If I Get Dementia

“Every minute with your loved one is precious, because every minute keeps getting smaller” – Ashley Campbell

Recently, I have seen something posted on social media called, If I get Dementia.  It was over 10 years ago that I first noticed something was just not right with Cat and because of our due diligence it was only a year later that Cat was diagnosed with Early Onset Alzheimer’s, EOA.

They also added the caveat of, or like condition.  The reason being that it actually can not be confirmed until after autopsy, when the person’s brain can be observed.  Cat has asked that her brain and all other body parts be donated to science.  There are several different terms used for EOA.  Them being, Younger Onset Alzheimer’s/Dementia or Early Onset Alzheimer’s/Dementia.

Here is the list of different types of Dementia.  Dementia is a general term for loss of memory and other mental abilities severe enough to interfere with daily life. It is caused by physical changes in the brain. Alzheimer’s is the most common type of dementia.

Alzheimer’s disease, Vascular dementia, Lewy Body disease, Frontotemporal dementia, Alcohol related dementia, Down syndrome and Alzheimer’s disease, HIV associated dementia, Chronic Traumatic Encephalopathy (CTE) dementia, and Childhood dementia

The typical life span after diagnosis for Early Onset Alzheimer’s is 2-20 years with the average being 8 years.  Everyone’s journey varies for many factors.  I look at it as a life lesson not a death sentence.  Here are the stages of Alzheimer’s using the 7 stage scale which I use.  There is also a 4 stage scale.

Stage 1: Before memory loss

Alzheimer’s disease begins in the brain before a person starts showing symptoms. This is called pre-clinical Alzheimer’s disease.  Stage 1 can start 10 to 15 years before any symptoms appear. There is no treatment for pre-clinical Alzheimer’s disease right now, but doctors hope that in the future, there will be drugs to stop the progress of the disease at stage 1.  The risk of Alzheimer’s disease increases with age. Be sure to visit your primary care doctor regularly as you age so they can screen you for Alzheimer’s.

Stage 2: Forgetfulness

Everyone can forget things from time to time. And forgetting things can happen more often as people get older. People in the earliest stages of Alzheimer’s might forget things like people’s names or where they left their keys.  The person with stage 2 Alzheimer’s can still do things like drive and work. But memory problems will happen more often. You might notice these problems before your loved one does. If you do, you can suggest they get treatment sooner to slow the progression of Alzheimer’s.  This stage is also commonly referred to as Mild Cognitive Impairment, MCI.

Stage 3: Noticeable memory problems

This stage can bring changes that are noticeable to many people. Diagnosis is common at stage 3 because the person’s daily routine becomes disrupted.  In this stage, people commonly have problems with forgetting names and misplaced objects. 

Symptoms might include:

  • Forgetting recently read material, like news articles or books
  • Problems finding and speaking common words
  • Forgetting plans
  • Difficulty staying organized in daily tasks
  • Social or work problems

This may be a difficult time for your loved one. They may deny that anything is wrong. That is normal. But talk to your loved one’s doctor early, before symptoms get worse. Your loved one’s doctor can help guide treatment options, including medicine and care planning.

Stage 4: Major memory loss

In this stage, damage to the brain often affects things other than memory. Language, organization, and calculation skills may all be impacted. Because of this, completing everyday tasks can be difficult.  Stage 4 can last many years. Major memory problems occur in this stage. People usually remember important details from their life better than everyday details.  For example, they might be able to recall the state where they live or their spouses’s name. But their memory of the distant past will usually be worse than their memory of things from today.

Other challenges in stage 4 include:

  • Being confused about where they are or what day it is
  • Getting lost or wandering off
  • Sleep problems, like sleeping more during the day and trouble sleeping at night
  • Problems choosing the right clothing for the weather

Your loved one might have a tough time with situations that require a lot of thinking. Social gatherings might be especially frustrating. Those in this stage might be:

  • Moody
  • Withdrawn
  • On edge

Stage 5: Decreased independence

Until this stage, your loved one may have been able to live on their own with no regular help. Checking in on them might have been enough. But by stage 5, your loved one might not remember the people who used to be most important to them. Learning new things is now hard or impossible. Also, basic tasks like grooming and getting dressed may be too hard.

Common symptoms in this stage include:

  • Paranoia – Feeling like others are out to get them
  • Hallucinations – Seeing, hearing, touching, tasting, or smelling things that are not there
  • Delusions – Believing in something that is not true, for example that an imposter has replaced a family member

Stage 6: Severe symptoms

In stage 6, people with Alzheimer’s will have symptoms that will impact their ability to manage their care. They will be more dependent on others for help.  It can be difficult to communicate with your loved one at this stage. They may still use words and phrases, but it can be hard for them to express specific thoughts. For example, they may be unable to tell you where exactly they are feeling pain.

Your loved one’s personality may significantly change in stage 6. 

They might have more:

  • Anxiety
  • Hallucinations or delusions
  • Paranoia
  • Frustration with you or those around them

Not everyone with Alzheimer’s disease will have severe behavioral changes. But if your loved one is experiencing such changes, try not to take it personally. Their frustrations are part of the disease’s progress and not a reflection on you.

Stage 7: Decreased or inability to control bodily functions

As Alzheimer’s progresses, it destroys brain cells. This can lead to severe mental and physical impairment. Your loved one may start to have problems with their body shutting down. This happens when their mind can no longer process, communicate, or delegate tasks effectively.

Your loved one’s needs will increase a lot now. They will need help walking, sitting, and even swallowing. Because they are not as mobile, they can get infections more easily. At this point, your loved one will need full-time care.

Cat has settled in with Stage 6 and this stage can last several years.  I have found that this stage has subtle differences that can last a few days to weeks so I must draw upon patience and understanding on a daily basis.  Luckily her kind and loving personality, which was dominate throughout her life, still shines through. 

My additional comments are annotated by a *.  First and foremost please have a lengthy discussion with your loved one with how they would like this uncharted journey to end.  This would include a last will and testament, living will, health care directive and establishment of who will be the power of attorney.  The most difficult discussion revolves around, Do Not Resuscitate, DNR and Do Not Incubate, DNI which would include the use of feeding tubes.

  • If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.

* Please try your best to have me visit with them as often as possible.  Also encourage them to come visit me when it becomes difficult for me to travel.  Try your best to explain to the children in my life the changes I am going through.  If you find that difficult there are plenty of books that can be read to them.

  • If I get dementia, don’t argue with me about what is true for me versus what is true for you.

* You might have to demand certain things of me to keep me safe but don’t sweat the small stuff.

  • If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.

* Please keep telling me and showing me how much you love me.

  • If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.

* However if I start to lose weight or struggle to eat it is okay to feed me.  No feeding tubes, for me and if I refuse to eat please understand that is my way of letting you know I am ready to go.

  • If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.

* There are supplements that can help with that and in gummy form they taste really good.  However, understand that prescribed medications might accelerate the progression of the disease. 

  • If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.

* However, that might only work for awhile since as the disease progresses my level of understanding will decrease and you might have to repeat yourself several times.  Please do so only with a loving tone of voice.

  • If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.

* Draw on activities I did most of my life which include those you enjoy doing with me.  If at first you don’t succeed please keep trying and understand that what might worked today might not work tomorrow.  Take me to parks and botanical gardens, so I can have meaningful walks instead of simply pacing in our home or apartment. 

  • If I get dementia, ask me to tell you a story from my past.

* As my communication skills dwindle you will have to take up the slack by telling me stories and showing me pictures of our past.  

  • If I get dementia, and I become agitated, take the time to figure out what is bothering me.

* Pay particular attention to, if I might be dehydrated.  Make sure there is always something to drink redly available.  Especially when I first wake up and as time goes on you might have to remind me yourself.

  • If I get dementia, treat me the way that you would want to be treated.

* That is the golden rule, however, our discussions, when I was first diagnosed, might need you to modify this rule, to honor my wishes.

  • If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.

* Please make sure they are of the healthy variety.  Apple slices with peanut butter is my favorite.

  • If I get dementia, don’t talk about me as if I’m not in the room.

* I might try to join in with my form of gibberish which is okay.  Find a word or phrase that can be drawn upon to include me.

  • If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.

* Cat witnessed the deterioration of her dad from Vascular Dementia.  First at the VA hospital and then where he passed away at a nursing home.  This was devastating to her so I promised her after she was diagnosed that I would not put her away.  I understand the need, in her father’s case, since he was aggressive and difficult for her mom to handle.  The majority of the time we have been tied to each others hip 24/7.  It was decided that we would handle this as a team effort.  I have realized that I also need to take care of myself.  We are still able to live together in a senior living facility. I do now have someone come help me a few days a week.  I know a gentleman in his mid seventies doing the same and he said that his dad took care of his mom until she passed when his dad was 89 years old.  I figure if someone else can do it and I am relatively young and in good shape I should be able to do it myself.  As for me, I have a plan of action if I can no longer take care of myself.

  • If I get dementia, and I live in a dementia care community, please visit me often.

* I hope for this not to be necessary since I plan on stop eating or taking a one way trip to Switzerland, this time not for a race, when I can no longer take care of myself.

  • If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.

* Cherish those moments since as time goes on I will tell you the same story over and over and talk constantly.  At some point I might not be able to talk at all.      

  • If I get dementia, make sure I always have my favorite music playing within earshot.

* Tunes that I grew up on are the best.  You will be amazed to find all sorts of soothing tunes on Youtube.

  • If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.

* Leave out items that you don’t mind me moving around and please remove any items you are afraid I might break or hide.

  • If I get dementia, don’t exclude me from parties and family gatherings.

* I realize that some folks will withdraw do to lack of understanding but don’t give up trying to include me.  Sundowning is a real condition so I might not be able to be out pass sundown or with large crowds since the noise of multiple conversations might agitate me.  I also might not want to be among others for long periods of time.

  • If I get dementia, know that I still like receiving hugs or handshakes.

* My disease is not contagious.

  • If I get dementia, remember that I am still the person you know and love.

* I am still here and will always love hearing the words, I love you, often.


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