Can I practice on you?

CalminHeart · ‎03-09-2010

I need to tell my family something and would like to practice on you. I'll find a nicer way to say it to them but here goes.

I was recently diagnosed with Alzheimer's, my worst nightmare. I'm at the very beginning so have a long ways to go before I am unable to live on my own.

I have a great specialist who is kind and an expert in the field of dementia and alzheimer's. I go back this week for the 'what's next' conversation.

There are a lot of treatments available from medicine to infusions. I want whatever I can get to help keep it from getting bad.

I don't need advice. I don't want jokes (at least, not yet). I don't need others to run my life (yet). Don't be afraid of me. Don't avoid me.

I do need support, people to talk to about my fears, people to walk this journey with me. I need hugs, compassion, empathy, not pity. I need my kids and family like never before. I want to be loved like I always have been. Don't forget me when the disease takes over my brain. I will feel them in my soul when they visit even if I can't remember or respond or remember.

------

Stress is a huge detriment to this disease and it's been over the top since I found out. I am sure I'll do better once I see my dr this week and we can plan treatment.

I've been praying a lot. I'm Catholic and the first thing I did was call my priest to receive 2 Sacraments - Confession and Annointing of the Sick. The Eucharist takes on an even more sacred meaning.

I'm begging God to not make me go through this but His will be done.

I had my Will, medical & financial POAs, and Living Will redone early this year so they're set. I've also written a lot of notes for my kids and paid for my interment, urn, etc.

Something that made me chuckle - I quit smoking in 1981. I've always joked I'd start again if I found out I was terminal. I can't because smoking can make Alzheimer's worse.

goldensrbest · ‎03-10-2010

I am not quite sure about your post, if this is what you have been told,i am truly so sorry you have received this diagnosis, you have to do what you know is best for you.

When you lose some one you L~O~V~E, that Memory of them, becomes a TREASURE.

Dusty1 · ‎03-10-2010

@CalminHeart You sound like a very strong person & you have done the best to prepare your life for wherever it takes you.

I think that the way you have explained your needs is perfect & well thought out.

I hope your family & friends accept your needs as you have stated them.

There is no way to know how this progesses & you have life to live!

Your family will follow your lead.

grandma2pkmh · ‎08-04-2013

@CalminHeart You sound like a wonderful lady and you wrote a great post. I would print your post and make as many copies as needed and hand it to your loved ones. When speaking to anyone regarding a personal illness we sometimes become emotional and also get interrupted and forget to convey things.

Best wishes to you in the future.

haddon9 · ‎03-09-2010

@CalminHeart I may not always agree with your point of view but on this you have my support. I am so sorry for your diagnosis and hope and pray that you are able to stay cognizant for as long as possible.

As another poster mentioned, printing out your message I think is an excellent idea. You have spent time collecting your thoughts on this and when you need to share this information with family things could get emotional. You could say that this is going to be hard but you need to let them know something important and either read your remarks to them or print them out.

I wish you the best.

freakygirl · ‎07-03-2014

i’m sure when it’s time to tell your family, whatever is in your heart will be the right thing to say at the moment. if they know you well and are used to you and your ways, they will understand where you’re coming from. good luck nevertheless. i will keep you in my thought and prayers and hope for the best outcome. you can do this

DSD2 · ‎01-09-2016

@CalminHeart My dear lady...

You said everything so eloquently, there is little to add.

I agree that printing out your heartfelt, beautifully written missive is the first thing you should do as @grandma2pkmh suggested.

Talk to your family as you have spoken to us.You will be surrounded by love, caring and unwavering support by those you love and who love you.Continue to live your life fully and savor every precious moment; you are in the here and now, not the future. We never know what is to come, life is fragile, precious and fleeting.

I wish you strength, courage but most of all I wish you hope. Sometimes it is all we have but sometimes it is enough.

As a Catholic, my faith has sustained me in many a dark day. In the end, it is He who will watch over you and will guide you through.

Offering you prayers and staunch support.

ThinkingOutLoud · ‎05-01-2020

First, I'm so sorry you're facing this.

Second, you're contradicting yourself. In one paragraph you say you "want whatever you can get to keep it from getting bad" but the very next sentence is that you "don't need advice". Your family may be confused about what you really want. To explain, I know someone who's been diagnosed with early onset dimentia (not a genetic cause) and I know 3 easy things that will drastically help and relayed that info and can only hope my advice to keep it from getting worse is being followed.

{Hugs}

jubilant · ‎06-10-2010

@CalminHeart You have my full support. I am and will be praying for you. My stroke 2 yrs. ago left me with significant short term memory problems.

Even though I don't have your diagnosis...I have felt some of what you are feeling now. Your faith seems to be holding you up as mine does. I know God will give you the right words to tell your family. Your practice post here sounded "pretty darn good" to me!

geezerette · ‎03-16-2010

@CalminHeart

First, I'm truly sorry to hear this. I think for most of us that diagnosis would be one of our worst fears so you are not alone in feeling that.

I think telling your family what you have said here is a good way to start the conversation. You are a strong, practical, and intelligent woman and if there is any good about this it is that you have a diagnosis early in the disease while you can still prepare for the possible consequences as much as can be done. In the end, who knows what will happen? Maybe it won't turn out as bad as what is most likely going through your mind right now.

At any rate, things will change as time goes on and since you seem to be close to your family, I'm sure you all will be able to work with the changes. Thanks to the advances in technology we have today, you and your family can continue to share the "you" you are now for a long time.

God Bless. 🧡