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Speaking with “I” statements to share your feelings can be more productive than blaming and shaming. If you’re stressed, say so. If you want help, ask for it. Remember: clear is kind!
Section 2
Time to Pack:
Must-Haves for Any Care Journey
Quiz Time!
Q: What type of packer are you?
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Hey, you do you. When we asked care partners what they wish they had known to ‘pack’ for their care journey, these must-haves stood out. Read on!
What do you need to embark on this particular journey?
When we asked care partners what they wish they had known to ‘pack’ for their care journey, these must-haves stood out.
Must-Haves for Any Care Journey:
Trusted resources
An understanding of the cost of care
A safety plan
A support network
Let’s break each one down.
1. Trusted Resources:
The interwebs can be a scary and, well, inaccurate place. Ensure you are looking for answers from trusted medical providers or online resources from known and established organizations, like HFC or NIH.
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The world of dementia care is vast. National toll-free helplines can be a great place to start.
Here are some we recommend:
2. Understanding the Cost of Care:
While it may seem a bit “too soon” to jump to the dollar and cents of it all, care partners often bring this up when asked, “what do you wish you knew then that you know now?” Their answer? “This sh*t is expensive.”
Getting a sense of what’s to come financially is something we recommend doing sooner than later in the process
First, don’t freak out. OK, freak out, but then take some deep breaths and come back…
You good?
Remember, knowledge is power. Preparation is EVERYTHING. Understanding the cost of different levels of care is critical to charting your course. Use the average costs below as a baseline when doing your research for costs where you live or where your person is located. Obviously, the more care your person requires, the steeper the cost.
Examples of low-touch care costs when your person may still be living at home:
The average cost of adult day health care services is $1,625 per month, or $19,500 per year.
The average cost of a home health aide is $4,385 per month, or $52,620 per year.
Source, Genworth Financial
Example of assisted living care costs:
The average cost of a private room in an assisted living facility is $4,051 per month, or $48,612 per year.
Examples of high-need care costs:
The average cost of a semi-private room in a nursing home is $7,513 per month, or $90,156 per year.
The average cost of a private room in a nursing home is $8,517 per month, or $102,204 per year.
Elder Law Attorneys are very useful at this juncture. They can help identify all of the possible public and private financial resources that might be available to you, such as Veterans benefits.
Because we heart you, we also want to give you a headstart on your Google search for high-quality, online tools for financial planning and identifying resources for financial assistance:
Elder Care Solutions
offers 1:1 financial planning for long-term care and has a self-guided CarePay tool for a small fee.
Genworth Cost of Care Tool
helps calculate the potential cost of care in your area.
AARP Cost of Care Calculator
allows you to enter your zip code for more detailed information about the cost of care in your area. There are also links to very helpful articles and tips about paying for care.
3. Home & Personal Safety:
Taking a serious look at the safety of your person and those around them is important. Safety assessments can help with concerns about:
Driving:
professional assessments are usually conducted by a third party to determine if it’s safe for your person to drive
Medication Management:
this one is tricky if there are several medications that must be taken at different intervals. You want to ensure that your person isn’t double-dosing or skipping doses all together. There are some good resources in this department as well, automated dispensers and providers who will fulfill prescriptions and bundle them by day and time. Make sure to ask about the amount of time and procedure for transferring prescriptions from a pharmacy to a bundle provider.
Wandering:
is your person leaving home without others knowing? It might be time to assess internal safety locks, alerts, or cameras.
Danger to Self or Others:
this can include delusions/paranoia that result in physical harm or increased stress states. Forgetfulness around the home can also be dangerous such as forgetting to turn the stove off, accidentally grabbing a loaded firearm, leaving the gas on, etc.
Be aware that safety concerns will change over time. Start where you are. In other words, if you are dealing with Mild Cognitive Impairment or the very early stages of Alzheimer’s, you may not need to be concerned about wandering yet, but you may want to consider a driving assessment. It may be helpful to have a care professional involved as well, like a geriatric care manager, as a neutral 3rd party. Despite our best intentions, emotions can pop up and cloud our decision‑making.
Quiz Time!
Things that are easier with others:
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All of the above! Okay, “C” is debatable… but “D,” the caregiver journey, is DEFINITELY better with a squad.
4. A Support Network:
AKA Convening Your Care Squad
AKA Convening Your Care Squad
Spoiler Alert: asking for help is not a weakness. Help can look like a lot of different things: someone doing your laundry, sending meals over, driving to appointments, providing an hour or two of respite, or taking you out for a drink or yoga class.
It’s hard to ask for support, but consider how much you’d want to be there for others if they were in your shoes.
Take a minute to think about who you have around you. Who do you consider your inner
Could you ask your neighbors for help?
Are you a part of a faith-based community?
Have you considered a support group?
Maybe it’s a friend from your school days, a fellow parent from your child’s class, or someone from your gym.
We know what you’re thinking…
“What do I say to these people?”
Be honest. Maybe you’re struggling to manage it all, or maybe you just miss a good brunch date. Either way, ask for what you really need and accept help when it’s offered. Make it that simple. Remember, the goal is finding the time and space to recharge.
Let’s practice:
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The Personal Squad:
Friends
Don’t count out the close friends of the person you are caring for. In many cases, they have known you your whole life and can be a great source of comfort, a storyteller about your person, and support you in ways your person may not be able to anymore.
Cue: “I’ll be there for youuuuuu.” 🎵 Having a person to talk to, who knows you, can be a great thing. It can also feel good to have this person as an outlet to “just be normal” with. Remember brunch? Going to watch the game at the bar? Pedicures? Ideally, you have at least one friend in your life who knows what is currently happening in terms of your person’s condition or that you are providing care. Often, we don’t want to be a burden or bring our friends down. If possible, tell one person. Keep yourself from isolating and maintain a connection to your life for support and more.
Family
Family dynamics can be tested in times of stress - even for the closest of families. While family problems might not be solved, there are ways to work together, or carve out roles that feel right for you. If the whole family lives in close proximity, designating a schedule for care tasks such as rides to appointments, meals, visits, etc is a great start. For those who may be providing care from a distance, be in charge of the Instacart delivery, finding resources, or making phone calls. By working on conflicts that arise together, you will maintain space to focus on what matters, your person!
Family Game Plan
Share Responsibilities
Connect regularly and ensure the family is in the loop - whether in person, via video call, or even a group text
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Keep it real and communicate clearly
Don't be a hater
Criticizing the way others are doing care simply because it’s different from your approach can create more challenges. Respect different styles and approaches.
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Consider a referee
If things get heated, bring in a 3rd party to moderate, coach, and assist the family unit to move forward toward a common goal - even if that common goal means you become less involved.
Community
Whether faith-based or people in your neighborhood, asking for help and seeking support from those around you can be a great asset. Perhaps it's the boy next door who can shovel the walkway during winter, a rabbi visiting for pastoral care, or the mothers of the church coming by to keep Mom company. Getting your community involved in some of the day-to-day can be a huge assist and give you one less thing to worry about
Community-Based Resources: Friendly visitor programs, meal delivery services, senior centers, and access programs are often available and a great resource for support and respite - for you as well as the person you are caring for.
Let’s break down the other players in your squad…
The Professionals
Doctors
Best case scenario: you find a unicorn - a neurologist who specializes in the specific dementia you are working with. But as we know, unicorns are rare. You may also want to include a geriatrician and geriatric psychiatrist (if warranted).
When searching for a doctor, try to find someone who has experience working with dementia and the geriatric community. Not all neurologists are experts in dementia. It’s ok to “interview” numerous doctors to find the right fit. This person will be working closely with you and your family and it can be beneficial to have a good rapport.
Social Workers
The social worker on your squad can serve as a care manager or care coordinator. Not only are they able to provide support to you and the person you are caring for, they can also assist in creating and maintaining aftercare plans post-hospitalization. Additionally, licensed clinical social workers can provide you and your family with therapeutic interventions and support. They can connect with companion care or senior engagement programs. They can link with food delivery programs or homemaker services. A good social worker can be your right-hand person, your ride or die. Hospital stays can be the first point of access to a social worker. Care settings may also have a social worker on staff for care coordination purposes.
Geriatric Care Managers (GCM)
Think of geriatric care managers as the executive assistant you always wanted to help handle all the details of care. Also known as “aging life care professionals,” these individuals can be nurses, gerontologists, or social workers, and serve as coordinators of care for your person. Tasks they can provide include assessment of home and care needs, home organization, securing home health aides and other care staff, and assisting in organizing next steps. If your person is aging in place (meaning staying at home), hiring a geriatric care manager can be a great asset to assist you and ensure all care is tended to.
Think of geriatric care managers as the executive assistant you always wanted to help handle all the details of care. Also known as “aging life care professionals,” these individuals can be
Here’s a handy room-by-room checklist from the National Institute on Aging. This will alert you to potential hazards and help you record changes you need to make to keep your person safe.
nurses, gerontologists, or social workers, and serve as coordinators of care for your person. Tasks they can provide include assessment of home and care needs, home organization, securing home health aides and other care staff, and assisting in organizing next steps. If your person is aging in place (meaning staying at home), hiring a geriatric care manager can be a great asset to assist you and ensure all care is tended to.
Home Safety Professionals
This can be done by a GCM, occupational therapist, and other clinical experts. This professional can come into the home and guide you and your family on what changes can be made to ensure that the home remains a safe place for your person to live. This can include installing grab bars strategically, removing slip and trip hazards, decluttering, and much more. If the goal is for your person to remain at home, ensuring that home remains safe is of critical importance.
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Financial Managers
These professionals are great to have on hand; as discussed earlier, the cost of care is high and financial managers can assist you in planning for the future. This may include securing long term care insurance earlier in life, or exploring trusts and estates to protect assets. The point here is that you don’t need to figure this all out on your own. When it comes to money, many get overwhelmed. Let the professionals guide you.
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Elder Care Attorneys
Elder care attorneys, like financial managers, are attorneys with specialized knowledge in legal matters pertaining to older adults. Elder law encompasses many fields of law, with elder law attorneys specializing in numerous areas, including:
Administration and management of estates and trusts
Estate planning and probate
Trusts, wills, and other financial documents
Long-term care placements in senior living communities and nursing homes
Medicare and Social Security appeals and claims
Elder abuse and fraud
The preservation or transfer of assets to avoid spousal impoverishment when a spouse enters a nursing home
Some elder care attorneys can also assist you with what's called life-care planning which will help identify private and public funding to help you pay for care and plan for the long-run including care coordination, health insurance assistance, advocacy and ensuring your person is safe and getting the right care in the right place.
source: National Academy of Elder Law Attorneys (NAELA)
Licensed Mental Health Clinicians/Therapists
Simply put, dementia can bring up a lot for the care partner, as well as others connected to the individual living with it. Feelings of loss, helplessness, grief, anger, you name it. Whether your relationship is positive or estranged, working with a therapist can provide space to process what’s happening and tools to help yourself and your person. Like finding a doctor, the unicorn therapist has an understanding of dementia and caregiving, but the most important thing is to feel comfortable and safe to share and explore your feelings.
Support Groups
Support groups are a great option for you to feel connected with someone else who is going through the same thing. Ever feel like your friends couldn’t possibly understand since they haven’t been through it? Knowing that each week you can get support, guidance, and resources from people in similar circumstances can be a great asset to you and perfectly round out your squad.
And it just so happens that your good friends at HFC offer FREE, online support groups for Alzheimer’s family caregivers! Our groups are run by credentialed facilitators (read: LCSWs and MSWs) and we run groups every day of the week.
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