Sunday, August 11, 2024

Caregiving Top Tips (updated 2.21.25)

         


If you are charged with the care of an elderly person, here are three wishes for you. And a warning.

Focus on these attributes: courage, patience, and grace. These three wishes will grant you self-preservation. With courage, patience, and grace, you can be the caregiver you want to be, with whatever resources you may have.

And the warning. You will never have enough time, experience, and money for this job. Caregiving grinds down resources on all levels. You can’t help anyone if you are tapped out. Find ways to replenish your reservoirs.

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(Update 3.14 -- this post on Caregiving was written before my Mom passed away. See this March 2024 post for Top Tips on Hospice and End-of-Life care: https://stuartngbooks.blogspot.com/2024/03/top-tips-hospice-and-end-of-life-care.html)

The 3 paragraphs above are an update to the opening of my first-ever “Top Tips” post back in Sept 2022. Writing that post was a chance to reflect on all I’d learned in my first year as a primary caregiver. My beloved Dad passed suddenly at the end of 2021. I quickly realized my wonderful Mom wasn’t safe living alone. Dad had been doing all the heavy lifting to keep them living independently in their condo. Now it was my turn. On the 1st year of our journey, I went from full-time sole caregiver, to being with her along with in-home caregivers. I lived with Mom for the first seven months while we sorted out many details. After that, she had overnight caregivers on 12-hour shifts. I was with her for the early morning and dinner-to-bedtime routines, with day shift caregivers in between. It was a steep learning curve.

With a lot of hard work from me, and pre-planning we did as a family, I was able to keep Mom in the condo for over a year. Looking ahead, I could see the situation wasn’t sustainable. Mom is in her late 90s. I'm lucky she is mobile, alert, cheerful and grateful. And I know she works at it. When I started caring for her, we decided as long as she could stay safe and stay healthy she could stay in the condo. By early 2023, I could see we were nearing the end of that phase. 

We transitioned Mom to Assisted Living (AL). Again, we're lucky. Mom has the best of both worlds for now -- a community designed to meet her needs, and still one-on-one hands-on care. She has a private caregiver with her 12 hours a day, 7 days a week. Due to her advanced age and increasingly frail body, she is safer when someone is with her during the day. She enjoys the social interaction with residents and staff at AL, as well as the activities. I get to visit her daily as her daughter. It was time for me to pass the personal caregiving jobs -- one of the few roles I can delegate while I manages all of her affairs -- to more experienced hands. The move to AL was a big transition. It was well timed, as she had a brief but dramatic hospitalization about 2 months after she moved in. She recovered -- but I have no idea how I would have managed her recovery from that if she was still at the condo w/ shifts of caregivers, and not a AL which is a much safer situation. 

I recently revised this post to add video links for 2 important Frontline documentaries on aging. The most recent post revisions are always in blue text.

My first big revision to this post was back in Nov 2022. When I went to add some more updates in April 2023 -- I accidentally deleted the post. All that work and all those resources. Gone in a blip. Thank goodness I had a backup of most of the text of the post and the links. April 2023 me owes a debt to Sept 2022 me for taking that precaution.

This Caregiving Top Tips 2.0 comes in three sections:

1)    TLDR – here are the links for the recommended equipment. Independent living means having the right tools for the job. Preventing falls and safety risks is the top priority.

2)    Three wishes and self-care reminders. This section covers caregiving options and the costs. There are emotional as well as financial burdens to caregiving. This section has tips to prepare for them, including links for some articles. I will also address some of the pros and cons of assisted living vs. in-home caregivers.

3)    Recommended equipment. This section has links, photos and my feedback/reviews from using these products.

Section 1 -- TDLR (Too Long, Didn’t Read). Links for essential equipment:

UPDATE 8.10.23 -- The lessons in this 2006 Frontline documentary still apply:

Mobility is independence. Independent living requires the right equipment.

Mobility Aids –

Walkers

Combination walker-transport Chair



This is my number one recommended item. It’s essential mobility gear for the elderly person as well as the caregiver. Pros and cons of this model in section 3

https://goplusus.com/products/2-in-1-folding-rollator-walker-4-wheel-medical-rolling-walker

 https://www.amazon.com/dp/B09LRYSVKR?psc=1&ref=ppx_yo2ov_dt_b_product_details

Here are links for the other mobility gear/walkers we got. Pros, cons, and photos in section 3 

Traditional 4-wheeled walker (Nova Zoom)

https://novajoy.com/products?categoryId=368

3-wheeled walker (Nova Traveler)

https://novajoy.com/products?categoryId=187&productId=382

Standing walker (ViveHealth Upright Walker)

https://www.vivehealth.com/collections/mobility-aids/products/upright-walker

Footed quad cane

https://www.vivehealth.com/products/carbon-fiber-quad-cane

Room safety --

Landline phone for hearing impaired

Never disconnect your landline! I was shocked to learn after Dad died that Mom couldn't use a cell phone on her own. Dad had disconnected their landline years before. So for the first few weeks after he passed away, there was NO WAY to reach mom on the phone when I wasn't at the condo. She couldn't even make a 911 call if I wasn't there. I was scrambling to get a landline phone installed. Even with the landline, Mom needed help to make or receive calls. If there’s no landline at the elderly persons residence, get one installed. A 911 call from a landline is the fastest way to get help to the right location. Check with local agencies about qualifying for a free or discounted landline phone for the hearing impaired.


Call Button (CallToU transmitter and receiver)

This is different than those "I've fallen and I can't get up" medical alert call buttons that connect seniors to a service that can summon help for them outside the home as well as inside. I don't have any experience with those since my Mom couldn't be left alone. My recommendations here are for in-home call buttons. 



Being able to use a caregiver-pager-type call button to summon help is an essential safety skill for in-home care and assisted living. Get one early. Get your loved one in the habit of using it to let someone else in the home know they are moving from room-to-room. It may seem silly at first, but this helps prevent falls. Using a call button consistently will help the transition to assisted living or in-home help from caregivers. Knowing to use a call button can help you and your loved ones get the most out of those additional caregiving expenses. Knowing to use a call button will also assist your loved one if they end up in the hospital. For the hours you can't be with them.. it will be up to them to know how to call for help!

https://www.amazon.com/CallToU-Caregiver-Transmitters-Receivers-Attention/dp/B077SYPD5K

“Grabber” helps reach items on tall shelves or on the floor.

Grabber (The one I like best I got from Diaso – this link has photos and a review)

https://www.thestuffsreview.com/2022/07/daiso-all-purpose-grabber.html

Motion detector Night Lights

Nighttime trips to the bathroom are a high risk for falls. Nightlights in hallways and rooms can prevent this. Battery operated “tap lights” can also be handy.

Foot Care -- 

donate all the shoes w/ laces, they are a tripping hazard. Keep feet clean and moisturized. Cracks in dry skin on feet are a vulnerable area for infections.

Velcro shoes

Top pick for fit and sturdy enough for walking

Yibobay Diabetic Velcro closed-toe shoes

https://www.amazon.com/Yibobay-Diabetic-Adjustable-Breathable-Lightweight/dp/B096KVHJLT/ref=

 Silverts Sandals – open toed with Velcro. These are a sturdy option for times when toe pain may require an open-toed shoe option.

https://www.silverts.com/womens-easy-closure-sandal-for-indoors-outdoors

Collections Etc catalog Memory Foam Sandals

These are inexpensive, but lack support and are good as house slippers only

https://www.collectionsetc.com/products/ultra-lightweight-adjustable-memory-foam-sandals/?color=BLCK&size=XSA&utm_source=google&utm

Stretchy socks

Ankle length – available in black or white

Hugh Ugoli Diabetic ankle socks, seamless, stretchy” socks from Amazon

https://www.amazon.com/gp/product/B084Q61X8K/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

Viasox Diabetic Socks – these are super stretchy socks that are easy to get on and off. Available in knee length, ankle and compression sock options. There are lots of fun prints as well as solids. https://viasox.com/



Electric Foot Warmer Pad (cold feet are a common problem)

Mom’s favorite is the “Accelery Double-Sided Heated Foot Warmer” with a tag that reads: “OnKey Electric Technology Heating Pad Model # FT-1616,” now listed as “unavailable”

Here’s a similar one, but this lacks the zipper and timer on the control:

https://www.walmart.com/ip/Electric-Foot-Warmer-Heating-Pad-with-3-Settings-Auto-Shut-Off-and-Detachable-Extra-Long-Cord-Soft-Plush-with-Fuzzy-Interior-by-Bluestone/711560582

 Bathroom Safety --- 

Do these upgrades early. Bathrooms are a high-risk area for falls etc.

Handles for the sides of the toilet

https://www.homedepot.com/p/MOEN-Home-Care-23-25-in-Toilet-Safety-Bar-in-Glacier-DN7015/203933039?source=

 Shower Chair https://www.vivehealth.com/products/shower-chair

Toilet Seat Cushion (women need versions like this – more on that in section 3)

https://www.vivehealth.com/products/toilet-seat-cushion

Waterproof Mattress Protection No one likes to think about overnight accidents… but these can save a lot of grief. https://www.target.com/p/ultimate-mattress-protector-allerease/-/A-17273320

Gifts for caregivers --- "Let me know if you need anything" shows you want to support, but try to be specific. Check in on your way to the store to see if the caregiver needs anything. Offer to get take-out food. Meals and grocery store/drug store runs are always helpful, especially the first few weeks. Before you bring by flowers, plants etc .. please ASK first. While flowers are lovely.. they are also possible allergy issues... and one more thing to take care of in a caregiving situation that's already overwhelming. 

Section 2 -- Three wishes and self-care reminders

(art by Kate Allan, aka The Latest Kate https://www.thelatestkate.art/


Remember the three wishes for you. And the warning.

With courage, patience, and grace, you can be the caregiver you want to be, with whatever resources you may have.

This job grinds resources to exhaustion on all levels. You can’t help anyone if you are tapped out. Find ways to replenish your reservoirs. 

Caregiving in guidebooks covers generalities. Caregiving in action is deeply emotional and utterly unique. You may find great support from resources (websites; support groups) and from friends/family members who have been on a similar path. However, becoming a caregiver is a learning curve for a skill set you will be improvising as you go. The responsibilities are relentless (even if you can delegate some of them). You will want this job to end, and it will, but the exit options are all awful.

Be prepared. Years before you need to, have the difficult conversations about end of life wishes, use of extreme measures (or avoidance of them), finances and obligations, intentions for the dispersal of personal effects, and of the person.

UPDATE 8.11.23. This 2010 Frontline documentary shows families and loved ones facing tough end of life choices. There are vital cautionary tales here. Watch and discuss with your family. BEFORE you find yourselves facing these decisions unprepared at a hospital. Keep documents like Advanced Healthcare Directives; Healthcare Proxy/POA; DRN instructions updated in a portable file or binder or saved as photos on a phone. 


Caregiving plan choices fall into three categories –

Co-residence with Family

Aging at home with private caregiver help

Assisted Living communities

UPDATE 8.20.23 -- This 2006 Frontline Documentary is an excellent recap of these caregiving options.. and the challenges they bring

Don’t want to have cancer surgery at an advanced age after dementia has set in? Don’t want to have the surgery confirm your cancer is spreading, and accelerate your dementia to the point that you forget to eat, so they have to put a feeding tube in you?

Make. Alternative. Plans (ie legal documents/healthcare directives). Now!!

 Just one statistic from this documentary: at air date (2006) “over the next 30 years, the number of people over the age of 65 will double. To the point that they are about 20% of our population. That’s 70 million people.”

 The documentary shows how medicine has made great advances in curing infectious diseases like pneumonia and flu that used to claim elderly people. But that often leaves people to perhaps a harsher fate: lingering with chronic conditions that often have devastating complications over time. Sometimes the only escape from the cycle of treating and curing is dying from a "medical catastrophe" -- a non-healing bedsore or rampant UTI -- likely induced by a prolonged hospitalization.

 The documentary also explores how we’re keeping people alive longer with fewer doctors to care for them. As many people are too frail to leave their homes, doctors are returning to house calls. Life is prolonged, but with loss of function. Chronic diseases take a toll on the body. Leading to enfeebled frailty. All at staggering costs to family resources at every level.

 It’s always been the assumption in the US that the elderly are cared for by members of their own family. But this situation is becoming untenable as families are smaller, less stable, and more geographically isolated. Plus the amount of time devoted to caregiving has moved from months to years, and even sometimes decades. We are facing a future where people are living longer, with conditions that are deeply needy, while there are fewer family caregiver options than ever.

If family care is your plan — the documentary cites a study that shows only people with 3 or more daughters or daughters in law have a better than 50% chance of not finishing their life in a nursing home or an institution.

Co-residence with Family

Many families have no choice. Parents or elders move in with family members to save money. There are emotional costs to this option that need to be considered as well. It is a huge ask of your caregiver for them to run your life and a second household, or leave their life and home to move in with you for an unknown period of time. I did this for 7 months. I adore my mom and was always very close to my parents.. but this arrangement was still hard. It gets even more complicated if family relations are strained. I have friends who did it for years – at the eventual cost of their previously close relationships with family members. Proceed with caution. 

Find and join support groups. Check with educational and medical institutions nearby. In Southern California, we are lucky to have the USC Family Caregiver Support Center. An excellent resource that will connect you with an individual "navigator." Your Navigator will guide you to help for your specific needs. They also have excellent listening skills and are a compassionate advocate for your care as the caregiver as well: https://www.fcsc.usc.edu/ The Los Angeles Caregiver Resource Center is also part of this organization: https://www.fcsc.usc.edu/

Here are some articles about the crushing costs – on all levels – for senior care:

https://www.washingtonpost.com/business/2023/04/06/seniors-assisted-living-medicaid-eviction/

https://www.washingtonpost.com/parenting/2023/03/22/caregivers-sandwich-generation/

 https://www.washingtonpost.com/business/2023/03/18/senior-care-costs-too-high/

 https://www.washingtonpost.com/wellness/2023/01/05/end-of-life-planning/

https://www.nytimes.com/2023/03/28/magazine/elder-child-care-millennials.html

photo below "Randi and her father Keith..." by Haruka Sakaguchi from NY Times 3.23

This March 23 post on the blog contains the entire 3.18.23 Post article about the costs of care: http://stuartngbooks.blogspot.com/2023/03/caregiving-crushing-costs-and-limited.html

Aging at home with private caregiver help

Everyone wants to age at home, independently, for as long as possible. This is a wonderful dream, but not always a safe or practical reality. Aging at home when the home is not appropriate (stairs etc) can be dangerous. Accidents like falls in bathrooms or on stairways. Injuries in kitchens or yards. These can be life changers that lead to hospitalization and loss of mobility.

Aging at home with private caregivers is the most financially expensive choice. I highly recommend using a free service like “A Place for Mom” to get referrals for licensed caregiver agencies. They can match you with options that fit your budget. Another plus for using “A Place for Mom” is that you will get enrolled in a free email newsletter with lots of tips from others who are caring for family members.

A caregiver agency will handle insurance, employment, and liability issues with having workers in your home. Agencies also screen the caregivers for you and provide professional training for them. It takes time to pick an agency, go through the evaluation process to assess your loved ones needs, and get matched with and “try-out” some candidates. Once you have the right caregivers on a schedule (that you are in charge of creating), there are pros and cons to this situation. If a caregiver can’t make their shift, or needs a scheduled day off, the agency will usually be able to send a replacement. But you will need to spend time orienting the replacement with your loved-one’s needs. Many caregivers like a client that offers long shifts on a steady schedule. The overtime hours help with their income, but this also adds to your expenses. Aging at home with private caregivers can become socially isolating for your loved one. Having your loved one with caregivers means you are their social director, appointment coordinator and always the back-up. This can be back-up for problems with your loved one, or their residence. That can get exhausting. It wasn’t until we transitioned Mom to assisted living that I realized the impact of this. For over a year, my radar was up every night for a possible call from Mom’s overnight caregiver. I rarely got a nightshift call. But once Mom was in assisted living, I started sleeping much better. At assisted living, there is always an experienced team around her to help her… or deal with any problems with her room. If I got a call from assisted living, it was just to inform me and let me lend support. It wasn’t a call to rush over and solve a problem.

Assisted Living Communities

Tour assisted living communities with your loved one. Get acquainted with options and staff prior to need of these services. Assisted living provides medication management, social enrichment, help with ADLs (activities of daily living) and room and board in a home-like setting. "Assisted living" implies some independence on the part of the resident. This includes being able to use a call button. (This safety tool is good to get early and use at home so it becomes a healthy habit.) The assisted living admissions process will include an assessment of your loved one's care level needs. 

Assisted living will meet your loved ones needs, but maybe on a slightly different schedule than you're used to. Be flexible. Learn the routines at the community and help your family member adapt. Good communication between you and the staff helps everyone. Your loved one will be issued a call button to summon care team help when they need assistance. Residents who are more independent and don't need call button help will still be checked-in on periodically. The goal is to strike a safe balance between independence and support. Do not expect assisted living to replicate the one-on-one care of your loved one at home with you… or them at their house with an in-home caregiver. Some assisted living establishments will allow you to bring in a licensed private caregiver to give your loved one more one-on-one support -- but that expense will be on you. 

Assisted living gives loved ones a safe, supportive environment. The 24/7 care from a staff of professionals gives family caregivers peace of mind. But it doesn't relieve the responsibilty of checking in frequently. In-person visits can rekindle family connections, which may be strained after being in caregiving roles. Visit as often as you can. Being there in person is the best way to assess how your loved one is adapting, and how the facility and staff are performing. Common struggles for assisted living communities include chronic understaffing and delays in response time for call button assistance. You can best assess how these issues are handled when you visit frequently. Once your loved one is a resident, you will still need advocate for them. This includes monitoring basics in your loved one's room, such as making sure the plumbing, heating and AC are in good working order.

Find a community with a vibe that resonates with you as well as your loved one. Caregiving is a calling. Cherish the good people who take care of others as a career. Benefits for your loved one at assisted living include more social contact with peers and younger adults, activities options, and hands-on personal care that can advance as needs change. Some assisted living establishments can provide two week or 30 day stays as “respite care” to give family caregivers a break. (However, many assisted living rooms come unfurnished, so factor in that added expense). Memory care units are part of many assisted living communities. This makes that transition easier for residents if that need arises. Most assisted living places do not offer skilled nursing care like a nursing home setting. Tour a range of elder care establishments to learn about these care levels and options.

Care homes, with only a handful of residents and a small team of caregivers in a private residence setting, can be a good option. Especially if the situation involves long-term care along with limited mobility. Many families turn to churches and community senior centers to get in touch with resources, activities, and volunteer or part time caregivers/companions. Unlicensed care may seem cost effective, but be mindful of the associated risks.

Long-term care insurance is a common way many families afford the prohibitive expenses of in-home caregivers and/or assisted living. However, there is always a big risk. You may pay the high premiums for years only to find out when you need the policy coverage it may not be accepted at the facility/agency you want.

 Caring for a senior with dementia... or disabilities... or a chronic or terminal condition (including Alzheimer’s) are categories I won’t be covering here.

Finding elder care that fits, and is affordable, is hard. It can mean making tough decisions. The options are all costly. They can bankrupt families.

Caregiving for an elderly parent as an only child has benefits and disadvantages. If you are the only person who knows all the details for caring for your family member, you must make sure there is either a back-up person, or you and your family member must consider their need to enter assisted living earlier. You are not immune to having an accident or illness that could put your loved ones care in jeopardy. Having your elderly friend/family member in a facility can be a safer option for them and you if you are their only advocate. Even in sibling situations, it’s usually one person tasked with being the “burden bearer” – a role that leads to burnout, resentment, and other complications for any caregiver. ("Burden bearer" is a term from a 1966 study of families struggling with elder care. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1545-5300.1966.00076.x. I first read about it in this 3.23 NY Times article https://www.nytimes.com/2023/03/28/magazine/elder-child-care-millennials.html)

Caregiving for anyone when you have a chronic condition yourself adds more unstable variables to the equation. My Dad and I planned for various scenarios of how I would care for my parents in their final years  – but when the reality happened, I was quickly humbled by the one variable we never factored in – my own limitations. When family caregivers themselves are seniors 60+ and caring for elders in their 80s and 90s, the entire situation can seem like a sitcom premise. Because as Mom likes do say: "You have to laugh or else you'd cry and who wants to cry?" Or as iconic actress Bette Davis put it:


Before you agree to become a full-time caregiver….

Everyone must have their final documents in place -- a will or trust,  an Advanced Healthcare Directive. No exceptions. Never agree to become a caregiver for someone who hasn’t gotten their affairs in order. Even with all the paperwork ducks in a row, all the re-organization of accounts, bills, legal documents, and even mundane things like newspaper/magazine subscriptions, will devour your time. And drain cash reserves.

My two mottos learned the hard way from experience:

Get the right tool for the job.Whoever dies first, wins.

Encourage all family members to have most household bills set on auto pay via a regular checking account. Get signed up to have access to those accounts.  If your family has the resources to have 2-3 mos of cash to cover monthly expenses on hand, that will relieve you of a lot of stress if the “financial manager” parent passes suddenly and you are left to juggle bills, taxes etc for a parent who hasn’t dealt with these for decades. When someone passes, a lot of important information can be lost suddenly too. They don’t have to deal with the fallout of that. But their survivors will. Plan now to avoid pain later.

Know your parent/family member’s medical history, medications they are on, and try to go to a routine doctor appointment with them. Going on a routine appointment will give you a chance to meet their regular doctor, and familiarize you with location of the clinic etc. Elderly people go to the doctor a lot. There are age-related issues that come up even for those without pre-existing conditions. You will also need to be proactive about getting these routine health issues addressed for your senior: Foot care. Skin care. Hydration. Vision issues. Hearing issues/aids. Physical Therapy to keep major muscle groups strong for maintain balance and mobility.

Assess your elderly parent/family members mobility. Plan ahead for special equipment that will be needed – for their safety, and for yours. Evaluate the home for fall hazards. Avoid preventable accidents. Remove safety risks.

Adapt or replace furnishings. Older people need sturdy chairs with arms. Bathrooms need many safety upgrades.

Shop early and often for items that will protect your senior’s independence. They will need these items eventually. Better to try them out with plenty of time to find what works BEFORE the urgent need arises. Practice using them “for if we need this” scenarios. It will make everyone more comfortable, confident, and safe.

Section 3 -- Recommended Products:

Mobility Aids –

Mobility is independence. Loss of mobility means more hands-on caregiving. Fight hard to maintain and protect mobility. Embrace simple changes, like mobility aids, appropriate shoes, physical therapy exercises to keep muscles strong.

UPDATE 9.17.23 -- Here are two You Tube videos with excellent tips on how to safely use a walker! How to walk with a walker the right way...



How to safely use a rollator (4-wheeled) walker


Walkers

Combo/convertible walker-transport chair.

I got this GoPlus model.



https://goplusus.com/products/2-in-1-folding-rollator-walker-4-wheel-medical-rolling-walker

https://www.amazon.com/dp/B09LRYSVKR?psc=1&ref=ppx_yo2ov_dt_b_product_details

 A transport chair is not a wheelchair. A transport chair has smaller wheels. It can’t be self-propelled. But a transport chair is essential safety equipment if you’re caregiving for someone who is elderly/and or has mobility issues. If you need to move them quickly and safely – you must have a transport chair available.

Get a combo/convertible walker-transport chair. This is best for trips to appointments and longer walks. The person can use as a walker, but if they get tired, it converts easily to a transport chair.

Top tip for transport chairs/wheelchairs: Back the person into elevators and over bumps and obstacles in pathways. Pushing the person forward into these hazards can “catch” the chair wheels and tip the elderly person forward and out of the chair! These chairs do NOT have seatbelts.

I looked at several brands and styles of combo walker-transport chairs.. Here’s why I picked the GoPlus one and how it delivers in these areas:

Pros --

It has the greatest range of adjustable height options for the handle bars used in both the walker and transport chair modes. Trying to match the right height for these bars has been a struggle on other walkers. This feature has been a game changer. It saves the back of the caregiver pushing when its in transport chair mode. It improves the posture and balance of person using it in walker mode, helping reduce that classic “hunched over the walker” posture.

The foot rests are pedal-shaped foot rests and that the foot rests can be folded away.

There is a foot lever in the back to help whoever is pushing it in transport chair mode get the wheels over small bumps/floor surface transitions. It takes some practice.

If you’re trying to get someone with limited mobility to appointment, or across parking lots/uneven terrain, or an emergency exit -- a mobility chair is a must.

Having one tool that does 2 jobs saves storage space.

This unit collapses down for easy storage and is pretty lightweight.

Cons –

The seat is an odd shape and there is NO padding. There’s no storage under the seat and storage/pouch situation with this unit is limited and awkward.

There is built-in padding for the arm rests, and that helps, but we did mail order some wrap around/Velcro arm rest pads and they are a big help

It’s larger and more awkward to use as a walker inside the home. But the fact that the handle heights are adjustable more than compensates.

The foot rests fold back fine, but flop around. I ended up buying some Velcro strips which we use to secure the foot rests. It’s an extra step.. and an extra item to make sure we have when we use this in transport chair mode. It’s an area I would check out well if I got to see some of these in person vs. buying online.


Wheelchair seat cushion https://www.amazon.com/Essential-Medical-Supply-Covered-Wheelchair/dp/B007X2EXIS/ref=

Wheelchair Armrest pads (this link has assorted colors) https://www.vivehealth.com/products/wheelchair-armrests

 


 

Traditional 4-wheeled walker (Nova Zoom)

https://novajoy.com/products?categoryId=368

 


Pros -- These are nimble, smaller, and come with a padded seat and generous storage. Wheeled walkers excel at turning and pivoting, and they also have brakes for stability. They are better than the old-school 2 wheeled walkers.

This walker gives the most support for when Mom has knee pain.

We went to a local home healthcare aids store to get Mom a 4-wheeled walker. They fit her for this model. (However, it’s turned out to be just a bit too short for her, even at the highest handle height setting.)

Cons – Only 3 settings for handle height. Not having the handles at the appropriate height contributes to that “hunched over the walker” posture you often see. 

Shop around and find a walker that has an appropriate handle height. Walkers work best in walker mode. You can use it to push someone in a pinch, but they will be facing backwards and they must be able to suspend their feet to keep out of your way and not be dragging their feet on the ground. Of course, a walker is not designed to be a transport chair. And this limitation is obvious if you ever try to use it as one.

Standing/Upright Walker –https://www.vivehealth.com/products/upright-walker

 


I got Mom one of these when we realized her 4-wheeled walker was too short for her. The upright walker has a seat (not padded), encourages better posture, and provides better eye contact with other pedestrians. It may be a good option for more active, taller seniors. I wouldn’t recommend one for most elderly people.

It’s cumbersome to move and store. It can collapse and be put in a car, but would take up a lot of space and be hard to get in and out.

It’s hard to find padding for the arm rests that fit properly. The arm rests and hard plastic and do need extra padding that’s not provided or built in.

Because Mom was in a condo, and got most of her exercise walking the hallway of the condo building, this worked out okay for us for several months. But we never used it on sidewalks or parking lots… where I’m not sure how safe/stable it would be on those sorts of surfaces.

3-wheeled walker (Nova Traveler) https://novajoy.com/products?categoryId=187&productId=382

 


Once Mom transitioned into assisted living, this walker became her favorite. I bought this one specifically because the handles can be set higher than her 4 wheel walker. She likes that this one is easy to maneuver around her large bathroom and studio room, as well as the common areas. She is close to any seating options in these situations, so the lack of a seat on the walker isn’t a problem.

Pros --Nimble to use and maneuver. Has a generous storage pouch built it. There is also a detachable wire basket and tray. Adjustable handle height.



Cons – Not as much stability as the 4 wheeled walker. No seat built in.

Footed “quad” Cane https://www.vivehealth.com/products/carbon-fiber-quad-cane

A cane with four feet is always ready to be used and not falling to the ground etc. This one is lightweight, but also very strong.

Foot safety and care --

Velcro shoes & open toed sandals

Shoes with laces are a tripping hazard. Round those up and donate them. Poorly fitting shoes can contribute to foot pain, infections, etc. That leads to mobility loss. Look for shoes that protect feet and prevent slipping. Old bones are fragile. I learned from Mom's podiatrist that many elderly folks fracture their toes by bumping them while wearing footwear that lacks support and protection. Foot or toe pain should be checked out by a doctor ASAP. 

Replace old shoes with Velcro closure footwear. Mom preferred a style with a single flap vs multiple tabs. Look for shoes with a sturdy sole that supports the foot.

Yibobay Diabetic Shoes https://www.amazon.com/Yibobay-Diabetic-Adjustable-Breathable-Lightweight/dp/B096KVHJLT/ref=

I had to mail order these in several sizes to find the right fit, but it was worth it. Mom loves them.



 Since Mom had a toe injury (ingrown nail) that took months to correct, she needed shoes indoors that gave her stability but also were open toed.

Silverts Sandals –  open toed with Velcro. These are a sturdy option for times when toe pain may need an open-toed shoe. https://www.silverts.com/womens-easy-closure-sandal-for-indoors-outdoors



 These Memory Foam Sandals from the “Collections Etc” catalog are inexpensive, but lack support. They are suitable as slippers, but not for long walks. https://www.collectionsetc.com/products/ultra-lightweight-adjustable-memory-foam-sandals/?color=BLCK&size=XSA&utm_source=google&utm

 


Keep feet clean and dry. Make sure they are moisturized to prevent cracks in skin and nails that can invite infections. Be sure a doctor looks at the elderly persons feet at least once a year. Medicare covers routine podiatrist visits. It’s worth getting your elderly family members to a podiatrist on a regular schedule to handle things like toe nail trims. This basic personal care can become a breeding ground for infections if neglected or relegated to self-care or non-medical services (ie salons). Both of my parents had foot issues that needed attention but their primary care doctor never had them take off their socks – even at annual physical exams! Unacceptable.

Ears need attention too. Age-related hearing issues are common. Be sure your senior has a hearing evaluation by an audiologist. And make sure their primary care doctor examines inside their ears at least once a year. Your loved one may need routine ear irrigation. Regular dental cleanings are also essential. Many older people don't have all their own teeth. You need to know if your loved one has any dentures or partials. Be sure they fit well and are cleaned properly. Check with their dentist. Your senior may need new eyeglasses too. Get a vision exam scheduled as soon as you take over their care. Finding problems in any of these areas early can make all the difference.

Because of my diabetes, I’m very pro-active about foot care. I will always suspect my dad could have lived longer if his non-healing foot wound got earlier attention. Instead, he slapped a band aid on it -- for nearly 2 years! Dad was so healthy otherwise, and he presented so well clinically, his doctor never looked at his bare feet. By the time he showed his non-healing wound to the doctor, it had progressed to skin cancer. That required surgery. And oncologists. I learned about all this too late. Please take these lessons to heart. 

Change socks daily. Be sure they are not binding. Mom loved these “Hugh Ugoli Diabetic ankle socks, seamless, stretchy” socks from Amazon 



Try out different compression socks. There are better ones available now that aren’t the vice grip socks of years ago. Most older people have legs and ankles that swell. Compression socks… and/or elevating their legs so they are higher than their heart for a period of time during the day or at night.. can help reduce swelling.

Viasox Diabetic Socks –these are super stretchy socks that are easy to get on and off. Available in knee length, ankle and compression sock options. There are lots of fun prints as well as solids. https://viasox.com/

Electric foot warmer pad –

Cold extremities are a common problem with the elderly. Mom often has cold feet at the end of the day, even on warm days. The right tool for this job turned out to be a double-sided electric foot warmer. (Any electric heating pad/blanket needs to be used with supervision as elderly people have thin skin that can be damaged.) Mom’s favorite foot warmer pad worked better than traditional heating pad as it has a zipper. You can make it into a pouch to slip both feet into. You can also unzip it and use it to heat a larger area like backs, or shoulders. It took some trial and error to find this item on Amazon “Accelery Double-Sided Heated Foot Warmer” with a tag that reads: “OnKey Electric Technology Heating Pad Model # FT-1616,” now listed as “unavailable” 

Here’s a similar one, but this lacks the zipper and timer on the control:

https://www.walmart.com/ip/Electric-Foot-Warmer-Heating-Pad-with-3-Settings-Auto-Shut-Off-and-Detachable-Extra-Long-Cord-Soft-Plush-with-Fuzzy-Interior-by-Bluestone/711560582

Room Safety

Landline phone for hearing impaired

A 911 call from a landline is the fastest way to get help to the right location. Check with local agencies about qualifying for a free or discounted landline phone for the hearing impaired. Hearing/vision loss and other age-related challenges like arthritis can make it a struggle to use even the most basic cell phones. Be confident your loved ones can make and receive phone calls.


Call Button (CallToU transmitter and receiver) https://www.amazon.com/CallToU-Caregiver-Transmitters-Receivers-Attention/dp/B077SYPD5K

One of the best “tips from the trenches” we got from one of mom’s caregivers was to get her a call button. Getting a senior accustomed to using a call button keeps everyone safe. It’s an essential skill for assisted living. Knowing how to use a call button will also help your loved one get help if they end up in the hospital. For the hours you can't be with them, it will be up to them to use a call button to get help from a nurse.

Grabber (The one I like best I got from Diaso – this link has photos and a review) https://www.thestuffsreview.com/2022/07/daiso-all-purpose-grabber.html.

Back injuries or hip/knee pain can prohibit bending over. A “grabber” is a safer way to retrieve objects that fall to the floor.

Motion detector Night Lights

Light in hallways can prevent trip and fall hazards. Especially for nighttime trips to the bathroom. Battery operated “tap lights” can also be handy. Many options of both are online or at hardware and home improvement stores.

Bathroom safety


Shower chair https://www.vivehealth.com/products/shower-chair

Baths and showers are the #1 place where life-changing falls happen. Take shower/bathing safety seriously.

I mailed order this one for the handles, height adjustment choices, and drainage holes in the seat. It’s good, but we still ended up adding a padded shower floor pad for her to sit on while she uses this as the seat is a tiny bit slippery.

Talk with your elder’s doctor/dermatologist about ways to keep fragile older skin well moisturized. Slathering lotion on damp skin right after showering is a good practice for anyone to prevent dry skin issues. Use gentle body wash (Aveeno unscented etc). Bar soap, even Dove, can be drying.

Grab bars

These are essential and need to be installed/attached to studs in the walls. I didn’t have to buy any of these are they were already at Mom’s condo.

Toilet seat support

Handles on the sides of the toilet are safer than a single grab bar on the wall. Finding the right handles was another trial and error discovery. We found this worked best because it used the toilet seat itself (not the floor) as the base for the handles. This product was more stable than other seat-based options we tried. She didn’t like options that raised her higher on the toilet seat as it made her feet dangle. This option lets her use the toilet seat at the traditional height, but gives her support with sturdy handles.



https://www.homedepot.com/p/MOEN-Home-Care-23-25-in-Toilet-Safety-Bar-in-Glacier-DN7015/203933039?source=

If there is back or knee pain involved that can make it difficult to lower down to the traditional toilet seat. There are a range of risers and cushions available. But here’s a twist – I think most of them are designed by and for men. Women wipe in front. The lack of a front opening on many risers and cushions makes this basic self-care hygiene challenging for women. Find options with a front opening when shopping for a woman.

Toilet seat Cushion https://www.vivehealth.com/products/toilet-seat-cushion

Toilet Seat Riser with handles https://www.homedepot.com/p/Glacier-Bay-E-Z-Lock-Raised-Toilet-Seat-With-Adjustable-Armrests-5-in-FGB303GB-THD/312272463?source=

Toileting issues/Home as a healthcare setting

No one wants to think about needing help with personal hygiene care.

Caregivers have to think about it. They may be that help.

If you can’t imagine taking on these tasks – plan ahead now.

Do you know how to find in-home help for these hands-on jobs?

Can you afford this?? – the cost of caregivers that come to your home is mind-blowingly expensive.

Will you and your loved one feel that needing help with toileting is a deciding factor for transitioning to assisted living care? Helping another adult in the shower or at the toilet can put you at risk for injuries. Discuss this with your seniors now. 

If underwear “accidents” are mild/infrequent, your life will be easier if you have already stocked some essential supplies. See a great coupon for Depends or similar products? Use it. Get your elder to try out some different brands and sizes. They will see these products are comfortable, effective, and discreet. It can be good "practice" to wear them overnight in bed, or out for an errand. Sometimes medical tests or health issues will prompt the need for these items on a short-term basis. Use that opportunity.

Wearing disposable underwear and changing them frequently helps prevent UTIs. Fragile skin in personal areas is a high-risk zone for infections. These can be hard to detect until they become severe.

Be sure you have lots of disposable gloves in a range of sizes (a Medium in one brand may need a Large in others). Baby wipes are essential! They serve multiple purposes. Carry them in a ziplock bag to appointments with your elder. The Costco Kirkland ones are always in my car and purse. Disinfecting wipes and/or a spray bottle with 70% isopropyl alcohol are essential supplies for every room when there is healthcare involved. 

Buy waterproof liner covers for mattresses –online or at Target –and start using them now. Do yourself a favor. Spending $20 now may save you from dealing with disposing of a soiled mattress later. I like these “Allerease Ultimate Mattress Protectors” because they block everything: https://www.target.com/p/ultimate-mattress-protector-allerease/-/A-17273320

The Allerese “Perfect Protection” line is also good, and more widely available

https://www.target.com/p/full-perfect-protection-waterproof-mattress-protector-allerease/-/A-78376623?ref=

Your family member may struggle with the reality home is now a healthcare setting. Even if it’s friends and family helping out… it’s more people using restrooms, common areas, and the kitchen. Everyone needs to be practicing good healthcare setting habits -- washing hands, disinfecting surfaces regularly etc. Older people have compromised immune systems. Protect them from common colds/flu and infections. Diligent heathcare setting practices by caregivers help avoid costly and health-compromising hosptial stays for seniors. 

Another struggle your loved ones may have is accepting they need help with caring for their physical body, in spite of how indelicate and embarrassing that may be. Be compassionate. Let them know you understand. They are forever 30 in heart and spirit. But now they have a "vintage" body that needs specialized support and maintenance. You are here to help. Just like they helped with your body when it was very young and needed special care. When adult children are caring for elderly parents, we are all past our "best by" dates. But here we are...making the best of it. 

UPDATE 12.6.23 -- For female elderly that have lost mobility and/or suffer from needing to be moved out of bed to urinate overnight -- consider getting a "PureWick" system. Once mobility is lost, getting lifted on and off a chair commode becomes a burden for everyone. This system is the home version of what's used in hospitals. It isn't cheap -- but the wear and tear they save on caregivers -- and on moving fragile patients around, especially when their skin gets so thin with age and is easily torn or bruised -- makes this system worth the investment:

 https://www.purewickathome.com/caregivers.html


General safety and comfort

Transfer belts & harness 

Avoid injury to elderly person and to caregivers. Try out some transfer belt/harness options before you need them. If you have an emergency and need to move someone who is suddenly not able to move all or part of their body – you will be glad you were prepared. UPDATE 12.6.23: Try these out early -- especially for size! Most of these items are designed by and for men. You may need to do some tailoring for a secure fit for smaller framed/female seniors. Here are links for these items I found most helpful--

Transfer blanket https://www.vivehealth.com/collections/transfer-belts-aids/products/patient-transfer-sheet-handles


Transfer belt with handles https://www.vivehealth.com/collections/transfer-belts-aids/products/gait-transfer-belt




Here are more options: https://www.vivehealth.com/blogs/resources/patient-transfer-device-aids

Adaptive Clothing

As mobility becomes more limited, simple tasks like dressing can get complicated. Standing on one leg can become impossible due weak knees or hips. Being able to dress yourself safely helps maintain independence without risking balance/falls etc.

These websites feature clothing designed for ease of dressing and undressing with limited mobility.

https://www.buckandbuck.com/

https://www.silverts.com/

https://gerifashions.com/

Dry Erase Boards, Care Guide Binder, Log books

These items became lifesavers. When mom was aging at home with in-home caregivers, that made me her one-person-assisted-living-coordinator: in charge of communication between her caregivers as well as scheduling that care with the caregiver agency. Having systems and standards in place helped everyone. 

Dry Erase board message centers

A dry erase board with magnets on the back is easy to attach to the fridge. This becomes a great place to update meal lists, as well as a central place to list items that need re-supply from the drug or grocery store.

I also made a “housekeeping” dry erase board with list of housekeeping chores. Caregivers who did some of those chores on their shift could write it on the housekeeping board. It was also a place to write down disinfecting jobs that needed to be done with each shift.

Care Guide binder

A large 3-ring binder marked “Care Guide”. This is where I keep detailed instructions on all the care needed for Day Shift, Night Shift, 12-hour shifts for 24 hour care days, PT exercises done at home, Foot care, Meal prep routines; Housekeeping supplement; “bullet points” of FAQ, a photocopy of current Covid vaccination card, and copy of the Advanced Healthcare Directive. You’ll also need a complete list of all medications (with doses and times for delivery); any background medical information (chronic conditions; allergies; past surgeries or hospitalizations); as well as a list of doctors and the pharmacy used.

The Care Guide Binder is a complete and portable record of everything that visiting caregivers… or EMT.. would need in case the primary family contact wasn’t available. Dates on each of the entries there helped everyone know how current the info is, and if there is a newer date on any entry since they last reviewed it.

Log books –

I kept two log books. One had water intake, OTC and Rx doses. This also is where the caregivers listed any activities like walking or social visits.

The other log book had appointments during the day, when home PT was done, when Foot care happened, and notes from the overnight caregivers.

(art by Kate Allan, aka The Latest Kate  https://www.thelatestkate.art/ )


Caregiving is an endurance test. Take care of yourself. Be prepared. Replenish your reserves of courage, patience and grace.

UPDATE 4.20.23

Bonus item to thank you for reading this far! Here's a book I discovered years before I needed it. I re-read it recently, and it's even funnier, and more poignant. This book was put in my hands by one of  my favorite indie booksellers. Yes, Chast's take on the process is a bit dark, but humor always helps. On re-reading it from the perspective of someone who has now been on a journey like this... Chast's was a lot tougher. But she shares insights that are helpful.. and talks about the costs involved across the board.

 https://en.wikipedia.org/wiki/Can%27t_We_Talk_About_Something_More_Pleasant%3F

Artist Roz Chast is well known for her New Yorker cartoons like these panels...





This link previews some pages from the book...

https://projects.newyorker.com/story/chast-parents/

I also wrote about the book in this post from 2019.

 https://stuartngbooks.blogspot.com/2019/06/7-days-of-books-i-have-loved-day-7.html

Here are some of my favorite pages from the book...






Top Tips -- Hospice and End of Life Care (8.14.24)

  Updated 2.21.25

The painting is "Golden Light" by Julia Rogers, 2021.

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


Japan is often cited as an example of how to handle elder care better. But their system is under a strain as well..