basis. Then they asked me what they could do for me. And the only thing I could think to say was “Help me make her life better”.. I decided on the day that she was admitted to the nursing home to dedicate the rest of my life to making her life better. And that is exactly what I’ve done. One of her most treasured possessions during that time was her cell phone. She seldom used it before she was admitted to the nursing home but I made sure she knew how to use it and believe me.. she used it a LOT.. during the first 6 or 7 months or so she called me many times during the day. Some days it was ok but sometimes it got quite irritating when she would call me as many as 45 times during a day while I was trying to work. I couldn’t convince her that she shouldn’t call me so much. Again with the obsessions, the dependency disorder and the paranoia. During the tax season of 2012, she was quite persistent in calling me without consideration to how much it disrupted my very busy schedule. Often she’d call me every 5 minutes or so. But most of my clients were very understanding when I told them of the situation. Once tax time was over, she started to beg me to take her out of the nursing home and take her to my work every day. Well, at first I resisted this idea believing that she would be more of a disruption here at the office. But I relented and quite honestly it has worked out pretty well. I fixed up a little office right beside my office with a recliner and a tv and cable.. and she’s quite content to sit there and watch tv every day knowing I’m right next door. Now, in retrospect, I believe the decision to bring her to the office with me every day was a turning point for her. It gave her something to look forward to.. it gave her a sense of control over her life. It gave her hope. From May 2012 to date she still comes to work with me every day. Gradually, I saw improvement in her symptoms. Apparently this was evident to others as well. We still have our regular appointments with the psychiatrist, and she has seen improvement. Finally, during our visit in early May 2013, the psychiatrist agreed it was time for her to go home. On June 1, 2013 she came home and for the past 3 ½ months she has been pretty stable. I am now her 24/7 caregiver but it was almost to that point while she was in the nursing home. She didn’t want anybody at the nursing home to give her a shower so I ended up doing that for her sometimes several times each week.. I still do to this day. I have to dress her every morning and get her ready for bed at night and make sure she brushes her teeth and bathes regularly. I serve her breakfast, lunch and dinner every day and make sure her clothes are clean and that she’s comfortable and that she takes her medications on time. I don’t have a lot to offer Linda but my love. I wish I could wave a magic wand and cure her. I wish we could reclaim some of the earlier days when we were both able to do more. She’s 64 now and I just turned 60 on the fourth of July. We’re both too young for this.. but we’re both alive and relatively alert. She has forgotten a lot of the things that have happened. This disease will not go away. Just because her symptoms are somewhat better now doesn’t mean she’s cured by any means. The eventual outcome will be the same no matter what I do. But while I can, I intend to do just what I decided on the day she was admitted to the nursing home.. dedicate the rest of my life making her life better.. so far it has worked. Linda often talks of death. She often tells me she’s dying. I tell her she’s probably going to outlive all of us. Some days she gets so frustrated she says she wants to go to sleep and not wake up in the morning. I tell her she can’t do that. I would miss her too much. And when she asks me what I’m going to do if she gets worse, I tell her I’ll just keep on loving her no matter what. I hope my words can help somebody. My experience is by no means typical of other spouses of folks with this disease because every case is different. I have chosen to apply in every facet of my life especially in my dealings with Linda, the Golden Rule: “Treat others the way you WANT to be treated”.. And if I do everything from the standpoint of Love.. at the end of the day I will be able to live with myself. I will be able to say “I did my best”… ________________________________________ September 18, 2014: In the past year, Linda has continued to come to work with me every day. We cover the same routine every day: We get up at the same time every morning, 7 days a week. I get breakfast for her (Usually Oatmeal because thats what she likes) Then I help her take her shower and put her clothes on her in preparation for the day ahead. I get myself ready and we get to the office every day about 9. She has the same routine every day when we get to the office and I help her get herself set up for the day in her room. Everything has to be done in the same way every morning. I make sure she gets lunch every day just to assure me she has the nutrition she requires. I have seen her decline somewhat this past year. She is less confident and needs more of my help whenever she goes to the bathroom. She needs more help brushing her teeth and she forgets a lot of things. She is obsessed with making sure everything is perfectly cleaned and dried and every door is shut and every drawer is closed. I believe its more apparent every day that she has declined. Still, Im happy that we made the decision for her to leave the nursing home and come back to our home. I believe she feels she has more control over her life than she did in the nursing home and this is at the basis of her self-worth and well-being. Her anxieties are so strong that we cant go shopping or to any restaurant if there is not a restroom where I can go in with her. So the result of that is that we seldom go anywhere or do anything fun like we used to. But thats of little importance considering that she IS home and is able to function on a more-or-less consistent basis. I need to go visit my own parents. they live 800 miles away and theyre not getting any younger. They have trouble traveling any distances any more. Lindas anxieties are so strong that it makes it practically impossible for us to travel that kind of distance as well. So I just hope and pray that something will change soon and we can go visit. At this point, I dont see that happening any time soon. I only hope that she has a life that is comfortable enough to be happy. Our home is very humble and needs a lot of work that we cant afford. In fact it needs so much work that I have no idea where to even begin. But its home and hopefully being there instead of at a nursing home is a good thing for her. Shes been out of the nursing home for almost a year and four months now. Its a lot of work. I am concerned that this next tax season might be difficult since she requires a lot of my attention and even now, during our slow time its difficult. I can only imagine what its going to be like when January gets here. Well see how it works out at that time. At any rate, I wanted to update everybody. There isnt really a lot of good news to share. But for now were still continuing with this situation the best we can. I still dont have much to offer her but my love. And, of course, lots of hugs. I hope thats enough to her to make it worth it. I still want to say, when all is said and done, that I have done my best.
Posted on: Thu, 18 Sep 2014 20:49:37 +0000
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