For those of you who love and care for Bob and keep reaching out for news, I’ve decided to post it here. Please understand I have little emotional and physical bandwidth left right now to communicate with everyone, as dear as each of you is.

Bob’s stroke, April 20, 2023, left him with expressive (speech) and receptive (ability to understand and process information) aphasia. At first, he was unable to say more than 5-6 words.

History

Aphasia
Bob could write and copy letters as instructed, but could not read, spell, or write words out unless he just copied them. Occasionally he would trace a large P or M on his arm and that would mean Pat or Matt. He was never good at charades and struggled to communicate with his hands or other creative ways. But he did try and we all got good at guessing games and, with persistence, we could some of the time figure out what he was trying to say. He would nod or shake his head. Yes, no, and fuck were his defaults. LOL

I tried to care for him at home the first month or so but he was not submissive to instruction and was in some ways a danger to himself. He either didn’t understand or could not fully process his own necessary care. He’d go outside and walk away, try to get out of a moving car, didn’t know how to work the microwave, stove, oven, washer or dryer. He had trouble in the shower; he broke glasses and walked in his bare feet and bled. He refused to take his meds. It was soon clear he could not be left alone. Still at a high risk of another stroke, needing vitals checked and 15 different meds administered, he was high-maintenance. Having to work full time including travel for days at a time, I could not properly care for him or afford round-the-clock outside help.

Willow Springs
Thankfully I was able to get him on Medi-Cal and reduce my cost of care.  For a year and a half Bob tried to recover from his stroke at the Willow Springs skilled nursing facility down the street from us. Built in the 1980’s it included a lovely, private recovery center where women who’d had facelifts (LOL) could recover so it had larger rooms, with in-room bath and shower, a desk, chairs, and large window overlooking a landscaped courtyard. Bob has always had a private room, thank God!

I visited at first daily, then eventually a few times a week, and the boys took turns visiting every few months as they could.

Improvement
He eventually added a few words and short phrases—which encouraged us all—and had speech therapy with several different therapists. He could memorize short instructions and learn limited use of his phone and could receive phone calls and facetime. He also could also use basic functions on his iPad to watch his favorite news programs. He loved opening up Google “Maps” and showing us a location so we could know who he was talking about. Matt in New Zealand, Pat in Florida, Rory in Montana, Tom Heaton in Woodland.

We tried speech machines and other helps. Nothing worked. We had him assessed again after a year but all experts agreed his brain had suffered too much damage; he had reached his limit and further recovery would be minimal at best. Family tried to encourage him to work harder, but Bob was exhausted and overwhelmed.

Eyesight
Bob had already been completely blind in one eye (glaucoma) and had been fighting vision loss in the other for years with 3x daily eye drops. However, even before and then after the stroke, his remaining eyesight began to diminish as well which caused him terrible frustration and anxiety. He had stopped driving a few months prior to the stroke and had sold his beloved Landcruiser.

As the months wore on, he could no longer see well enough to even watch his iPad. It also became apparent to him that he would never recover to the degree he and others hoped.

Depression
Depression set in.  Back when the stroke first hit, Bob was horrified at living without the ability to read, write, or speak. He’d earnestly asked us all to help him go quickly. We could not. Even when the boys were young, he’d tell them that if he ended up in this kind of state, to throw him off the side of a fishing boat in Mexico. He made it clear he did not want to live like this. With time and some small improvements early on, he’d become more hopeful. But now—18 months later and now totally blind—he communicated he wanted to die again.

I know he felt powerless and hopeless. In an attempt to control something in his life, he would manage his eyedrops, refuse to let others put them in for him, and would monitor his medicine. He did get out of his room, walk around the facility, sit in the public places to see and be with others, and he loved going out onto the patio to sit in the sun.  Everyone called him “Mr. Bob.”   To help with the depression, he was prescribed sedatives

All this time, I made sure he was well-stocked with his favorite chocolates, jelly beans, and brownie crisps. Weekly I bought him a Haagen Dazs coffee milkshake, which he loved, and would bring him over to the house for Sunday dinners (his favorite sausage from Jensen’s.)

But as his eye-sight worsened, more fear and anxiety set in and he began to lose his appetite. He no longer wanted the shakes or candy. While he was often seen by other residents and staff walking around and sitting in open areas to visit and mingle, he started staying in his room. He communicated to me that he could not even see a few feet down the hall so walking around was overwhelming for him. He was extremely distressed about going blind.

His walking was more hesitant, his movements slower, and over the months he was steadily losing weight and vigor. Failure to thrive. He finally allowed staff to administer anti-depressants, but they did not work well.

Please know that he communicated to me many times how much he treasures all his old friends and was deeply saddened he could not sit and chew the fat with each of you as he used to.

Where he is now

A Decision Made
The week before Thanksgiving he told me (1) to cancel his teeth cleaning appointment. I was surprised since he has always been fastidious about his grooming. (2) to cancel his haircut appointment. Again, I was surprised.

Then he (communicated to me) he did not want to come over for Sunday dinner or Thanksgiving dinner. I knew he was depressed but getting out and food were the last few things he enjoyed and now he was rejecting them. Something was changing.

Then he showed me his little calendar where he made an “X” daily to let him know what day it was. He pointed and tapped repeatedly to Monday Nov. 18. After some q & a, he communicated that he had stopped eating that day. I checked with the nurses and sure enough he had been refusing meals for the last few days.

What’s going on, honey, I asked. Are you really ready to go? He nodded somberly.

He was not agitated and I could see some new resolve/peace in him. Then he made the sign of the cross a few times.
You want a priest? Yes, he nodded.

The Long, Slow Exit
Apparently, Bob finally went so blind that he could barely see who I was until he heard my voice. That seems to be the change that prompted his decision.

After Thanksgiving, he privately made his last confession to Father Steve, who invited me back into  Bob’s room where he then administered the full last rites. Father prayed over him, sprinkled him with holy water, anointed Bob’s forehead and hands with holy oil, and gave him Holy Communion. Then he gave him a special blessing called the Apostolic Pardon.

Since then Bob has not eaten and only takes a few sips of water with his meds. Bob was assessed, diagnosed, and put on hospice and has been given regular doses of medication to keep him as comfortable as possible.

The boys came to say their goodbyes before he declined to the point of not being able to see or respond. He has lost so much weight he looks like a living skeleton. As I write this (January 10/2025) it has been two months without food.

Bob is now too shriveled up and weak to stand or get out of bed. He can’t hear very well, has trouble understanding unless you speak slowly or repeat it, and he cannot see.

In addition to Willow Springs staff, the outside hospice nurses visit him daily. He is given a shampoo and bed bath, change of clothes and clean sheets a few times a week.

I have been going daily to ensure he is calm, clean, and comfortable. I never thought he’d last this long; It has been excruciating to watch him die long and slow like this. Please pray for him. I will update this when there is a change.

Funeral
He wants cremation. The mortuary is ready and a Catholic funeral Mass will be said at Sacred Heart Church in Palm Desert probably a few weeks after he passes. I will post that information here when ready.

Photos
Go HERE to a google folder where I am uploading photos of Bob you may enjoy.  If you have any you want to add, please email them to me [email protected]  Thanks.