He survived the week of transition for care providers and likes the Husky Senior Care service so far.
He seemed to be in good spirits Saturday morning and reported going out for social things including trying out dancing a bit. So if I think about what could have happened after his hospitalization on a scale of 1-10, I think he’s at an 8, with new mobility and cognitive challenges but not debilitating ones, partially because he has so much support from friends and a willingness to do his exercises.
He made me 70% confident that he has set up repeating appointments on his calendar to remind him to take his meds. I wish I was there to check so if someone is familiar with iPhones and can check his calendar for repeating evening appointments with notifications on please do!
2/8/2025
Medications now resolved. Don spoke with a Kaiser person and, although he didn’t ask for or they refused to clarify what he should take, I was able to update his medications list by piecing together evidence. It still sucks that something so important as creating a living list of what a patient should take is so hard for an HMO that’s built for this kind of thing.
This weekend (2/8, 2/9) will be his first two days without a caregiver so is an important test for safety and his ability to take his medications without professional reminding. He has checklists we maintain on Google Drive so I’m hoping he’s printed them out and using them. There’s some evidence that he has been forgetting his evening meds from time to time and I’m trying to impress upon him to trust the memory aides, not his memory.
The Horizon House social worker is not happy about the hours being cut back and instead is arguing that Don is a candidate for low-level assisted living, citing Don’s exhaustion in his conversation with Don. So I anticipate navigating this tension will be coming this month as Don goes from 24hr care to 8hr care to next week with five days at four hours each and the weeks after that at an anticipated three days at four hours each. My take is that it’s in Don’s interest to have in-home care in his current independent living situation because:
it’s familiar
it’s nicer than an assisted living apartment would be in the sense of space and natural light
moving is stressful (I know this is a form of procrastination but it’s still true)
it’s much cheaper; I calculate Don would exhaust his savings in five years or less with assisted living (one reassuring thing is Horizon House pays assisted living bills if you run out of money) but doing in-home care for a reasonable number of hours per week would keep him from exhausting his savings indefinitely from an actuarial perspective (i.e. he won’t live forever but we all hope our money will outlive us)
2/5/2025
Medications are still unresolved; Don’s going to try to get an appointment set up just to talk about that since Kaiser was unwilling or unable to go through their list and the discharge without a real-time discussion.
He seems to be continuing to be stronger
We’re switching to Husky Senior Care starting in about a week and a half. A SeaCare person told me Tuesday that they could do fewer than eight hours after all for people in Horizon House (this is what they told me originally). We still decided to switch because ethically it was the right thing to do once we’d tentatively agreed to the new contract but I’d be lying if I wasn’t upset about the wasted money and time that came from the misinformation.
The social worker at Horizon House has come over to check in from time to time, which was nice.
1/26/2025
There’s still some inexplicable unresponsiveness from Kaiser about aligning the medications in his record with his discharge array but in the short term things seem fine.
Physical therapy ended last week. Occupational therapy ends this week. Both say his challenge is to simply do his exercises; there’s nothing left to teach. Speech therapy has 10 sentences for him to say 5x/day; I’m curious if they’re tongue twisters.
Caregiving hours will be cut back to 7am-3pm starting Monday. This will be a big relief financially and, while still not sustainable in my opinion, it’s probably wise as a transition period. We’re looking into other in-home care services who are willing to do fewer than eight hours; Husky Senior Care looks the most promising and we’re working to set up an appt the first week of February to perhaps start the second or third week.
1/20/2025
Momentum still seems positive, with his nephew reporting “He moves at a good clip. Any balance issues were not obvious.”
Medications pretty stable, with 1/10 doctor appt not resulting in medication changes according to verbal reports but there’s a mismatch with Kaiser’s meds list that we’re looking into. Nancy has been on top of stocking pill boxes and giving me notifications for refills.
Don has a lot of exercises — 12 per day in fact — which is giving me some ideas on stuff I can do, too.
Next big decision is when and how much to cut back on caregiver hours since he has gained a lot of independence. The math current situation doesn’t work for long. If you go in to assisted living — they have a spectrum of help levels — it’s way cheaper than the situation he has now and the building will keep you on even if you run out of money. But if he cuts caregiver time to, say, two hours in the morning and a half hour in the evening, he could sustain things for a long time.
1/12/2025
I didn’t get many details but confirmed Don had his Friday doctor’s appointment and he reported that the doctor didn’t want any big changes
He got a haircut, apparently on the urging of his caregiver; looking good!
1/9/2025
Feels like there’s good momentum on my last day.
Don has a good attitude about doing what he needs to do. His physical therapy exercises are like brushing teeth; they require intentionality and patience and should happen at least and preferably three times per day but are not hard to do.
Today we’re going to print out a list of daily tasks that are subject to forgetting so that he can have confidence he’s done them, including three sets of exercises and the medications (two of them) that are in eye drop rather than pill form. He’ll know, for example, that he did his morning exercises already. (The caregivers also keep track of this but it’s more about helping him be as much in the driver’s seat of his care as possible.) We’ve also ordered a whiteboard to have his schedule be more visible and be a memory aid.
All of the visits and food drop offs are really invigorating for him. He feels really loved and I’m grateful he gets so much attention and connection, the fuel for his extroverted personality.
He had a video meeting with his palliative care doctor on Wednesday, which was mostly uneventful; as I understand it their role is kind of to help you cope and manage a persistent challenge and maybe are a more medical version of the social worker concept. But here, again, the fractures of the health care system were prominent; Don put in his agenda ahead of time a request to alter the prescription of a medication that right now can’t be refilled before he runs out and the doctor was apparently incapable of emailing another doctor to move the ball down the field.
This Friday is his in-person Northgate visit, which is a big deal in itself because it means going out. A friend will drive and I’m confident based on how good he’s getting with the walker that he’s got this. The agenda:
Inform on current care situation, what he’s doing
Blood pressure assessment: it’s coming in higher than expected so should he use the physical tools (compression socks, abdomen binder) as was originally recommended and/or change meds?
A partially blocked artery was a topic in the hospital; any treatment appropriate?
Cognitive health: bad dreams, disorientation especially in the morning, forgetting words. Can he move up his neurologist appointment and or get a cognitive test?
Medications: renew meds about to run out, general understanding of if anything should change since there’s so many (palliative care doctor said probably not since his condition is improving
1/7/2024
Am in town and was able to spend a good amount of time on Monday
It was a pleasure to see him get accept the effusive love from the dance and Unitarian spheres of his life via visits, cards, and posters he had on his walls
Similar to a few days ago, he seems to be in better shape out of the hospital, with Helen, an attentive caregiver, doing a good job of thinking proactively on things like safety and the importance of getting rest. They have a notes function in their system to pass on to other caregivers, which is a nice integration we haven’t seen until now.
Occupational therapist came with an engaged bedside manner and Don seemed keen to build up capabilities among the menu of options she offered, with perhaps one focus per week. She took a fresh look at the home situation, which resulted in moving a coffee table and ordering a modest handrail thing by the bed for safety.
Physical therapist comes today for a weekly visit and looks like we can book the in-house private pay one for at least a day next week. A goal is to be able to go to a dance in a couple of weeks with as much stamina and abilities as possible.
Key goal for today is to craft and agenda for his Friday doctor’s appointment to see if he can get help unlocking inadequate medical services on the insurance side.
1/4/2024
Things feel more stable these days, with Don getting regular visitors and having 24hr personal assistance care. He seems to have an easier time keeping track of what’s going on and finding the right words for things.
I will be visiting Monday-Thursday 1/6-1/9
Something I’ve learned from this process is how much the medical system is like a series of independent dynamos with a minimum of connective tissue that would see the patient as a whole person rather than an assembly of acute needs (or lack thereof per specific criteria). This is even with Kaiser Permanente, the grandfather of integrated health maintenance organizations, involved.
The main helpful thing has been the social worker function, which is a minor miracle, because they can navigate the bureaucracy in terms of getting doctors on the phone or getting you the specific jargon to use when asking for something.
An example of the system not working was the failure to order and deliver “durable medical equipment”. When he was going to be discharged, my understanding was that he was going to have both a walker and a wheelchair. He ended up with neither. When I spoke to a doctor a day or two later the order went in but the wheelchair was rejected two days after that due to Medicare criteria only qualifying such equipment for mobility inside the home. The walker wasn’t delivered until Friday and apparently seemed to require two calls from me to the vendor to get moving at all. Don’s not feeling like a wheelchair is necessary at this point and I could see how not having it might help him to build his strength faster anyway.
Another mismatch between the system and patient need is Medicare paying for physical therapy only 1x/week, which doesn’t make progress easy, and there is a ticking clock of the service being withdrawn if you don’t make progress or six sessions, whichever is earlier. We’re looking into seeing if an out-of-pocket physical therapy service an extra couple of times per week would make sense because it could have a big impact on mobility and recovery potential.
I think the idea is that a medical need quickly morphs into “wellness”. As long as you’re alive and technically able to move, the medical system thinks it is successful. If you’re worse off from going to the hospital or don’t improve, it doesn’t care; at least you’re alive.
12/31/2024 5:10pm
Happy new year!
Spoke with Don, friends, and caregiver on duty. Pam and others have organized the crazy number of medications, which will probably be the main challenge to keep straight in the coming days.
Physical therapy/occupational therapy may only be 1x/week. Thinking about options to supplement that and the hope is his sessions can be videoed so they can be recreated.
One nice thing: no real food restrictions, although fresh food is probably a good idea to help with recovery and alcohol other than a sip best avoided since balance is an issue.
Hoping to someone can bring a dog or two to his home for animal therapy
12/31/2024
Well, it was a bumpy landing, but Don is home!
He and the people who care about him got to experience our dysfunctional care system first hand, including:
his nine medications were confusingly explained and one-third missing; there was a scramble after hours to get the doctor on the phone to send the prescriptions and friends to pick them up at the hospital on 15th
equipment on his chart — walker, wheelchair — were missing; there was a scramble to get loaned ones from downstairs in his building and Kaiser will deliver tomorrow
he needed full-time in-home support services, not just some hours; there was a scramble to scale up to 24hrs from what I thought would be somewhere around four hours a day but the company came through in hours; it was something I thought could be an outcome but really felt like a dropped ball between the hospital and the insurer because they never suggested it was a likely need
But what did work were his friends helping out and I am grateful. If you want to get on the spreadsheet, I can send you contact info! Also, nobody’s sick as far as I know, there aren’t icy roads, and no earthquake so far.
12/30/2024 2:20pm
Discharge should be happening in the next hour. “Cabulance” availability was the bottleneck. Thanks to everyone for organizing and volunteering!
12/30/2024:
Discharge still looks likely today, pending Kaiser being satisfied that he’s positioned to have the help he needs at home.
Ellen has emailed around to organize people to visit and help out (thanks Ellen!). In advance of physical therapy with defined exercises my hope is he and friends will be up for getting walks in, even if it’s just going down the hall or downstairs to the bistro. The more he can get used to the walker and get experience balancing himself the better.
12/29/2024:
Going home on Monday looks like a real possibility! Based on how things are looking, it would be around 1pm using a “cabulance”. I’m hoping he can have friends help him get settled in (I’m still out of town) and have a private care provider be present to do an intake (see below). He will have a four-leg walker and wheel chair as part of his equipment.
Apparently the hospital determined him to be “medically stable” on Tuesday 12/24, which means they don’t think that they can make further progress medically in the hospital. That’s what turned out to have spurred the determination that he could be discharged with minimal physical therapy (we’re talking a half hour every other day or something) rather than full time residential physical therapy. His blood pressure challenges keep him from benefiting from full time physical therapy, according to Kaiser and/or Swedish staff.
Can this be overturned? See notes below. I’m going to investigate leads but I’m not hopeful and fear focusing energy on them will impair my ability to help set up a sustainable living arrangement. If it is successful, he might be out of home again within days, but it would be worth it.
Don had appealed that decision and the second round apparently has failed, per the Kaiser care coordinator on 12/28. I haven’t been part of this effort so am at a disadvantage because I don’t know how the arguments have been framed.
I received a suggestion to talk to the state insurance regulator to see if there is leverage.
I received a voicemail from someone who knows someone who got such a decision reversed. I’m told that person may call me today (Sunday).
Meanwhile, Don’s current practical needs are not easy for him and his friends to assess and the hospital staff haven’t been responsive so I suspect we just won’t know until he gets home and sees what works and what doesn’t and my hope is that visitors will keep eyes open and share what they’re noticing with me (it’s hard for Don to keep notes).
In the context of this imperfect knowledge, he and I decided based on the options of 1) assisted living (at least temporarily) in the same building at a guaranteed high cost (with the actual amount unknown because the accounting person at Don’s building was off for Christmas week) or 2) a per-time unit cost scalable to need that probably would close in on assisted living if we took full hours, for now we are going with a private home care service that already has a lot of clients in the building. It’s easy for them to do x number of hours per day or an hour in the morning and, say, 15min in the evening and the admin people seem on top of things.
The Kaiser care coordinator promised me that she would arrange to have a nurse call me today (Sunday) with a list of care needs that we can share with the private care provider in advance of discharge.
I was surprised to learn that she hadn’t heard of Horizon House, which was a good reminder that this kind of situation requires a lot of organizational discipline, patience, and validations of what you wish could be taken for granted.
There’s an obvious contradiction in that Kaiser has to get comfortable that there’s a plan sufficient for things like medication reminders but that seems to be based on medical ethics rather than the decision of the insurance function.
The manager of the private care service will call me today (Sunday) to have an intake discussion. I’m hoping to involve Don in that, to help him to share what he thinks he needs.
What remains is the question of physical therapy services. What Kaiser is planning to provide appears inadequate for enabling Don to return to a semi-independent lifestyle within the limitations of the blood pressure challenges, e.g. making it possible to go to social events and get in and out of cars, so I’m also hoping to get referrals to complement what Kaiser arranges or see if we can pay for additional hours with the same service.
12/27/2024:
Spoke with Don a bit on Wednesday and today. He reports doing plenty of physical therapy and gratitude that he hasn’t lost his phone or glasses yet!
He, his friends and the nurses report extended periods (perhaps up to a half hour) of hallucinations while waking up (called hypnopompia), which may be due to the stresses of his body in the past couple of weeks and from being in the hospital. This may be an exacerbated Parkinsonism symptom.
If you want to send him well wishes, he says both email and text work well right now
Based on my conversation with the Kaiser Permanente social worker but not the Swedish hospitalist (message left 12/27 in the morning) there’s currently not a discharge plan because there isn’t a resolution to the blood pressure situation (see 12/24 comment).
Kaiser, acting as an agent of Medicare, has apparently formally said (I have a voicemail into the Kaiser care manager as of morning of 12/27) that because there hasn’t been progress on the blood pressure issue, enhanced care at home would be the best plan; I’m hearing second hand that the implication is that this would mean less than daily care visits, that would leave a gap relative to need.
Don has appealed to say physical therapy is the best solution, as it would give him daily help to get in the short term and position him to live as independently as possible afterwards.
12/25/2024:
Merry Christmas!
Donna and Ronni visited yesterday and reported Don being able to stand up and walk using a walker during physical therapy. Doctor mentioned that the condition may be Parkinsonism, which is a wider umbrella term for Parkinson’s-like symptoms regardless of the cause.
12/24/2024:
Thanks to everyone who has visited Don and checked in about his status.
How I plan to share information: People who care about him are texting and sharing observations already and have been asking me for updates so I set up this page to keep my notes in one place. I’ve also turned on my home phone 510-444-5453 so feel free to call or text to request updates, just know it might take me a few hours to get back to you. Also, my experience with the health care system is modest so I suspect there will be a lot of learning as I go.
How to contact him: A very social man, he’s been getting a lot of visitors (he’s at Swedish-Cherry Hill, 5th Fl) and apparently has a signature board. Until further notice I think its safe to say he’d enjoy seeing friends visiting but as with anybody in the hospital please be patient and know that fatigue can be an issue. He can also talk on the phone and FaceTime but may only be able to talk for 5min depending on how much energy he has. He can receive texts and emails but may not be in a position to respond.
His condition:
On or perhaps the day before 12/13, Don went to the hospital due to dizziness
He’s been stuck there since, reporting that the doctors are trying to make fine adjustments to his medication. He reports fatigue and bad dreams but he’s also been good about calling friends and getting visitors to buoy his spirits.
On 12/23 I spoke with the on duty social worker at Kaiser and the hospitalist at Swedish.
They come across as engaged, organized, and pragmatic. So far, so good
They don’t think he’ll move until Thursday the 26th at the earliest, with the where an open question because they’re trying to medically stabilize him first. The best case scenario is probably a week at a rehabilitation place, then back to his apartment with temporary assistance. More difficult scenarios involve needing significant assistance and/or a wheelchair because there’s no level of blood pressure that allows both sitting down and standing up (see next)
The three challenges the medical team are working on are 1) Parkinson’s, 2) recent sinus infection that may not have gone away, 3) clogged artery. All seem to be balancing more difficult, and these factors probably are creating other complications. The doctor is “titrating” (i.e. making fine-tuned adjustments) to the medication to get the right amount of blood pressure that allows him to be comfortable, standing up, sitting, and lying down. There’s some progress — sitting seems to be working now — and he’s getting daily physical therapy to keep his muscle tone but the effects of changes in medications take days rather than hours.
Next steps: I’m planning to check in with him via FaceTime every day or so and check in with the medical staff on Thursday or Friday. I’m going to be in town 1/6-1/9 but may change that depending on how things go.
