Category: Long-Term Care

Note: This information is intended for situations where the older adult has the cognitive ability to make clear decisions for themselves.

Depending on the perspective of the adult child or the older adult, a paid in-home caregiver can be a fantastic idea or one to be avoided at all costs. There are legitimate reasons for reluctance and yet practical steps to help introduce a professional in-home caregiver.

Why an older adult may not want an in-home caregiver

Going from being an independent person to one that needs help Is hard. It can bring up complex feelings that touch on the core of one’s identity. In fact, most older adults initially reject the idea of help from a caregiver. Some of the reasons older adults decline in-home help may include:

• A sense of obligation to entertain or host the caregiver
• Hurt that “family doesn’t want to take care of them”
• Distress that accepting care makes them seem vulnerable
• A desire to remain in control, and not wanting someone to come in and “take over”
• Not wanting a “stranger” in the home
• Feelings of shame or embarrassment by the need to rely on someone else

Setting up the conversation

• Start by asking:
  • Did you have the responsibility of taking care of your parents?
  • If so, what was the experience like for you?
  • Did you have to make any difficult decisions?
  • Find out what that experience was like for them. This may help them to look a little deeper at your side of things. They may want to try to make it a better experience for you.
• Mention your increasing concern for their safety and well-being at several separate times before bringing up the idea of hiring a professional in-home caregiver.
• If possible, share successful personal stories of those who’ve received in-home help.

Be prepared that this is likely one of several conversations.

Starting the conversation

Pick an optimal time to talk and begin with a partner mindset, seeking to have a genuine conversation about the concept of in-home care. Try not to enter into the conversation with an agenda of convincing them they “should”. 

Consider beginning with these points:

• Let them know how much you worry about them, how frustrated you are that you can’t always be there for them, and how much better you’d feel if you knew there was someone who could provide them with support.
• Communicate your stress and the impact that has on you, your family, your work, and your health.
• Describe how an in-home caregiver would assist both of you.
• Assure them that you aren’t abandoning them, but that you need help. 
• Emphasize that in-home care will enable them to remain as independent as possible, living safely in their place of choice.

Cast a vision

Choose a few ways a caregiver could support them and highlight those points. Are they tired of dusting? Do they miss the cinnamon rolls at the coffee shop just past where they are comfortable driving? Are they sick of cooking, but miss that one recipe? Would they like someone to listen to them reminisce? 

Responding to reservations

• Align with whatever reservations they have. 
• State your desire to help them as much as possible. 
• Take the conversation about any reservations further by asking a question such as, “Tell me more. What are you concerned about specifically?” Then listen and repeat what they’ve shared so that they know they’ve been heard. 

Once the older adult’s concerns are understood, you may be able to help set up a plan that mitigates their specific concerns and provides support. 

Easing into in-home caregiver support

• To make it more comfortable, consider having a trusted family member there for the first couple of visits.
• Bringing in a caregiver as a housekeeper, driver or cook and then easing into companionship or personal care can be a “gentler” start.
• If there are any, have them outline any areas of the home they don’t want the caregiver to have access.
• Start with just a handful of hours a week and increase over time as needed

Responding to a hard “no”

Most everyone wants to have as much autonomy as possible, for as long as possible. If the older adult responds to the idea of having in-home help with an adamant “no”, honor their answer and drop the topic. Consider asking if you can check in again about it at another time. Change is hard. They may warm up to the idea after thinking it over for a while. 

If over time, the reply remains a hard “no” try to have peace of mind that you’ve done what you could and that you are honoring their desires. As hard as it may be, the consequences that may come from them not having the support at home will be theirs as well. They may still have chosen those consequences over bringing in professional in-home care.

If a doctor says they are not safe without a caregiver

In a situation where the older adult’s doctor is clear that they are unsafe without a caregiver, the one legally responsible for them is required to ensure a safe environment where their needs are being met. If possible, have the doctor communicate this message clearly and directly to the older adult. In a case such as this, in order to keep them safe, the responsible party may be required to make decisions that may not always align with the older adult’s desires. Likely there are many other ways where their wishes can be honored.

You have parents and in-laws getting older: what stage are they in?

Think about the older adults in your family circle. Are they healthy and independent? Are they slowing down a bit? Or are they needing lots of help? Most families move through similar stages on their care journey. Our Care Road Map shows what may be ahead. There are specific tools you can download to support at every stage of the journey.

The Five Stages of the Eldercare Journey

Check out this road map. Where are the older adults in your family circle?

Some families are on the far left, in the “Family” light yellow section—just doing life together.

Others are in the “Family Concern”, the red section–noticing forgetfulness, a little concerned about a few falls, frailty or increased health issues.

In the light blue section, it shows how a fall or medical diagnosis can trigger the “Health Decline Cycle”, shown here by the wheel. Most older adults come out of the emergency room to rehab and then back to their living situation with increased care needs.

For an older adult, it’s not uncommon for the declining health cycle to lead to “Skilled Nursing or Hospice”, shown in the dark blue section.

On average, older adults will experience between two and five healthcare transitions in the year following a hospitalization. The average time for that cycle for an older adult is 21 months.

Download A Practical Tool For Each Stage

You have access to a few practical resources which will provide critical support at each stage. Each of these downloadable tools are linked on our Care Roadmap: Tools, so you can access them as they are relevant for your situation.

• If you are in the yellow section with healthy and independent older adults, that’s an ideal time to have essential conversations about care wishes. It can be difficult to start those conversations! so have a “Tips for Talking” guide. 
• At the Family Concern stage, we have a “Checklist of Warning Signs” to help identify specific areas to assess in order to determine where support is needed.
• At the Health Decline stage, our “Housing and Care Comparison Chart” outlines all of the living options and the care associated with each one. 
• In the final section, the “Hospice and Palliative Comparison” outlines specifically what those terms mean and what support is offered by each.

Setting up Summer Camp for Success 

Our Summer Camp Success Checklist includes pro tips like these:

• Most children do better when they know more about what to expect. Seeing the space makes it less unknown. Walk around where the camp is held, locate the bathrooms and where the pick up and drop off occurs. 

• Save the receipts and don’t forget to write off the expense. Day camps fall under the same tax guidelines as daycare, so if you pay for daycare with an FSA, or write off these expenses, you can do the same for day camp.

The Camp Success Checklist can help your child have a great camp experience and make you feel good about how you’ve supported them! 

The parenting experience is precious and overwhelming.

In fact, according to Pew Research Center, about 41% say being a parent is tiring and 29% say it is stressful all or most of the time. But you already know that don’t you?

Three practical mental health tips

• Ration your exposure to negative thoughts and negative media. This helps to not add things to your worry list.
• Don’t underestimate the power of sharing the “real story” of your parenting struggles with others. Knowing you are not alone lifts some of the weight.
• Play with your children. This is a proven way to relieve stress. It sounds simple, but play can get lost in the business of life and the use of our phones. Whether it’s playing a game, building Legos or dancing or singing together, when you’re enjoying play with a child, your body releases endorphins that promote a feeling of well-being.

The article titled, “How to Reduce Stress” by the Parenting arm of Unicef has simple, proven ways for parents to manage stress and provides guidance on recognizing stress, managing anger, self care and when to seek help.

The National Parenting Helpline, operated by Parents Anonymous is available 24/7 and is a “judgment-free, compassionate space for those in need of immediate emotional support”.

Sometimes we find mental health resources for employees who are helping a parent or older adult, like our support for Holly.

• Holly was feeling stuck and anxious as a result of the behavior of her father who at 60 had early onset dementia. His behavior was very defensive and demanding.
• Her Ways & Wane care advisor coached her on what to expect from dementia behaviors and how to respond, but also helped her find a therapist in her network that fit the profile and therapy approach she wanted.
• Holly set up therapy and has found tremendous support because of it. Her care advisor also provided two dementia-focused caregiver support groups for Holly and her sister. Holly sent this message to her Care Advisor, “I greatly appreciate you, and you make this whole scary process a lot less scary, so thank you.“

According to the CDC, it is estimated that 20% of people aged 55 years or older experience some type of mental health concern. The most common conditions include anxiety, severe cognitive impairment, and mood disorders (such as depression or bipolar disorder). Sometimes we find a specialized therapist for the older adult, like for Mason’s mom.

• Mason reached out to us feeling very concerned about his 67 year old mom who had become depressed as a direct result of a chronic health condition. She was overwhelmed and isolated at home because of it. He described her as “having more bad days than good days”. His mom was open to talking to a therapist.
• Mason’s Ways & Wane care advisor found her a local provider that specializes in helping people cope with chronic medical illnesses. He said, “the psychologist she got through the list you provided, she’s been seeing and absolutely loves.”
• Mason shared that his mom is now having “more good days than bad days” and has gone from staying isolated at home to getting out and about again. This solution allowed Mason to worry less about his mom and focus more on work.

Your cell phone rings in the middle of your work day. It’s your brother calling to tell you that something happened with mom’s heart and she’s in the hospital. It’s a very scary call. Almost as scary as trying to figure out what to do next. The information here will help you know what your next steps should be.

Keep this on your radar
Don’t assume the older adult’s spouse or partner is able to be their advocate. Between the stress of the situation and a generation that may not be comfortable questioning doctors, hands-on support from you or someone else in the family (even virtually) may be necessary.

Keep an eye out to help manage the non-hospitalized partner’s stress and needs. Their circle of friends can be called upon to help with transportation to and from the hospital, meals or companionship. It’s a generation that is used to showing up in times of need.

When you live far away from the older adult

• First, call the hospital’s nurse desk and make sure they have your name, number and relation to the patient.
• If the current status or care plan is unclear to those involved, ask the nurse to connect you with the Social Worker on staff. The Social Worker can arrange a meeting with the doctor who can explain the situation.
• “Do I need to be there?” It’s the million dollar question. If you aren’t sure if you should be there in person, ask the nurse and/or doctor if they would recommend that a family member be present.
• Don’t be afraid to call the nurse desk for updates. The ideal time frame to reach them is likely between 12-5pm since it’s after morning rounds and between shift changes.

Keeping track of it all
Keep detailed notes capturing the names, titles and dates of who you speak with and their role in the care being provided. Frequently there are various care providers and it’s easy to lose track of who said what and when. You can download the Notes During a Hospital Stay template, which offers suggested questions for the medical team and space for notes.

The Ways & Wane GoKit Medical Planner is a great place to keep these notes. Once you’ve set it up to use, the older adult’s PCP, list of allergies and medicines can be found there. Additionally, the portable GoKit Planner has slots for insurance cards, IDs and envelopes for copies of care directives.

The hospital discharge process

• Use the GoKit Medical Planner’s suggested questions to ask prior to discharge and keep notes there. Or download our Hospital/Nursing Home Discharge form with suggested questions and space for notes.
• Go through the discharge notes with the nursing staff in order to clarify any questions.
• Make sure to explain the home environment to the care providers, specifically if there are any steps in the home, a spouse who cannot manage care needs for another, a lack of transportation to get prescriptions or to receive follow-up care, etc.
• If the doctor deems medical equipment to be necessary (such as a shower chair or bed side commode) it is usually covered by a regular Medicare policy.

IMPORTANT: If the older adult is being discharged to a rehabilitation facility, they will likely receive a list of facility options from the Social Worker. This is usually a pre-formulated list of options, but they are not vetted or screened in any way. In fact, there have been numerous times we have found that the list provided by the hospital included rehabilitation facilities that have been flagged for abuse.

If you find yourself having to navigate a hospital admission for your child, there are two very helpful and yet little known resources available to support you and your child.

A Child Life Specialist

A Child Life Specialist is a healthcare professional whose role is focused on the psychosocial needs of the patient, including mental, emotional, and social needs.

This support can include:

• Develop age-appropriate strategies to minimize trauma and increase understanding of a medical diagnosis through treatments plans using therapeutic play, education, preparation, and activities that promote growth and development
• Supporting children and their families by using a variety of tactics to help them better understand a process, procedure, or other element of their medical experience
• Advocating for the special needs of children and their families
• Providing information, support, and guidance to parents and family members
• Collaborating with the health care team to coordinate and manage care

Your child’s nurse or a Social Worker can ask the Child Life Specialist to reach out to you.

TIP: Since they tend to be in high demand and there may be just one of them at the hospital, put in a request as early as possible. Once you do, provide your phone and email so that it’s even easier for them to reach you.

A Social Worker

The hospital Social Worker can provide help to cope with the effects of your child’s illness on your family. They can support with both immediate and longer term practical and psychological challenges, such as:

• Resources to care for other children while your child is in the hospital
• Reimbursement for parking or public transport to/from the hospital
• Meals while in the hospital caring for your child
• Options for where to stay if you need to be close to the hospital
• Ways to pay for care
• An assessment of your family’s needs in relation to your child’s health event
• Referrals to community resources
• Short-term counseling to help your family adjust
• Help in understanding and learning strategies to effectively deal with behavior

Your child’s nurse can put a request in for a Social Worker to reach out to you.

TIP: Get the Social Worker’s specific contact information so that you can proactively reach out to them. Once you do, provide your phone and email so that it’s even easier for them to reach you.

This short, but very informative “Eight Ways You Can Help Your Child Cope While at the Hospital” by The National Child Traumatic Stress Network may be helpful as well.

If you were to ask your 4 year old if you can live with them when they grow up, they’d likely reply with an enthusiastic “I wanna always live with you; I never wanna live in another place from you!”. 

Ask them again when they are 35 and their answer may be different. 

Maybe you’ll choose to live with your adult child, but it might be nice if you have other choices too. Planning for affordable housing before you are the older adult is something that cannot start too soon. 

Retirement Calculator

Do a quick calculation to see if living with your kids will be optional. Without putting in identifying information or creating an account, Dave Ramsey’s retirement calculator will show an estimate of your retirement savings. It will even show you what you can save if you skip the daily coffee purchase, but you don’t actually have to look directly at that number. 

Compound Interest Example

According to AARP’s retirement planning article, “the earlier you start saving for retirement, the better off you’ll be. If you start putting $5,000 a year into an IRA at age 30, you’ll have about $669,400 at age 70, assuming you earn 5 percent a year. If you start at age 50, you’ll have $186,860. Although it’s never too late to start saving, it’s a lot easier if you start early.”

Fidelity Investments’ 8 moves to help snowball retirement savings has tips for those in their 20s and 30s. Additionally, Dave Ramsey’s How to Save Money: 23 Simple Tips has some truly practical ways to save money even if you can’t imagine cutting expenses.

And as a backup plan, you could always ask your four-year-old to put the “you can always live with me” in writing, especially if you plan on continuing your daily Starbucks habit.

True or false? 

Medicare will cover the cost of mom’s housing and care.

False.

It’s a fairly common misconception that Medicare will cover the cost of housing for older adults, but this is not the case. Medicare will cover up to 100 days a year in a nursing home, but only after a qualifying hospital stay. Particularly since housing prices and living costs are expected to continue to rise, a viable housing plan is more important than ever before.

Most funding for the housing and care of older adults comes from these sources:

• The sale or rental income of their home
• Retirement income such as a pension or investment account withdrawals
• Social Security benefits. According to the Center on Budget and Policy Priorities, in 2022, retired workers received an average of $1,669 per month in Social Security benefits

The fact is that for most older adults in the United States, their available funds do not adequately cover the cost of housing and necessary expenses. Currently, more than 15 million older adults are “economically insecure,” meaning they live at or below 200% of the federal poverty level ($27,180 per year for a single person in 2022), according to the National Council on Aging. In fact, by 2030 there will be about 72 million adults over the age of 65 with more older adults expected to enter the federal poverty level than ever before. 

Budgeting Tools for Senior Housing

Are you helping an older adult to plan ahead or stepping in to help manage a budget for housing and care? There are two free resources to help in the budget planning process:

1. This free Retirement Planner Worksheet is for individuals ages 50-70 and does not require identifying information.
2. If the expected income from Social Security is unknown, you can get an estimate of the expected benefit payout from the Social Security website.

Creative Senior Housing Options

It’s clear that affordable housing options and creative solutions are much needed to address the needs of economically insecure older adults. Some housing solutions include: 

• An Accessory Dwelling Unit which can be added to an existing property. Detailed information about ADUs can be found in our article HERE. 
• Manufactured home communities for 55+ can be another more affordable option. The home itself is owned, while the land in which it sits is leased. Care should be taken to understand the expected increases for the cost of the land lease.
• Senior apartment complexes offer independent living units, sometimes with common use areas and services. The cost of renting is usually less than the cost to maintain a home and cover property taxes, upkeep and repairs.
• The United States Department of Housing and Urban Development (HUD) offers affordable public housing apartments and single-family homes for older adults in need. The two programs which offer the most help to older adults are HUD’s Section 202 Affordable Senior Housing and HUD’s Housing Voucher Program
• The Low Income Housing Tax Credit (LIHTC) Program does not provide housing subsidies, but tax incentives to encourage developers to create affordable housing. These tax credits are provided to each state based on population and are distributed to the state’s designated tax credit allocating agency.

Both HUD programs and the LIHTC have specific processes and requirements to apply. Unfortunately, they can be time-consuming and confusing to navigate. The demand for subsidized housing is already significant and is only going to increase. So while there are long waitlists, it’s wise to begin the process of applying, even if it means paying an application fee.

Our Housing and Care Options chart provides a general overview and cost comparisons.