Long-term care planning

Some individuals after a brain injury will need long-term, constant or near-constant care.

Topics in this section include:

What long-term care is available?

There are two main types of long-term care available.

Home care
Home care means the person with the brain injury can live at home with part-time or full-time care. This can be done by a professional caregiver from a company or a friend/family member. Home care can include meals, bathing, dressing, therapies, and other activities of daily living (ADLs). Access to a professional caregiver will vary by region in Canada. This is a fee-based service, and while there may be some options for coverage from insurance, you should check the details of the person’s policy. Doctors on the medical team and rehabilitation specialists will have working knowledge of personal care workers and professional caregivers in the area.

Benefits of in-home care include:

  • The person gets to stay in a comfortable and familiar environment
  • Flexibility in terms of the kind of care they receive
  • Control over things like diet, schedules, and personal hygiene practices

On the other hand, home care comes with challenges for you as a caregiver.

  • More stress and demand placed on the caregivers – particularly if you are the caregiver who also lives in the house
  • Changes in family dynamic
  • Loss of personal space if they move into your home.

If you’re planning on being a caregiver for a friend or family member, you will need to understand the changes you will experience and the importance of caring for yourself.

Work with an occupational therapist

Occupational therapists help people to engage in the activities they need or want to do. Occupation refers to all the things we do in our days, including self-care (e.g., sleeping, showering, getting dressed), productive activities (home maintenance, work, or school) or leisure activities. An occupational therapist may work with survivors to help them redevelop skills needed to complete activities of daily living (ADLs). They can also do home evaluations and recommend changes to how they perform their activities of daily living, or changes to the environment, that will make the home more functional for the person with a brain injury.

They will start with a functional assessment of the survivor and the environment – identifying potential barriers affecting how one manages their activities of daily living, and solutions to those problems. Caregivers are involved in occupational therapy sessions as well. This is so you can also adjust to the person’s new ways of completing activities of daily living and the new adapted environment. Occupational therapists will help you both set goals so that you are working on the things important to you and can monitor your progress. This is especially helpful after someone has just left a hospital setting.

Renovation Funding

If your loved one has mobility issues, the home they will live in may need renovations to be accessible. There are renovation grants across Canada for which you can apply.

Long-term care homes
In some cases, a person’s best option for ongoing care is a long-term care home. This could be because the care needs are too complex to be cared for at home, or a family caregiver is in a position where they can longer provide care. It’s important to consult with the healthcare team and have family discussions about this option, so you all come to the right decision with the person with a brain injury. There are some specialized homes for those living with a brain injury: these homes have limited beds and residents often live there for the remainder of their life, resulting in long wait times.

Many long-term care facilities are designed for seniors with changing abilities or persons with disabilities who have complex needs. They offer a safe, caring environment for your loved one where their medical needs are met. One of the challenges with long-term care homes is the mix of patients. Due to limited beds, it is not uncommon for a younger person with a brain injury to be placed with a senior with dementia or Alzheimer’s. This can cause limited socialization and engagement opportunities. There are also a limited number of activities at long-term care homes that may not interest or engage the person with a brain injury. You may have to look into external socialization to make sure that your friend or family member has activities that are more appropriate for their age and abilities or advocate for activities that will fulfill this important everyday need.

Public vs. private long-term care

Government-subsidized long-term care is the most affordable option for many people. The governments will pay for personal and medical care, while residents are responsible for accommodation costs (room and board). Accommodation rates are set provincially, so differ between each area. Publicly funded homes tend to have long wait lists due to a shortage of available housing. Wait lists are also dependent on your area.

Private long-term care facilities have no subsidies, which means all monthly costs are taken on by the resident or their family. These costs will vary depending on the medical services offered at the facility and the type of room. Private long-term care is the more expensive of the two options.

How do I choose a long-term care home?

There are several factors to take into consideration when choosing a long-term care home.

Location
Many people entering long-term care ideally want to stay as close to home or family as possible. Depending on what the long-term care home offers and other factors on this list, you may find that your top choice is a facility further away. You and your loved one should first decide on the importance of location.

Are both of you comfortable with a greater distance between you? What about the rest of their social circle and family? Are other factors, like rehab affiliations or availability, more important?

Once these questions are answered, you’ll have a geographical radius within which you can make your decisions. How close is the home to relevant amenities, such as outdoor space, coffee shops, etc.?

Eligibility
Eligibility requirements for long-term care differ between the provinces and territories. They are contingent on factors such as age and the facility’s capabilities.

Availability
There’s a strong possibility that a room/bed won’t be available right away – particularly in public long-term care facilities. When that’s the case, you will be put on a wait list.

Availability information by province/territory

Wait times for public facilities by province/territory

Wait times are specific to individual homes and may not be collected or shared publicly.

If there is a wait time, your loved one will be kept in the hospital or in short-term care until the bed in long-term care is available or alternate arrangements are made. Temporary home care may be necessary if the wait times are months-long.

Cost
Another big consideration when choosing a long-term care home is cost. Public long-term care facilities receive government funding that covers most of the costs associated with the medical and personal support part of care. Residents are responsible for accommodation costs. Accommodation costs commonly cover room and board and are decided by the province.

Make a budget

Long-term care costs a certain amount each month, so you need to figure out how much you or your loved one can afford. Things to factor into your budget include:

  • Savings
  • Whether or not you will be contributing to long-term care costs
  • Additional personal costs. Some things aren’t included in your long-term care – for example, haircuts, personal products, and clothes.

If you want extra assistance with planning, ask a family member, friend, or banking professional for help.

What will insurance cover?

General insurance plans do not cover long-term care. Long-term care insurance policies are available but cannot be purchased and used after the brain injury has occurred. Here are the specifics of long-term care insurance policies.

Subsidies

In some areas, if you cannot afford basic accommodation costs, you may be eligible for subsidies from the government.

Are there additional costs?

Long-term care facilities may have optional or additional products and services that are not covered by the accommodation fees. These will differ from home to home, but some examples include:

  • Personal hygiene services – hairdressing services
  • Personal products you want outside of the ones offered by the home – i.e. a brand of shampoo or toothpaste
  • Extra entertainment options outside ones provided by home – private telephone, television, etc.

When speaking with a potential long-term care home, make sure to ask about exclusions when you discuss the accommodation rate.

Reputation
It’s important to collect information about the long-term care facilities you’re interested in before making any commitments. You can ask medical and rehabilitation professionals in the health community about long-term care facilities. You can also ask to speak with residents with a brain injury. Some questions to ask include:

  • Are they happy in the long-term care home?
  • Do they feel good/healthy? Please note some residents with brain injury may be experiencing effects that impact their physical health.
  • Do they feel like part of a community?
  • Do they participate in social activities?
  • What do they like most about the home?
  • What do they like about the staff?
  • What is a typical day like?

Some provinces/territories provide licensing, accreditation, and reputation information online.

Staff
The staff at the long-term care home will be an integral part of your family member or friend’s life. As such, they should feel both comforted and safe with all the staff. Ask to meet with staff who would be involved in the care of your loved one. This includes nighttime staff. Have a list of questions ready that covers the following areas:

  • Their work experience and education
  • How they would handle certain behaviours from your loved one
  • How they would make sure your loved one feels respected and valued
  • How they and the home provide a positive environment
Environment
You want to make sure that your loved one is in a positive environment. The first step is to ask for a tour of the long-term care home. While you’re there, ask questions.

We’ve created a comprehensive guide of questions to ask when selecting a long-term care home.

  • Do they have everything needed to address your loved one’s medical needs? Make sure to check if they have access to each therapy
  • What physicians work with the home?
  • Can rehabilitation therapists that work outside the facility come to continue treatment?
  • Is there a safe outdoor area?
  • How are emergency paths and exits identified?
  • Is there a policy for physical restraints?
  • What are the rules surrounding family visits?
  • Are family members able to stay overnight in extenuating circumstances?
  • What supports are in place for family members?
  • How are meals served?
  • Are there assistive programs for those who need help eating?
  • Can we bring in our own food? What kinds of activities are there?
  • Are there people who can help with appropriate social interaction?
  • Are there any scheduled outings?
  • If a person isn’t easily able to leave their room, are activities brought to them?
  • What is the cleaning schedule?
  • Are there washrooms in every room?
  • Are any bathrooms shared?
  • What furniture is provided by the home?
  • What can be brought in?
  • Is there a TV, phone, Internet, etc.?
  • How is the room temperature controlled?
  • Are there hair cutting services available on-site?
  • Are there any additional charges?
  • Are accommodations made for religion?

Survivor mental health

Survivors can experience mental health challenges after their brain injury. This includes but is not limited to feelings of anxiety, depression, psychosis, and even suicidal thoughts.

These feelings can be brought on by:

  • Isolation
  • Poor physical health
  • Relationship changes
  • Significant life change – including a new living environment
  • Stress

Many of these risk factors can be connected to the transition to a long-term care facility.

Often in a long-term care facility, your loved one will not be among peers or people with a similar disability. This can lead to feelings of isolation or loneliness.

The risk of social isolation is that feelings of anxiety or depression will increase, leading to less desire to interact with others, complete rehabilitation, etc. It becomes difficult to break the pattern.

I feel guilty about putting my loved one in long-term care

This is a common feeling for many people who must make this difficult decision – particularly if they must make this decision on behalf of someone else. There is a stigma surrounding long-term care that it should be a last resort, or that it feels like ‘abandoning’ your loved one. This is not true.

Long-term care homes offer a safe, supportive environment for people who can no longer live at home. These facilities address their medical needs and give you peace of mind. The key is finding the right long-term care home that works with your friend or family member’s specific needs.

Create an adaptable long-term care plan

You may find that over time you are not able to care for the person with the brain injury. You may become unexpectedly ill, your family circumstances may change, or the person’s needs could become more complex. Your long-term care plan for your friend or family member should include what steps to take should that happen.