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What to tell my kids if I have Alzheimers
Andrew60
Posted: Wednesday, April 11, 2018 11:32 AM
Joined: 7/17/2017
Posts: 342


My wife sent this to me this morning so I thought I would share with you all. I wish I could write as well as the below, but as evidenced by my past posts, thats not the case

https://chermor2.com/2013/08/21/what-ill-say-to-my-children-if-im-diagnosed-with-alzheimers/

 I was skimming some other dementia blogs lately and a reader had written in saying, that though she felt guilty about it, she wished her mother would die in her sleep and not have to continue living through the pain and indignity of dementia.  I’ve heard others say things like, “I’ve told my kids if I ever get Alzheimer’s just shoot me.”

I understand where these comments are coming from, but they make my heart heavy.  I feel like these attitudes devalue my Mom’s life right now. Even though they are not specifically referencing her, they are in effect saying that people like her are better off dead. It is hard to see Mom changing and confused and upset. But she still has sweet times of love and joy, too.  And God still has a purpose for her life.

He is growing our patience as we care for her.  He is developing our tenderness and mercy.  God is giving us opportunities to show love to a dear mom who loved us all so well when she was able and strong. He’s sending us smiles and laughter with Mom’s quirky ways and funny words.  He’s challenging us to love faithfully when she is angry and difficult.

People with dementia are still people.  And God still has a plan for their lives. Even when they are bedridden and can do nothing at all, maybe their very life keeps us clinging to God more. Maybe their very existence draws us closer to God as we seek Him and cry out to Him.

I fear having AD someday myself. (My mind already concerns me too often.)  But if that day comes I’m not going to tell my kids, even jokingly, to just shoot me.  What I would say to them is this…. Pray and trust God to guide you.  Get as much help as you can.  I don’t want you to sacrifice your life plans or family for my sake, but I want to always be part of your life.

If you need to find a nursing home for me, I understand.  Pray about it and seek wisely. And then visit me often. Even if I don’t seem to know you, believe in your heart that part of me does.  Hold my hand and talk to me.  Tell me all about your life.  Sing to me and read the Bible to me, please.  Brush my hair and tell me memories of your childhood.

If I’m still able to chew be sure to bring chocolate.  (You know your mom.) And hopefully I’ll have some adorable grandchildren to marvel over.

And don’t forget to take some time to just sit quietly next to me. Hold my wrinkled hand and let God whisper to your soul.  I’m so sorry you have to go through this painful journey with me, but God will give you strength and grow you through it all.  Hold fast unto Him. Sink deep into His love.

Everything will be better in heaven.  Meanwhile, when I can’t talk anymore; just know that I love you forever and that being a mom to you was an honor and the delight of my life.

That’s what I’d say to my children. Oh, and I might throw in a “Be nice to your brother” for old-time’s sake.



Iris L.
Posted: Wednesday, April 11, 2018 1:13 PM
Joined: 12/15/2011
Posts: 16610


Andrew, I too am affected by the discouraging words of the caregivers.  Like you, I look to this period of my life as an opportunity for spiritual growth.  I have learned so much from the members here.  I have learned which attitudes I want to emulate, and which attitudes I don't want to emulate.  Peer support is very necessary.  We don't always have the same view as the caregivers.


Iris L.


BadMoonRising
Posted: Wednesday, April 11, 2018 2:09 PM
Joined: 4/22/2017
Posts: 322


Glad I raised my kids to be atheists. Otherwise I can see where there would be a battle to the bitter end. God's wishes versus my beliefs? I'd lose that one for sure and I'm not into suffering. Just sayin'

Andrew60
Posted: Wednesday, April 11, 2018 3:02 PM
Joined: 7/17/2017
Posts: 342


I agree Iris, it can be tough to read in the caregivers section. But, I cant truly imagine what it would be like to watch a loved one change slowly, and the mount of physical and emotional energy it would take to be a compassionate caregiver. In my case, my wife and I both have an unshakable faith in God, and we understand life can be tough and full of challenges, but our future eternity will be unlimited happiness. Without my faith, I would be a wreck right now.
Iris L.
Posted: Wednesday, April 11, 2018 5:53 PM
Joined: 12/15/2011
Posts: 16610


Given the fact that there is so much variability in experiences and opinions, I have deduced that it is wisest to seek my own path.  I am not bitter.  I seek a better life.  


Iris L.


Mimi S.
Posted: Thursday, April 12, 2018 8:56 AM
Joined: 11/29/2011
Posts: 7029


Re the topic title. I strongly believe kids should be told 

ASAP in an age appropriate manner.
If reading Caregivers sections bothers you, don't read. 
Some of us PWDs here have been here a long time. We are still leading good lives with some limitations.  Some of us attribute Best Practices as having a major impact on this.
There is a lot of thought lately that if one does not have the amalyoid plaque, Those exhibiting symptoms have something.  More research is needed.  
I wonder if one who does not have the amalyoid progresses more slowly.   

 


Andrew60
Posted: Thursday, April 12, 2018 10:40 AM
Joined: 7/17/2017
Posts: 342


Thanks Mimi. I do venture occasionally onto the cargivers section when Im looking for specific information, otherwise I avoid it. Reading there casues me stress, but not due to the folks who write there, but due to what I fear my wife will have to go through. 

I  have informed my kids of everything going on with me and they have been supportive, but all 3 live on the east coast, and we moved to Oregon last year.


Iris L.
Posted: Thursday, April 12, 2018 1:00 PM
Joined: 12/15/2011
Posts: 16610


Andrew, caregiving for PWDs is unlike caregiving for persons with other disease processes.  Often, the signs of dementia are missed or ignored until there is a crisis.  IMO, the best thing you can do now is to educate yourself and prepare and anticipate for the future.  It's best not to wait for a crisis.  Make a workbook for your adult children of what you think they should know and what you would want them to do, and alternatives.


Iris L.


llee08032
Posted: Friday, April 13, 2018 7:57 AM
Joined: 5/20/2014
Posts: 4405


I worry about granddaughter knowing something may be wrong with me or overhearing her parents. Now on top of all this I'm going through what I hope is just a cancer scare and I worry all the more for her and my son's. Not so much for me but for them! I tell my son's individually, if anything happens to me you better be there for your brother, with none being the wiser what I've told the other. 

Thanks for raising this important topic Andrew. Do you're children know you have MCI and that it could possibly progress to dementia? 

I rarely ever read the CG board!


llee08032
Posted: Friday, April 13, 2018 8:04 AM
Joined: 5/20/2014
Posts: 4405


Iris L. wrote:

Andrew, I too am affected by the discouraging words of the caregivers.  Like you, I look to this period of my life as an opportunity for spiritual growth.  I have learned so much from the members here.  I have learned which attitudes I want to emulate, and which attitudes I don't want to emulate.  Peer support is very necessary.  We don't always have the same view as the caregivers.


Iris L.

Most certainly this is an opportunity for spiritual growth Iris and Andrew. Practicing spiritual principles and holding on to faith is required. 

Iris L.
Posted: Friday, April 13, 2018 12:52 PM
Joined: 12/15/2011
Posts: 16610


I find it very difficult to disclose much to my relatives.  Having said that, I believe it is important to prepare the immediate family, despite how hard it can be.  One of the most memorable Oprah shows I saw was about a woman who was dying of breast cancer.  She and her husband had two elementary school aged children.  They made videos for the children for them to see as they were growing up.  Oprah asked the children what was their best memory of their mom.  One of them said, the time we sat on her bed and ate Cheerios.  The small times are important.  Spending quality time with loved ones is something to aim for, especially when time may be shorter than usual.  I believe it has been important for me to come to a sense of peace and understanding about this time of my life.


Iris L.


Andrew60
Posted: Friday, April 13, 2018 5:35 PM
Joined: 7/17/2017
Posts: 342


LLee, yes, my kids have been told everything. At this point, I have no problesm telling anyone.
Lisita
Posted: Sunday, April 29, 2018 7:21 PM
Joined: 4/3/2018
Posts: 64


Well said. We with demensia will carry on! We will not give up. God is with us and we will carry on .

Lisita