UPDATES (11.28.22). This post continues to evolve.. and expand. I've added a TLDR section in blue after the Into. Go there for the bullet points and all the links about equipment I've purchased.
INTRO: Why so few posts on the blog this year?? Covid of course. But also life issues. Life happens. Good things. And things to learn from. (Painting "Golden Light" 2021 by Julia Rogers)
Starting two years ago, I was losing vision in my left eye. After many procedures and surgeries, I'm back to seeing perfectly. A long story for another day. (And special thanks to all the SNB patrons. Your choice to shop small at SNB helps us be able to offer Health Insurance for staff as well as our family, that covers many of my extensive diabetes needs. When you support small business, you do more than keep the lights on, you keep lives on).
Celebrate all victories.
Art by Kate Allan (The Latest Kate https://www.thelatestkate.art/)
Starting Nov 2021, I became primary caregiver for my wonderful, elderly mom when my beloved Dad passed suddenly. I thought I was prepared for this job. But it's been a lot. This post is a case study. Top tips on what I've learned. A place to share links and resources. A place I'll update as the story goes on. The info here may also be useful for anyone faced with recovery from accidents or injuries where mobility issues may arise.
If you are charged with becoming a primary caregiver, here are three wishes for you. And a warning.
First: the warning. You will never have enough resources. Even if you had unlimited time, experience, and money? It's not enough. This job grinds down people and assets. You can’t help anyone if you are exhausted.
Focus instead on these three wishes: Courage; Patience; and Grace. These wishes will grant you self-preservation. Replenish these reservoirs. With courage, patience, and grace, you can be the loving caregiver you want to be, with whatever resources you may have.
Find your reservoir refill stations. Make time to use them. I use long walks; time with friends; keeping up with my longtime yoga practice (thank goodness for online/streaming classes); and to be honest -- the discipline and self-care required to manage my Type 1 diabetes. I'm especially grateful for how much Stuart has stepped up to help me. Caregiving can overwhelm marriages and relationships.
Caregiving in guidebooks covers generalities. Caregiving in action is deeply emotional and utterly unique. You may find great resources like websites, support groups, or friends/family members who have been on a similar path. However, becoming a caregiver is a steep learning curve for a particular skill set. The responsibilities are relentless (even if you can delegate some of them). You will want this job to end, and it will, but all the exit options are awful.
Be prepared. The sooner you have the difficult conversations, the easier for everyone. Talk with your loved ones 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.
Everyone wants to age at home, independently, for as long as possible. This is a wonderful goal, but not always a safe or practical option. Aging at home when the home is not appropriate (stairs etc) can be risky. Aging with in-home caregiver help is wicked expensive. Long-term care insurance can help (more on that later). Some families share caregiver duties, or find help through church or community connections. I highly recommend finding caregivers through an agency. There are liability, insurance, employee issues etc with longterm caregivers in your home. Going through an agency takes that burden off you, and gives you a 24/7 supply of qualified backup if your regular caregivers aren't available.
In-home care with family is the obvious default for many. This may seem cost effective. But it's not just a monetary drain. It is a huge ask of your family member caregiver: they must run your life and a second household from afar; or leave their life to move in with you; or bring you into their home. Often for an unknown period of time.
Caregiving brings role reversals between parents and children. This can fray the closest family ties. It can shatter fragile ones. Mom and I adore each other, and all of this is still hard. You will be tested. Be patient with yourself and your loved ones. My Mom is cheerful and grateful. In spite of painful changes in her life. Her motto is "If you didn't laugh, you'd have to cry." She chooses to be brave. Everyone sees her "doing well," but they don't see the effort she puts into staying positive. I am very lucky.
Caregiving for an elderly parent as an only child has benefits and disadvantages. Even in larger families where jobs can be delegated, it's usually one child who carries most of the caregiving duties. If you are the person who knows the care plan details, you must train a back-up person. No back-up available? You and your parent(s) must consider their need to enter assisted living. Caregivers can get sick or injured too. What happens if the safety net is just one person?
Having your elderly family member/friend in a retirement community can be a safer option for them and for you. You can be the best advocate for them when you aren't the one-man retirement home. An assisted living setting will meet their needs. On a dependable schedule. With predictable costs. This frees you to focus on their wants and their quality of care. No option is perfect. None of us get to pick our sunset. Find the best view possible.
The example I plan to follow is my aunt. She moved into assisted living way sooner than anyone thought she needed to. But she found a place that worked for her, got on the waiting list, and took the spot when it opened up. Being there "early" allowed her to build a community. She got to know the staff and residents, and enjoy the activities, all while she was her most fit and active. Years later, those releationships and that routine serves her well now. Not to mention the peace of mind for her kids. She is in a safe and appropriate place for her to stay independent as long as possible.
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. The one variable we never factored in was my own limitations.
This case study blog post on caregiving is a work in progress. I will update it as time goes on. There are important names and contacts I'm holding back now for everyone's privacy. I try to thank them every day, and give feedback to show my appreciation for all their help.
Here's the TLDR list of bullet points and product links. Scroll down the post for details on all of these, including my reviews of the pro/cons of the products:
Ducks in a row, or you're all on your own...
Long-term care costs...https://www.nerdwallet.com/article/insurance/long-term-care-insurance https://www.washingtonpost.com/business/2022/09/25/seniors-home-health-care/
Before you start caregiving...USC Family Caregiver Support Center: https://www.fcsc.usc.edu/
Call Button. https://www.calltou.com/collections/call-button/products/best-caregiver-pager-2019
Velcro shoes & open toed sandals https://www.amazon.com/Yibobay-Diabetic-Adjustable-Breathable-Lightweight/dp/B096KVHJLT/ref=
Footed Quad Cane https://www.vivehealth.com/products/carbon-fiber-quad-cane
Combo walker-transport chair https://goplusus.com/products/goplus-2-in-1-folding-rollator-walker-4-wheel-medical-walker-with-seat?variant=
Wheel chair armrest pads link: https://www.amazon.com/dp/B07H12697G?psc=1&ref=ppx_yo2ov_dt_b_product_details
Traditional 4-wheeled rolling walker https://www.novajoy.com/our-products/rolling-walkers/Standing/Upright walker https://www.vivehealth.com/products/upright-walker
More equipment recommendations bullet points, most with links: Electric foot warmer pad; Shower Chair; Grab bars; Toilet Seat Handles; Transfer Belts and Harness; Adaptive Clothing; Toileting Issues; Home Is Now a Healthcare Setting; Dry Erase Board and Care Guide Binder; Log Books.
Update 11.28.22 -- Links on resources for living alone, and paying for in-home care:
Continue on for the details on my top tips from my first year as a primary caregiver.
Ducks in a row, or you're all on your own...
Everyone must have some sort of "estate plan" -- will, trust, final documents, Advanced Healthcare Directive, etc. No exceptions. Never agree to become a caregiver for someone who hasn’t gotten their affairs in order. If there are pets involved -- who will take over their care and funds for it must be in writing.
Long-term care costs...
Long-term care insurance has pros and cons. It's expensive to get. You may not end up ever needing it. If you/your family member does use it.. the fine print in the policy may limit your choices of facilities and/or there may be much more out of pocket expense than you anticipate. If you or your elderly family member wants to age at home, getting long-term care insurance may be especially beneficial. In-home caregiver agencies work with long-term care insurance policies and clients --- it's one of the few ways to make this extremely expensive option affordable. All these options require planning ahead.. paying ahead... and being flexible about what's possible to get when you need to use the policy.
This link from early 2022 covers some basics about Long-term care, and has charts w/ comparative costs: https://www.nerdwallet.com/article/insurance/long-term-care-insurance
This 9.25.22 Washington Post article also has some insights into the challenges of finding and paying for in-home care. Here's an excerpt: "... the home-care workforce nationally numbers around 2.6 million. About 1 million more home-care workers will be needed by 2030 as the baby-boom generation finishes aging into retirement — what demographers call the “Silver Tsunami.” Policymakers have long recognized that America’s patchwork system of home care is insufficient, a source of anxiety for families across the nation. More than 90 percent of the estimated 5 million who received care from home health agencies in the United States in 2018 required help with bathing, dressing, using the toilet, walking and getting in and out of bed, according to the Centers for Disease Control’s National Center for Health Statistics. More than two-thirds needed help eating. "
These are my mottos about caregiving, learned the hard way from experience this year:
Get the right tool for the job.
Whoever dies first, wins.
Before you start caregiving..
Encourage your seniors 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, you may be left to juggle bills, taxes etc for a parent who hasn’t dealt with these for decades. When someone passes suddenly, a lot of important information can be lost 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, etc. Before you start caregiving duties -- try to go to routine doctor appointments 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 awareness. Vision issues. Hearing issues/aids. An in-person Physical Therapy program will keep major muscle groups strong to maintain balance and mobility.
Assess your elderly parent/family member's 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 as “for if we need this” scenarios. It will make everyone more comfortable, confident, and safe.
When your turn comes to be a caregiver ... assess if care is best done at your home by you.. at your family member's home by you..at their home with assistance from caregivers (yourself/family/friends/professional caregivers)...or via transition to a retirement community/assisted living.
Living independently at home means being able to be left alone for periods of time. You may see your parent(s) through transitions like needing to wear "life alert" type call buttons around their home and when they are out for errands. Or even the challenges when they can't drive anymore. Be observant! You may be surprised to realize that your elderly family member needs someone on "standby-assist" at all times. Watch to see if they need help to answer the phone, prep meals, answer the door, pay bills and do light housekeeping. All sorts of activities of daily living (ADLs) we take for granted come with challenges as we age.
When I started caregiving for my Mom, I quickly ended up living with her full time. She was mobile, alert, and active.. but it was soon obvious how much Dad had been doing for her. They may not have noticed, but the fact remained: she couldn't be left alone. Ever. This meant I had to find a caregiver agency. It's a long process to just make that selection.. not to mention the time to schedule caregivers they provide, and make sure the situation is a good fit for everyone. There is huge demand and short supply for these services. And Covid era restrictions added additional requirements... I needed caregivers who were (like me and mom) fully onboard w/ Covid protocols, being vaccinated and boosted etc... much of the early interview process was conducted via Zoom, etc. We started on a schedule of a dayshift caregiver coming a few days a week. I had to write up shift schedules, and Care Guides for day shift, night shift, medications and exercises, etc. etc. I put these Guides in a binder, so there was one place for everyone to confirm instructions and record daily info. After 7 mos of me being there every night, we added overnight care to mom's schedule. This allowed me (finally) to resume sleeping in my own bed.. and made sure someone was awake and with her when she got up during the night -- a very high fall risk time for seniors. A fall will be life-changing for your elderly family member. Do everything possible to prevent falls.
At present -- I'm at mom's twice a day. I cook or prep all her hot meals (I'm there for breakfast and supper); I pay all her bills; I run all her errands and take her to all her appointments; I help her with her physical therapy exercises at home; I do her daily foot care; I help her with her email correspondence. I get two mornings off a week, when we extend the caregiver day shift.
Aging increases social isolation for most people. Except for a few condo neighbors making an effort, Mom's social life evaporated without Dad around. I've learned this isn't uncommon -- but it also added "social director" to my duties. She is happy when neighbors stop by, but Covid has limited social visits for everyone, and she can't call up friends on her own. Getting her out and about is complicated. Hearing and vision loss can also make seniors more withdrawn.
I encourage Mom's friends to send her snail mail greeting cards. Blank ones where they add a message. Holiday ones. Getting fun mail is a bright spot in anyone's day -- but especially when causual contact is limited. Mom's social circle now is mostly her daily caregivers, and me. I 'm very fortunate to have so much agency caregiver support -- but I'm also the only family member mom has to handle running every detail of her life.
Being a boots-on-the-ground caregiver is a daily grind. It's a role most of us don't experience until we're in the thick of it. My heart goes out to families handed even harder situations than mine... and for years. If you have to do caregiving.. reach out for help via healthcare providers... friends and family who have been caregivers... community resources. If you are in the Southern California area, you may be able to get assistance through this excellent resource, the USC Family Caregiver Support Center: https://www.fcsc.usc.edu/ Or there may be a something like this via a University or medical program in your area.
Here are links I learned about the hard way. I hope access to this info will help make your journey easier....
Landline phone. Not everyone can always use a cell phone. Even younger people can get an illness or injury that makes cell phone use difficult. If your elderly family member is using a cell phone now.. encourage them to keep or install a landline phone. Having a phone that everyone can use is important. Many states offer free augmented phones for the elderly/hard of hearing/visually impaired. They only work on landlines. I had to scramble to get a landline phoneline re-activated at mom's condo. Dad had switched to a cell phone years ago. What he didn't appreciate is that mom couldn't use a cell phone without assistance... so once he wasn't around... there was no way to call mom... or for her to call out. Getting the landline reactivated took almost 2 weeks due to problems at the utility end. Landlines will work when cell phones go down. I strongly encourage everyone to always have a working landline at their home.
Call Button. Getting one of these was a great tip from one of mom's agency caregivers. There are a wide range of call buttons and pager services available. Deciding on what kind is one part of this process. Getting the elderly family member to use the button takes time and practice. We got this product as it was suitable for our needs and works great -- when I can get Mom to use it. For overnight caregiving -- being able to use a call button increases independence and alerts caregivers when assistance is needed.
Learning you need to ask for help is challenging for seniors.
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.
Velcro shoes & open toed sandals
Shoes laces are a tripping hazard. Poorly fitting shoes can contribute to foot pain, infections, and mobility loss. Sturdy soles protect feet and prevent slipping.
Replace old shoes with Velcro closure footwear.
I had to mail order several of these to get the right fit.
Since Mom had a toe injury that took months to correct, she needed shoes indoors that gave her stability but also were open toed. Again, it took several mail orders to get the fit right, but these Memory Foam Sandals from the “Collections Etc” catalog have worked well for her.
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. Both of my parents had foot issues that needed attention but the doctor never had them take off their socks – even at annual physical exams! Unacceptable.
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 – that he slapped a band aid on for nearly 2 years until it was diagnosed as skin cancer! -- got earlier attention. But because Dad was so healthy otherwise, and he presented so well clinically, his doctor never looked at his bare feet.
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 hard-to-put-on vice grip socks of years ago. Most older people get swelling in their legs and ankles. Compression socks worn during the day … 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.
Footed “quad” Cane
A quad cane is essential. Until you start using a cane, you may not realize that a cane with four feet is always on standby and ready to be used. A traditional cane needs to be propped somewhere and often falls out of reach. For seniors with balance issues, a quad cane is more stable support. This carbon fiber quad cane is lightweight, but also very strong, with adjustable height and a comfortable hand grip.
Combo/convertible walker-transport chair.
If you're caregiving for someone with mobility issues, there will be times you need to move them quickly and safely. A transport chair is the right tool for this job. A transport chair is not a wheelchair. It can't be self-propelled by the person riding in it. A transport chair has smaller wheels, and is lighter weight, than a wheelchair. A transport chair is essential safety equipment if you’re caregiving for someone who is elderly/and or has mobility issues.
Get a combo/convertible walker-transport chair. This is best for trips to appointments and longer walks. The person can use it as a walker, but if they get tired, it converts easily to a transport chair and they can be pushed. I got this GoPlus model. Most mobility aids are unisex. This product is sturdy enough for men (typically taller/larger), but lightweight and nimble enough to suit a smaller/lighter woman.
I looked at several brands and styles of combo walker-transport chairs.. Here’s why I picked one and like how it delivers in these areas:
It has the greatest range of adjustable height options for the handle bars used in both the walker and transport chair modes. Trying to set the right height for these bars has been a struggle on other walkers. This feature has been a game changer. Being able to set the handles at the right height 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.
This model has larger, sturdy arm rests, which were an important feature for us.
The foot rests are pedal-shaped foot rests that add comfort and stability for the person riding in the chair. The foot rests can be folded to the side and snap in place, out of the way. (I'm still getting the hang of this, making sure they snap in place and stay, and making sure the foot pedals stay in place in this stored position).
For the person pushing the chair, there is a foot lever above each rear wheel. This helps boost the chair over small bumps/floor surface transitions. It takes some practice.
When you need to get someone with limited mobility to appointment, across parking lots/uneven terrain, or to 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/transport in a car and is pretty lightweight.
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.
Use in transport chair mode with caution at first -- there is no seat belt and if you are trying to maneuver the chair over bumps in the road, the chair can tip forward if your aren't careful. You'll get the hang of how to avoid this, but don't risk any injuries..
New tip 10.20.22 -- When moving someone in a transport chair over small bumps at places like doorways and elevators -- BACK THEM IN!! Wow, is this a lot easier than trying to lift them over.
In walker mode, this unit is larger and more awkward than a traditional 4-wheeled roller walker to use inside the home. The wheels are nimble enough, but the size can make getting in and out of restrooms a bit challenging. Most of us never have to factor in wheelchair access to our restrooms. Caregiving is finding adaptations that work. This product is smaller than a wheelchair. The fact that the handle heights are adjustable more than compensate for it being a bit big in tight spaces. If you can't have both a wheeled walker and a transport chair, I would still recommend getting this combo product.
The pedal shaped foot rests are an important plus, but we're finding them a bit tricky to snap back into the folded away position. The pipe that supports the foot rests snaps well into a clip, but the pedals themselves tend to flop out and not stay in place. We've resorted to using mini bungee cords to secure the foot pedals. It's a hassle, but worth putting up with because of the wide range of handle height options. UPDATE -- The inconvenience of the foot rests flopping outward in the storage position seems to be a design flaw. I haven't been able to find a way to get the foot pedals to stay locked in "stow-away" position on their own. This is a feature to check out if you get a chance to see more than one type of walker-transport combo chair in person.
There is built-in padding for the arm rests, and that helps, but I did mail order some wrap around/Velcro arm rest pads and they are a big improvement. (I got these “Vive wheelchair arm rest covers” from Amazon – they are machine washable and come in a variety of colors)
And where did I ever learn about a combo walker-transport chair??? From mom's doctor? From caregivers/the agency? From friends/family who had been through this?
Nope. From You Tube. The "Bob & Brad" channel is informative clips about physical therapy exercises. I will always HIGHLY RECOMMEND getting your senior on an in-person PT program. However, this channel is good for background on PT issues and equipment. The item they recommend in this clip is one I checked out, but not the one I ended up ordering. This clip from Feb 2016 is still good reference though..
Traditional 4-wheeled rolling walker…
These are nimble, smaller, and come with a padded seat and generous storage. They come in 4-wheeled and 3-wheeled models. I’ve only used the 4-wheeled (because of the seat option). These units excel at turning and pivoting, and they also have brakes for stability. They are better than the old-school 2 wheeled walkers. Wheel size matters -- larger wheels enhance stability and maneuverability.
As soon I started living with Mom, I took her to a local home healthcare aids store to get her a 4-wheeled walker. She wasn't keen on being matched up for "something old people need"... but humored me to "try one out" for when she "might need it." Getting it early so we already had a reasonable one at home when it became essential a few months later was very helpful. We got this brand and have been very happy with it (except for the fact that it’s turned out to be just a bit too short for her, even at the highest handle height setting. Even taking her in person to try to make sure she was getting the right sized product proved tricky without some trial and error.) She still uses it a lot inside her condo, as it is agile in the tighter spaces of a home interior.
Only 3 settings for handle height on the model we have. Not having the handles at the appropriate height contributes to that “hunched over the walker” posture you often see. These 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 –
I got Mom one of these when we realized her 4-wheeled walker was actually too short for her. She enjoys walking daily and liked that this product gave her better posture and better eye contact with other people. This walker does have a seat (not padded), but can't be used to transport someone.
Here are reasons I wouldn’t recommend getting 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 are hard plastic. They 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. Seniors/men/taller people with mobility issues may find this more user-friendly than traditional roller-walkers. This product is more substantial overall than 3 and 4-wheeled walkers. But it's still not a transport chair, so it won't solve that problem.
Here’s link for the one I got:
Electric foot warmer pad –
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. This 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:
Baths and showers are the #1 place where life-changing falls happen. Take shower/bathing safety seriously.
I mailed order this shower chair model 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. The seat is lightly textured, but still tiny bit slippery withouth the padded covering.
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 handles
Another trial and error discovery. We found this worked best because it was still toilet seat (not floor) based, but was more stable than other seat-based options we tried. Be careful with options that included raised toilet seat as that can lead to feet dangling. This option leaves the toilet seat at the traditional height, but gives support with sturdy handles on either side.
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. Trying to move even a slender person when they aren't mobile enough to assist, even for something as simple as a transfer to a chair or out of a car, is a challenge! I just mail order a transfer belt, a harness, and a sling. Once we try these out I’ll have more feedback
Here are some options:
Limited mobility or loss of dexterity can make simple tasks like dressing get complicated. Putting on regular pants 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.
No one wants to think about needing help with hygiene care.
Think about it.
If you are unable or unwilling to take on these tasks as part of your caregiving job – plan ahead now. Do you know how to find in-home help for personal care? Can you afford this – the cost of caregivers that come to your home is mind-blowingly expensive -- especially if caregivers are from an agency (which I recommend since there are insurance, employment and liability issues with these jobs and workers). Perhaps toileting issues arising becomes a deciding factor for assisted living care. If “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. These products are comfortable, effective, and discreet. Have your senior wear them overnight in bed, or out for an errand, as “practice.” Sometimes medical tests or health issues will prompt the need for these items on a short-term basis. Use that opportunity. Buy waterproof liner covers for mattresses –online or at Target –and start using them now. Do you want to spend $20 now – or deal with disposing of a soiled mattress later??? I like these “Allerease Ultimate Mattress Protectors” because they block everything:
The Allerese “Perfect Protection” line is also good, and more widely available
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 care for everyone – Not just at this phase. 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.
Home is now a Healthcare Setting
It can be challenging for your family member to understand that you're working hard to keep them in their home as long as possible, and it’s still their home, but it’s also now a healthcare setting. For them. For everywhere there helping out. Even if it’s friends and family doing the caregiving… 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.
Dry Erase Board and Care Guide Binder
These are two items that became lifesavers.
A dry erase board on the fridge. A great place to daily 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.
A large 3-ring binder marked “Care Guide”. This is where I keep instructions on all the care plan details 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, also a pocket with list of medications, List of doctors, photocopy of current Covid vaccination card, and copy of the Advanced Healthcare Directive.
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 set up two log books that the caregivers and I make entries into. One had water intake, OTC (over the counter supplements/meds) and Rx doses. This also is were 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.
These are the top tips for now.
I’ll continue to update this post.
Caregiving is a “heavy lift.” Take care of yourself. Be prepared. Replenish your reserves of courage, patience and grace. (more art by Kate Allan)