Sad progression

Jeff H

Life is rough but I'm getting by. I'm lucky to have my daughter at home to help. From where my DW was 6 months ago to now is striking. I have to help her get her clothes lined up to wear. I need to remind her to shower. I am administering her medications. Today while I was out only 30 minutes at Home Depot my daughter texted me that my DW was going to take 10 Trazodone pills! My daughter intervened. So, I have now hid all of her meds and my blood pressure medication. I have hidden all of the car keys and fobs. Luckily she hasn't expressed any interest in driving. My DW is almost normal in the morning up until around 1pm. Then the sundowning starts to kick in. Luckily her neurologist prescribed Rexulti for that. It's been working great. The side effect is sedation. So, at night, like now, I get a break because my DW will sleep until the morning. We then rinse and repeat the next day. My daughter and I had to remove all of the food from our refrigerator and pantry and we put it in the downstairs kitchen and refrigerator. My DW was feeding our dogs our food constantly throughout the day. Anything and everything, even bad stuff for dogs like garlic and chocolate. So, I prepare the meals now and watch that she doesn't feed the dogs her food. My DW used to be good about doing laundry. I did it too but I'm now doing it all. I don't mind that actually. I like doing laundry. I have an Apple tracker in her purse because she already forgot her purse outside in the backyard. This disease is so terrible. It robs the person and caregiver a normal life. My evenings are good so far. I get some peace. Such a strange and awful disease.

tonyac2

I was just thinking today of all the things this disease has robbed from us. It’s hard to put it all into words, overwhelming. Glad you have your daughter to help you. This must be tough on her too. Take care of each other.

SDianeL

Yes it’s an awful disease. The progression is like a gut punch as new behaviors emerge. You’re doing a great job. Glad your daughter is helping. 💜

Timmyd

https://alzconnected.org/discussion/75338/sad-progression

What you describe sounds very familiar to our experiences a couple of years ago. It sounds like you are on top of things and hopefully progression is slow enough that you can keep up with your adjustments. Here are some things go consider.

See if you can begin to remove valuables from her purse. Things like IDs and credit cards. DW is still allowed to carry / use a purse, but it contains nothing of significance. Removing items of value was a gradual process.

You will eventually have to supervise her taking daily medication. I was able to make this gradual. Like with most things, try not to point out mistakes, and give supportive, positive encouragement.

Make a practice of walking every room of your home regularly and looking for anything new out of the ordinary. DW went through a phase where she would leave the water running after washing her hands.

Consider brushing your teeth together. DW would say she was brushing her teeth and from a distance it looked like it was happening, but our dentist told us she was not doing it very well. Now that we brush together, I am able to watch and give her gentle encouragement to brush all her teeth and not give up before the job is finished. Oral hygiene as really improved since I began monitoring her brushing.

With hiding food and such, we had that problem but then we didn't. Eventually she became disinterested in what was in the fridge / pantry. Good news is that you may be able to return to a more normal food storage situation as disease progresses.

Chance Rider

Thank you for sharing how much Rexulti is helping your DWs behaviors. My husband’s behavior doesn’t warrant it yet, but keeping it in mind for the future.

My husband went through a stage of eating large amounts of sweets, rolls, turnovers, donuts and muffins. He’d go through 3 packages of Costco muffins along with donuts each week. Just lately he’s off the sweets. What he will eat changes almost weekly. No longer likes previous favorites, baby back ribs, burritos, etc. The only thing constant is change. We all keep plugging along.

mom2boyz

https://alzconnected.org/discussion/75338/sad-progression

Horrible disease. I watched my father go through this (he passed in 2013) and now my DH (57) was diagnosed in 2023. He had been having symptoms since 2020.

DH is no longer working and is now on disability. I'm going to keep the rexulti in mind to discuss at his next appointment because we are starting to have times when he is easily agitated.

We've been married 30 years and our kids are all grown and gone.