true story about alzheimers disease

[bluejean30]

Jan's Story: A Love Lost to Alzheimer's - CBS News Video
Warning! This is very sad.

[The General]

Very sad to see how lives, around her, are changed forever and the cost of the "Long Farewell"

Steve

[Frank P. Martin]

Yes, it is a sad story, but it stops there. It doesn't even hint of what comes later as the disease progresses. Alzheimer's will test, wear down and sometimes even break a family's "durability".

This is probably the longest post I've ever composed. But, for what it’s worth, below is a brief synopsis of what our family experienced when my mother had Alzheimer’s.

2005-2006

Neither I nor my two sisters ever thought our mother had Alzheimer's (and that's true in a lot of cases). There were some subtle signs, like receiving a Christmas card from her with our house number omitted from the address- errors anyone could make. What made it even more difficult to see the changes in her was that my dad would "cover" for mom to hide the problems that were occurring at home- He didn’t want to cause concern. In fall of 2006, my dad had a knee replacement. Without my dad to “cover” for her, my sisters and I finally got to see the “real” mom. She said things that didn’t make sense and seemed confused at times. However, we all thought she had dementia, not Alzheimer’s.

2007

On MLK Day, my parents were out shopping and my mother fell in the parking lot breaking her hip. Fortunately, for her, the break was such that the doctors were able repair it by performing a hip replacement. This avoids the long bedridden period that kills many hip fracture patients. Mom was a constant problem for the hospital staff because she was always trying to get out of bed, find her clothes and go home (She didn't think she broke her hip and didn't remember the fall). After the hospital stay, she was sent to a nursing home for PT. We had such a problem with mom trying to get out (she wasn’t in an Alzheimer’s unit) that we had to provide 24hr coverage with someone present in the room. We accomplished this by having my dad be there during the day, then, one of us children covered the evening and we hired a person to stay with her overnight. One thing I learned is that even with the Alzheimer’s mom could be sneaky. One Saturday morning, I was “on duty” watching her when she asked me to get her a cup of coffee. I thought this as unusual because my mother rarely drank coffee, but she hadn’t been eating (or drinking) well and I would have been elated to get anything into her at the time- so I went off on my mission. When I returned with the coffee, there were two nurses in the room with her. She had gotten out of bed and was looking for the way out to go home.

Mom spent about a month at the nursing home. When released, she came home and mom & dad returned to their little game of trying to keep as much information about what’s going on from their children as possible. However, it was starting to become more difficult. Mom got to the point where she couldn't remember how to cook. She would stand there, looking at the stove. She knew she had to do something there- but didn't know what. Housekeeping suffered. A home that used to be neat and tidy now had an “unkempt” look. Eventually, she lost the ability to dress herself properly. On one occasion, she and my dad went shopping and stopped for a visit at our house afterwards. My wife and I were shocked. All my mother was wearing was her underwear and a slip.

2008

As the disease progressed, dad still wanted to keep mom at home. Conversations with mom varied from her being "right as rain" one minute and then totally "off the wall" the next. She'd tell us about (imaginary) people living in the house. My father became a multi-faceted person in her eyes. Sometimes he was her husband, sometimes he was my mother's father and sometimes he was her son (me). She began hiding things all over the house. My wife found jewelry hidden in a planter one day while watering her plants. Very few family pictures exist because mom went through the photo albums, ripped up the pictures and threw them away. When we asked her why, she responded that she didn't know anyone in those pictures, so why keep them. My dad would put her medication out twice a day but how much of it she actually took, no one knows; she’d hide the pills. On one visit, I found at least 25 pills hidden under some place mats stacked on the kitchen table. A further search revealed pills hidden in other places throughout the house too.

One day while my dad was napping, mom decided to leave home and simply walked out the door. Upon awakening and realizing she was nowhere to be found, he called all of us children and we raced to the house to hunt for her. Fortunately, she only went a couple of doors away to a neighbor’s and they brought her home. After her return, we were all sitting in the living room. Mom said she left because there was this man living in the house who was mean and beat her up; he even shot her in hand with a gun. Knowing this was impossible, I asked her, "What hand did he shoot you in, mom?". She paused for a moment, looked at her right hand (and saw there was no wound), then looked at her left hand (no wound there either). She raised her head, looked me straight in the eye and said "I don't remember.". Sad as it was, it took all I could to keep from laughing. Sometimes you have to laugh. It’s the only thing that keeps you from crying.

2009

Dad was still adamant about keeping mom at home and claimed he could still take care of her. But as time marched on, the Alzheimer’s sapped more and more functionality from mom. She became incontinent and couldn't change herself. My dad wasn’t as diligent at changing her as he should have been and she contracted a UTI. This turned out to be a blessing in disguise as we finally got mom out of the house and into a facility where she could get the care she really needed.

Mom was admitted to the hospital and, after she was well enough, transferred to a nursing home to receive some rehabilitation because she had become so weak. Again, she was placed in a non-secure facility- bad move. Mom was getting wheelchair bound now and spent much of her time wandering among the rooms in the wing.

As her rehab at the nursing home was nearing its end, everyone (and finally, my dad) agreed that mom needs to be in an assisted living facility. We found one that met our requirements and at the interview with the admissions personnel, they asked if we thought mom was a flight risk; to which we responded no. But that night, at the nursing home…

…in the wee hours of the morning, mom got in her wheelchair and, somehow, managed to escape outside into the parking lot. She made it as far as where the driveway begins its decent to the street. The only reason she didn’t get any further was because the wheelchair had run off the hard surface of the driveway and became stuck in the mud. The Almighty was watching her that night because had she remained on the driveway, it was about a 200 foot downhill run to the street where she would have been seriously hurt by either colliding with a car or smashing into the guard rail on the opposite side of the road. When we notified the assisted living people about mom’s “adventure”, she was placed in their secure Alzheimer’s unit.

It’s no picnic visiting an Alzheimer’s unit; People in various stages of the disease wandering around the unit; Many with blank stares looking at you and trying to figure out who you are. It’s a real melting pot and Alzheimer’s doesn’t discriminate- Male, female, black, white, war veterans, housewives, career people, the poor, the rich, you name it! To exit the Alzheimer’s unit, there’s an electric door that requires a four digit code to unlock it. The code is conveniently written backwards on the trim above the door. However, none of the Alzheimer’s residents are coherent enough to figure it out. Yet, a few residents will occasionally come to the key pad and punch in a few numbers in the hopes it will open. It reminds me of playing the lottery… maybe they’ll get lucky. All the resident rooms are made to look like an efficiency apartment complete with kitchen- However, nothing but the refrigerator actually works. Pictures of loved ones and other artifacts from home adorn the residents’ rooms in an attempt to help the resident stay familiar with their family and surroundings. There are no locks on any of the residents' rooms. Residents can wander through all the other residents’ rooms, drawers, and closets sometimes taking things. But they’re not stealing- they just think it’s theirs. Many times, things were missing from my mother’s room and it was not unusual to visit and find her wearing some article that belonged to another resident.

As the Alzheimer’s gripped harder, mom became less and less talkative. When she did talk, it was usually a request to go home. But a lot of her conversation was nonsensical or just gibberish. My dad could no longer drive himself to see her so one of us children would have to take him to visit mom and bring him back home. The hardest visits were about to begin.

2010

By now, it was just a matter of time. Mom was wasting away- almost like someone with cancer. Her desire to eat is pretty much gone and she’s so weak that she can no longer feed herself. Getting any food in her is a challenge. She’s using a Geri chair now as mom doesn’t have the strength to support herself in a wheelchair. Pillows are inserted between her and the sides of the chair to help keep her erect. Any speech is unintelligible. As the end neared, she spent almost all her time in bed. Bedsores developed and, even in her non-communicative state you could see and feel the pain she was enduring. We’d sit in the room with her in silence… and watch… and wait... and pray for God’s mercy.

April 17, 2010- Mom’s 90th birthday. A day of celebration for a normal person. For mom, we visit, wish “happy birthday” but there’s no emotion, no response. She’s lying on her side in somewhat of a fetal position, facing the wall, motionless. In my estimation, I don’t think she even weighs 90 pounds. She doesn’t even turn to acknowledge our presence or seem to sense we’re there. Breathing seems labored. In my eyes, it’s like the brain had died but the rest of the body hasn’t figured it out yet.

April 18, 2010- They call from the assisted living facility. Mom’s breathing has become very erratic and we’d better come as soon as possible. We do, but it’s too late. She was already gone. Alzheimer’s, and its associated complications, claims another one. Had mom survived one more week, she and my dad would have celebrated their 70th wedding anniversary.

[NLOVNIT]

No one, save those who have walked in their shoes, can relate to the devistation Alzheimer's can inflict on a family. My father passed away, from complications of both stoke & Alzheimer's, just weeks after President Ronald Regan died.

A few years later, I came across this video on YouTube. Ken's lyrics, born from listening to the President's funeral, are beautiful and so poignant.

Lori-

YouTube - The Long Goodbye- Ken Johnson

[The General]

May they rest in peace.

Steve

[two2go]

My 82 yr. old stepdad found his car keys that my mother thought she had hidden well enough, got into his car at 1 AM in December of 2006 and drove from Columbus to Valentine, Nebraska, about 5 hours drive, at night. He ended up stuck in a farm field and was luckily found the next morning by the farmer. More amazing, he was stopped by a Columbus policeman for sitting at a green light too long, and was let go because he apparently was able to seem OK and somehow produced the necessary papers. When he was found, he said he had a great trip through Wyoming with two "buddies", none true.
We put him in a secure facility immediately where he slowly wasted away for 4 years, finally succumbing to the Alzheimer's this past November. Death is a blessing for this, and we all feel we lost him 4 years ago. He had great care, and the hospice care he got the last 4 months was outstanding. Trying to live with someone in this condition does them no favors, and is too stressful for the family.

[paulrtaylor]

My dad has this and he would seem to be in about the middle of Franks story. I hate to think about it, but it seems like my brother and I and our wives have a long way to go.

[SRT]

Over a period of about 5 years we watched as my MIL followed the same path as mentioned above. MIL did get out of the 4th floor secure alzheimers at the nursing home. They found her several blocks away in the snow. It was a blessing when she passed on. Took a toll on the FIL.

[Ed S]

Frank,
OMG, you pretty much nailed the exact events my family has experienced with my mom. Our time table is a bit longer but this past year the disease has progressed to the point where dad was no longer able to handle mom (not sure how he was able to so for the past two plus years). As of last month she is in a nursing home.

I was going to go into some detail about her struggle with Alzheimer's as well but I will hold off for now.

I will suggest this to anyone who will be facing what Frank and I have is to seek out as much information as you can about Alzheimer's and the stages of this disease. Talk to people who are the care givers of people with Alzheimer's to get a flavor of what life is like dealing with this on a daily basis. Involve your family members so everyone is on the same page so when the difficult decisions have to be made you are prepared and educated and so that you know you are doing the right thing at the right time without a family conflict.


bluejean, thank you for starting the post

[Ed S]

Just an after thought:

According to the US Dept of Heath and Human Services web site the estimated funding for the year of 2011 for:
Alzheimers is .......$480,000,000
Hiv/Aids is...........$3,184,000,000


Seems to me but I am not a DR. safe sex will reduce HIV and Aids and a simple blood test will show if a person has it or not.

Did I just open a can of worms???

[Ray,IN]

I made it through eveyones posts, and now must wipe the tears from my eyes. My Dad died with dementia Dec 22,04. Actual cause of death was pneumonia. There is no test for Alzheimers until after death, which is a brain tissue examination. Mom declined the test for Dad, and we accepted the diagnosis of dementia by 1 GP, and 3 specialists.
The local Alzheimers support group was a tremendous help to our family. We learned the what, why, how, and an estimate of when Dad's condition would change (stages) and how to deal with our emotions while caring for him.

[Irover]

This is such a sad post! I will be 60 this July! I lost my mother to this in 1967 after watching her waste away form the age of 11, I had just turned 16 when she died. My Dad kept her home up to the last few months. She got real mean and I had no concept of what was happening to my sweet Mom!! I lost a brother in 2206 I stayed with and watched him go through the loss of his mind, But he was good natured and did stuff that was hilarious. The there is another brother in the nursing home since 2007. Is it Herditary! I think so! They believe they may a test. Would I take it? No! If I was aware of getting something that is devastating as this. I do not Know what my Outcome would be. I just try to live one day at a time and trust in God. I am a single who travels this country in My motorhome. Just had a thorough physical and mental evaluation done this past September. All Is Ok, except for thin skin and bruise easy. Irover

[Ed S]

Ray, So sorry for your loss. Not easy to deal with this type of death.
Take care

[jodann]

Wow !! All the previous posts ONCE AGAIN reinforce the fact that I am truly blessed to have a mom, who at 96 years of age remains so very mentally sharp & has a wonderful sense of humor. I treasure her !!