Updated 3.11.24
My wonderful Mom passed away in late November 2023. She was never much for premonitions. It surprised us both when she had 3 of them about the last year of her life – and they all came true!
Her last weeks taught me important lessons the hard way. I hope sharing these will save other families some frustrations. Here are the top 5:
1) It is vital for EVERYONE to have a practice of self-soothing -- prayer/meditation/deep breathing. Whatever works. This skill set is essential. Adopt one now. Make it part of your “healthspan” – daily exercises/practices that bring quality to your lifespan.
2) If your loved one is counting on you to become their family caregiver as they age, use milestone birthdays (65, 75, 80 etc) to review your loved one’s situation and goals. At every approaching change (mobility/hearing aids; a move to assisted living etc), adopt these steps early, before they are an urgent need. Meet your elder’s Doctor/Primary Care Provider (PCP) at one of their routine appointments. Make sure there is good communication. Discuss health issues. Including any referrals to specialists or a gerontologist. Even active, healthy seniors have older bodies with age-related needs. If you are expected to care for your loved one, make sure their PCP is the right fit for you too. Have conversations at the appointment with the PCP and your loved one to confirm everyone is on the same page with regarding end-of-life care. This will help your loved one’s wishes be understood and honored. If you suddenly must take over care for your elder, having a previously-established rapport with the PCP will help everyone.
3) Pay attention to new/strange coughs or respiratory changes. Report these right away to the PCP. Even if your loved one has never had lung issues before. Many obituaries for the elderly cite pneumonia as the cause of death. Even healthy lungs of non-smokers become fragile over time. Lungs weakened by age are an ideal host for infections that elderly immune systems can’t fight off.
4) Once an elderly person moves to Assisted Living, family should be prepared to stay in their lane. A move to Assisted Living or hospice indicates the loved one’s need for professional services are at a different level than the family can provide. Nothing can replace the comfort, and oversight, from family (and/or longtime private caregivers, especially if family can’t visit in person frequently). It helps everyone if family/private caregivers can adapt to the routines established by the professionals. Finding professionals that the family can establish good communication with is essential to the success of these arrangements.
5) It wasn’t until after Mom passed away that I finally got some clarity on why her case was referred for outpatient palliative care … not hospice.. when she was discharged from the hospital after surviving a bout of pneumonia. She had no wish to return to the hospital after that experience. Still, her case didn’t go directly to hospice. I had never heard of palliative care. Navigating the rules of these options was challenging. I wish I knew then what I’ll share here:
It was explained to me after Mom passed that she couldn’t qualify for hospice without a terminal diagnosis/life expectancy of 6 months or less. It was also explained to me that her being on palliative care actually qualified her for more outpatient services than hospice. (For example, it was thanks to the palliative care orders that Mom was able to get a portable X-Ray done in her room at Assisted Living and get prescriptions to help with her lung infections. Those services wouldn’t have happened under hospice). Hospice qualifies patient for more Durable Medical Equipment (DMEs) and supplies. But most hospice services will only take a patient with hospice orders – not just palliative care. And some insurance companies won’t cover palliative care unless it’s for a hospice case.
Trying to sort out all the rules for both palliative care and hospice for Mom was an exhausting challenge for me. As it turned out, she passed away about 6 months after she was discharged from the hospital. Within the typical range of time that hospice orders cover. It was a long journey.
A Life Well Lived –
Let’s start with celebrating the great life Mom lived for over 98 years:
Her 62-year love story of a marriage with my Dad;
Her health and fitness allowed for decades of travel and adventures from the 1930s – to the early 2000s! Her last big trip to Europe with Dad was a month-long stay in 2013 (she was 88!); Their last multi-state road trip was in 2018. They had a few trips to Las Vegas after that. She walked a quarter mile a day into her late 90s.
She compiled 40 photo albums/scrapbooks that are now vintage time capsules of Europe, Hawaii and several other states.
She was an artist (she painted and played the piano); a sister and sister-in-law; an aunt, a grandmother, a cherished friend to many, and the best Mom ever.
When Dad passed suddenly at the end of 2021, I quickly realized how much he had been doing for Mom. It was his efforts that kept them living independently. Both of my parents were in their 90s. I knew Mom had age-related issues: some vision, hearing, and mild short-term memory loss. Still, I was shocked to see she couldn’t use a cell phone on her own. There was no landline in their condo. I got one installed, but it was obvious Mom could not be left alone. I moved in and lived with her for 7 months. We added private caregivers and mobility aids as her needs changed. Sometimes the circumstances were complicated, but thanks to lots of pre-planning and support from others, we had many beautiful moments together. I was able to keep Mom living in her condo for over a year. Our motto was “as long as you can stay safe and stay healthy you can stay in the condo.” This didn’t address a problem we hadn’t anticipated. Without Dad around, Mom had become socially isolated. As time went on, keeping Mom physically safe and emotionally engaged in the condo became challenging. Private care is also the most expensive option. The situation wasn’t sustainable.
Assisted Living (AL)
It was March of 2023 when we moved her into Assisted Living – a facility we had toured, evaluated, and selected back in 2022. An extra bonus that I appreciated later on was its proximity to both Mom’s condo and my house. Mom was quickly a favorite of other residents and staff. She really enjoyed the social interactions and activities there (and not available to her at the condo). Excellent communication with the AL’s Medical Director gave me a lot of comfort. I was confident the facility was a good fit for both of us. Mom needed care I couldn’t provide her on my own, even with private caregiver support. AL was the professional service to help us both with this next phase. Mom and I agreed we should have made the move for her to AL sooner than we did. Her first overnight at AL made me realize how much sleep I had been losing. While Mom was at the condo, even with private care overnight, I was always on “back-up call.” At AL, Mom had a team to keep her safe.
Assisted Living implies that residents still have some independence. They just need assistance with some Activities of Daily Living (ADLs). There’s an evaluation during the admission process, and re-assessments as needed. If you don’t want to re-locate your loved one later on in the aging process, make sure the AL facility can provide increasing levels of care tiers. Expect increases to the monthly fees as well.
Mom was in her late 90s – but she had the mobility and enthusiasm to take part in the activities at AL (bingo, crafts, guest lectures/classes, church services, meals in the dining room). However, Mom still needed to have private caregiver services. It was safer for her to have someone with her all the time during the daytime hours. AL can’t provide constant supervision/companionship. Mom had a longtime private caregiver at the condo. We both adored her. There were contracts we had to arrange between her caregiving agency and Mom’s AL. This allowed Mom to continue with private caregivers. That continuity helped Mom’s successful transition.
Everyone’s entry point to AL will come at a different time, with different needs.
I was with Mom daily. For several months, I was with her from 7-9am for her start-of-day and breakfast. I returned from 5-7pm for her dinner-to-end day routines. Mom had private care 9am-5pm. I also took her to Physical Therapy (PT) and other appointments. Later on, as her medical care needs increased, I was there daily to visit as her daughter, but I extended the hours of private caregiving to 7:30am-7:30pm. This gave Mom someone familiar now that she needed assistance with ADLs (dressing, bathing, etc). I tried coaching Mom through some yoga-based deep breathing exercises. When she did these along with me and her private caregivers, these exercises did help with her breathing and her relaxation. I had started doing these with Mom back at the condo.. but she never had a self-soothing practice before. I wish she had been able to adopt one.
Most residents at AL use a call button to summon care team members with they need ADL assistance. Mom resisted using a call button. It was so engrained in her to “not be a bother” that getting her to use the help and resources provided for her was a challenge. The situation was emotional for her too. After decades of an active life with Dad, finding herself needing help was an adjustment. It was humbling for me too. I had to accept I couldn’t be there for her 24/7.. especially after over a year of overseeing all her needs. Managing my Type 1 Diabetes during all of this was demanding, time consuming, and imposed boundaries on me for everyone’s safety.
Mom was just getting in the groove of her new opportunities at AL when a health crisis threw us all a curve ball.
5 Days in the Hospital
We were all shocked when a sudden breathing distress episode in May landed Mom in the hospital. It started with a strange cough that wasn’t responding to treatment recommended by Mom’s longtime primary care doctor (a Nurse Practitioner/NP). We took Mom to Urgent Care. She got an X-ray and antibiotics. The doctor there told us if the cough didn’t improve in 48 hours, we should take her directly to the ER. There was mild improvement, but mom’s private caregiver and I packed a bag for Mom and planned to take her to the ER the next morning. When I arrived at AL to take Mom to the ER, she was in the grip of a breathing distress episode so severe we had to call 911. Mom was admitted to the hospital from the ER. It was the start of a long 5 days.
Mom’s recovery amazed several doctors. They told us not many 98-year-olds leave the hospital after a bout of what turned out to be pneumonia! This experience made Mom determined to NOT return to the hospital. Despite great care, her time at the hospital also confirmed the wishes my parents and I had discussed frequently. Home (or a home-like setting) was preferable to the clinical interruptions, and unwanted extreme measures, of a hospital for possible end-of-life scenarios.
Mom had a rough time in the hospital. The nurses told me she would get very disoriented at night (they also explained why overnight distress was common with elderly patients). I was with Mom at the hospital as much as possible. I was there first thing every morning so I could speak with the doctor making rounds. Mom had a call button, but she was medicated and recovering. She never figured out how to use it. One morning when I came into the room, she was wet and miserable and whimpering. I got help from the nurses right away... but it was awful for both me and Mom.
Some essential items to have at the hospital for your elderly loved ones: 1) several large bath towels. Elderly patients are often chilled by temps in the hospital rooms.. not to mention the stress of their situation, medication etc. Hospital gowns are backless. A large bath towel is a great way to keep back, lap or chest area covered. A robe can interfere with IV lines. Bath towels (preferable something from home for extra comfort) can be rolled to help prop up the patient in bed or a chair, as well as acting as a lap blanket, back covering or bib. 2) Hand/foot warmers. These chemical packets activate by snapping or shaking them. You can find them online or at sporting goods stores. Elderly patients often have cold extremities. Hand/foot warmers bring extra comfort. 3) A small basin/bucket and some small disposable cups -- these bedside items will help you help your elder brush their teeth when they are bedbound. Something small can be stored with the toothbrush (in a holder) and toothpaste inside a container.
Once Mom got back to Assisted Living and recovered, both from her illness and the disruptions of that experience, she urged me to take all the steps possible to make sure she didn't go back to the hospital.
Surviving a bout of pneumonia – at 98 – left Mom’s health compromised. The doctors at the hospital had warned us Mom’s lungs were weakened. She would be at risk for recurrent lung infections.
When Mom was discharged from the hospital, I assumed the next step would be hospice. Given Mom’s condition and her wishes to not return to the hospital. Instead, she was discharged with orders to follow-up with "outpatient palliative care.” I had met with the inpatient palliative care team treating Mom while she was a hospital patient, but I was told they didn’t provide outpatient palliative care. Mom’s longtime NP wouldn't write orders – for hospice or palliative care. I had to keep advocating for Mom with calls and email to the NP’s office. For months, I struggled in confusion. I was contacting different doctors as well as following up with the hospital’s inpatient palliative care department that had worked with Mom. I was trying to understand what outpatient palliative care was, and how to get it for Mom… and was frustrated at every turn.
We were in a catch-22. Mom worried about an unwanted return to the hospital. How was I going to make sure Mom’s wishes to avoid hospitalization were followed? Medical and other sources told me a terminal diagnosis (6 mos or less to live) or underlying health condition was required to qualify for hospice. Without hospice... or the elusive “palliative care” option.. in place, another breathing distress episode would force Mom back to the hospital.
Once Mom returned to Assisted Living, I had her private caregivers keep charts. We documented Mom’s Blood Pressure, Pulse Oxygenation readings, and pain chart indications (on a scale of 1-10) twice a day. I was with her daily-- seeing the impact of her post-pneumonia symptoms eroding her quality of life. I was keeping notes on calendars and gathering data. I hoped these efforts would support Mom getting the care she needed.
Mom had many good moments in the months from June-August. She managed to stay active, alert, mobile, cheerful, and grateful into her late 90s. She was able to resume her Physical Therapy sessions. I was lucky that my yoga teacher was able to visit and coach us through some breathing exercises and gentle stretches. These routines helped for a time. However, as the hospital doctors had warned us in May, Mom’s lungs were fragile from the pneumonia and due to her age.
As Mom’s health diminished, her AL experience shifted gears. She became less focused on the AL activities. She leaned into the companionship from private caregiving. Looking back now, I wonder if her private caregivers and I were expecting too much of her recovery. We had been so used to scheduling her active life, but she was in AL now, post-hospitalization, and in a different place in many ways. As the months went on, Mom’s needs were evolving. Her situation needed more clinical/medical support to keep her (and everyone helping her) safe and to keep her comfortable.
Staying in Lanes
This evolution from Assisted Living with caregiving support to AL with clinical medical needs support is an important distinction. Everyone needs to switch gears to keep things running smoothly. Discuss this transition with your loved one and their medical support team. Be sure everyone is on the same path with what the priorities are. Communicate the priorities frequently. Back at the condo, I had established a routine for medications, meals, exercise etc. which Mom’s caregivers followed and reported to me about. We tried continuing these routines as we cared for her at Assisted Living. Her private care givers and I were used to being the team in charge of her care. But we should have recognized that her medical routine was out of our hands now.
The admissions process at Assisted Living documents the residents initial care plan. This includes “orders” from the Primary Care Doctor for items to be administered to the resident - everything from OTC vitamins and Tylenol to prescription meds. Items on the “orders” list are then administered to the patient by the AL Med Techs. Getting items discontinued from, or added to this list, requires new “orders.” If the resident is still quite independent, they can manage changes to their routines on their own. For most residents, family will be consulting with the AL staff on the initial plan, and updates as needed, but the Med Techs will oversee this routine. To keep resident care consistent, it’s best if family (and private care) let go of medication-related tasks once the routine at AL is set.
Not all AL facilities allow private caregivers to attend residents. There are registration requirements and rules to follow. Yes, family is paying for the services of private care, but everyone must follow the AL rules. In a home setting, family may give private caregivers some independent authority over a resident’s routines. This authority doesn’t transfer to an AL setting. It’s helpful all around if private caregivers attending a resident at AL consider themselves as “guests” and accommodate the routines of the AL staff.
Family should not expect private care to act as a proxy for them with AL or hospice staff. Asking a private caregiver to assume the role as proxy is an unfair expectation and not part of their caregiving duties. Having a private caregiver in a proxy role may be convenient for family, but can cause friction between private care and AL/hospice staff. A lot will depend on experience and personalities.
Mom having private caregivers with her while being a resident at assisted living was rare situation. It’s also rare to have family visit daily like I was able to. Mom could not be left alone, so she needed more care than assisted living could provide.
Some of Mom’s longtime private caregivers had a hard time adjusting. The private caregivers struggle came from a place of good intentions. Being private caregivers for a client who is now at assisted living was a new situation for them as well. They had known Mom at her own home and seen her in better days. Private caregivers in a home may perform some medication supervision, but the job isn’t medical care.
If your loved one is needing more hands-on medical care, that can be a sign it’s time to transition to AL. The struggle for some of mom’s private caregivers to shift gears from social support caregiving to the new clinical priorities of mom’s needs brought complications. Caring was a priority for everyone’s roles, but all the roles were changing.
Mom remained focused on staying engaged and upbeat. When she started to complain to me about how awful she felt, I knew she was suffering more than she let on. I recognize now she was moving away from being an elderly parent needing support to retain “independent living” status. The changes in her health were making her a patient in need of skilled nursing care.
Both of my parents presented exceptionally well for 15 mins clinical appointments well into their 90s. Their physical vitality and cheerful optimism were rare for their demographic – but I was concerned when medical professionals didn’t look at them more thoroughly. This is also where my own 50+ years of Type 1 Diabetes impacts my perspective on my parents’ health care. I know how important skin care, foot care, vision and hearing checks are. My folks had minimal care in these areas. (I finally persuaded Mom to get hearing aids in April and it vastly improved her quality of life.) Mom had vision care, but needed new glasses. If my parents’ NP had ever examined their bare feet – perhaps Dad’s non-healing skin wound on his big toe (that was actually cancer) and Mom’s chronic ingrown toe nail could have been treated earlier and more effectively. Preventative care – and adopting changes/support equipment before they are needed vs waiting for chronic needs – makes things better for everyone. A friend of mine who is an RN reminded me that PCPs are not geriatric specialists. I know from my diabetes that many diabetics are treated by PCPs.. but care from an endocrinologist and diabetes nurse educator is more effective and appropriate. Being elderly isn’t a chronic condition, but everyone in that category should probably be seen by a geriatric specialist – at least for an evaluation.
After the hospital stay, Mom became frailer. I worried that without the support of hospice in place to stay ahead of any complications, especially any pain issues, Mom would have preventable suffering.
Her troubling symptoms lingered. After a lot of calls and emails from me, Mom's NP finally agreed to an evaluation appointment in August. I was confused at the time why Mom didn’t qualify for hospice. Mom had surprised everyone by surviving pneumonia back in May. She did NOT want to return to the hospital. She had lingering respiratory symptoms. In the end, the NP wrote palliative care orders only. Not hospice orders. The NP also connected me with a hospice service that would take Mom's case even though she didn't have hospice orders.
I'm glad we got all that in motion in August. I arranged to meet each of the palliative/hospice care team assigned to Mom's case when they made their first visits with her (An MD, 2 RNs, an LVN, a social worker, a chaplain). Many of them shared how amazed they were at Mom’s vitality. (see my previous observation about how fantastically Mom would present for a 15 mins medical appointment). They would stay on Mom’s case if/when she transitioned to hospice.
Little did we know by the time they all started seeing her, Mom had only 3 months left to live.
The Last Month
Mom's decline started in early October with rounds of lung infections. She stopped participating in activities. She had meals in her room and stopped trips to the dining hall. Once she needed to go on oxygen, she didn’t even want to be wheeled outside in her transport chair. Those walks outside in the fresh air and sunshine had been restorative for everyone. Mom’s world was collapsing inward.
She had a breathing distress episode the last weekend of October. It was like the event in May that sent her to Urgent Care and then the ER. Thankfully, this time she was on palliative care. Medical support and equipment were brought to Mom’s room. She could be treated at AL and avoid a return to the hospital. Mom was put on continuous care nursing for 3 days. This event officially transitioned her case from palliative care to hospice. Hospice also finally started to give her more medication for pain/anxiety. The Med Techs at AL had been reporting to me that Mom was not getting enough relief from those symptoms. This was in addition to what I was seeing myself when I was with Mom.
I hoped after this October breathing distress weekend that hospice would keep her on continuous care nursing, to better monitor her pain and her symptoms. Hospice told me they could not resume continuous care nursing for Mom unless she was “in distress, or actively dying.” (I have since learned that hospice will only be reimbursed for up to 5 continuous days of this type of nursing. Each incident re-sets the 5-day clock. But hospice can’t provide round the clock care for weeks.)
It was beyond frustrating at the time. I have more the clarity months later. But it still seems wrong that I couldn’t get the resources Mom needed to provide the comfort she was desperate for.
Mom and I had discussed the choices in front of her. Get more medication relief from her symptoms, which were diminishing her quality of life, and perhaps be less alert. Or stay more alert, but also have the symptoms to deal with. Mom made it clear. Her preference was to have relief from her symptoms. She was plagued by lung issues that gave her a hacking, phlegmy cough that she could never clear her throat from. She had anxiety from “I can’t breathe” sensations (even when her pulse ox readings indicated her oxygen saturation levels where around 98%). These symptoms prevented her from getting any real sleep or even much rest. This went on for weeks. (I didn’t know at the time she was suffering from chronic sleep deprivation – who knows how much this contributed to her anxiety?)
When the hospice team members would visit Mom, they would check her vitals and ask her “how are you.” Of course, Mom would always say “fine.” I showed the hospice team the pain chart we used with Mom to get more specific information about the symptoms she had. But I never saw one of them use the chart without me or one of Mom’s private caregivers reminding them about it. A 15 mins visit wasn’t adequate to really assess Mom’s level of discomfort. They never looked at the charts we kept with Mom’s BP, Pulse Ox readings, and pain scale records 2x a day.
(I later learned that many of Mom’s original medication orders were written to be administer “as needed” – which assumes some ability by the patient to communicate their pain level. My Mom’s desire to stay cheerful repressed her ability to communicate her pain level. Hospice finally updated her medication to be administered every 6 hours, so she was getting more constant relief).
Meanwhile, it fell back to me again to continue documenting her vitals, pain scale results, and the lack of pain management. In order to learn more about the distress she was having overnight, I would need to pay for overnight private care to resume. Arranging this took longer than I anticipated.
Mom lost her mobility 2 weeks before she passed away.
I should have started overnight private care as soon as Mom lost mobility. It would have saved her a week of avoidable suffering. Once she wasn’t mobile anymore, every time she needed to be moved around she was in pain. I wish I had known all of this sooner. I only learned this AFTER she had passed away.
She had a years-long case of pre-existing osteoarthritis in her knee. He knee finally gave out and could not support her body weight. We had to dead-lift her out of bed, onto chairs or her chair commode. I purchased a “PureWick” system. This product is an external catheter for women. It kept her fragile skin dry and safe from tears/infections. This was a device Mom was on at the hospital. Hospice didn’t supply this – they could only offer a Foley catheter (typical for end-of-life care).
Mom ended up having a fall-out-of-bed incident the night before overnight private care could start. I didn’t know then that loss of mobility increases fall risks. Previously mobile patients “forget” that they can’t get out of bed and stand on their own. Decades of being able to execute this familiar activity of daily living ends up betraying fragile elderly bodies.
Even with the fall, hospice wouldn’t resume continuous care nursing. They told me “falls are preventable... have assisted living check in on her more frequently.” I told them, Mom was already on the highest care tier/number of check-ins assisted living could provide. That the only way we could prevent falls was to have someone with her all the time.
My job was to keep Mom safe and comfortable. I was doing everything I thought would work, but still felt like I was failing her.
Once I had reports from the overnight private caregivers, it became obvious to me that Mom was really suffering. Not just from lack of sleep. She was having night terrors. Calling out and flailing in bed. It was even worse that not getting any sleep. It’s likely she was chronically sleep deprived for at least 3 weeks -- from the time she went off continuous care nursing after the breathing distress episode at the end of October. Sleep deprivation is torture.
Getting Mom on hospice was a struggle I didn’t expect. Learning about palliative care – and finding a service that would take her as a client without hospice orders was a steep learning curve. The hospice service we ended up with sent caring people... but the organization and administration was chaotic. This added stress to the staff, who were already stretched thin. Staff contacted me to make spur of the Moment appointments with Mom. Administration did eventually agree to my request for at least 24 hours’ notice – but it seemed strange to me that this simple request was an anomaly for them. The hospice service covered such a huge territory that the nurses were sometimes hours late for appointments… or even had to cancel when they couldn’t get to Mom until after she had gone to bed for the night. I felt for the staff. The entire experience didn’t match the comforting support Mom and I anticipated once a hospice service was assigned to her.
If your loved one is at Assisted Living and hospice is looking likely – I would highly recommend using a hospice service the Assisted Living has a track record with. There will be a lot of important communication going on between AL and hospice – and your loved one will benefit if there is an established working relationship between these two services. Once your loved one has hospice orders written – use the same care selecting hospice as you do with AL. You want to build a rapport with the staff with good communication and mutual goals established and reinforced.
I adored my mother. My schedule allowed me to spend daily time with her. We deployed extensive resources to help her and me. I tried every way to keep her comfortable. Even so, the end comes on its own terms.
In her final weeks, Mom always had someone with her who knew and loved her. Me. Longtime private caregivers. Assisted Living Med Tech and care team members. Mom had 24-hour bedside private care and hospice her last week. (all of which I had to advocate strongly for on her behalf – and pay private care for part of).
A few days before Mom passed, a hospice RN visited for a routine check-in. At the end of the appointment, Mom had a spontaneous delusion – something I’d never seen from her before. (I have since learned delusions like this are a common signal of the end-of-life process). That symptom happening in front of the hospice RN seemed to be the missing variable. The RN contact the hospice office. Continuous care nursing resumed that night. Hospices nurses were bedside to monitor Mom’s symptoms and medication more closely. Mom finally got some long-overdue relief. Between her periods of much needed rest, I was able to talk with her. We even had a good laugh. Those are the moments I choose to remember.
Mom passed away two days later.
Moving on
No services were held per Mom’s request. No flowers etc. Just good memories. And so much gratitude. All the family and friends who reached out to tell me how much they loved and missed Mom helped my own bereavement. Even as I had to move on. Loss of a loved one is a process of grief, and triggers rounds of administrative tasks. These needed my attention. It is surreal to be the last surviving member of my nuclear family unit.
In the weeks afterwards, I spoke with staff at the hospice, AL, and the private caregivers. These conversations, as well as the calendars and notes I kept, helped me deconstruct the last months of Mom’s life. We all learned lessons. I was charged to do as much as possible to keep Mom safe and comfortable. Writing out this recap has helped me put some closure on these events.
Mom and Dad each got to spend their last Christmas/holiday season in the condo home they loved and shared for over 20 years. I’ll always be grateful for that. The holiday seasons going forward will be comforting. Full of precious memories. And a strong foundation to build new ones.
Hopefully the lessons shared here will help other families.
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3.11.24
This You Tube channel "Hospice Nurse Julie" is an excellent resource. Her videos cover FAQs and explain common events in the hospice and end-of-life journey. I only found this channel recently, and I wish I had access to this information sooner.
12.1.23 segment from Amanpour and Co. on the grinding costs of elder care. It references important NY Times “Dying Broke” series (https://www.nytimes.com/series/dying-broke). There are no easy answers on how to afford elder care — short or long term. It's a universal problem. This segment discusses the average costs of $10k/mo for assisted living -- which means 6 figures a year! Aging at home with Private care is even more. Spending down all assets is often inevitable if many years of constant care are required. If elders are expecting kids/family members to take them in and provide full-time caregiving -- be aware of the emotional and financial impact. Have the hard conversations early and often.
This next video is 2 years old, but the challenges are still the same. "The Retirement Gamble" from Frontline
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