Going Home

I first saw this video in the Alzheimer's Reading Room. Imagine yourself in this woman's shoes, imagine this happening to you all day, every day! How would you want to be treated? What would you want people to do to help you? As a caregiver, what can you do to relieve the stress and panic that your loved one experiences on a daily basis? Please watch and leave your comments.

When Alzheimer's gets Violent

CNN recently posted and article on Alzheimer's and Violence. This is an interesting article with good advice. Click on title for link to article.

Forgive me readers, for I have not posted in two months

It has been almost two months since my last posting. I will not make excuses, or bore you with multiple reasons why. Whether I have excuses or not does, not change the fact that I was negligent in my duties, and promises to provide a quality blog, with quality information, and stories about caring for someone with Alzheimer's disease. Speaking of which Bill is doing well for the most part.

Christmas was good for everyone, we spent everyday for about 3 weeks leading up to Christmas explaining over and over again why we have not opened or delivered the Christmas presents yet. This involved saying "Bill, It is not Christmas yet, we still have 3 more weeks, 20 more days, 17 more days, etc." over and over again several times a day. However, I will say I have not seen so much hype and anxiety about Christmas from anyone since I was a kid, than I did with Bill waiting for Christmas.

Christmas came and went, we ushered in a new year, crowned a new College Football champion, survived NFL playoffs, and watched a fairly good Super Bowl. We witnessed it snowing 4 or 5 different times here in Alabama which is a very uncommon ordeal. It has to be that Global Warming Crap all the Democratic Doomsayers have been crying and lying about for so long. Oh wait, it is no longer Global Warming since that was proven a lie, now it is Climate Change! Oh well, don't get me started on that mess.

Back to Bill, we bought a new exercise bike that he can get on and ride, and has been doing extremely well on it. It is a recumbent bike, so he is able to sit in it very much like a chair and start pedaling. Much better than the exercise bikes with the traditional bike sit that is equivalent to getting a daily prostate exam. His first day on the bike he struggled to go .30 miles. Yesterday he did .75 miles traveling about 9 miles an hour. He is proud of himself and I have noticed him walking a little bit better, at first he was reluctant and did not want to do it, now he talks about wanting to do it, and wants to beat what he did the day before. We were originally going to purchase a treadmill, but he Doctor advised against it and suggested the bike, and I wanted the bike for my big ole . . .Never mind.

Our biggest struggle as of late has been with Bill's ability to use the bathroom. We still have to tell him every single time where the bathroom is (and I do not expect that fact to change). But now, Bill is urinating down the front of his pants when he goes to the bathroom, we are finally convincing him to sit down to urinate now, but now he either fails to tuck towards the water and ends up urinating over or under the toilet seat and into his diaper and pants that are around his ankles on the floor. For the past week or two he has been sitting down to go, but when he is done, he will pull his pants up, and leave his diaper down around his knees, and comes to me to fix it for him.

Has anyone experienced similar issues with their charge? What did you do, did not do? I have thought about some type of scotch guard water proofing the front of his pants, but have not tried it yet. It is embarrassing for him, he knows he is doing it, but can not remember any suggestions or help we try to provide. He knows that he forgets to pull his diaper up, and pulls his pants up first, but he will still do it every time. He knows he urinates down the front of his pants but still does it.

I would appreciate any and all comments, suggestions, remarks, tips and advice. Thank you

A Book Review on Alzheimer's Disease

In researching Alzheimer's Disease, attempting to learn all I can about the disease, and how to care for those that have it, I have come across numerous books, articles, and blogs.  In November, I received an Amazon Kindle for my Birthday, and immediately started downloading any book I found concerning Alzheimer's Disease.  The first book I downloaded and read is Alzheimer's Finding the Words, A Communication Guide for Those Who Care  by: Harriet Hodgson.

     "Much like a telephone, speech depends on
      transmission and  reception.  If there are
      problems on the line - Alzheimer's Disease - 
      the message is garbled.  The sender and receiver
      are having entirely different  conversations."

In Alzheimer's, Finding the Words Harriet leads us on her journey with her Mother, Mabel Clifton Weil whom suffers from Alzheimer's Disease.  In the beginning stages Harriet and her mother lived in two separate states, and Harriet attempted long distance Care-giving, this became more and more difficult with every passing day.  Harriet was then forced to move her mom to a nursing facility near to where Harriet lives so that she could properly care for her mom.

In her book Harriet briefly touches on multiple facets of Alzheimer's and how to communicate with those that have it.  Starting with defining Alzheimer's Disease, early warning signs, loss of communication skills, stages of the disease, to tips and techniques caregivers can use to communicate and help their loved ones. Through the multiple subjects she touches on, Harriet will pinpoint a problem, give an example of a situation she had experienced with her mother, then site a reference from a particular book or professional in the field on how they recommend dealing with the issue.  Followed by methods that has worked or not worked for her.

I completely enjoyed the fact that she touched on such a wide range of subjects, however they were brief and left me wishing for more information on certain areas of concern.  It is for this reason that I would give her book 4 out of 5 stars.  I would highly recommend this book to anyone who has found themselves caring for a loved one with Alzheimer's, yet found themselves lacking the knowledge to do so.

Have you read this book?  Add your comments below.

Teleconference on Caregiving for Dementia

Today I had the privilege to listen in on a teleconference by Carole Larkin on the Alzheimer's Foundation of America's Care Connection.  Carole Larkin MAG, CMC, CAEd, QDCS, EICS, is a Geriatric care manager who specializes in helping families with Alzheimer’s and related dementia issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers.

On the second Thursday of every month, the Alzheimer's Foundation of America's Care Connection holds a teleconference with a different guest speaker that caregivers like myself, can call in and listen to a qualified professional speak, and ask questions concerning our loved one.  You can connect with this teleconference by dialing toll free 1-877-232-2992 then entering guest code 271004#.  This conference is held at 1 PM Eastern time. 

Today's topic was titled Candy Bars in the Shower and Other Tips and Tricks to Manage Activities of Daily Living .  You can find recorded archived calls at http://www.alzfdn.org/AFAServices/careconnection.html.  Carole provided allot of useful and interesting information, I recommend that you connect to the above link and listen to her speech.  The information ranged from dealing with the repetitive behavior of Alzheimer patients to assisting with eating and bathing, as well as incontinence issues. 

Conversations with Alzheimer

Saturday December 4th, it's 8:08 AM,  I awaken to my oldest daughter coming downstairs.

Oldest Daughter - "Brian, Pawpaw is awake and trying to go somewhere, he said he is waiting on you to take him.  I asked him where he was going and he would not tell me, he said he will only tell you.

Brian - "OK, tell him I am on my way."

I quickly dress and go upstairs, I walk into Bill's room and he is sitting on the side of his bed with his pants halfway up to his knees, sitting in a puddle of pee.

Brian - "What's going on Bill"?

Bill - "I don't know, you tell me."

Brian -  "Well, your Granddaughter told me that we were going somewhere, where are we supposed to be going"?

Bill - "I don't know, you tell me."

Brian - "It is 8:00 o'clock in the morning, and we have no plans to go anywhere.  Where did you think we were going"?

Bill - "I don't know, you tell me."

Brian - "Is something wrong"?

Bill - "I don't know, you tell me."

Brian - "Are you feeling alright?  How do you feel right now"?

Bill - "I don't know, you tell me."

Brian - "Well, do you want to get up, shower, and get something to eat, or do you want to get cleaned up, change clothes,  and go back to bed"?

Bill - "I don't know, you tell me.  Your the brains of this outfit."

Brian-  "Are you still sleepy and want to go back to bed"?

Bill - "I don't know, you tell me."

Brian - "Well, how about you get up, we will get you cleaned up, dressed, and we will drive into town, and get you a biscuit."

 #1) I know by now that when he is set on going somewhere, we need to go somewhere.

 # 2)  When he is acting this way, and is lost in what I call "Al's World" that one way to bring him back into my world, is to change his environment, by getting him out of the house awhile.  I do not know why this works, but anytime he gets agitated, gets lost in "Al's World", having hallucinating, or delusions, that getting him out of the house for even just 15 minutes changes his mood dramatically. 

Bill - "I don't know, you tell me.  Your the brains of this outfit."

Brian - "Are you hungry"?

Bill - "I don't know, you tell me."

Brian - "OK, get undressed, and I will get your shower set up."

Bill - "OK, your the brains of this outfit."

I get his shower ready, and go back to his room, and he is still sitting in the same position, pants halfway on.

Brian - "Bill, what's wrong"?

Bill - "I don't know, you tell me."

Brian - "I have your shower going, I need you to get undressed." 

Bill now proceeds to get undressed and moves to get into the shower.  About this time, my oldest daughter yells out, "Bye, I'm leaving now, love you."  I respond in kind. 

Bill - "Who is that"?

Brian - "Your oldest Granddaughter!"

Bill - "Where is she going, to work?"

Brian - "No, she doesn't work, she is going to go Christmas Shopping."

Bill - "How is she going to go shopping if she doesn't work"?

Brian -  "Well, she is going with her boyfriend,  I guess he is paying"?

Bill - "How is he paying"?

Brian - "He has a job."

Bill - "He is going to spend all his money just on a Christmas Present."?

Brian -  "You got me,  It's his money, It's up to him how he spends it."

Bill - "Well, I will be damned, If I will walk the streets like that for that kind of money"!

Brian - I could not respond to that,  I just did not know what to say, to that statement.

We then got him showered, dressed, his room cleaned up and bed changed.  We drove into town to pick up some refills for his prescriptions and grabbed some biscuits.  All behavior and conversations were normal for the most part, until we were halfway home. . .

Bill - "I was saving that for my boys!"

Brian - "Saving what"?

Bill - "I was saving that ranch I got for the future of my boys.  I got a 3000 acre ranch for my boys,  my ole lady, and my two daughters.  I got 3000 acres down in that holler right over there!"  Long Pause,  "You got that Boy"?

Brian - "Yes Sir, I got that."  I know that Bill has never owned land other the houses he has bought and lived in since he started his family over 40 years ago. 

All of this has taken place in the first hour and a half to two hours since he woke up this morning.  We arrive home, and his behavior has been as normal as any behavior of a person his age without Alzheimer's.  We have been home for four and a half hours now. 

Recommendations and Lessons Learned

• When Bill is acting out of the normal realms of behavior, I have found that changing his environment quickly changes his mood.
• Do not argue with Alzheimer's, it can and WILL make things worst.  Try your best to keep up with the conversation by agreeing with, or just "playing along" with whatever delusional behavior they are experiencing at the time. 
• It is not important when he is clearly discussing unreal or untrue facts.  It is only important that your there to hear them, and your there to keep them safe and secure. 
• Conversations, moods, and behavior can change in the blink of an eye.  For example this morning, the only responses I got out of Bill where "I don't know, you tell me." and ""I don't know, you tell me, your the Brain's of this outfit."  Up until my oldest daughter yelled to us that she was leaving.  Then his responses and behavior started changing.

Happy Caregiving

Happy Thanksgiving everyone!  Before I share my day with you, I would like to preface today's story by telling you that what you are about to read contains some rather descriptive and disturbing rhetoric.  This is not meant to be anything other than the true, accurate, difficult aspects of Care giving.  This is a rare, but very real occurrence,  that Caregivers must deal with on occasion.  When I started this blog, one of my primary goals was to describe what a Caregiver goes through on a day to day basis when working with someone with Alzheimer's Disease.

Today as a family we were going to visit both my family and my wife's family for Thanksgiving.  My family was going to gather at my Cousin Scott's house, that was one hour and ten minutes away.  Scott just returned home three weeks ago from Afghanistan where he was serving our country in the U.S. Army Reserve.  His wife served at home anxiously awaiting his return with her daughter, one son a U.S. Marine that had already served a year in Iraq and a year in Afghanistan, while her oldest son is still active duty U.S. Navy.  I have not seen anyone in my extended family in over two years, my two brothers I have not seen since May.  My mother I have seen several times this year, so we were looking forward to getting together with them this year.  After we left their house, we were going to see my wife's side of the family which was gathering ten miles from where I live. 

We started stirring this morning around 6 AM, so that my three daughters, and wife could shower, dress, apply their war paint, I could shower and dress, and get Bill showered, dressed and ready for a 10 AM departure.  We were to arrive at my cousin's house at 11:15, and we were responsible for bringing drinks.  At approximately 10:30 this morning, Bill turned to me and said "I need you to stop at the next restroom, I have to go"!  O.K. I replied,  At the next light I turned to him and asked if he had to go One or Two.  "Two he replied."  The light turned green and I sped to the nearest restroom.  We stopped at the Shell Gas Station at the next exit and was able to get Bill out and into the store where we rushed to the restroom and stood in-line.   There was one man in the restroom, and another waiting, the woman's restroom was occupied and had three other ladies waiting to get inside.  

Waiting outside the restroom, the first man exited and the second man quickly went inside and locked the door.  Standing there,  I watched as Bill was showing signs of stress,  very much like how retail security feels when waiting to unlock the doors on Black Friday,  with thousands of customers pressing on the doors to grab those two televisions sets they advertised at the low low price of a dollar three ninety eight! Anxiously waiting, Bill turns to me and says "I hope I don't Shit myself"!  Yo, Mike!  We have a clean up on aisle three!

Finally the bathroom door opens, and Bill and I rush in,  he is turning to back up to the toilet, while trying to pull his pants down at the same time.  I am trying to undo his belt at the same time,  Now this is where I insert the very important aspect of dressing your charge appropriately.  I realize we are going to visit family on Thanksgiving, but there is no reason to dress him up in clothes that require allot of tying, buckling, snapping, and zipping.  Try aiming for the quick, slip on and slip off, easy in, easy out, bada bing, bada boom!  That is what I get for listening to the voices in my wife's head, I knew better and went against my own instincts.

With pants around his ankles and diaper almost to his knees, still standing, he announced it was too late,  and he was right.  With explosive diarrhea, he messed inside his diaper, outside his diaper, inside his pants,  outside his pants, all over his legs, shoes, and socks.  Diarrhea on the toilet seat, under the toilet seat, outside the toilet bowl and on the floor, yet NONE made it into the bowl.  Then he did what he went into the restroom to do, he sat down, right on the toilet seat, that was covered in poo.   Did I wish everyone a Happy Thanksgiving yet?  I proceeded to try to remove Bills shoes, pants and diaper so I could proceed with the clean-up on aisle three. 

Forty Five minutes later after washing his pants in the bathroom sink, changing his diaper, cleaning him up with single ply Scott toilet tissue (a whole lot of it).  I also cleaned the bathroom of most of the mess, the best I could.  Bill was highly embarrassed and upset, he apologized to me several times,  the first time he apologized I said "that's OK, this is why I get paid the big bucks"!  He laughed and said "well even if you were getting paid, no amount of money is worth this"!  My reply "it's a Shitty job, but someone has to do it."  My wife who anxiously awaited our exit from the restroom managed to escort her father to the car with the utmost dignity, and grace they could muster.  I finished cleaning what I could, and wish to take this opportunity to give a shout-out to the gentlemen of the Shell station off of Arkadelphia Road for the use of their restroom, and Happy Thanksgiving.

Although we had the forethought to bring a clean diaper, we did not bring an extra set of clothes.  We then had to return home about 30 minutes away, so Bill could shower and change clothes.  We then proceeded to our second destination that went off without a hitch, however when we arrived back home, my wife did have to coax Bill out of the car because he said he did not live here, and would just wait in the car for us.  He has been living with us for 10 months now, once inside he stated the house was too small for all four of us to live in.  We have 6 people, 4 bedrooms, and 1 of the six goes to college, we gave her room to Bill.  

We did not get to see my family again this Thanksgiving, but did manage to make it to my wife's family gathering.  Although I did not get to visit my family I did have a Happy Thanksgiving and am very Thankful for all that God has blessed me with.  I am thankful for my family, I am thankful for all of my cousins safely returning home from war both from Iraq, and Afghanistan.  I am thankful for my wife, children, and father-in-law as well as the rest of my wife's family that I was able to visit today.  I am also thankful for all of you and hope you continue to read my blog and ask others to visit as well. 

I hope that you gather some helpful insights from this article so that you can plan for any unfortunate events.  Plan for the worst, Hope for the Best, and hopefully you will never be disappointed.  Because Shit Happens!