A new perspective on my situation

Denise1847

I have been longing for a tomorrow where I have freedom to come and go, not have the constant pressure and fear, and I am not constantly thinking about when the next shoe will drop and if I will be able to deal with it.

A book I just read offered several profound statements that were "ah ha" moments for me. Maybe these will help someone like me who is always thinking about tomorrow and not finding simple blessings in the present.

"You have to stop flicking ahead and just concentrate on the page you are on."

"You have to keep walking forwards. But you don’t always need to look ahead. Sometimes you can just look around and be happy right where you are."

"He who fears he shall suffer, already suffers what he fears.”’"

Wag91

Feeling the same way..DH is in stage 7(b) with eod/ftd/ppa non-verbal. Diagnosed in 2018, forced into early retirement in 2019, quit my job to become full time caregiver, have in-home hospice since last year...I do have support and services in place 6 years into this hell where I'm told it is only going to get worse...but he is so healthy otherwise.....so, another month, another year, everyone is different....I miss my freedom too Denise, to be able to walk around Target aimlessly is on my bucket list 😉

PS

Love the quotes you shared

marier

I miss my freedom also. I do try to stay in the moment. Not dwell on the future nor think to much about the pass. The pass brings tears of sadness rather than joy. I grieve for what "could of been". I try to enjoy the moment, the smell of the garden, the walk I sometimes get to take, the joy my dog brings me etc...

Hopefully I to will be able to walk in freedom from caregiving!

ghphotog

I also am hoping when I finally place my DW that I can have the freedom to do what I want and to go where I want when I want without always on edge, scheduling everything on how we can get it done while I'm watching my wife at the same time. It is challenging. It all revolves around her. . .and I mean everything revolves around her.

Example, I've been needing to get a clean urine sample for the lab but it's been so hard. Many times my DW poops in the catch basin and contaminates the sample, she can't help it of course. Finally got a litte bit this morning, scheduled the drop-off but my appt didn't get confirmed for some reason but the technician at Quest Diagnostics was so nice and polite and when I explained I just need to drop off a sample she took me in right away and I was out of there in 5 minutes.

The last time I was able to get a clean sample the lab order was sent to Tri-Core. I walked in, lots of people wating, my wife in the car and I'm nervous about taking too much time and her becoming scared and confused, getting out of the car sobbing and walking around the parking lot. I walked up to the check-in counter and asked to drop off the specimen, "Take a number!" she ordered, so I did. I provided my phone number as they were supposed to call when I could drop it off. I waited an hour in the parking lot with my wife and never got a call. Needless to say the specimen was no longer valid.

I also will be glad when I can go places knowing I don't have to stress about bringing my DW in and having her act out in public or waiting in the car while I stress out trying to keep and eye on her in the parking lot. . .

ImMaggieMae

Denise, thank you for posting that. I think I will make it into a poster and hang it on the wall to remind me. Or at least use it as a screen saver on my tablet. They will definitely be helpful for me. I spend way too much time “what iffing” over a lot of things that will probably not happen.

Denise1847

https://alzconnected.org/discussion/comment/197331#Comment_197331

I am so glad it helped. I still fall into thinking about what could have been. When I feel that happening, I try to switch back to the blessings I have had and still have.

ButterflyWings

I still notice and grieve in moments when I miss what was, and lament what will never be. But I divert and distract myself just as we do our PWD LOs when I realize it, so I don't go there often or for too long. Just can't.

Also, my "new" DH is very good at living in the moment. That is dementia, right? He has anosognosia so it is truly living in the moment on steroids. There is zero memory, and no worry about the future. For him, Now, is all there is.

I need to be more like my LO in that regard at least. I'm trying. I have always been a planner and a worrier (always looking back AND forward at the same time) while also loving life whenever I can just go with the flow. But it is hard to just take each moment as it comes when you are thinking and doing for two. Especially with the wild roller-coaster that is dementia caregiving, and so much to troubleshoot, prevent, or fix.

Well.... like everyone here, I'm just doing the best I can from one day to the next. The attitude of gratitude you are recommending really is a big help and worthy goal every day. Sending out virtual hugs to all you caregiver heroes and sheroes here.

Ed1937

If you look back on older posts, you will find those by Lady Texan frequently mentioned gratitude for what she had. It seemed to work for her.

ImMaggieMae

The idea of freedom mentioned in several posts makes me think of that old song, Me and Bobby McGee”. “”Freedom’s just another word for nothing left to lose.”

LaneyG

Thanks for the words of wisdom Denise. I too miss my freedom. I can’t do anything anymore. My mantra has been one day at a time. That seems to get me through. I do try to find and embrace whatever joy does surface day to day. But I do fantasize of days when I have my freedom back. Sometimes I think I need that bit of hope for myself. But then I feel sad and guilty because of the horrible downsides that would have to come with it. Best for me too to stay in the present as much as I can aside from obvious planning that needs to happen.