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Confronting Denial & Living with Dementia Alone
Acoxe3
Posted: Monday, March 4, 2019 7:57 PM
Joined: 2/9/2019
Posts: 114


Here's some thoughts I had recently.  What do all of you think?

Denial:

My family members are slowly moving through the grief process.  Some are still in denial and aren't seeking solutions and finding help.  While I understand that everyone processes the heartbreak of Alzheimer's differently, and some may take years to--or even never--come to the conclusion that their LOs need help, I am becoming painfully aware that those with dementia cannot wait for all their family members to come around.  These dear people need help NOW!!  People in denial may treat their LOs with dementia insensitively, or even cruelly, without even meaning to.  They may consider them just stubborn.  Their LOs may be experiencing violent, frightening delusions but are not being provided healthcare.  ("He just needs to stop acting like that--I don't believe he can be that mean!")  Maybe their LOs are being argued with and accused of being non-cooperative or just plain belligerent, all the while the communication style is throwing them deeper and deeper into the darkness and fear of dementia.

Alone:

I'm also thinking about those people with dementia who are alone.  What about the homeless or those whose family members have passed on?  I read one sad story on the Caregivers Forum about a man whose 91-year old aunt was living with dementia in a hoarded house, dumpster-diving on the streets of New York for three years before authorities found her and literally rescued her.

Regarding denial: Those who have the ability to help and take action should, even in the face of the anger or resistance from those who are still in denial.

Regarding those living with dementia alone: On the societal front,we can move forward with legislation and/or policy that helps those with dementia who are living with this alone, i.e. the homeless.

Thoughts?


 

 


ruthmendez
Posted: Monday, March 4, 2019 9:08 PM
Joined: 9/8/2017
Posts: 2314


Acoxe3 wrote:

Here's some thoughts I had recently.  What do all of you think?

Denial:

...  People in denial may treat their LOs with dementia insensitively, or even cruelly, without even meaning to.  ... Maybe their LOs are being argued with and accused of being non-cooperative ….. while the communication style is throwing them deeper and deeper into the darkness and fear of dementia.

...

Thoughts?


I have been thinking of this off and on, and lately more so.  Was I responsible for throwing my dad deeper and deeper into the darkness of dementia?  Did my frustration and cruelty accelerate my father's decline?

Most of the time I can be patient, then suddenly, I burst and it can be ugly.  I shoot the roof. It's hard when being raised a certain way.  So being kind and patient with love is not one of my attributes and not something I'm familiar with.  I'm more on the go, and don't appreciate being held back for anything anymore.  

But that had to change.

Lately, I just do the job, and take care of dad.  I don't think I'm a great caregiver.

When my father was going deeper and deeper into the disease, I chose not to prepare myself for it because I was certain he wouldn't have Alzheimer's.  I was certain we would never be where we are now. However, I did take him to an attorney and I'm so glad I did.  I did jump into his business to begin closing it down.  All of that, and trying to keep my own job, didn't allow me to concentrate on my father, but rather making sure he wouldn't lose more money on his business, placate his greedy @ss employees, make sure no one came after us, deal with one of my child-like sisters,....I was angry all the time.  My poor dad suffered the consequences.  I was mad that he left so much undone and he had no understanding of anything.  

That's just my story, and maybe not an excuse for the denial....but mostly, I think I was in denial because I really did not want to ever be where I am now.  Maybe for me, it was better to not anticipate the future because it would of stressed me out more.  I sort of walked forward and forward with a blindfold.  To not be scared of the future.  It felt like I was on a horrible dark train ride, and I could not stop it.....Now it's just stalled somewhere.

 

The topic of living alone with dementia scares me.  I'm not sure what our future looks like, but this is a very serious concern.  One thing for certain, I'll be looking out for any neighbors I may see like that. At least now, I know the signs.


Acoxe3
Posted: Monday, March 4, 2019 10:12 PM
Joined: 2/9/2019
Posts: 114


Thank you so much, ruthmendez.  I, too, think about the wasted three years I literally badgered my mom.  I regret my behavior. The only thing I can do now is love her as best I can and reach out for help when I’m not doing so well.  I have asked her for forgiveness.  She was gracious and did forgive me.  I am learning to forgive myself.  Our relationship is so much better now.  She was in the early stages then; now she is in the mid stages.  It does bring home the responsibility we have to help others through their denial when we can—now that we have worked through this difficult stage—and at the same time protect our LOs from behavior that can damage them.

Yes, this does make us so much more aware of those who are alone.  It is indeed scary.  Anyone out there working on this at the societal level?   I would love to join you in the cause!


chrisp1653
Posted: Tuesday, March 5, 2019 2:24 AM
Joined: 1/23/2017
Posts: 1219


Ruth, and Acoxe3, to be fair, this is not a disease that gives us a lot of time to learn except by using the school of hard knocks. As far as society is concerned, how can we expect them to be willing and wanting to help when we ourselves balk at every new challenge - even after we have ( seemingly ) come to grips with what we are facing as caregivers ?

Just another thought, and just off the top of my head.


Acoxe3
Posted: Tuesday, March 5, 2019 7:53 AM
Joined: 2/9/2019
Posts: 114


Good thoughts, Chris.  Just emphasizes more the need for more support and advocacy.  I have heard the saying that sharing God’s love with one another is like one beggar showing another where to find bread.  Well, aren’t we all just “beggars”?  Imperfect, inadequate on our own—“flawed”?  But even in our flawed state we have found some “bread” to help us deal with the “hunger” of dementia.  Now we are responsible to lead others, even when—especially when—we still need bread ourselves.

And yes, asking society to change is sort of hypocritical when we don’t!  We are part of society, though, and, as they say,we can “be the change we want to see in the world”!


Jim Broede
Posted: Tuesday, March 5, 2019 10:39 AM
Joined: 12/22/2011
Posts: 5462


ruthmendez wrote:
Acoxe3 wrote:

Here's some thoughts I had recently.  What do all of you think?

Denial:

...  People in denial may treat their LOs with dementia insensitively, or even cruelly, without even meaning to.  ... Maybe their LOs are being argued with and accused of being non-cooperative ….. while the communication style is throwing them deeper and deeper into the darkness and fear of dementia.

...

Thoughts?


I have been thinking of this off and on, and lately more so.  Was I responsible for throwing my dad deeper and deeper into the darkness of dementia?  Did my frustration and cruelty accelerate my father's decline?

Most of the time I can be patient, then suddenly, I burst and it can be ugly.  I shoot the roof. It's hard when being raised a certain way.  So being kind and patient with love is not one of my attributes and not something I'm familiar with.  I'm more on the go, and don't appreciate being held back for anything anymore.  

But that had to change.

Lately, I just do the job, and take care of dad.  I don't think I'm a great caregiver.

When my father was going deeper and deeper into the disease, I chose not to prepare myself for it because I was certain he wouldn't have Alzheimer's.  I was certain we would never be where we are now. However, I did take him to an attorney and I'm so glad I did.  I did jump into his business to begin closing it down.  All of that, and trying to keep my own job, didn't allow me to concentrate on my father, but rather making sure he wouldn't lose more money on his business, placate his greedy @ss employees, make sure no one came after us, deal with one of my child-like sisters,....I was angry all the time.  My poor dad suffered the consequences.  I was mad that he left so much undone and he had no understanding of anything.  

That's just my story, and maybe not an excuse for the denial....but mostly, I think I was in denial because I really did not want to ever be where I am now.  Maybe for me, it was better to not anticipate the future because it would of stressed me out more.  I sort of walked forward and forward with a blindfold.  To not be scared of the future.  It felt like I was on a horrible dark train ride, and I could not stop it.....Now it's just stalled somewhere.

 

The topic of living alone with dementia scares me.  I'm not sure what our future looks like, but this is a very serious concern.  One thing for certain, I'll be looking out for any neighbors I may see like that. At least now, I know the signs.

 

 

Don’t underestimate yourself, Ruth. You are a darn good care-giver. Maybe in large part because you are a very decent human being. You truly care. I’m impressed. With the way you handle life. Keep it up. You are a winner. --Jim

 

 



ruthmendez
Posted: Tuesday, March 5, 2019 10:48 AM
Joined: 9/8/2017
Posts: 2314


Thx Jim! I’m still learning. :o/
Jim Broede
Posted: Tuesday, March 5, 2019 11:00 AM
Joined: 12/22/2011
Posts: 5462



Care-giving is a constant learning process. Wish I knew. At the beginning. What I learned after 13 years on the job. And even now. There’s so much more to learn. It’s changed my life. Significantly. In terms of attitude. And awareness. One never knows it all. Which is good. If one recognizes it. --Jim

 


Vik
Posted: Tuesday, March 5, 2019 6:10 PM
Joined: 2/26/2019
Posts: 172


I learned alot from your post. I live alone and it gets a little scary at night by myself.  Ive out up alot of nite lites which has helped. If im havimg a particularly bad day, i leave my main lite on.  My mom hasnt accepted my dememtia! She just keeps saying im gettimg old (im 66).  It hurts when she says that but i just hav to realize she hasnt accepted my diagnosis yet. I dont know what my dad thinks of it as he doesnt say anything about it at all.
Acoxe3
Posted: Tuesday, March 5, 2019 6:52 PM
Joined: 2/9/2019
Posts: 114


Oh my,Vik, how can we help you?  Please know that I will be praying for you that you will find the help that you need.  Please let us know how you are doing. What you are going through just makes me want to take action even more. 

Know that you are loved and thought of -- I hope my saying this will help you sleep peacefully tonight.  I will not forget you.

 


DonnaSto
Posted: Wednesday, March 6, 2019 3:59 PM
Joined: 3/6/2019
Posts: 3


I have just signed up to this website. This is my first post. I saw the subject of "denial" and had to comment. I have been saying I am in denial. My brother (15 years my senior) was diagnosed last fall ALZ. We don’t get together often, this is not new. We love each other but just don’t see each other much. We have tried to make plans and they have fallen through at the last minute. He is married to a woman who used to be a nurse in an assisted living facility. She is a wonderful person, she has her own adult children who they spend a lot of time with. 

The last time I saw him, last summer, he was obviously showing signs of forgetting things. I have not seen him since he has been formally diagnosed with ALZ. 
My sister-in-law posted on Facebook that she wished she could get some time away to go visit friends. I called and offered to come up and stay with my brother while she did that. She called and declined the offer, but we are getting together for lunch this week. She says I won’t notice a big difference, but I’m afraid I will. I’m scared to see the man I have always looked up to in a declining state.

Thoughts?


chrisp1653
Posted: Wednesday, March 6, 2019 5:04 PM
Joined: 1/23/2017
Posts: 1219


In my mind Donna, denial is de first line of defense - please pardon the pun - before we can accept or even begin to cope with dementia. You need that line in the sand so you can rally your forces in preparation for the battle. I suspect that even in the ones who say that they accepted right from the start probably had a little bit of denial first. Dementia is a hammer blow, and we all need a moment to get our feet back beneath us.

I'm sure you've noticed the underlying theme here, which is " on the job training. " Nobody knows it all. Go in there open minded, and I'll bet you do just fine.


DonnaSto
Posted: Wednesday, March 6, 2019 5:33 PM
Joined: 3/6/2019
Posts: 3


Thanks, I appreciate your support.
Acoxe3
Posted: Wednesday, March 6, 2019 8:02 PM
Joined: 2/9/2019
Posts: 114


Hi,  Donna,

I, too, add my wishes of support and encouragement to Chrisp's.  It will be jarring to see your brother, but good for you for making yourself available to the situation.  Sometimes people say initially that they don't need help, but your presence is so incredibly needed.  You can be the comfort that your family really does need, the shoulder they can cry on.  This will be hard for you too, but grief shared is a little easier to bear.

Hang in there.  You are doing the right thing.  Keep us posted.


DonnaSto
Posted: Thursday, March 7, 2019 5:08 AM
Joined: 3/6/2019
Posts: 3


Thanks. I know it will be tough. I'll keep you posted! Thank you.
George K
Posted: Thursday, March 7, 2019 6:23 AM
Joined: 12/16/2011
Posts: 2815


ruthmendez wrote:

.  Was I responsible for throwing my dad deeper and deeper into the darkness of dementia?  Did my frustration and cruelty accelerate my father's decline?

 

Ruth, this damned disease is an organic disease of the brain.  This damned disease is not accelerated by emotional distress.  The Law of Hippocrates is: "First do no harm!"  The second Law of Hippocrates is: "Neither do no any harm to thyself!"  Ruth, give yourself a break.  You're a human being, not a perfect being.  

For what it's worth, denial is a shock absorber for the soul.



ruthmendez
Posted: Thursday, March 7, 2019 10:20 AM
Joined: 9/8/2017
Posts: 2314


George K wrote:
...

For what it's worth, denial is a shock absorber for the soul.


 George!!!  Good to see ya!  Thx George.  I kinda feel the denial sort of helped me in a weird way.  And, I do believe God knew how to direct me by making certain things happen, knowing how I would react without me realizing that these things had to happen for me to get up and take some kinda action.  I felt something was coming, but I didn't know exactly what, and there were a few pokes here and there that made me angry.  That anger motivated me to get things rolling and I was able to get things done in time.  If it wasn't for a certain family member that pissed me off (and other things), and if we were always in good terms, I probably would of remained lazy, without realizing how bad my dad was going to get. 
Now that time has passed, I made amends and I'm ok now.  It's best to let things go and not remain bitter.  When my dad passes, I would like to see everyone there, and not have ill feelings with anyone. 


MissHer
Posted: Monday, March 11, 2019 11:01 PM
Joined: 11/13/2014
Posts: 2345


This one was in the morning.