Caught by surprise… twice

Earlier this year, a long-time patient moved out of his home and into a memory care facility. It was a good decision. The right move at that stage in his illness. He is in a safe, secure and caring environment as he could no longer live safely at home. But at the clinic something surprised us- his move touched us deeper than we expected. We have grown close and feel like we are part of his family. Like them, we are relieved that he is safe and at the same time experiencing a range of emotions. We are human. Some feelings come to the surface that we remember from our own family members’ dementia journeys.

It’s a time of high emotions and stress. Sorting out and naming the feelings you are going through can help. Here are a few of the more common- and very normal- feelings our families go through when a loved one moves out of the home into a care facility:

• Relief. That there won’t be a middle of the night crisis. That you finally have time to shower without your loved one falling and getting hurt.
• Guilt. You never thought this day would really be here. You may have checked in on your loved one daily, or cared for them round the clock for years. You worry that they could feel abandoned.
• Loneliness. The house is so quiet. Now there is time. To think. To reflect. To mourn and grieve—this may the first time you’ve had “time” since your loved one’s diagnosis. “Caregiver” might even have become how you identified yourself, your “purpose”. Now what?

We continue to walk alongside his strong and loving family on this difficult journey. But in talking to them, and other MCC families, we realized something. When we looked for the practical tips and support that caregivers desperately need in the first hours and days after moving their loved one out of the home it was just not there. Our second surprise… the lack of sources for concrete strategies to assist with this major life transition.

As usual we learn the best strategies from our clinic families’ along with our personal experiences. Every patient is unique and not all tips will work for all people. The first 6 weeks after moving into a long-term care facility is a major transition for the patient and family. Give it time. The key, as always, is to bend, not break.

• Meet ahead of time with the director of the center to get acquainted. Ask how they prefer that you communicate that first week with them for daily updates- phone or email? (what is the best time to reach him/her, best number to call?)
• If you can afford it, a 24-hr companion for a few days can help settle and work through agitation and provide continuity in a time of great change, in addition to communicating with you more frequently that some facilities can.
• Give yourself and your loved one 6-8 weeks to adjust to new arrangement. Those first weeks are a roller coaster of emotion for both of you and can be smoother than you thought or more difficult. Prepare for the difficult.
• Do not call multiple times/day if not needed. Log questions and have them handy when you check in at scheduled times.
• Decorate your loved one’s new room/door with recognizable items, bedding and photos from home.
• Post on the door to their room your loved one’s “title” from a time in their life where they found respect and dignity- they will often respond when addressed as such. Ex. Captain Smith, Chief Stuart, Major Jones, Principal Klein, Doctor Clark. Let the staff know to use this expression of respect.
• Create and leave a photo book with large-print family names. Remote memories will be stronger than recent.
• Ask the facility director and staff to provide individualized attention if possible. Think back to the patient’s earlier profession and hobbies and bring them back as stimulating activities (stuffing envelopes, adding machine or journal, packing boxes, watercolor art kit).
• Keep busy with one planned outing per day- grocery, lunch with a friend, walk or exercise class, haircut, an overdue check-up with your doctor.
• Ask friends and family to visit him or her in the coming weeks. Recommend that they plan short visits, stay on property, and to call you after the visit with an update.
• When you visit, never rush. Leave all expectations and emotions at the door. Breathe deeply or take a walk to clear your head before entering. You’ll get better at this as time goes on but your loved one will take your cues of stress or sadness and reflect it back in agitation or anger.
• Visits should be brief and pleasant, and on property. Changes in scenery can be disruptive and disorienting, instead of fun and comforting.
• Leave quietly when they are involved in an activity. Do not sneak away but also do not drag out goodbyes.
• Be constructive and cooperative with the facility care team. Feelings of anxiety, regret and guilt should not be vented on the staff. Your experience, and more importantly your patient’s experience, depends on an amicable and respectful relationship with those working with them everyday.

Everyone’s adjustment after moving out of the home will take time. But it will happen. Preparation and flexibility, along with communication between families and your care team will help smooth this road. Remember- we are on this journey together.