Micropreemie help out the wazoo - Dementia help crickets

Sorry to inundate with my ridiculous questions. But I need to get this off my chest.
I am the 68-year-old wife of a sweet, loving, devoted (I got lucky!) 79-year-old. Last fall, after taking a weekend trip away leaving my smart, capable, healthy husband at home I received a few texts from neighbors telling me he was struggling with starting the car, stopping the car, and losing the car after driving it a mile from home. I immediately cut my trip short, called him every hour to keep contact, and enlisted our dear neighbors to keep an eye out (which they did - again, I got really lucky.)

After medical tests and appts, he was diagnosed with moderate cognitive decline, possibly Alzheimer's, probably Parkinson's. (Take note of the language the doctor used in his report. Not at all clear to me.) We started on medication that created physical problems and had to stop immediately. One day, my incredibly fastidious husband came out of the bathroom with hands covered in feces upset that he couldn't figure out what to do. I was beyond shocked and appalled, mostly at myself for becoming nose-blind to what had been happening to him right before my eyes. Fast forward a few months, and I am now wiping his ass a couple of times a day.

Here's the point of my post. Almost 17 years ago my 25-year-old daughter died of previously unknown pulmonary hypertension, while she was 26 weeks along with her first baby. Her husband was/still is an active-duty Navy Chief Petty Officer. After she died, and the baby survived 5 months in the NICU, my lovely son-in-law asked us to help him. We immediately said yes and K has been with us since they were released from NICU. Navy Dad has until this past fall used our house as his base and is an incredibly loving dad.

After K was released we were sent help. Occupational, physical, and speech therapists. PET (Parent Education Teachers). Appts with heart, lung, developmental, kidney, and a pediatrician. Medication, apparatuses, supplies, bedding, clothing, even laundry services, and meals, came our way. This baby was held in the capable hearts and hands of the medical community, to assure the best start to life.

Today, my frustration continues to be why isn't this same support offered to those at the end of their lives? We've had to make multiple phone calls each time just to get the appropriate tests, medications, appts. We are struggling with what it means for a physically healthy adult man, who eats a regular full diet, to wear diapers, can't shower, doesn't use his phone or computer anymore, and can't operate a remote control.

I realized that my grandchild's Micropreemie-type experience is a complete 180 from my husband's dementia experience. This week we met his speech therapist to assess swallowing issues he may be having. As she was doing intake and asking lots of detailed questions, I noted she was making additional notes (typing, then writing). At the end of our hour-long intake, looking at the written notes, she listed appropriate therapies and doctor recommendations for us. She also noted my husband's gait and hand movements and strongly suggested we make an appointment with an ataxia specialist. I arrived home for the first time armed with names, phone numbers, and a promise that she would arrange all therapies since they were all in the same building. I also realized I was breathing calmly for the first time since getting this diagnosis.

I also recognize (if you got this far) that the benefit of this forum is that it is anonymous.

/rant over