Advice I wish I’d been given at the beginning

Jella417

It’s been a while since I’ve gotten on here to post or read. I was overwhelmed with the confirmation diagnosis that I’d already known for my DH of ES Alzheimer’s. I appreciate everyone who tried to help and give advice. However, most of it was scary doomsday stuff that I couldn’t handle at the time. Things like you’re on the titanic and it will sink, you’re going to lose the husband you’ve known and loved, you’ll be all alone and lose all you’re friends. 

Ok. I know it’s going to get awful and I need to be prepared. Right now it is early. He can still take care of his daily stuff on his own okay. I’ve taken over the big, important stuff, but I can still go to work and not worry about him burning down the house or getting lost wandering about. So my advice to you at the beginning is to focus on the present. Be prepared financially for the future and aware of what is going to happen, but you’re not there yet. Enjoy the moments of clarity. Enjoy the glimpses of the person you’ve always known and loved. Don’t get too caught up in the bad times, the days when your person is aloof or forgetting everything and seeming self-centered, because there are break through moments. It does come back around at the beginning. It’s not all bad. The bad will come. It’s too overwhelming to think about the complete loss of the person or the caregiving required in the future. Just focus on today. Take one step at a time and handle the curveball of the moment. That is how I get by day-to-day. It saves the middle of the night panic attacks of worrying what I’m going to do and how I’ll handle it all. Leave that for when it happens. 

toolbeltexpert

Jella417 your absolutely right you need to enjoy and still do whatever you both can do. I joined and read for years, we did enjoy and do things, then when the bottom fell out we still try to focus on the things dw can do and not on the things that are lost. I think on here we post those losses and grieve them out loud.  Take lots of pictures, listen to those old memories because they are your future tools for when it isn't good.

Thanks we all need to remember to look for the light. 

Stewart 

trottingalong

I agree wholeheartedly with what you said. I rarely comment, but do come to read. I’m at the stage you are. I enjoy what I have today. I’m aware of the future, but every person who has this disease has their own journey. My DH has not progressed rapidly. He has a quick wit and great sense of humor. He can’t remember dates, times, appointments, follow or read instructions. I have become a great jack of all trades. He apologizes often for his confusion and memory loss. I tell him I’m thankful for his humor and that we laugh so hard and so often.

M1

very much agree that a sense of humor helps.  My partner was great at that, until fairly far on.  Living in the moment is critical.  Is the sun shining?  is the house warm?  If it's raining, silver lining that it's a good excuse not to go out.  All of those things are very important.  The anticipatory difficulties are tremendous.

MaryG123

That’s a great reminder Jella417.  I tend to catastrophize, and my sister often reminds me not to borrow trouble.

Ed1937

Jella, that's a good post. One thing I'd like to add. Make an appointment with a CELA (certified elder law attorney) early in this journey. Do not wait. It's too easy to put it off, then you might find yourself paying a stiff price for that.

mrahope

I am also at this stage...sort of.  Getting the dementia (rather than MCI) diagnosis recently has given me many sleepless nights and tears.  My DH can take care of his basic needs but I realize little by little I do almost all of the daily maintenance of our home (bills, obtaining home repairs and auto maintenance, cooking, grocery shopping, keeping track of all his appointments).  It's daunting now, so I can't imagine what it will be in the future, or even how long the future is, given his age of 84 yo.  He thanks me constantly and begs for my forgiveness for things he did that are long past.  I've always been a person who takes comfort in planning, so it is truly difficult for me to "live in the now".  Thanks for the reminders, everyone.

Jella417

mrahope, I am a planner, too, and I have been up nights and also had shed lots of tears. I am doing basically everything and the things my DH does do I have to double check. It is a lot and thinking about what’s to come and how I’ll do it while having to work full time and raise two kids in high school is not something I can even imagine. That is why I have to focus on now and take one thing at a time. In the meantime my DH tends to anger directed at me for making his life like a “jail”. But there are times of appreciation when he does realize I am trying to protect him and care for him and I hold onto these times. 

 Ed1937, the estate planning was done right away. We are as prepared financially as we can be. Thank you. 

ThisLife

Jella417, When I first joined (6-7 yrs. ago) my husband was at the stage/level your husband seems to be. 

I read for a few months and then quit reading because I found the dire futures too difficult to read.  I popped in occasionally to read. As our situation became more difficult, I read more and found sage advice and understanding. I agree that once you have put future safety nets in place with the circumstances we have, it is important to focus on the now.

I wish you the best. My husband has been able to function fairly independently with the supports I put in place.

BillieCDD

THANK YOU, THANK YOU. You are so right.. there are good moments.. and I still love him and cherish the time together.

Last night he awakened me as he got out of bed at 11:45 to start putting away the dishes drying on the counter so I would be happy. He is a dear dear man. Happy Holidays to all.

Crushed

DW was a physician,My mother had dementia, my chess partner was a neuropharmacologist  and I had worked in a psychiatric hospital, so there was no hiding from the future . 

At Mci in 2010 DW was 58
 I  was already Professor emeritus and I reduced all my commitments.  We filled our days with travel , sex and finally grandchildren.  I had always been a homemaker for her and I slowly took over all roles.  

 
We kept a reasonable semblance of life going until  2017.  I took her and the family to Lake Louise.  But she was going downhill rapidly.  She went into memory care in October 2017 and is still there

I agree do everything you can as long as you can

I mention sex not to be crude but because it was a "barometer" of how she was doing. 
She was always "discreet but not inhibited"  We were in a comedy club in London in 2013 and the MC was going around the room asking people how long they were married.  2 years 4 years 5 years   He gets to us and I say "38 years"  He says "wow... Do  you "still make" with her ?"  I answered "Not since this afternoon"   The club exploded in laughter and applause .  We got a the comedian's "tip of the hat"  and "well played" .