One of the most common questions we get from Working Daughters is, “Where do I begin?” Right here! On this page you’ll find information on the first steps every caregiver, or soon-to-be caregiver should take with regards to 3 key aspects of caregiving: medical paperwork, legal matters, and senior living.
Let’s get organized!
Caregiving is one of the most difficult and most meaningful roles you will ever have in life. But sadly, if you are like the majority of people caring for someone else, you will receive little to no training. Know this: your best will be good enough. You’re showing up and caring and that’s significant. Congratulations on taking an important step in getting prepared and organized.
This week, let’s get your medical paperwork in order:
Step 1. Buy a hard cover notebook, small enough to fit in a purse and record the following information in it:*
- name and phone number of your parents’ primary care physician and/or geriatrician
- doctor’s phone number
- name and phone number of any specialists your parent sees or is referred to. (ex.cardiologist, oncologist, pulmonary expert, podiatrist, physical therapist)
- agency name and number for any visiting nurses or home health aides that help care for your parent
- schedule of home care visits.
Take this notebook to every doctor’s appointment. When you think of questions, write them in this notebook. When doctors share information or give orders, record them in this notebook. Keep track of questions and concerns as you think of them on your smartphone so you can access them when you are at the doctor. Ask your parents what their concerns are and add those to the list too. In addition to your own list of questions and concerns, here are some additional questions you may want to ask:
- What changes and symptoms should I report as I observe them?
- What should trigger a call to the doctor or to 911?
- What possible side effects should we expect from medication?
- Can we reevaluate his/her medication list? Can any prescriptions or doses be changed, reduced, removed? Every family caregiver should ask this question on an annual basis!
*Also store this information electronically on your smart phone and/or a computer.
Step 2. Take pictures of your parent’s insurance cards – front and back – and keep them on your smart phone.
Step 3. Make a medication list. The list should include name, dose and time of every medication your parent takes – even better if you also list why they take it, plus, contact information for their pharmacy. Keep this list on your smart phone and in your notebook.
Consider a medication management system. Other working daughters recommend these products. If you want a system that will tell you if pills were actually dispensed, our favorite is from Hero Health: Use code WD50 to receive 50% off the initiation fee.
Step 4. Review the following list of paperwork and
- If your parents don’t have these documents, ask them to consider them.
- If they do, locate them and make 4 sets of copies. Keep a copy at home, at work and in your glove compartment.
- Healthcare proxy aka Durable Medical Power of Attorney. Your parents should each designate one person to be their health care proxy. This person, often the primary caregiver, has the authority to make medical decisions for a patient in the event they are unable to. Some people have a proxy statement prepared by an attorney while others complete a form at their doctor’s office or at the hospital. Most proxies require at least two witnesses to sign them, but requirements vary state by state. Also proxies can be changed, so if, for example, your parent names someone who can no longer fulfill the role, they can assign someone else. When you are a proxy doctors will share information with you. If you are not the proxy, doctors are not allowed to discuss a patient’s medical issues with you due to the Health Insurance Portability and Accountability Act of 1996, commonly known as HIPAA. Some hospitals only recognize a proxy form completed at their facility and some only accept original copies. Therefore, if you are your parent’s proxy, always keep your original form as well as a few copies with you. Without this document you cannot get information or make medical decisions for your parent.
- Advanced directive aka living will. An advanced directive, sometimes referred to as a living will or physician orders for life-sustaining treatment (POLST), clearly spells out what, if any, medical intervention your parent wants to receive in certain medical situations, in the event they cannot communicate their preference. In some states, a patient can complete an advanced directive with their primary care physician. These directives cover whether or not a patient would want a feeding tube, for example, if they were unable to eat, or the use of life sustaining treatments such as ventilators, and heart-lung machines. Again, patients can update these directives if their wishes change. Advanced directives may be unpleasant to think about and discuss, but they can provide clarity and peace of mind for a caregiver in a difficult situation. If your parents are very ill, consider posting their advanced directive above their bed so nursing home staff, EMTs, or other responders will see it during an emergency.
- DNR. DNR stands for Do Not Resuscitate. This can be a doctor’s order or a legal document that tells medical staff not to perform cardiopulmonary resuscitation (CPR) or advanced cardiac life support in the event a patient stops breathing or their heart stops. A DNR can be part of an advanced directive or a person could opt to have just a DNR without an advanced directive. You may hear the term, “Allow Natural Death” in place of DNR. Some medical professionals are advocating the use of this phrase in place of DNR as it better defines the decision a patient and/or their proxy is making.
Step 5. Buy a magnetic file holder like this one and place it on your parent’s refrigerator. Get a large envelope and write “Emergency Responders” on the front. Place a copy of the Healthcare proxy form, DNR and/or advanced directive, medication list, copy of the insurance card, and your contact information in the envelope and put the envelope in the file folder on your parent’s refrigerator.
Step 6. Download and complete this medical history form. Keep it with your copies of the proxy, med list, etc.
Congratulations! You are organized on the medical front!
Here is the non-medical information you’ll want to gather.
1. First, let me start by saying hiring an elder law attorney is a one of the smartest things you can do to help you plan for your parents’ later years. Elder law attorneys can assist with a number of things including health directives, creating guardianships, writing wills, and guiding families through any disagreements related to assets and inheritance.
To find an attorney, ask around for referrals and/or visit the National Elder Law Foundation (NELF) website (www.nelf.org), an organization that certifies attorneys specializing in elder and special needs law.
Sometimes paying for expertise is just not possible. Know that plenty of working daughters manage their parents’ finances and long-term care planning on their own. Regardless of whether or not you work with a financial or legal advisor, here are some items you should consider discussing with a lawyer:
- Power of attorney and guardianship Your parents may designate you or someone else they trust to be their power of attorney (POA). This designation allows you to handle financial and legal affairs on their behalf. You can help pay bills, talk to insurance agents, and sign legal documents for your parents. Have a lawyer make multiple original copies of your POA paperwork as many institutions require an original copy and you will not want to give away your only one.
- Different from a POA, a guardian is someone a court appoints to manage another person’s welfare. Some adult children seek guardianship because their parents did not have a POA in place and they are unable to care for themselves or make healthy and safe decisions. The process for securing guardianship varies by state but typically involves filing an application in probate court.
- Paying for long-term care The average lifetime cost of long-term care is $172,000 per person and growing! Funding for long-term care typically comes from one or more of four sources: personal savings, insurance, financial support from family, and Medicaid. A parent outliving his or her assets is a very real possibility. Medicare, the federal health insurance program for people aged sixty-five and older, does not cover long-term care, and Medicaid eligibility is based on income level. Many people discover that their parents have too many assets to qualify for Medicaid but not enough to sustain them for many years. And of course, many parents want to protect their assets either for a spouse or to pass on to their children. This is where a professional can be valuable because they can guide your family through the available options. And if you can’t afford to hire a professional to assist you, you can still get help. Business managers at senior living facilities can help with payment options and financing plans. Also check local senior centers and Councils on Aging as many of them offer free legal and financial workshops.
- Wills and estate planning Without a will, your parents have no say over how their assets are distributed after they die. Instead the laws of the state where they reside dictate distribution. In most cases property and valuables are given to a surviving spouse, to children, or perhaps to surviving siblings, depending on the state’s laws of succession. Besides a will, other estate planning issues you and your parents may want to consider include naming a guardian for any dependents they may have, providing for family members in need of care, securing life insurance to cover burial costs, and dissolving or selling a family business if they owned one.
2. Look into public benefits. Your parent may be eligible for aid, either based on his or her income, age, military service, or for a host of other reasons. These benefits, which vary by state, can help with a variety of expenses from medication to food to taxes to utilities. The AARP Foundation offers an overview of benefits and how to access them on their website (www.aarp.org/quicklink). Most municipalities also have a Department of Elder Affairs or a Council on Aging that should be able to help.
For information on Veteran’s benefits and for application forms, visit the Department of Veteran Affairs website (www.va.org). Pro tip: The application for veteran’s benefits is complex, but most municipalities have a veteran’s affairs officer. Contact this person for help filing and completing forms.
3. Look into your parents’ everyday bills and life maintenance
In addition to some of the complex issues you may need to tackle as a working daughter, there are a number of more mundane, but equally important, pieces of information that you should gather to help you manage your role. Here’s a checklist of information you should have so that you can support your parents:
- Bank accounts
- Life insurance policies
- Homeowner’s insurance policy
- Name and number of their insurance agent
- Social Security numbers
- Information on any pensions or annuities they may have
- Safety deposit box (location, number, key)
- Mortgages and deeds
- List of monthly bills including utilities
If you can focus on these areas, you’ll be way ahead of the game!
There is no one right decision when it comes to living arrangements for your aging parents. Some parents thrive at home, others do better in a senior living facility. As always, when talking to your parents about their living arrangements and/or making decisions on their behalf, aim for equal parts courage and compassion: the courage to do what is needed and the compassion to understand what a challenge aging, and all of the challenges it brings, can be.
Senior Living Options
To give you a sense of the options, here is an overview of 8 different types of living arrangements.
Aging in place.
This means your parent remains in their home. In order to do that they may at some point need assistance with driving, household chores, finances, bathing and dressing, and medical needs including transportation to doctor’s appointments, assistance with medication, medical tasks, physical therapy, etc.–either from you, another family member, a home health aide, a visiting nurse, or some combination of people. You may also need to retrofit their home by lowering shelves, removing any trip and fall hazards such as area rugs, lowering toilet seats and widening doors to accommodate walkers and wheelchairs.
These communities, often an apartment complex or cluster of cottages, allow seniors to live independently but take advantage of shared services such as dining rooms, activities, and exercise programs. If you or your parents are concerned about social isolation, a very real issue for many senior citizens, this could be a solution. Most independent living facilities are pricey, often comparable to the cost of a home, but some refund a portion of the fee after move out.
Assisted living facilities differ from independent living in that residents can purchase care plans for assistance with tasks like bathing and dressing, housecleaning and laundry, and medication assistance. While assisted living facilities have nursing staff, they are not designed to provide medical attention. These facilities are not covered by Medicare or Medicaid they are private pay. Some have a set number of units designated for residents in need of financial assistance and the subsidy source varies state by state. There is typically a long waiting period for subsidized units.
Board and Care Homes.
Board and care homes differ from assisted living communities in that they have fewer residents. Both living options provide similar services.
Memory care is similar to assisted living except these facilities cater to people with cognitive decline such as Alzheimer’s and dementia. They offer a high level of assistance with personal care tasks plus recreational programs tailored to people with memory loss. Residents typically live in a locked area so they won’t wander or get lost.
Skilled Nursing Facility.
A skilled nursing facility is what many of us know as a nursing home. Residents receive round the clock medical care. Most facilities have a mix of short-term and long-term residents. Short-term residents may stay there just while they receive rehabilitation services after a hospital stay. Sending your parent to a nursing home is not failing! Sometimes, they need a high level of care.
Continuous Care Retirement Community.
These communities, usually private pay, and usually at the higher end of the cost spectrum, allow people to move into independent housing and then transfer to assisted living and or skilled nursing as their needs increase.
Living With You.
Some people move their parents in with them or move into their parents’ home. If you go that route, try to have separate bathrooms, discuss the financial arrangement first, and establish some boundaries for when you will be in daughter, caregiver, and self mode. You may decide morning coffee is a solo activity but watching Jeopardy is a family affair. Think about, and discuss, these things!
A Checklist for Choosing
Choosing the right facility takes thought and planning – but you don’t always have the luxury of time. Remember there is no perfect solution nor is there only one right decision. Quality of care is a major factor, but so too is availability, and, quite frankly, affordability. Your job as a caregiver is to make the best possible decision based on your individual circumstances.
Ask around for referrals. Your parent’s primary care physician, friends and relatives, staff at assisted living or a hospital, your local Council on Aging, are all possible sources of information. Then use the Nursing Home Compare tool from Medicare.gov to research safety and quality records.
Availability and Cost.
If you can, start looking before you think you need to. Many facilities have long wait lists. Ask if the facility accepts Medicaid as well as private pay. Is there a different wait list depending on your method of payment? Do they require several months of private pay before accepting Medicaid?
Is the facility close to you and/or other family members and friends? Maybe you should choose a place close to your office so you can drop by on your lunch hour or on your way home from work. Familiar faces and frequent visits can ease your family member’s transition to a new home. Can other family members easily get there so that they can visit too and give you a break when you need it? Speaking of visiting, are there set visiting hours or can you drop by any time?
Visit the facilities you’re considering and note what you see and smell. Are residents sitting in wheelchairs in the halls? Are they dressed or in pajamas? Is there a strong urine odor or strong chemical odor that may be masking other smells? Is there a receptionist watching the front door? Are side doors locked? Does the staff seem energetic or lethargic? Do they make eye contact and interact with residents and family members? If you can, sit outside during a shift change and observe employees as they show up for work. Are they dragging or do they have some pep in their step?
Quality of Life.
Can patients follow their own schedules or must they comply with routines? What activities are offered? Can you take your parent out of the facility for holidays and excursions? Do they offer services like haircuts, dental appointments, podiatry, and flu shots? Can your parent keep their doctor or will they see a facility-appointed doctor? Under what circumstances will the staff send your relative to the ER? How do they balance risk of falling with independence and autonomy? How are confusion, wandering and behavior issues handled? What is the philosophy on psych drugs and restraining patients?
Sometimes the decision comes down to what your gut is telling you. Trust it.
Professional services firm PwC estimates that the average lifetime cost of long-term care is $172,000 per person and that costs are expected to grow “enormously” over the next few decades. Funding for long-term care typically comes from one or more of four sources: personal savings, insurance, financial support from family, and Medicaid. A parent outliving his or her assets is a very real possibility. Medicare, the federal health insurance program for people aged sixty-five and older, does not cover long-term care, and Medicaid eligibility is based on income level. Many people discover that their parents have too many assets to qualify for Medicaid but not enough to sustain them for many years.
When it comes to paying for long-term care, I cannot stress enough how useful it is to consult an elder law attorney. Eldercare attorneys can help you understand your options for funding long term care including Veteran’s and Social Security benefits and how to protect your and your parents’ assets. They can draw up the paperwork for power of attorney and guardianship and assist with estate planning. They can explain Medicare, the Federal health insurance program for people age 65 and older. And they can help you apply for Medicaid. Many, but not all, nursing homes, or skilled nursing facilities accept Medicaid but often residents have to start paying from their own funds until they “spend down,” or run out of, their assets. A good elder law attorney can assist you through that process.
If you can’t afford to hire a professional to assist you, you can still get help. The business managers at the different facilities may be able to help with understanding payment options and financing plans. Also check local senior centers and Councils on Aging as many of them offer free legal and financial workshops.
Tips for handling a move
Don’t underestimate what a big deal it is to move your parents to a new home. It will take time for them, and you, to adjust.
Give it time, and maybe take some time.
It can take several months for someone to adjust to senior living. If you start to think you made a bad move, wait a week or two. Stay focused on the reasons you made the decision (safety, health, security, sanity). Take a personal day or two, if you have them, during and right after the move. Your parents may need a little extra support, and you too, may need some time to come to terms with the change.
Visit often, or not for two weeks.
Many experts will tell you to visit as often as possible. Frequent visits can ease any stress your parent may have that they will be abandoned or lonely. It might be easier for them to meet people at activities or in the dining room if they have a companion with them. Other experts will tell you to stay away. If your parent is calling you several times a day, staying in their room, and waiting for you to show up and keep them company, you may need to give them some space in order to encourage them to branch out. Don’t listen to the experts. Do what feels right for you and your parents.
Ask others to visit.
Ask nearby family and friends to visit your parent. Then brace yourself for unsolicited opinions about the new facility.
Just when you think you are over the hump and your parent is settling in, things will change. They will tell you they are lonely. They will decide they don’t like their new dining hall friends. They will ask to go home. These moments are heart wrenching but knowing that they are normal and that they will pass, can help get you through them.
Acknowledge the difficult parts.
Yes you want to paint the new move in a positive light, but don’t talk at your parents about all the wonderful new activities and people and opportunities. Listen to their fears and concerns and acknowledge them. Then help them get through it. They will be more likely to listen to what you have to say if they feel like you’ve listened to what they had to say.
Surround your parent with their personal belongings.
Moving to senior living usually means downsizing. The maple dining room table with two extension leaves may not fit in the new apartment. But what does fit are photographs of family and friends, favorite books, a familiar piece of artwork. If you need to downsize the bedroom set, you can still bring a familiar blanket and pillows. The kitchen may be new, but you can pack your mother’s favorite teacup.
Limit new things.
You may be tempted to furnish your parent’s new place with the latest and greatest in hopes they love their fancy new home. But limit new items. Moving into senior living is a major adjustment where everything is new – the people, the food, the routines. Don’t overwhelm your parents with a new phone or even a new coffee maker. Limit the number of new things they need to learn how to operate.
Be your parent’s advocate.
No place is perfect. You and your parents may see opportunities to improve something at their new home, but your parent may hesitate to speak up when they move to a new place. Do it for them – with a smile.
Build a team.
The staff should be a part of your team. Talk to them about your concerns and your parent’s concerns and actively enroll them in helping with the transition. Don’t assume they will notice what needs to happen – they are very busy. If your parent tells you they are too shy to go to the dining hall for dinner, or they forget when activities are happening, ask if a staff member can knock on their door and invite them. If the staff members know what you need, they should be willing to help out.
Set your boundaries.
Try to free up as much times as you can in the first few months after the move to help ease the transition but know that it is okay if you are not available. Your kids may need you. Your boss and coworkers may need you. And you need to take care of yourself. Determine what you are able and willing to do and then stick to your boundaries. Other people will tell you what you should do. Ignore them.