Time flies by so fast that I had to do a search to determine just when my mom told me that my dad had early stages of AD. That is when I joined this board and learned some things about this hideous disease.
Anyway, my 75-year-old dad is going on two years since a doctor of questionable credentials made this diagnosis. My dad and mother think that all of our local doctors are about alike. Anyway, from everything I have read here and from all my research on the web, I think the this doctor is right this time.
My dad has always been an avid reader and as a veteran reads lots of books on American History. He fits to the T everything that I have read on here regarding the progression of the disease. He can accurately tell you tons of statistics on WWII, how many men died on the beach of Normandy, how many people perished in Pearl Harbor, etc., but he can’t tell you what he had for breakfast, or even if he had breakfast. A year ago he could set two VCR’s to record two different shows while he watched regular TV or a DVD. I recently removed all of his electronics except for one VCR and printed very detailed typed instructions for recording and watching one show. I don’t even think that is still being utilized.
Dad still lives at home, drives, and until a few weeks ago still played golf. However, in the past month / weeks he has been experiencing a very rapid unexplained weight loss. He has lost interest / appetite for food. He used to be 6’2” 190 pounds. He is now at about 6’0” 147, clothes, shoes, etc. in the evening. He is a bag of bones. I personally weigh two to four pounds lighter in the morning than in the evening. My dad is drying up. He is extremely weak. In his words he feels like crap. The doctor told my mother that my dad's physical deterioration is directly related to his brain deterioration. And back to the WWII statistics I mentioned, a month ago he was extremely sharp with such statistics and old time news. Now that is not the case. He is going downhill fast.
He knows that he is losing weight and forces himself to eat. We made him this chocolate chip cake that he loves last Sunday and he is barely eating it.
I have lived in the same small town with my parents all of my life. We are very close. I am so sad!!!
For as long as I can remember my dad’s biggest wish in life is not to outlive his mind. Before retiring my dad was a supervisor over a team of state inspectors of nursing homes. I guess my question is---what is the fastest progression that you have ever experienced /observed? With this rapid weight loss is there really a chance that my dad may be deteriorating more rapidly than usual and that he may actually get his wish and not waste away in a nursing home? Does anybody ever go in just a few years as opposed to many many years as I have read about?
As far as I am concerned it is in God’s hands. If he is granting my dad his greatest wish in life by not allowing him to outlive his mind we accept that. However, with all of the research that I have been doing in the past two years I have never notice anybody go this fast.
Does anybody ever go from early stages to passing in only a few years? This seems to be inconsistent with everything that I have read.
I am sorry you are going through this horrible disease with your father. All of us here have been there or are still there. It is sad.
The time line varies, but in my Mom's case a lot went wrong in just 2 years. However, her lack of appetite and inability to process food came towards the very end. By that time she was in a NH and unable to walk because of a hip fracture, and had not driven a car for 6 years.
I worry about your dad driving. In his physical condition alone, he could pass out behind the wheel and kill a child or himself. In his mental state he could conceivably forget what a red light is for. He could also forget how to get back from the corner store.
I hope he is calm and not one of those AD victims who throws things and swings a cane at people. In any case, I think it is high time he stopped driving, and perhaps a nursing home is coming up soon, so do your research and find a good place. Often there are waiting lists.
So far nothing has been discovered that stops the disease from progressing. God bless you in your coming days and months. You have a lot of decision making to do.
Danny...As you are aware...you'll find information here in this forum somewhat different that what any doctor can prepare you for. I'm just so sorry your family is taking this journey with the rest of us.
I agree with Martha that you should be concerned about your Dad's driving. Perhaps you read here where some of us simply filed the car keys down and hung them back on the keyholder. We realized it was just the IDEA of not driving that was hard for our loved one...but, when they could "see" the keys in their familiar place...they did not panic about not being able to drive.
Your Father sounds like a very important part of you life...and I'm glad you are nearby. Of 6 kids, I was the one who stayed here in our hometown...so I noticed the progression of my Mom more quickly than siblings.
My Mom "hung on" an unusually long time...more than 10 years...and finally did pass totaly from the effects of the Alzheimer. Your phrase.."outlive you mind" hits home!
The time frame for your Father seems very quick... could there be something more happening in this frail little body? I love the respect and love that shines thru in your post...your Father knows he is a much loved parent.
Wish this could be so different for us all...........Pam
I can relate to the rapid mental deterioration Danny. My Dad has vascular dementia. He was diagnosed about 9 years ago and can his decline has been very slow. My Mom on the other hand has Alz. She went undiagnosed in her early stages. With her intelligence and Dad to blame unusual occurrences on, Mom convinced us she was ok for a number of years. She was finally diagnosed in 2006. At that time she was maintaining marginally at home, driving, and taking care of Dad as well as herself with help. In 2007 they moved to AL and she continues to do ok until the first of this year when we started noticing a rapid decline in her cognition. Since March she has lost much of her ability to comprehend and speak. It has become impossible to carry on a conversation with her. She has lost all of her ability with electronics. She carries around the remote now trying to use it as a phone. She randomly moves items from place to place and is always "packing". She is now occasionally incontinent. She does not have the appetite she had before.... especially at meals. What she does eat, she tends to eat with her fingers. She has lost the ability to recognize relative in her photo albums. She no longer reads. She tries to "go" only to wander around the courtyard circle, come back, and not realize she had a mission in the walk when she gets back. Then she repeats the desire, determination, and forgetting. She has more paranoia, sundowning, and delusions. This is all new since late February, early March.
It was necessary to move her to a new facility which could explain some of her decline but it started before the move and as actually the reason for the move. She also has sever behavioral problem which resulted in a stay in the Senior Behavioral Medicine Unit for a little over a week. She is on major psychotropic medication. But I ask the very question you are asking of the psychiatrist that treated Mom. He said, especially with Alz patients with a high intelligence level, there can be a period of very sharp decline. They tend to use their intelligence to compensate to a point that they can no longer maintain and when they decline it is what appears to be very rapidly. In fact it has been a steady decline and they just reached the point where they can no longer keep up. Mom has lost some weight as well but not as dramatically as your Dad. She still forages for chocolate.
I too worry about the driving. I had to take Mom's privileges long ago. She though she could drive. When I investigated I found that she had crushed a garden statue beside the drive with no knowledge of doing it. She backed out into the neighborhood street without stopping or checking for traffic. She was running stop signs. She parked the van, left it running, and then couldn't figure out where the keys were when she got in the house. The trip hope from the cabin which usually takes about 5 hours, took 13 hours. She was lost for hours on a route she had drive for years. She would drive off and not know where she had been when she got back. The van had a collection of new dings and dents that she had no explination for. But she agrued vehemently that she was perfectly capable of driving. Yes she maintained the basic knowledge of how to drive but she no longer had the cognitive level to drive in the moment. I am just glad nobody got hurt!!!
I am so very sorry you are having to go through this disease. I also understand the way you feel. Mom watch her Mother, several aunts and siblings die of this disease as well as her husband suffer from vascular dementia. She is now living her worst nightmare. I wish for her a short journey though this horrible disease because she is miserable. She has no other medical problem except minor allergies and a little arthritis. She is absolutely outliving her mind which is not what she wanted in life.
I will keep you and your father in my thoughts and prayers. Come back often and hope to hear from you again soon.
Alzheimer is usually the fastest of the diseases. Dementia slower until it goes past the mid point and then it can go very quickly.
My mother had Dementia for 15 years, but it was in 2001 that we had to take her driving privileges away because of a hit and run, lucky that she didn't hit someone!
In 2004 she started to lose the ability to write fluidly and shortly thereafter lost the ability to print -- she was also starting to not be able to converse fluidly, she was stuttering and having trouble finding the right word she wanted to say.
in about 2006 or 2007, she lost the ability to talk completely and just started making sounds such as "la la la" for my sister or 'no no no".
In late 2007, early 2008, my mother started to really lose weight. And then in late 2008, we noticed that my mother was eating less and less and not drinking fluids enough. In October, she started to get combative and we needed to start to sedate her to be able to get respite care for my sister by a visiting nurse.
In mid January, mom fell, was diagnosed severely dehydrated. her living will kicked in and she was in the hospital for 11 days - transferred to a nursing home and died 2-3 weeks later.
Lack of apetite (sp?) and not being able to absorb nutrients from food or supplements -- makes it towards the end of the disease. Its how fast does the body fail and the organs stop that is hard -- in Mom's case it was about 2- 3 weeks
Danny, be sure to have your Dad checked for a UTI or other infection. A urinalysis and blood test are important. Neither of my parents can properly communicate pain or discomfort. When something is physically wrong I usually see it in their behavior long before anything else. If this hasn't been doing recently you might want to request it from the doctor... just to be sure there is nothing physical going on that could cause this down turn. UTI's are so prominent with my parents that I carry a toilet hat and urine sample cup in my car!!! Hydration and hygiene are absolutely a problem with dementia patients and both lead to UTI's not to mention the sluggish function of the kidneys.
I hope you come back often and know I keep you and your Dad in my thoughts and prayers.
Thank you for the heads up on the UTI. My dad had a full blood work up a couple of weeks ago. I suspect that they checked his urine as well, but will ask my mom to make sure.
He is still very alert and communicates well and would still be very able to communicate pain. He is only now to the point where he asks repeated questions about the same subject in such a short time. Some days are better than others.
He carries a notepad and makes many notes. If I call their house and my mom isn't there he writes everything down. He is becoming more and more aware now just how bad his short term memory is.
I have known for a long time now that his short term memory was deteriorating. However, his physical abilities have only recently started going downhill so fast.
I truly appreciate everyone's help and advice. I have been reading this forum off and on now for about a year and a half and have already learned a lot. So many of you have been so kind to offer so much information.
IT is good that your Dad is keeping notes. I had a great aunt that did that and even though her short term memory was sporatic she was able to manage well with her little notebook. Mom on the other hand.... HA.... she told me she would write down the things she didn't remember. I just slapped my forehead, shook my head, and put the pen and paper back in the desk. When we would write on a calendar or in a journal for her, if she didn't remember it then she swore we were lying to her. If it was not in her reality... it was impossible.
UTIs usually effect behavior more than the physical conditions. If his cognitive abilities and behavior remain stable I would suspect some other physical problem, or just a normal progression of the disease. Both of my parents eat well and have actually gained weight. Dad's full button is broken and he eats anything put before him. Mom is a little more picky but she will gobble up her dessert and dad's along with any other sweets she can scavange.
I am glad you gave us an update and I look forward to hearing from you again. I do hope things look up with your Dad. I will keep you, your Dad and your Mom in my thoughts and prayers.
Where does one start when you find out a parent is suffering with dementia. To learn that with this particular one that a gene has been found that is linked and hereditary is scary enough. In 2006 I read in my local newspaper that a gene was found for Frontal temporal dementia, and that indeed it can produce in otherwise healthy adults. My Mother who has had this since late 2005 and has been in a nursing home since Jan 31st of 2006. She has been the most happiest person, even though the loss of her speech went through very quickly, along with this kind of dementia is the loss of her ability to walk. She fell out of bed in May of 2008 and sustained a hairline fracture of the hip, as well as the hip being jarred into the socket. She spent about 10 days in hospital, at that time she wasn't a good candidate to have surgery if she needed it she probably would have died on the table. Not only does my Mother have dementia, but a 5.2 cm aorta aneurysm, by the grace of God it has not changed in size since they did a physical on her in 2006 and as of last year in May 08. After losing a father to Kennedy's disease which is terminal and a Mother who is also terminal . . .you question yourself about things. I just know that God looks after me, and my family without him I am nothing.
Welcome to the board apachi. I had to start by accepting the reality of the situation and getting a proper diagnosis. Each dementia is different so you need to know which one you are dealing with. Then I had to learn everything I could about the disease.
Mom's Alzheimer's has been a rapid decline in all cognition and she is a very unhappy person. Dad's Vascular Dementia has been slower and he has retained much of his reasoning ability though he has lost his short term memory and he is usually a happy person. Mom is physically extremely healthy with no other major medical problems. Dad is a miracle that he is still alive with the severity of his other medical problems.
What I had to settle in my mind was that I was helping them live and not watching them die. Each of us is one day closer to death each morning we wake up. None of us know the hour of our passing. Some just have a better idea of what they might die from or when they will die than other. But nobody knows for sure. So you live each day you have until you die.
My Dad had a massive coronary in 1977. We were told he would not live through the night. Well, he did. In the early 80's he had a heart cath. We were told there was nothing they could do for him and the next heart attack would be his last. He had another heart attack in 86. Not only did he survive it but also had 5 heart bypasses. They did tell us doing into surgery that he had less than 50% of surviving surgery. That was supposed to last 10 years. In 97 he had yet another heart attack and one of his bypasses was stinted. His prognosis at the time was not good again. It is now 2009.... and he is still walking around. The vascular dementia is secondary to his heart disease but even after suffering from VD for almost 10 years he can still reason, recognize his family, and perform the task of daily living. He just has no short term memory, major sundown with delusion and paranoia, and this leads him to wander after dark. So after 32 years I have learned that no matter what, you LIVE until you die. He has watched his four daughter's marry, six grand daughter's grow up and some of them marry, and his three great grand children born and he celebrates life each time he sees any of us and we celebrate each day we have with him.
With that piece of my life I am off to ride my bike and be as healthy as I can be knowing my heart hereditary!