Parents caring for the parent support thread (Part 2)

Thinking of you @compmom. You’ve gone above and beyond what most could do for their parent. I’m sure her extra years are directly attributable to your loving care and persistent follow-up at her facility.

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@compmom, I have also been thinking of you with sympathy and empathy. I remember your first posts here about your mother’s gin consumption at the Assisted Living facility’s pub. OMG! Please let us know how you (and she) are doing. xoxoxoxo

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I think my father will need to leave his assisted living and go to a skilled nursing facility. For those with parents in these types of places I have a few questions. In a nursing facility are there doctors available 24/7, do they have PT and OT on site, are the nurses able to do stuff like facilitate a BIPAP machine, change a catheter, etc. If the person has a fever can they diagnose and prescribe antibiotics on site. Can they give them higher levels of Oxygen (instead of just the portable o2 tanks)?

I feel like so many of my father’s hospital trips would not happen in a nursing home. The nurses at the assisted living keep telling me the things they can’t do as they are not a skilled nursing facility. He is bedbound, and they have accommodated that (with a HOYA lift, etc.), but for everything else it is considered home health care (this includes PT and OT).

Any information from people who have moved from AL to Nursing home would be appreciated. thanks

The nursing home my grandmother was in had an MD on call but that didn’t necessarily prevent an ER trip unless the patient was on hospice care.

Each patient had standing orders for things like O2, pain meds, OTC stuff etc… but anything outside the scope of the standing orders needed an MD.

FWIW I fought with my mom’s memory care to stop sending her to the ER. She was a DNR but didn’t quite qualify for hospice but they were good about calling me first before the squad. There was only one time that they fought back and I had to agree to 24/7 private duty care until she was back to baseline.

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Have moved parent with dementia from AL to SNF at 88. While ALs can vary significantly in what medical support is available and built in to their model, SNFs are more uniformly certified and are very comprehensive. Memory care units may be designated at the AL or SNF level of care. I exhaled when I moved him and the charge nurse stated that no matter what he would be facing medically going forward, they were equipped to tend it and they did until he died 4 years later. No more waiting for the other shoe to drop. It was a quality place, staffed to provide activities, as well as medical and 1:1 ADL assistance as needed. He had a Dr affiliated with the facility and nursing staff could reach a Dr after hours if indicated. Many things could be done without leaving the unit and specialists visited as needed (podiatrists, optometrists, dentists, etc). PTs were in-house staff. If there was chest congestion, xrays could be done in the patient’s room, medications were prescribed as indicated, wound care was managed, etc. Worth reviewing how things are done with the unit’s head nurse or director of nursing.

When the time comes that preferences exist for how specific treatments/interventions (including most trips to hospitals) should be handled, many states have a form that allows an item by item statement about how each medical circumstance is to be addressed. In MA it is called the MOLST form: Medical Orders for Life Sustaining Treatment; other acronyms vary by state. It is appropriate for people with serious health issues (or their health care proxy) who would currently choose to avoid or receive various treatments. Going through the form with the Dr was extremely helpful to me as health care proxy. Form samples are online and are a good starting point for considering a range of possibilities.

All the best with the decision making and transition. I found tremendous peace of mind in making the change when needs increased to a tipping point.

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I will add you may want to revisit that form every couple years or when there is a major change in medical care - in our case when my parent went on hospice we redid the form that had been done several years earlier. It hadn’t occurred to me that there would need to be changes as my parent was already in relatively poor health when it was done the first time but there were things they weren’t willing to face the first time.

It depends state by state and facility to facility on some of your questions.

I noticed in my home state (WI) how the lines were drawn on being able to stay in assisted living - often depending on regulation, how much a facility may keep someone in assisted living longer than allowed. In Alabama, we often had people in rehab that had an evaluator come over from their assisted living facility and deemed that they could not meet the regulations to return to assisted living.

I have worked as a RN (BSN) for a skilled care/rehab facility in Alabama over the last 5 years of my career - I worked for a facility that grew over a few generations from one to a large chain – so very standardized on running a facility well and following regulations while also staying profitable. The rehab portion is key on the profitability - and they were highly ranked along with returning patients to keep the ‘beds full’. One wants to have very good care and a well run facility - and I imagine in some areas it is challenging to do with the turnover of patient care techs/Certified Nursing Assistants. Our facility trained and paid screened employees for CNA training, so that we had relatively good staffing. Over the time I worked there, they added NPs - we had two full time for the facility (overall facility was about 150 beds), and the NP group had call after a time each night and on weekends (otherwise the facility NPs answered call on their residents). Our physician came every week (prior to the NPs he had more responsibilities). We didn’t have ‘standing orders’ like a hospital or a particular physician may have, but that may be dictated by the state you are in. We had an excellent MD - and some patients also had used him as their primary care physician when they lived at home.

Our building used separate oxygenator machines (hospitals have oxygen and suction and the like with plug into the wall ports - but that may certainly be dictated by rules/regs of hospitals and their accreditation, and also safety measures). Can and do have higher level of oxygen and 24/7 if needed - most had levels below 5L setting. Use of BIPAP. Catheters. Suction. NPs manage lab testing and medications, along with MD. There are separate regulations and state monitoring of skilled care/rehab facilities. IDK if rules/regulations/state monitoring of assisted living varies state to state, and what falls under home care regulations for state monitoring.

OT/PT/ST - if a facility has a fair number of rehab patients, they will have the staff and facility for services on site - as upon entering into rehab (often the patient is coming straight from the hospital) will have evaluation paid for by insurance for these services, and rehab care for the specifically identified needs. A skilled care resident who goes to the hospital, upon return may also have some rehab time and also some days of care paid by Medicare/Supplement under those guidelines. Due to Covid, a lot of rehab needed to be done in the room (I retired in Oct 2021 so IDK if they go to the rehab services room or not now) - which limited the benefits of the rehab facility where the PT could be so much more with that equipment. OT/PT/ST was a separate company for our facility but resided in house and did an excellent job.

Also activities director/staff - plan various things that do lift the spirits of the ‘community’. Residents that can go to dining room (Versus staying in the room for meals) - again Covid had limitations. Before Covid, in our facility, those that could went to dining room for lunch and dinner; breakfast was in their room for the entire facility. IDK if it is a thing of the south, or older people being able to do well with breakfast types of food - but a lot of residents would eat the best with breakfast and also say breakfast was their favorite meal. Registered Dietician that runs the meals and special diets can help with the dietary plan for your father. Residents having a small refrigerator in their room (if facility doesn’t provide but there is room to have a small one for drinks and snacks) - our rehab rooms had a small refrigerator in every room.

Be sure to pick the best skilled care/nursing home facility for your father - that meets his needs and that he would like - a facility a bit further away may be worth the extra drive - I know in populous areas there can be a huge difference in higher quality and with lower overall out of pocket cost. We had residents with pension plus their SS which covered their cost of care; some transitioned to Medicare/Medicaid once their personal funds were spent – but their care remained the same. The overall facility (unless it is a government or state run facility) does take care in how they fill their skilled care/nursing home beds.

Hopefully once a transition is made, your father can do very well at ‘the new place’.

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@compmom and others, sending warm regards.

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It’s so nice to have hospice nurses, aide and meds. It’s so nice to be able to give morphine and ativan. I am being conservative, maybe too conservative. The hospice nurses are helping me figure out when and how much. They are all wonderful.

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I’m glad you have the hospice support during this time.

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How is everyone managing this week?

I got my parents’ credit card replaced, new house keys made, calls to the doctor (that haven’t been returned), food delivered, siblings met with, schedules adjusted, and my father now has an appointment to finish the cataract work that was interrupted by his other medical issues.

And in a lovely moment, we woke to the sound of a riding mower in the front field. Their neighbor saw me out clearing the hedge of unwanted growth; realized the field wasn’t 16" tall by choice, and started mowing. “I was afraid your Dad would be mad, but we could see something was keeping him inside” Neighbor told Mom to just let it grow back, and when it is tall again, he’ll be back to mow.

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We had a nice neighbor with a riding mower that came and mowed our front yard while we were out of town an extended period of time. A funny thing is the google picture of our home is of my DH mowing our front yard. Since we live in a very ‘hot’ housing market, we get unsolicited post cards with our house pictured on it.

After DH’s intense period of parents caring for the parents (Dec 2020 - Mar 2021), we now have none of those responsibilities (they both died at age 92 - and their bodies wore out/health issues). Now focusing on helping as parents/grandparents. The circle of life.

Great neighbors absolutely add to home valuing! So glad you have those near your parents’ home.

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My dad is doing great after recovering from his leg surgery in April. He and my sister’s family, as well as his caregiver, are all at his condo on the beach in Port Aransas, Texas this week. He seems to have no lingering effects after his bout with COVID a few weeks ago. I am so thankful! He’s going to regular PT again for the first time since before the pandemic. Even his voice isn’t raspy! He was sounding like Bill Clinton for awhile.

I hope to go down to Austin again in October, for a high school gathering and the 100th anniversary of my college dorm (I lived there all four years and adored it). If my husband comes down with me, we’ll have to find a place to stay, because my dad’s unit and my sister’s house are both too small.

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Both my parents have dementia, one with Alzheimer’s, the other without. It is tough!!

I just learned of this paper today, and I’m kind of blown away. I think it’s potentially a big development!

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Thanks for linking to that article. I wish they could find something quickly to help my 61-year-old friend with early onset AD, but I guess that really is just wishful thinking. :frowning:

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A friend’s DD got her PhD with Alzheimer research and is working for the Alzheimer Assoc. My mom had Alzheimer’s (died at age 77); happy to hear about research advances.

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My mom had non-Alzheimer’s dementia. I hope that research can make some big breakthroughs that translate into better treatments in the near future.

My MIL has been in her new AL facility a week shy of 3 months. I wish I could say that she’s settling in well, but that’s not the case. She has no interest in doing anything that might possibly prolong her life, so she’s making excuses to miss the doctors appointments my SIL is setting up for her. She will do the minimum that the PT at the facility wants her to do - for example, she is bent over at the waist, and she will walk in a harness held by the PT, sans walker. But she seems to do it just to keep everyone off her back. Every time SIL or her H come to get her to take her somewhere, she has an excuse not to go (stomach issues, too tired, etc.). It’s really sad that she’s just checked out. It’s hard for H, because he hasn’t been able to go to see her since early May.

My mom still requires someone to be around pretty much 24/7 and requires reminders to eat and do most things. We have been rotating her care amongst us her kids but several have been ill recently and/or traveling. We will need to switch her to assisted living as it’s not working well for us. One family member has been on travel, another three just came back from trips, two with Covid. Another has had Covid in their household and now has nausea and other symptoms. One retired sister who had been helping may need to start working as her H is losing his employee.

The brother who is in charge of finances has been dragging his feet on looking into mom’s assisted living options.

Hello, I am new to this thread. It’s so helpful and I appreciate all the shared support, knowledge, and experience. But despite scouring the Internet for information about my 85-year-old mother’s mysterious medical condition, I can’t find a thing and wonder if anyone has a parent or relative who has had a similar history. Three times in the past two years, my mother (who lives independently and has no cognitive issues) has collapsed and remained unconscious for between 12 and 18 hours – until someone found her. She has no memory of the events. She has sustained fractures and rhabdomyolysis from prolonged immobility, but has bounced back pretty well. She has been tested for every possible cause (seizures, UTI, head injury, heart disease, stroke, etc., etc.) at major teaching hospitals, but her teams of doctors have come up with no causes. We have provided a fall detection device, five day a week help, and multiple checks during the day, but this last incident occurred at about 7 pm (she was in the middle of cooking dinner, it appeared) and I had checked on her at 6 pm, when she was fine. I found her at 9 am the next day when I was picking her up for an appointment. Her dinner was burned in the oven and she was unconscious on the bathroom floor. If anyone has any experience with this type of situation, I’d very much appreciate it. We, of course, need to make a change in her living situation since all our prevention tactics and oversight have failed, but she’s very resistant to that since she’s mentally sharp and very independent. I’ve hired 24/7 help for the next week, but that’s only a short-term solution. Anyway, thanks for any light you might shed on this medical mystery.

Have you seen https://www.aafp.org/pubs/afp/issues/2017/0301/p303/jcr:content/root/aafp-article-primary-content-container/aafp_article_main_par/aafp_figure.enlarge.html

(Or latest / similar differential diagnosis literature.)