Day of Decisions

Mom has already figured out what's up.

She's saying, "My room is all closed up and locked. Don't let them sell it. I just want to get back to my room."

So I don't know if I can stick to my resolve, agreed upon with Emily and Jim this morning, to move her from Ocean View Assisted Living to a skilled nursing facility (SNF) after the hospitalization that began today.

But anyway, here's a summary of the day.

Dr. Sonja Rosen's news this morning:
1) Mom's kidneys are back in the normal range. 1.3 (not 1.5 as they were Monday)
2) But "she has a really big bladder infection."
Bacteria = Providentia Stuartii
3) Her options
a. Intramuscular shots, one per day, 7 days (painful)
b. IV with antibiotic specific to this bacteria 20 min. per day, 7 days
(no medication by mouth is available for this bacteria)
Note: Her assisted living is not licensed for IVs, will not allow them. So IV has to be done in hospital.
Emily spent the day taking her to ER to get her admitted to hospital. Mom got to her room about 5 pm.

On Monday we discussed another option at this point: hospice.
She's tired, "has humored us" as Emily puts it by putting up with the "Reminiscence Neighborhood" and with meds/blood draws/catheters/x-rays.
But she often says, "I want to die, to go to heaven," and lately has more often been refusing meals and meds.
Her refusal could be just her serious bladder infection which has been continuing at least since April 5, perhaps longer.
Or it could be that she is really ready to leave.

Dr. Rosen says she has enough criteria to qualify for hospice.
1) Weight loss (she was 106 with heavy shoes on Monday).
2) Behavioral changes (or is this just the bladder infection?)
3) Progression of her disease, Lewy Body Dementia.
She says you place a patient on hospice to focus on comfort, not cure, and that you generally expect death within six months. But if she lives longer, you can extend it.

Dr. Rosen is available for a family phone consultation if we want to schedule one.

At any rate, a private room is available at Country Villa, a skilled nursing facility (SNF) Emily and I have visited. It's $233 per day including medical services. (Her current residence is $207 per day but fewer medical services.) A shared room (2 beds) in the SNF is $192 per day.

In addition to her current $207 per day, we are paying $112 per day for a private caregiver for 8 hrs. I would discontinue this at Country Villa after maybe a month or two of transition time. Even if she stayed in her current residence, we probably would give up private caregivers within 6 mo. or so to conserve her funds. She has about $100,000 at this point, enough to last one year at her current level of care/expense.

I think the reality is that she is declining and needing more nursing care than her current residence can provide (catheters, blood draws, chest x-rays, physical therapy, etc.). It does a great job of providing comfortable, cheery surroundings; good food; kind people.

But she is getting less interested in the food, confuses the people, seems unaware of the surroundings (until they are withdrawn--now she just wants her room back).

Her assisted living residence would like to keep her while she is in hospice if/when we would choose hospice. Four other people on her floor are on hospice, have been for several months.

Today after consulting with Emily and Jim, I told Country Villa that we definitely want that single room, and I gave Ocean View Assisted Living the required 30-days notice that she is leaving. They said, "You can change your mind during that 30 days." We could change our mind if we decide that her staying in her familiar surroundings is the highest priority. I reached Bill tonight by phone and he understood the reasons we are inclined to choose Country Villa (but also values her comfort level where she is).

Mom was given an ultrasound of the kidneys at 10:30 pm tonight and then at 11 pm was given another catheterization so that a more detailed urinalysis could be done. I hope she didn't get a catheterization this afternoon in the ER. She had one on Wednesday, 4/18, (yesterday) and on April 5.

The route of hospital/SNF means bothering her a lot for medical tests and treatment.
The route of assisted-living/hospice is less invasive, more comfort-oriented.
Hospice could also be done at the SNF if medical intervention becomes more trouble to her than it's worth.
The SNF should be less work for me after she gets settled... doctor will visit her there, tests will be done there.
But moving is a bit of work, and if she's not happy there, she could become more time-consuming there.

She is very dependent on having a person with her, especially a familiar face. She's very fearful, filled with hallucinations and delusions when alone. Tonight I cancelled having her turned over by two men every 1 1/2 hours because her fear factor of two men in the middle of the night is so high. She was telling me about the "two bad men" when I arrived at 9:30 pm.

Sorry for the plain, confused style of this blog entry--it's copied from an email without any effort to make it interesting or readable. Too tired for that today!