A life sentence

Please see a certified elder lawyer CELA www.nelf.org if you haven't already, to protect any assets properly, for your own sake. I am in the same boat. But we have no hard earned anything that hasn't already been sacrificed to dementia. I keep trying to work part time, remote, etc. just to keep our heads above water.

The other immediate next step, I'd say, is meds. For him first, lol. If he won't take them, it is reasonable to crush and stir them into juice, water, pudding, applesauce, soup, etc. For us, Seroquel, Sertraline, and occasionally 10 mg of Melatonin helped until UTI antibiotics could be prescribed and started working. Those were the periods with the most combative, aggressive behaviors but on a "normal" day in mid-stages it was the wandering, squandering, weaponing up, and trying to drive etc that sent me looking for medication intervention.

Give him whatever it takes to calm the raging and stop the insanity for you both. He can't be feeling too good without this intervention either honestly - we learn here that with PWDs behavior is communication, so please see what can be done immediately to tone down his behaviors.

I agree your assessment of the diagnosis is right. It is both a life-and-death sentence, for us and our LOs. Not pretty. And very hard to swallow.

Just had to chime in here because I feel you re: neurologist's comment. We had to change neurologists because we moved and the new one commented to me (at our first appointment), "I see you are concerned about DH, but you'd never want him to go to a nursing home. Those places are terrible. My mother was just diagnosed and our whole family has made up our minds she's never going." It made me feel so judged, even though I didn't tell him anything about what I might do in the future. They get a 15 minute (or more if we're lucky) snapshot, while we live the reality 24/7/365. And so wrong...it is a fatal illness, just harder to predict than many other such illnesses and with pain that can't be located but which can threaten the hearts and souls of both caregiver and patient.

I think we all feel the same way- as if we’ve collectively fallen through the cracks of some system that works for others. Our loved ones ended up with an illness that damages not only them but spouses, families, bank accounts and futures. In addition to our grief at losing our LO- we somehow have to climb mountains to find doctors who understand and can help- and deal with friends and family who don’t get our reality. This all sounds so discouraging-but there are days and flashes of humor, moments of joy amidst the sadness and for that I’m grateful. It’s scary to know the road gets steeper before it ends and we have no idea how long our journey will be, but I’m so grateful for all of you here who let us see you out in front with loved ones in stages 6-7-8 - even though there are such hard and sad things to deal with you give us all hope that we too can continue and complete the journey…

I truly appreciate your feelings about your home. I had to make the choice of either selling our home or keeping my husband (Stage 6.75) in our home to save it. The local cost for Dementia care starts at $12,000. a month. Not possible on a retired military income, so it was the house or taking care of him myself with the help of Hospice. This Hospice company emphasizes the use of medication to make life livable for YOU. My husband's behavior issue has been agitation at night. It involves waving his arms, endless talking and trying to get up every five minutes. I was losing my mind until my husband's retired military male nurse took charge with medication, lessoning the nighttime problem by 95%. He is on Seroquel, Haldol and Trazadone. He now remains at peace most of the night. The other upside is that the next morning he sleeps like a rock until about noon, giving me the opportunity to do housework, book work, relax, etc. He wakes up refreshed and at least temporarily a bit "saner". I recently posted a very scary episode with my DH, and the people here helped me tremendously. We are all in this boat together, and the great news is that we have a collective strength to help each other through this chapter of our lives. Blessings to you.