Navigating Long-Term Care with Professional Staff

Caregiver Action Network’ s Guide to Long-Term Care helps family caregivers navigate some of the challenges about long-term care head-on. This guide includes:

  • Navigating the Changes in Your Role as a Caregiver
  • Addressing Caregiver Guilt
  • Tips for Interacting with the Long-Term Care Community Staff
  • Tips for Recognizing Agitation
  • Resources for Family Caregivers

“So having that feeling that you cannot leave him alone, that you cannot leave the house. It was taking our lives away…”

– Dalel, caregiver for her husband

Dalel, caregiver for her husband

Navigating the Changes in Your Role as a Caregiver

  • Build relationships with the staff at your loved one’s long-term care community
    The staff at the long-term care community wants the same thing you and all the members of the care team want: your loved one to be as healthy and happy as possible. Building a relationship with the staff working directly with your loved one – nurses, aides, etc. – will make this transition easier for both you and your loved one. A few ways to do that includes:

    • Keep community staff informed of any changes to your loved one’s condition(s) or any ongoing therapies/treatments.
    • Provide any updates to appropriate staff following any medical appointments, specifically if your loved one is in an assisted living.
    • Provide staff with helpful information about your loved one, such as:
    • Specifics around when and how your loved one prefers to take their medications.
    • Tips to help deescalate any outbursts or challenging behaviors.
    • Tips on how to best communicate with your loved one.
  • Stay Connected
    • Identify who on staff you need to contact with any questions. Make sure that you’re directing the appropriate questions to those who can properly answer your question.
    • The nurse that works with my wife through most of the week is wonderful. She introduced herself straight away when we were moving her in, and before I left, she gave me the number to the nurse’s station so I could call if I wanted to know how she was doing or if there was anything I should bring with me when I came to visit.
  • Ask for Help
    • Transitioning your loved one to a long-term care community isn’t easy, regardless of how prepared you may be. Seek out support from family and friends, support groups, and/or a therapist so you can talk through these difficult feelings.
      • My mom and I both knew that moving Dad to a nursing home was for the best. It was just too much for her take on – caring for him, taking care of the house, and taking care of herself. I wasn’t prepared for how hard that decision would ultimately be and how I would feel like I was letting both of them down. Mom felt the same way – like she had failed Dad. I brought these feelings up to a social worker at the hospital right before Dad was discharged and she gave me the number of a therapist that has experience helping people in similar situations. Mom and I have been going to weekly sessions for about three months and feel so much better having someone outside the family to talk to.
  • Navigating COVID-19
    • Being a family caregiver during a public health crisis like COVID-19 presents many challenges – especially if your loved one resides in a long-term care community. Almost all long-term care communities have closed their doors to visitors to minimize exposure and keep residents safe. But what does that mean for you?
      • Figuring out a new way to stay in touch with your loved one, by using digital solutions like video chat, calling more frequently, or writing letters. It’s important to figure out what works best for your circumstance.
      • Coordinating regular updates with staff. In times like these, circumstances develop and change frequently, so it’s important to stay up-to-date. Online portals, such as MyOmniview are a great way to stay up-to-date on updates specific to your loved one’s medications.
      • Building and utilizing a support network for yourself consisting of friends, family, and others. The COVID-19 pandemic has had an emotional and mental impact on everyone and you don’t have to go it alone.
  • Bottom Line: 
    • My Loved One Recently Transitioned Into a Long-Term Care Community: 
      • Acknowledge where you are in the process and admit that sometimes you don’t know what you don’t know. You aren’t expected to be an expert in this particular process and by acknowledging this and asking for help, the professional team can direct you to the appropriate processes and channels that will help you organize your questions, information and the ultimate care of your loved one.
        • Nobody tells you where to start when you move someone into a long-term care community. My husband was diagnosed with MS five years ago and one of the first things his doctor recommended is that we find a support group. When we moved him 3 months ago, I swallowed my pride and reached out to a woman in the support group whose husband had been in a nursing home for a few years. I felt so much better when she said she had been in the same boat as me. I felt like I wasn’t alone.
    • My Loved One Has Been in a Long-Term Care Community for Years: 
      • Understand that even if your loved one has been in a long-term care community for years, as they age, their condition may advance or worsen, and there will need to be modifications to the approach of their care. This means modifications to your approach as a family caregiver. Use your regularly scheduled check-ins to evaluate changes and adjust accordingly.
        • Grandma has had Diabetes for as long as I can remember. She’s never had any issues but we noticed that her blood sugar was becoming a bit more difficult to keep under control. We brought this up to her Endocrinologist during a regular check-up and we discussed some minor diet changes that may help. Grandma was pretty excited to tell the staff about the new snacks she was getting to eat and we worked through a slightly new snack and testing schedule with the staff.

“I think my most difficult conversation would be telling my mom why she had to be in the nursing home versus staying home with me, because she knows I have a room for her when she visits, but when she asks me, ‘Well, why can’t I come home with you?’, you know, it breaks my heart, but I have to tell her, Mom, I’ve got to work and I’ve got a husband.”

– Judith, caregiver for her mother

Addressing Caregiver Guilt

One of the most difficult feelings to deal with as a caregiver, is the feeling that you should be doing more for your loved one. It’s the feeling that you have let down the person you care for. If your loved one is in a long-term care community, it may be something you experience every day and every time you visit. Knowing that you’re not alone and understanding where these feelings are coming from can help process these feelings. You’re doing the best you can, and that isn’t always the easiest

  • What is caregiver guilt?
    • No matter how much we have done as caregivers, we may feel we are not doing enough, especially when we were trying to balance our complex roles.
      • Mom and I had had many difficult conversations about moving to assisted living. We both knew that it was the best option. Her Alzheimer’s had progressed, and she wasn’t just forgetting to do little things anymore. I live in a one-bedroom apartment that is up 4 flights of stairs. I also work full time, so that I can help pay her expenses. Simply put, she just needed more care than I alone could provide. I would have given anything to be able to bring her home. I feel like I haven’t done enough for the woman that raised me.
    • One hospice and respite professional of 15 years, observed that it’s hard for most caregivers to recognize, let alone talk about, resentment over having to be the responsible one 24 hours a day.
  • What causes caregiver guilt?
    • The Loss of One’s Dreams
      • When illness or disability strikes, your vision of the future is turned upside down.
    • A Redefinition of Roles
      • A relationship established with one set of definitions now must conform to a new set. But you can’t synchronize everybody’s time clock, and you can’t control whether the new definitions that are established are compatible.
  • Navigating COVID-19
    • Not being able to visit your loved one during this time, especially in situations where they may need additional support, can lead to added guilt. You want to be there, but can’t – and that is difficult.
      • You’re not alone: other family caregivers with loved ones in long-term care communities are in the same boat. Online support groups and forums can be a way to reach out to others and provide mutual support.
      • Get Updates from Staff: Identify staff you can communicate with regularly for updates about your loved one, as well as any changes to operational policies.
      • Stay Connected: Do you typically visit your loved one on Saturdays? A phone call or video chat at that time may not only provide a much-needed sense of routine in a time when our lives seem anything but routine, but give some comfort and happiness.
        • Phone calls or video chats not an option? Send a card or letter the old-fashioned way.
  • Bottom Line: 
    • My Loved One Recently Transitioned Into a Long-Term Care Community: 
    • It’s important to continue to remind yourself that you are not alone in these feelings. Be sure you are connecting with others who are going through or have gone through similar experiences. This can mean talking to a friend or other family member, it can mean joining a support group or online forum or consulting a therapist.
    • My Loved One Has Been in a Long-Term Care Community for Years: 
      • Time can take a toll on you, particularly as guilt builds-up. It can seep into other facets of your life, including your work, your family, your relationships and areas that bring you great joy, like hobbies. Self-care is important for this reason, this includes taking care of both your physical and mental health. For more tips, check out CAN’s 10 Tips for Family Caregivers.

“If you ever have to make that decision where it’s just too much for you, first you have to come to the serenity that it’s the right thing for you to take care of him in the best way, because there may be a point you can’t lift him, or you can’t turn him to change him as much as he needs to be changed. Whenever that time comes, you have to find a peace enough to be able to do it for him, and then ultimately for you too.”

– Judith, caregiver for her mother

Tips for Interacting with the Long-Term Care Community Staff

  • Introduce yourself!
    • Let the staff know who you are and what your relationship with your loved one is. Knowing that you are a family caregiver gives staff the perspective they need and the information that they may need to communicate back to you.
  • Start Developing a Common Language
    • Whether you’re describing your loved one’s condition or talking about the ways you’ve supported your loved one at home, you and the staff may use different words to describe the same thing. Be as clear and descriptive as possible with staff to avoid any confusion. Ask for staff to explain any words or phrases they say that you aren’t familiar with.
      • Communication is the Key

        Activities of Daily Living (ADL)
        Personal Care
        Long-Term Care Communities
        Nursing Home/ Assisted Living Home/ Senior Living Community
        Family Caregivers
        Husband, Wife, Father, Mother, Son, Daughter
        Transfer Trauma
        Mood Swing or Sadness
  • Be patient!
    • Staff may have many residents they are looking after so they might not be available to answer your question(s) or address concerns right away. Be patient and know they will get to you as soon as they can. Ask yourself, if there’s a preferred communication method or portal that may make directing your question easier for both you and the care professional.
  • Ask questions!
    • Don’t be afraid to ask questions or ask for updates. Write down the things you want to discuss to make the conversations as efficient and effective as possible.
    • Make sure you are funneling appropriate questions to the staff member who can best answer your question and make sure you are utilizing any internal systems or processes that they may have in place for questions that may be sensitive in nature.
      • DID YOU KNOW?: Some long-term care communities have coordinated online portals or systems to make some things a little easier for you to manage. Omnicare, for example, has MyOmniview. Ask staff for information to get you started. MyOmniview lets you:
        • Keep up on top your loved one’s medications!
        • Manage billing and payments (including enrolling in autopay).
        • Receive annual enrollment reminders for insurance.
  • Express thanks!
    • Let staff know how much you appreciate their work to make your loved one as happy and comfortable as possible.
    • Building strong interpersonal relationships and expressing gratitude can build a lot of goodwill, which can be particularly helpful in stressful time.
  • Bottom Line: 
    • My Loved One Recently Transitioned Into a Long-Term Care Community: 
      • Understand that you are new to the professional care staff, in the same way that they are new to you. Take the same approach you would to nurturing other new friendships and relationships. It’s often important to meet people where they are and give them the benefit of the doubt. It’s also important to understand that most long-term care facilities have well-established schedules and protocols and communication channels, and knowing what these are, will help you to adjust during the transition of care.
        • My uncle has just moved into his new home and I’ve been learning the names of all the staff working with him daily. Just by having a five minute conversations after I visit – letting them know how the visit went – has made me feel so much more at ease.
    • My Loved One Has Been in a Long-Term Care Community for Years: 
      • It’s important to not lose sight of any changes or modifications that may be happening at your loved one’s long-term care community. Regular check-ins with the care team can help you monitor what these may be. These can be staff changes, possible changes in seasonal operations or any changes or transitions that may be shifting with the day-to-day care of your loved one. Knowing and anticipating these can help you augment your role as necessary.
        • I always make a point to say hello to any new face I see when I visit Mom. If there’s are new staff working with Mom, I have a bit of a “Get to Know You” cheat sheet of things I like to share so they can know more about Mom.

“That was hard. That was hard in the beginning when I put her in the nursing home. She would say – the first day when I took her – ‘You’re not just gonna drop me off, are you?’ I said, ‘Mother, absolutely not.’ So for two weeks I was there every day. And staff told me, ‘You don’t have to come every day.’ And I said, ‘Oh, yes, I do, I need to know that my mother is secure and comfortable, and is not going to be frightened.”

– Claudia, caregiver for her mother

Claudia, caregiver for her mother

Tips for Recognizing Agitation

Does your loved one have dementia? Agitation is common in individuals living with dementia, but can be difficult to recognize. This section of the guide will help you identify the symptoms of agitation and what the root cause may be, while addressing those challenging associated behaviors.

  • What is Agitation?
    • Agitation and other neuropsychiatric symptoms can be common if your loved one has dementia.
      • Up to 97% of individuals with dementia also experience experience some neuropsychiatric symptoms, such as NPS, agitation, apathy, depression, and anxiety.
  • Signs of Agitation
    • Patient must have at least one type of observed, agitated behavior, which can include:
      • Excessive motor activity: pacing, rocking, gesturing, repetitious mannerisms
      • Verbal aggression: yelling, talking very loudly, screaming, shouting, profanity
      • Physical aggression: grabbing, shoving, hitting self or others, kicking, biting, throwing objects, slamming doors, destroying property
        • One of the staff at my husband’s nursing home told me he had been getting more and more aggressive to staff. It seemed so sudden and I had no idea what could be causing it – or even more, how to help the staff.
  • What Causes Agitation?
    • Your loved one may experience agitation for a number of different medical reasons, medication interactions or by from circumstances that worsen a person’s ability to think. These include:
      • Pain, depression, or stress
      • Too little rest or sleep
      • Constipation, soiled underwear or diaper
      • Sudden change in a well-known place, routine, or person
      • A feeling of loss—for example, the person may miss the freedom to drive
      • Too much noise or confusion or too many people in the room
      • Being pushed by others to do something—e.g. bathe or to remember events or people—when dementia has made the activity very hard or impossible
      • Feeling lonely and not having enough contact with other people
      • Interaction of medicines
      • Misperceived threats
      • Fear and fatigue resulting from trying to make sense out of a confusing world
    • Ultimately, the person with dementia is experiencing a profound loss of their ability to negotiate new information and stimulus as a direct result of the disease.
  • Process of Identifying Appropriate Treatment
    • Because of this complexity, treatment for your loved one should begin with an assessment to rule out potentially reversible causes of agitation (environmental/situational causes).
      • Limit the amount of caffeine, sugar, and “junk food” the person drinks and eats
      • Try to distract the person with a favorite snack, object, or activity
      • Reduce noise, clutter, or the number of people in the room
      • Try gentle touching, soothing music, reading, or walks
      • Keep well-loved objects and photographs around to help the person feel more secure
      • Build quiet times into the day, along with activities
      • Try to keep a routine, such as bathing, dressing, and eating at the same time each day
      • Allow the person to keep as much control in their life as possible
      • Reassure the person. Speak calmly. Listen to their concerns and frustrations. Try to show that you understand if the person is angry or fearful
      • Behavioral and Non-Pharmacological  Treatments include:
      • Pharmacological Treatments:
        • Antipsychotics are moderately effective at reducing symptoms, but this comes at the price of side effects (sedation, orthostatic hypotension, ataxia, Parkinson’s symptoms, Tardive Dyskinesia, metabolic syndrome, stroke risk and FDA warning for mortality)
        • SSRIs (citalopram), mirtazapine and certain anticonvulsants can help but NOT benzodiazepines
        • There are a number of experimental therapeutics for agitation in development. Talk to your loved one’s doctor about new therapies becoming available.
  • Navigating COVID-19
    • As long-term care communities have amended their visitation policies to minimize exposure to residents, your loved one may be feeling stressed or anxious.
      • Talk to staff about any additional signs they may notice of your loved one experiencing additional agitation.
      • Develop a plan to stay in touch with your loved one while you are not able to visit in person.
        • Phone calls and video chats can be a great interim solution, as seeing your face or hearing your voice can help to put them at ease.
        • Send hand-written letters and cards that include photos that can be calming.
          • My grandma’s nursing home is on lock-down and I can’t visit. Residents have to stay in their rooms for most of the day. She does not handle changes in routine very well – she gets confused and angry. I have been chatting regularly with staff and they have been so wonderful about not only giving me updates but explaining how they are helping her adjust to new routines.
  • Bottom Line:
    • My Loved One Recently Transitioned Into a Long-Term Care Community: 
      • Understand that adjusting to these behaviors your loved one may be demonstrating can be emotionally exhausting to you as a family caregiver, this is why working closely with the professional care team is so important. Make sure you are using any integrated communication portals, such as MyOmniview, so that you can track any modifications that may be taking place. Having a mutual understanding of your approach to these behaviors will ultimately help to put you at ease.
        • It was shocking to me, because I had gone from seeing my Grandma every day and being able to see small changes in the day-to-day, to seeing her once a week, and her seemingly random outbursts seemed to come on so suddenly. I am so thankful for the staff – they kept me informed of these changes, so I knew they were more gradual, which was helpful in communicating to others, including family and the rest of her care team.
    • My Loved One Has Been in a Long-Term Care Community for Years: 
      • Depending on the circumstance and condition of your loved one, these behaviors can worsen or escalate. It’s important to check in regularly with the professional care staff to understand how these behaviors are being addressed and if there are any modifications that may need to occur.
        • Knowing Dad’s agitation was becoming more pronounced was difficult to hear, but I couldn’t be more thankful to the staff for keeping me informed of what was going on and how they were addressing it. It made visits with Dad easier because I knew what was going on and wasn’t surprised, and I knew what to do.