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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, July - September 2004 (7 stories)

Story 1. Received: July 9, 2004

Good morning,

I just finished reading your journal for your Mom - and can only express my condolences. We lost my father on Jan. 3 of this year - presumably from Alzheimer's. My father passed away at the age of 68 - having been diagnosed at 63 (far too young). The reason I found your journal was I talked with my step mother last night - who recently had received the autopsy report - in which they noted that my Dad also had Lewy body disease. I had never heard of it until last night - which is amazing in its own right.

After reading your journal, I immediately recognized so many similarities in what you described. It was like reading a journal of my father's declining condition - in the same order that they occurred. It's amazing to me that NO doctor, neurologist etc. even mentioned Lewy body during the many appointments we had taken my Dad to. They all focused/discussed Alzheimer's - and treated that disease only.

I now fully believe that it was the Lewy body disease that took him so fast. From the time he was diagnosed with dementia/Alzheimer's, until the time he passed away - was a mere five years. He went through so many of the same steps your Mom has experienced - and as his son, it was so very difficult to witness. My father was a "captain of industry", working as a director of manufacturing for numerous high tech organizations. He literally had hundreds of people who reported into his office (manufacturing, quality control, materials, engineering etc.). My earliest memories/impressions of him are of his strength of logic, his incredible mental abilities. To see those strengths, those specific attributes that so defined him for all his life, being attacked and diminished by these diseases - was incredibly painful to watch.

While I truly miss my father - on some levels I'm thankful that he's not in that state of existence anymore. There was no quality of life for him for the last year or so - and at times I very much doubted that he even knew somebody was sitting in front of him, or talking to him, let alone one of his sons. While he was lucid, we all agreed that we would donate his body to the research of dementia - and then have his remains cremated. We will disperse his ashes on a mountain top here in Colorado on August 21 - a mountain above an alpine lake, where he and I spent many hours fishing, and watching elk frolic above timberline. It's a spot that he loved - and had expressed 20 years before his diagnosis as where he wanted his ashes to be spread. His journey will finally be complete.

Thank you so much for your dedicated efforts in trying to educate people about this dread disease. I truly wish you comfort in the inevitable conclusion of your Mom's journey with this disease. Please try to find comfort in the fact that you obviously have done everything you possibly could to assist your Mom - and of that, you should be proud.

My thoughts are with your entire family...

Story 2. Received: July 26, 2004

Dear Lewy body journal,

I guess I just wanted someone to talk to, so I am writing to you. I have written before about my mother-in-law. She was acting very similar to your mother in the first part of your journal, especially.

She seemed to be "shutting down", a while ago. Her eyes were closed, her fists closed, and she was bringing her arms up to her chest. She wasn't talking much, and when she did say something, it was hard to understand. Hospice came into the Health Care Center, and shortly after they started, she seemed to "wake up"! Her hands and arms loosened up, she was alert and talking quite a bit. She started to eat better. Because she was getting better, the hospice ended, because it wouldn't be covered by Medicare anymore. Right now I think she is depressed and hallucinating more. I am trying to get in touch with her Dr. to see if another medication should be tried for depression. She was on one, but was taken off it because she was very restless and kept falling out of bed. She is in a very low bed (in a cradle mattress) with mats on both sides, so she hasn't gotten hurt when she does fall out.

The last time I saw her, she asked me to leave her alone. I know that she would like to go home, but that is not possible. Her house has been sold. As far as I know, she doesn't know that it has been sold. She also needs someone there around the clock. She thought that she saw her husband in her room, once when I was visiting recently. Another time she couldn't understand why she couldn't just get up and do things that she wanted to do. It is so hard to know what to do or say when I go to visit her. She seems to understand where she is now, and doesn't want to be there. Her mother was in a convalescent home for 12 years, and I know she didn't want the same thing to happen to her.

Have you noticed that your mother is very clear in some of her thinking? I think this makes it harder on them, because they know what is going on at times.

Thank you for "listening". Sincerely, E

Update received: December 24, 2005

To the Lewy body journal family,

Hi, I have written to you before and felt that I needed to write to you now. My mother-in-law passed away on Dec. 9th. Your site has helped me to get through the time that she had the Lewy body disease, and I just wanted to thank you again. I have shared your site with family members and workers at the Health Center. One thing that I was wondering, is there an organization that specializes in studying Lewy body disease? I should have checked into this earlier. If there is a reputable organization, we were thinking of sending a donation there.

This past year has been especially difficult. I wasn't sure if I was recognized or not, her speech got very garbally before she pretty much stopped talking. The last few months, she has been sleeping a lot. I registered my dog with Delta Society, and we have been a visiting pet partners team at the Health Center since this past spring, but she didn't even respond to my dog being there very much. (A lot of other people have enjoyed the visits, though, and at least I knew I was trying to make a connection with her.) She almost seemed like she had found "a place to be" in those last months, she was blocking out where she really was. She would always seem comfortable and quiet, but very distant.

I really needed to THANK YOU again!! I hope you will keep in touch. This is a long, hard "trip". I wish your family the very best. I hope that knowing how much that you have helped others will be of some comfort to you. You are doing a great job with your Mom, I know that she would be very proud of you to know what you are doing.

Sincerely, E

Story 3. Received: August 6, 2004

Dear Lewy Body Journal,

Wow! I have spent hours on the Internet reading/researching trying to find information about symptoms or perhaps answers to what is happening to my mum and then I came across your website.

Firstly, thanks. I have read every word of your website. It's wonderful. You deserve a big pat on the back.

I am from Sydney (Australia). My mum is 70 years old and has not yet been diagnosed with anything as yet. She has been unwell for about 4 years. Despite my pleas to my father (not her, as she was trying to hide the fact that something was wrong with her - she is a very proud, and I might add formerly an extremely beautiful [and vain], woman) no visit to her local GP was forthcoming. Dad simply said, "Don't say anything to your mother, she is just ageing prematurely".

She has had a very fine tremor of her right hand for about 4 years and her personal hygiene has deteriorated markedly. She would occasionally (and more frequently as time passed) seem to "shut down", not contributing to the conversation and generally looking very confused and rather dishevelled. When she did contribute to the conversation, which was rare, it would be to say something completely out of context.

Anyway, time went on with no great deterioration in her symptoms until April this year. In April this year her sister died. She was devastated and seemed to spend more time withdrawn into herself. For a few months prior to this she had become what can only be called "obsessive" about certain matters. She would obsess about different things each day. Mostly, however, she obsessed about my brother's 8 year old son (who lives with my brother in a granny flat attached to mum and dad's home). The obsessing seemed to worsen after her sister's death, so much so that my parents and my brother came to loggerheads over the matter and he was asked to leave as the obsessing was becoming unbearable for all concerned. To cut a very lengthy story short, he refused to go and a "stand-off situation" ensued. During this time my brother was extremely rude and threatening to both of them. Together with the death of her sister and her now alienation from her son, as well as a genuine fear of him, this seemed to worsen her symptoms.

For the next few months her symptoms seemed to deteriorate rapidly. My brother finally left their home one week ago.

With the deterioration in her symptoms my father now dresses her, washes her hair, does her hair for her each day, clips up her bra etc., as she does not have the flexibility in her arms to do so herself. She is quite a heavy smoker and he lights her cigarettes for her. She often forgets she has the cigarette in her hand and her clothes will be covered with ash as a result. My father has been doing all the cooking, cleaning and shopping for the last 2 or 3 years and now cannot leave her at all, not even to have a shower.

Several times while I have been visiting them mum has had an "accident" while going to the toilet. I do not believe this is an incontinence problem, more due to the fact that she cannot get her pants down quick enough due to her restricted mobility. She returns to the room from the bathroom with her pants around her knees proclaiming that she has had an accident and dad rushes her off into the bedroom to clean her up and then clean the bathroom after her.

About 6 weeks ago (and I am not too sure of the timing as it is very difficult to get the truth from my father as he seems to feel some sort of "shame" regarding my mother's condition) she started seeing "people" in her backyard. My father finally admitted that he needed help and we took her to her GP for a checkup. (What a relief.) Tests were organised such as blood tests and brain scan and all came back perfectly normal. Her GP diagnosed depression. A relief at first - "only depression" - but since then (2 weeks ago) the "people" are present more frequently, she is incoherent and frequently has a "blank" expression on her face more often than not. She was initially prescribed antidepressants but has been off them for more than a week now and is still seeing the "people" regularly. (She was seeing the people before commencing on the antidepressant.)

Last Sunday we spent the day at the emergency department of the local hospital because the night before her "people" had been inside the house. She knew they had been there because they had spilt water everywhere inside. As a result she is very frightened to be at home and wants to pack her bags and leave. She believes my father (they have known each other since they were 16 and are still very much in love) is collaborating with the "people" and she is suspicious of him.

As a result of our visit to the hospital she saw a Neurologist on Wednesday this week, who tested her and believes that maybe she has some symptoms of Parkinsons disease and perhaps some of Alzheimers. No real answers really. He has started her on Sinemet and wants to see her again in 2 weeks time.

She has been taking the Sinemet for two days now and tells me she is feeling better but is now quite angry because she feels we all think she is "going mad" and she doesn't believe she needs this medication. She believes the Neurologist "demeaned" her by asking such stupid questions (most of which she could not answer and just stared blankly ahead).

Sadly, she realises she is losing her power of speech and she also realises (after the event) that the people she sees are not really there. She knows that there is something wrong with her mind and it is frightening her. She is weepy and naturally feeling very sorry for herself.

I would really appreciate any comments you would care to make. I am staying with my parents for the weekend (I live quite a distance away from them at present but my husband and I are planning to move closer to them very shortly) and I would like to be able to help her if I could, especially to cope with the "people". This is the major concern at the moment as she is really frightened.

Once again, congratulations on a wonderful website.

God bless you all, and your wonderful mother.


Story 4. Received: August 24, 2004

Hello out there,

My father, 73, has been diagnosed with Alzheimer's and most recently they think he may have either a Picks or Lewy Body version of it.

He started with memory and cognition changes. After dealing with minor surgeries, like prostrate, he finally went through the series of tests by the neurologist that support his diagnosis. He has also been tested one more time by a geriatric specialist group consisting of doctors and nurses and I'm not sure who else. Everything else has been ruled out, as far as strokes, etc.

My whole family is in shock. It's one thing to deal with his diagnosis and the reality of what it means in the future, but his decline has been so fast. It has only been 9 months, and his physical changes are unbelievable. Besides the unsteady gait, weakness and occasional falls, he now is having occasional bowel and bladder incontinence. He wears Depends, and being a nurse, I have suggested to my mom to have him be on a bladder training program.

At first we all noticed his cognition changes. Now, it seems his physical condition is changing faster. My mom has started to receive help in the house and my Dad will soon start up the adult day care. His night hallucinations have settled down, with the start of Zyprexa.

I just cannot believe how fast he is changing. It almost seems like he may have to go to a nursing home in the near future at this rate. I just never imagined this all to happen so fast. I know he has been to good doctors, and my mom sees a geriatric specialist coordinator weekly to help coordinate cares and on-going needs she has. My siblings and I have set up a calendar to give mom more breaks over the weekend, when the services are not as available.

I am just so sad over all of this. My Dad was such an intellectual man and up till now only had a minor cold/flu each year.

Thanks for listening. It just felt good to share this with someone who has gone through similar happenings.


Story 5. Received: August 25, 2004

This is our story. It is hard to condense it, there are so many moments that stand out!

A little over two years ago, my husband and I decided to build a new house. It seemed a good time to encourage my parents to make the move and to come and live with us. My Dad was 84, Mom was 78 and they were not able to keep up their own home the way they used to. My Dad was reluctant to make the move but after my Mom said she was coming with or without him he agreed. We assured them that by making this move, they would be able to live in their own home their entire lives. Since we built a custom home we included an in-law apartment for them.

We had known that my Dad had been having problems for a few years. My Mother had her own room because of his "night terrors". During those episodes he would become so agitated while they were sleeping that he ejected her from the bed with a good solid kick. He did not want to discuss it with his doctor. We were all seeing other changes but attributed them to normal forgetfulness at his age.

Shortly after moving in, Thanksgiving week 2002, my Dad began to see a woman in the bathroom. The first time he woke my Mom up. He wondered how she had gotten back to bed so fast and why she had been standing on the bathroom counter. She told him she had not been in the bathroom but in bed asleep the entire time. He was not convinced. The "woman that lived in the bathroom" became a part of daily life. When he would stand in front of the mirror for long periods, we just laughed and said he must be talking to his lady friend. He also lost important things - sometimes for a few minutes; sometimes for weeks. When he lost the check from the sale of their house, we were a little baffled but not terribly worried. My Mom just said he had been doing things like that for "a while".

Time went by and things stayed about the same with my Dad for about a year. Then he began to show more strange signs. He would be anxious toward evening and pace. He had always shuffled his feet a bit but the shuffle became so pronounced that we used it to identify the days when he would stay up all night. He began to fall more often. He began to lose things more and more. We noticed that some days he could read and write fine and other days his writing looked like that of a kindergartner. He began to accuse us of whispering and plotting things together; sometimes saying we were trying to steal his money. He began to talk to his reflection in the television and to have other hallucinations. We would sometimes walk into their apartment and find him sitting on his bed with his underwear on his head; obviously needing help with dressing. We suspected that he was sometimes urinating in the stairwell or in the mechanical room. Occasionally he was incontinent. My Dad gradually had more and more trouble using table utensils and even identifying his drinking glass. My Mom always had a large bruise on her chest and many bruises on her arms. She denied that he was hitting her. When we were unsure, we would send our dog into their apartment. T, the dog, would put his paws across my Dad's lap, preventing him from getting up when his voice became agitated. T would gently push him away from my Mom if he was standing and his voice got louder. Other days Dad was passive and the model of sweet little old man; sweeping the front porch. Other days he was absolutely fine.

We finally convinced him to see a doctor. After several trials, we found one that he tolerated and he was diagnosed with dementia. Ah, we thought, this explains it.

After my Mom was hospitalized for her own illness this May, my Dad's overall condition plummeted. It was like he walked off of a cliff. He needed help bathing and dressing every day. We realized how much Mom had been covering. We thought he might improve once she got home. For about a week it seemed as if he had. Then, in June, everything fell apart. We found him in the garage, in his pajamas, with my mother right behind him at 6 AM. He was trying to start his car to drive off and she was trying to stop him. He couldn't figure out how the keys worked and left for a few minutes allowing us time to disable the car. My Mom wouldn't bother us but she had been up all night stopping him from "working". He was taking the electric stove apart; had been trying to pull door frames off; and was bouncing from one thing to another like a child with severe ADHD. Mom was exhausted and as I watched I realized that her bruises were from him shoving her away when she tried to stop him from taking things apart. She had been covering a lot of that up also. By 4 that afternoon my Mom was finally willing to call 911. Three paramedics and two police officers came to the house.

My Dad ended up in the hospital for ten days. He was in congestive heart failure and needed to be restrained in order to be given any medications. Like always, even in the ER he had completely normal moments - he turned to us and said "Look at that - 5 big guys to get one little old man out of the house!" - with a sense of pride about it. He ended up in a VAIL bed - think mesh cage - for his own protection. My mother decided that we could not bring him home without help. His behavior leading up to the hospitalization and while there was so bad that nine nursing home refused to take him!

The best part of the hospital time was that it made it possible to get all the evaluations his primary care Dr. had been suggesting. The Neurologist and Psychiatrist told us that based on what we told them and on my Dad's behavior there, he had a mixed dementia with Lewy Bodies. I came home, looked it up, and finally, the things we experienced made sense. Most significant to us was that because of the ups and downs when they can look so normal - it is hard to convince those who aren't living it every day, that these things really happen! My brother and sisters would visit and my Dad could sound and act absolutely normal! After they left, we could count on several days where he could barely function. The same with Dr. visits. He could do OK on the mini-mental exam and minutes after leaving the office he didn't know where we were or that we had seen the doctor.

My Dad is now at a Memory Care Assisted Living. He has been there two months today. In that time, he has gone through the same ups and downs he had at home. A month ago he was hospitalized again, due to aspiration pneumonia. The speech pathologist did several tests so he knew something was happening. When the radiology study was done, Dad was ready! He followed every direction and did just fine. The speech pathologist came up and told me she was convinced that he was not swallowing properly but he was like a normal man during the test. He turned to me after she left and said "You told me I can go back to Harbor House if I passed this test. Now get me out of here!" The next day, my daughter had to remind him to swallow his food. Some days he drools - just a little.

He has been hallucinating more frequently, saying my Mom, who is here at home, has been drinking, breaking windows and hitting him. He used to have "kids" with him all the time - two we think. He hasn't talked about them for about two weeks. He told us that the facility he is at "sells kids on the side to get more cash". At first I thought it was because my Grandson and some other kids had visited. Then I realized his "kids" were gone and those were the "kids" that had been sold. He picks up money and things we can't see. We laugh at some of the things he says because if we don't the only thing left is crying.

So, the ups and downs continue. I was stunned when the doctors activated his POA's for health and finance. I am the decision maker. I include my Mother in all the decisions but ultimately, they are mine to make. I have done all the things that should have been in place. Today, my Mom finally admitted that she does not want him here. She cannot manage him. We cannot quit our jobs to take care of him 24/7. Finances are arranged to maximize Mom and Dad's resources. We are participating in a pilot program that picks up the costs in lieu of Medicaid, so he has to live in the "least restrictive environment". That means we may have to attempt to bring him home. Tomorrow, at yet another planning meeting, I will try to find a way to meet my Mother's needs and the program's needs. We would like him to stay where he is. They are kind to him; allow him freedom a nursing home would not and they are close to our own home so visiting is easy. I am not sure how it will all work out.

I do OK until he is having a good day, is acting as normal as he gets anymore, and he looks me in the eye and says: "You promised I would never have to go anywhere. I could stay at home." He looks so frail and vulnerable. Then, moments later, he is totally off the wall with yet another hallucination or he has forgotten we are there to see him. I have tried to keep up with my full-time job while taking care of all the things that needed to be done. I am exhausted. A friend is in a similar situation with her terminal mother and we both agreed that no matter what we are doing on any given day, there is an underlying sense of hopelessness. We are truly helpless in the face of these diseases. Today, I let my boss know that I have reached the breaking point and need the rest of the week and next week off under family leave. Hopefully, I will find a way to meet the needs of my Dad, my Mother and my husband and I. We do not regret that my parents are here. We only regret that we did not understand the seriousness of Dad's illness so we could have been better prepared.

Story 6. Received: August 28, 2004

Dear Family:

Your journal has been a godsend to us. Our mother has had Lewy Body for 4-1/2 years and she tracks your mother's symptoms with an amazing parallel. Although Mom is still mobile, she is weak and requires constant assistance. She constantly insists we "take her home" to the point we have to take her in the car for a ten minute ride and then tell her "we're home!" This only works sometimes.

Our Dad is in pretty good health but now has some help during the day and some help at night until bedtime. Even with help, mother constantly wants to know where he is and he rarely gets a break. Even if he leaves for a bit, he is in a hurry to get back as he doesn't want Mom to be looking for him. However, he is now suffering depression from watching her constant (and in the last six months, what we would call "plummeting") mental decline. Although she is conscious of us and knows us kids, she is extremely confused, gets us mixed up and has no idea of timelines. She still thinks her mother and father are here. Other days, talking to her is like listening to a meaningless stream of thoughts. She also whistles a lot, which she never did before. It seems at nighttime, her mind goes into overdrive and a lot of nights she talks on and on without making much sense.

The hallucinations continue to be a big problem. She thinks people are in the house; she thinks they have built new doors to confuse her. Sometimes she thinks Dad has remodeled the house and she can't understand why he would do that. She even sees people sleeping in between her and Dad sometimes. She always tells us to tell "the people" to go home and can't believe they are so rude to stay so late. We used to tell her they weren't there, but now we just "shoo" them away as best we can. Her paranoia has sadly increased dramatically. She sometimes thinks Dad is trying to kill her and she will call out to strangers if she happens to be out, that her life is in danger or to "help!" Our Dad, who is the sweetest, attentive husband and the soul of patience, is devastated by her thinking these things. However, the next day she may be fine, saying "I love you" to Dad.

We have a lot of difficulty with increasing stubbornness. Some days she refuses a shower or won't take her pills. She will be convinced that we have the dosage wrong and it will kill her. Dad is just about the only one that can successfully give her the MANY daily doses of medicine and even he has trouble sometimes.

All three of us children live in a large city about six hours (by drive) away and now we are thinking Dad should sell the house and move to where we are. We've looked into a 2BR-2 bath condo that is near all of us and manageable in size for Mom. Dad, a lawyer who still practices maybe a couple hours a day, has become so distraught over her decline that he is ready to move to be near us.

We are looking for guidance. Would the move be devastating to Mom? Cause more confusion? Or would the long term benefits of family be better? I initially did not want Dad to leave his friends or work but he is really retired (only works a little I'm sure as a needed change of pace) and he says most of his friends have died or are in poor health. We are surprised he wants to move. Mom wants to do it one day and then will say, "I don't think I like it." We can get aides for them. What do you guys think? Change can be so upsetting, but we believe the future does not look good and we want to be close by.

In any case, please continue to update your journal. Our hearts go out to your family. We are with you every step and have learned more on your web page than we have from the doctors. Most recently, Mom has seen a neurologist but is having problems with low blood pressure. One day, after eating, she was walking with Dad and just "crumbled." Her legs go like rubber and she collapses. Her eyes rolled back in the back of her head and Dad thought it was the end. However, she came around and now they think it was low blood pressure on top of everything else. The strange thing is - now that we monitor her pressure every day, we see it being fairly normal while sitting but sometimes dangerously low while standing. We wonder if this is a precursor to not being able to walk. The doctors seem to just "rearrange" the medications from time to time, either cutting back or doubling doses. I'm not sure they know what to do.

Our family wishes you the best in the difficult days ahead.

Story 7. Received: September 6, 2004

Thank you for the informative website!

My 80 yr. old husband was diagnosed with "Parkinson's Plus" in Nov. 2002. I had decided that he either had the beginnings of AD or PD, and took him to the Dr. to check it out. His Dr. agreed, and since the study on CO-Q-10 had just been released, suggested we put him on the massive dose (1200 mg. per day) and scheduled an appt. with a Neurologist. The neurologist ordered a brain scan & determined G had had a couple of TIA's, and that he had Parkinson's Plus. He continued seeing his primary care doctor. Within a week I could tell that the Co-Q-10 was helping him & asked if he could tell the difference. He thought a minute & replied, "Well, I'm not totally exhausted just thinking about doing something!!" He had been very active..and was currently building a Garden Train layout and a steam engine...when he just seemed to lose interest and wanted to sleep most of the day & stay up till 1-2 AM...and had no energy. He would say, "I'm going to do __", and wouldn't do anything. It was when his "shuffle" became so pronounced (he always rationalized every problem that he had...he had an explanation that usually sounded reasonable) that I just knew he must have PD (My father had PD). G didn't have the tremors, but he did have the shuffle. His Primary care doctor decided it was too soon to put him on Parkinson's meds at that time. I began having knee problems & went thru all of the procedures the insurance/doctors want you to prior to having a full knee replacement, in Nov. 2003. By Jan., 2004, G was having more confusion & seeing people in the bathroom...but I could always talk him back to reality "you're having a vivid dream!" I told him that as long as he knew who I am & where he is that we'd be ok. By Feb., 2004 his delusions became more frequent...he was seen by his primary care doctor who ordered a Thyroid profile and prescribed 5mg Zyprexa. G was already on Ptotonix, Lotrel, Toprol, Pravachol, Vioxx, Effexor-XR and Detrol. The doctor also discontinued the Efexxor and Detrol (there could have been drug interaction). This was Friday, we scheduled a brain scan for Monday.

He had more hallucinations that night, called the doctor & he increased the Zyprexa to 10 mg. Hallucinations, confusion got worse, I called the doctor on call (it was the weekend) and told her I was taking him off the Zyprexa & she agreed. We had a "wild weekend", he thought someone had stolen our home "even tho it looks like my home!" His daughter and sons had to come to the house...and they spent all day trying to convince him he was at home. He carried on good conversations with everyone, but no one could convince him...all Sat. night he was up, "protecting our home", waiting to be rescued...all of our children came on Sunday & spent the day with us...and that night I spent most of the night persuading G to sit in his chair and pet his cat, even tho he didn't think he was in his own home. The next morning my daughter met us & we got the brain scan done then spent the rest of the afternoon in the doctor's office until he could find a hospital bed for him & G was admitted. He knew who I was & who his doctor was & he admitted himself...but he was totally incontinent and hallucinating & confused. Exelon and Neurotonin were prescribed and Efexxor re-started and his family and i were there during visiting hours...I took photo albums & pictures of his beloved cat and after about a week, he began to "come back". The brain scan showed nothing new, so no more TIA's, and no AD. At the end of 2 weeks, the psychiatrist wanted to release him directly into a Nursing facility, but I insisted on taking him home (he was still incontinent and had to use a walker, he couldn't dress himself, but he could feed himself). They would only release him to me if I promised I would have someone other than myself there to care for him. My son took a week's vacation and stayed with us and his children (it was a second marriage) came out as they could. By the 3rd day I could see that I would be able to take care of him...he was getting stronger every day. McKenna Home Health Care sent a Nurse, OT, PT and an aide and that was a tremendous help to us. Physical therapy really worked a miracle...and the punching bag that G decided he wanted when he came home from the hospital.

After 1 month of in-home PT & OT, G was able to shower and dress himself with minimal help. I took him to outpatient PT 3 times per week for 2 months. It's been 6 months since he came home from the hospital and I call him my "walking miracle"! It took about 2 months to really get his meds balanced...he has worked really hard, he knows that if it gets too much for me to handle that he will have to go into a nursing facility...and he isn't ready to give up yet! Exelon has been gradually increased, G sees a PD/Lewy Body Disease specialist, a Psychiatrist and his primary care doctor regularly. I maintain a schedule/record of all medications/changes, etc. The Carbidopa/Levodopa was increased, but that caused hallucinations, so we went back to the lower dosage. Namenda was prescribed, but after 5 days G experienced hallucinations (which may or may not have been caused by the Namenda), so we discontinued that. The Dr. has told us that G is in a "good period", but may have "episodic moments"...and he has had a couple...BUT he has recognized them for what they are.

We were leaving an eye doctor's office (where he had gone for 50 years) and he started to give me directions to where he lived 40 years ago! He realized this and asked, "what is happening to me?" I told him that this was one of those "episodic moments", and that as long as he "knows who I am, and trusts me" we'll be ok. He gets lots of "hug attacks" from all the family...he still has a great sense of humor and we all love him dearly. It is a miracle, and a blessing, to have him "back with us", and we will "cherish each moment/cherish each other...and can never have too many Hugs nor too many Prayers!"

Miracles Do happen...but we never know what is around the corner. Thank you for all of the journals, I haven't gone to a support group, so far friends and family have given me the support I needed...thank you for your website...reading others' experiences tells me that this is indeed a "good period"...and gives me an idea of what is around the corner.



Stories, October 2004 - January 2005
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