pity party day, week, month...

PlentyQuiet

DH was diagnosed with EOAD (age 61) November 2021 after a lumbar puncture. He was MCI at the time. Currently he his solid stage 5 with stage six leanings.

He does not shadow, he is velcro. Can't follow simple commands or remember anything for longer than a couple of minutes. Still continent, but the hygiene is out the window.

I live with door alarms and locks, I have no privacy or sense of an independent self. He has to be under direct supervision 24/7. He gets up 4-9 times per night and wanders to the bathroom and back, but thankfully nothing worse than that.

I have some respite care, but it never seems like enough. He loved daycare, but at $900/month for 2 six hour days a week it was unsustainable.

He is on Lexapro, seroquel, gabapentin and a delta 8 gummy. How is he still upright with all of that on board, much less constantly pacing? He is prone to agitation and anger (mostly directed at our 20 yo). After a chat with his provider yesterday we are upping the nighttime seroquel.

I know the middle stages are the hardest, but I am so tired. Tired, short tempered, and definitely not a caregiver I would hire.

I'm on Lexapro as well (a larger dose😊) and have support groups and friends who get it. But how do I make that final mental switch to being able to let it all go? I feel like a good cathartic cry would help, but I can't seem to just release it all.

They have rage room where you get to smash things, but I think I really need a cry room. Someplace where we can gather and have someone lead us through releasing all the emotion and pressure.

M1

This is sooo exhausting. Have you thought about checking with your local Council on Aging to see if there are possibly any local grants/programs you might be eligible for, that could possibly give you more relief? Have you got him qualified for Medicaid, too?

SDianeL

We understand how you feel. I didn't cry until I had to place my DH in memory care 6 months ago due to my cancer diagnosis. I now cry every time after I visit him. Have you talked to a Psychologist or Psychiatrist? You are grieving for what once was and are angry at the terrible disease. You're not angry at him. Try to find more respite care. You really need it. Hugs.

Laurie1282

My HWA is also solid stage 5, leaning to 6. No matter how sad and gut-wrenching this disease gets, I can't cry either. I have always been emotional and easy to tear up, but now those tears just don't want to emerge.

Denise1847

Dear PlentyQuiet,

I am so sorry. You are not alone. My current image of myself is curled up in the fetal position in a pitch-black forest. My goal is to just get through the day and look for things to be grateful for. This is truly a struggle for survival, both mentally and physically. Please talk to someone as it does help to vent. Stay in touch and sending to a virtual hug.

howhale

While it may be very difficult to find outlets to help with your feelings, I found this forum to be very helpful. My wife demonstrates many of the same behaviors you describe. She too is like velcro and there is nothing I have found that she enjoys doing for herself any longer so all time for myself has just disappeared. Have a care giver who comes three days each week for 4 hours each visit. Helps but is expensive. At least allows me to get to the grocery or doctor appointments for myself. Tried longer visits but even the care giver said it was too much for her. After about 2 1/2 to 3 hours she is unable to keep her engaged and the agitation and anger is more prevalent. Unfortunately I have been unable to find a way to disguise her meds. Tried every suggestion so far but because she watches me so closely, any different behavior on my part triggers suspicions from her and she just refuses to eat whatever I have used. Still praying I find some way to get meds in her. I have worked very hard at times in the past by choice and become exhausted but it pales in comparison to the tiredness of this nightmare. I shared this forum with family who truly care and offer suggestions based upon what they have read somewhere. My brother today shared that he finally registered on the forum to see what I was talking about and was shocked to get a true inside picture of this disease. He told me that it paled in comparison to what he thought was going on and found it very enlightening. Finding people here who really do understand the reality has provided a "source" of companionship that is missing. Someone who understands and in not judgemental.

Crkddy

https://alzconnected.org/discussion/comment/217161#Comment_217161

howhale, does your wife eat ice cream? I had very similar issues with my DW last year and finally landed on something that worked for us. I buried her meds in spoonfuls of her favorite ice cream (mint chocolate chip.) Didn't even crush them - as she would just chew and shallow. If your wife has big pills, you may have to crush first. Hope you find something that works for you.