FWBP: Now that visiting restrictions are changing in long-term care, what do family members need to know?
Jaime Cobb: Long-term care is still learning what the new visitation will look like and each community is working out what is going to be best for their community. There are a lot of moving parts to this and patience will be needed, but across the board, our focus is getting families back in person to see their loved ones on a more regular schedule. The importance of more regular face-to-face visits to residents’ and families’ physical, emotional and mental health cannot be understated. We are all social creatures and the effects of being physically separated for around 200 days from family and friends would be hard on us all, especially those living with dementia or Alzheimer’s disease.
FWBP: As we are facing family-oriented holidays with Thanksgiving and Christmas, how do you recommend reacting to recent calls from Tarrant County Judge Glen Whitley and public health officials about keeping gatherings small?
Cobb: While public health officials have recommended keeping a safe distance from one another, the lack of closeness could be confusing for your loved one, so be sure to be safe while also being caring. That definitely means doing your very best to avoid unnecessary groups or gatherings in the several days before your visit so you can be strong and healthy when you visit any long-term care facility. By keeping yourself healthy, you are also protecting your loved one, their fellow residents and the staff that cares for them.
FWBP: What can family members expect when they re-engage with their loved one in person?
Cobb: Expect a flood of emotions; some emotions might conflict like joy and sadness. Also, families should understand that their loved one with Alzheimer’s disease or another dementia are eight months farther into the disease. There will be changes just because of the disease process, but you may also see changes because of the effects of being isolated for so long. Some changes you may have seen if you were able to FaceTime or do a window visit with them previously but there might be other changes you didn’t see. I am talking cognitive and physical changes. Much of this depends upon the stage of dementia they were in back in March when the quarantine began, so visit with the appropriate person at the facility to ask about details of their mental and physical condition and concerns.
FWBP: How should family members expect to be received by their resident? How should they respond?
Cobb: I think most people will be happy to see their family, even if they can’t place exactly who they are to them. Visiting with friends and family is usually a joyful occasion. However, some people may have a hard time with a longer visit. People with dementia usually do better in shorter amounts of time. A long visit can be very tiring and cause stress and they may start to withdraw or become agitated after a little while. That is okay. The disease has made it harder for them to understand and process what is happening. Also, understand they may not act precisely the same way as they used to. Life has changed for them, so they have changed.
FWBP: And what should the family members expect?
Cobb: While you are expecting to experience smiles and hugs, be prepared for an entire range of emotions. You, the family members, may find yourselves crying because you have finally connected with your spouse, parent or grandparent. You might feel guilt and grief because of the lost time with this important person in your life. You are likely to feel a burden from something you did not cause. The gamut of emotions you may experience is expected. This is a normal response to not normal times.
FWBP: What happens if the visit does not go the way I expect to?
Cobb: Your loved one may ask you to leave, so go grab a cup of coffee and return with a happy attitude and start again just five minutes later. They may even fall asleep. If that happens, give yourself permission to leave. After all, we must accommodate the disease that they can’t. Also, be prepared that they may be satisfied with a brief five-minute visit or they might get upset. It may take time for them to get used to us returning to visit with them again.
FWBP: How should family members break the ice to start the visit?
Cobb: Bring things that are immediately familiar to them, such as a favorite quilt, photos of them with the family and with their friends, and definitely bring music on your smartphone that you can play – music from your loved one’s favorite years. It’s not unusual for family members to just sit there and enjoy this “music of their life” together. If they like ice cream, bring their favorite flavor, but don’t be surprised if that treat is no longer their favorite. If that choice has changed, be flexible and remember for your next visit.
FWBP: What are the most important “Do” elements for that initial visit?
- Come in with big hellos; “I am so happy to see you!” and leave with little goodbyes; plan around an activity you can leave them with that is distracting like mealtime.
- Be prepared to go with the flow and validate their world.
- Speak gently and calmly and bring them into the conversation.
- Speak with enough volume and emphasize clarity because your mask muffles your voice.
- Bring familiar items, photos from their past to engage them with. When showing photos, either show them actual prints or take an iPad or laptop. As dementia progresses, seniors have a more difficult time seeing the small screen on your smartphone.
- Have a plan to talk with or meet with other family members or friends after your first few visits to talk through your emotions and experience.
FWBP: How about the most important “Don’t” elements?
- Don’t ask if they remember you or if they remember specific events. This is a friendly visit, not a test.
- Don’t get frustrated if they are anxious, if they can’t remember your name or recall certain events. We must go to their world and connect with them in the way they can connect.
- Focus on making this a good visit. Leave your expectations and agenda at the door.
FWBP: How does a family follow up between visits?
Cobb: First, be patient and gracious with the community and staff. They are working with each family right now to schedule safe visits and have been working hard to care for your loved one during the quarantine and the changing restrictions. Continue to keep in touch as you have previously been with your loved one. Also, consider the value of care packages to both the staff and your family member. It’s an unexpected surprise that shows your love and support. We can all use the extra love and support right now!
FWBP: Are there any special Thanksgiving or Christmas reminders you have?
Cobb: Consider bringing in familiar aromas such as scents of Thanksgiving dinner (the scent of turkey and dressing and pumpkin pie) and during the Christmas season, your family might even sing favorite Christmas carols together. Music helps calm your loved ones and bring back fond memories that can create a positive experience together.
FWBP: What is a final reminder for us?
Cobb: Big Hello. Little Good-bye. The more excited you can make them to see you, the better your visit will be. Enjoy your time together and remember that while they can’t see your face, they CAN see the smile in your eyes, and they can feel the love in your voice. Let them know that you look forward to seeing them again and set a date they can count on for your return. End your visit – if appropriate to the situation – with hugs and kind words.