Holidays and dementia

I usually wait to write a blog post when I am doing well. But I also want to write when I am not doing so well. Which is hard, because I don't want to come off as poor me or a victim... but rather a caregiver struggling with emotions that run the full gamut on any given day. So here goes...

Monday was Independence Day. It was also my 4th day off in a row. As usual, Friday was my errand day. All those things I need to do while my husband is at his Day Care. I met with my counselor and friend Kathy, visited with Miranda and grandson Will, grocery shopped, to the bank, filled up the van, tires checked, and then picked up Randy. While some of those things used be done with Randy, not any more, as he will get out of the van and just walk away.

So we get home... and reality sets in. We are house-bound for the next three days. (Randy's day care is closed for the 4th) I do Sat, and Sundays pretty well, but Monday has the potential to push me over the edge. So I began the positive self-talk, the planning, the pleading with God for strength and motivation to stay busy and hopeful. But I made the mistake of checking Facebook and I became stricken with new layers of loss. I want my life back. I want the social life we once had. And I am griped with the fear of spiraling with three long, lonely days ahead of me.

So God gets an ear-full. I plead, I beg, I cry. Peace cannot come soon enough.

Saturday's goal was pretty simple. Gather the last of the documents needed to take to my tax preparer. It's been a very long and arduous task, but I was finally seeing some light. I have literally gone through every single piece of paper and file in our home and garage in the past couple months. But as always, it's one step forward and two steps back. Will I ever get ahead of the all-consuming paper chase?

I need an escape. A diversion. I am losing my grip. So I will myself to reorganize my sewing room. That will surely energize me. And it works. Gosh I love this room. But it's been sorely neglected these past 5 years, since the onset of Randy's frontotemporal dementia diagnose. 

Ok, I am on a roll! So I started on the playroom/ guest room... that's filled with my son Tyler's stuff that he's yet to take back to Wisconsin. All the while Randy is in and out of his room ~ either reading, or watching Christian television, or back in his room to read again. He's continually telling me "when Tim & Betty come over they take me to Quick Trip." Or he will ask me dozens of times if he can have more cookies. He's so sweet about it, never gets upset or sad when I remind him he just had some. Meanwhile, I am being all silly and sing-songy in however I respond or in whatever I'm doing. Everything becomes a song lyric or a rhyme when he's around. And often times I even tickle myself. He is completely entertained by me. He thinks I'm the funniest. We laugh and joke and reminisce. I am so thankful my sense of humor is still in tact... and his mere presence eggs me on. He's just the best audience.

Then I discovered Person of Interest on Netflix. Omg. So good. I proceed to binge-watch. But after a few episodes, I decided I best multitask while watching, to feel more productive and less guilty. So I brought in boxes and bins and trash bags (oh my) from the garage and went through every single item piece by piece. At one point I'm thinking "this is like going to the best estate sale and digging through treasures galore, but I'm not having to pay for a thing!" ha! Yes, I found things I forgot I even had. I did a lot of purging and repurposing. Went through 6 huge bins of costume/ vintage clothing. You know, from the past 4 decades in case someone hosts a costume party and you need the perfect retro outfit. Yup, I got your number.

All to say, I survived another holiday. Heck, I not only survived, I thrived. You see, I don't want to get by, cope or manage... I want to be present, enter in and trust! And every day that I surrender my plans for His is a good day. Every day I let go and let Him take control is a peaceful day. My circumstance haven't change a bit, but He's changing me, my outlook, my perspective. It's choosing every day to believe by faith that He is enough. That He is all I need. I seriously could not, I repeat, could not walk this unexpected journey without the Lord. Not one single day. 

Yup, forever and ever grateful.