Despite your best efforts to keep your loved one with Parkinson’s disease (PD) at home as their disease progresses, a move to assisted living or a nursing home may be necessary when their symptoms become advanced.
The following steps can help you navigate the emotional and practical elements of your loved one’s transition to a care center.
1. Understand that it’s normal to need extra support to cope with how you feel about the move. The time surrounding your loved one’s move can be overwhelming, and most families experience a wide range of difficult emotions.
- It can help to say your feelings out loud or write them down, as “getting them out” can make these feelings lighter over time.
- Try responding to your feelings with compassion that you are doing the best you can and that you made the best decision available to you.
- If you are struggling, turn to people you trust, other care partners, or a counselor, and let them know you’re having a hard time.
2. Know that this move will be a learning curve for you, your loved one and care center staff.
You are learning how things work at the care center and who handles what. Your loved one is learning new faces, adjusting to surroundings and routines. The care center staff is trying to understand the care needs of your loved one, while also caring for other residents.
These adjustments will take some time for everyone. Use the Parkinson’s Foundation Aware in Care kit to help advocate for your loved one’s needs. Try to be patient with yourself, your loved one, and the care center staff during this transition.
How do you choose an assisted living or nursing home?
Listen to a Parkinson’s expert the topic in our podcast episode, Best Practices & Guidance: Navigating Assisted Living and Skilled Nursing Facilities.
3. Build and nurture a relationship with the care center staff.
Make time to get to know the entire staff and their role on the care team. Try to be kind and encouraging and give them the benefit of the doubt, praising more than criticizing, as you will need to partner with them to support your loved one.
If changes are needed, prioritize the most important ones, and acknowledge progress. Strive to maintain a positive relationship with the staff, but don’t be afraid to address problems and involve others when advocating for your loved one.
4. Help the staff get to know your loved one on a deeper level to improve care and connection.
It is important for your loved one to feel known by the people in their new home.
- Share pictures, stories, and memorabilia.
- Personalize their room.
- Put together an “about me” album or document that describes your loved one’s preferred name, hometown, names of loved ones, work history, hobbies, interests, preferences, favorite music and TV shows, and accomplishments.
All of this helps to ease conversation, build connections, and individualize care.
5. Use discretion with what you bring to the care center.
If possible, avoid keeping items in the care center that you cannot replace. Label your loved one’s items. Consider creating replicas for them to enjoy, like copies of favorite photos, a bedspread that looks like a family quilt, decorations that look like favorite items. Substitute valuable or sentimental jewelry with similar items of lessor value.
6. Be flexible with your visits.
Visits might be stressful at times, so give yourself permission to end a visit sooner than you had planned if you are feeling overwhelmed. Similarly, pay attention to cues that your loved one isn’t up for a visit. Many people feel pressured to spend a certain amount of time with their loved one in a care center but in most cases, the quality of time spent is more important than amount of time.
7. Focus on making a visit meaningful.
Consider new ways of connecting with your loved one. Share stories, recount fond memories, and ask questions to keep help them feel connected to their identity and history.
- If your loved one is not especially talkative, bring an activity or item to focus the visit around or incorporate sensory elements to your time together.
- Bring a pet if permissible, a craft, or a plant.
- Share a photo or story about someone they know.
- Play their favorite song or bring a favorite food or drink.
- Take your loved one outside for fresh air if possible.
- Helping with small care-related tasks, such as nail care, hair care, make-up, shaving, or applying lotion, can also foster connection.
8. Work with the staff if your loved one has a hard time when visits end.
If your loved one struggles with your leaving, work with care center staff on a plan. Some families find their loved one has an easier time with a visit ending when there is a distraction, like the beginning of a meal, a program or activity, or a care-related task.
If your loved one is confused about why they are not leaving with you, give them a reason for your leaving that they would support, like “I have to run some errands before dark,” or “I’ve got to get back to work.”
9. Coach other family members or friends about how to support you and your loved one.
Let your network of family and friends know that your loved one would appreciate phone or video calls, cards, visits or care packages with specific treats. Give them tips for a successful visit. Share photos and stories about how your loved one is doing, as well as how you are doing, to give them an opportunity to offer you both support in some way.
10. Reconnect with cherished relationships and activities.
If caring for your loved one has been your main focus for months or years, you might feel tired and lost after they move. Take the time you need to rest and then slowly re-engage with the people and activities that are meaningful to you. While it might seem forced at first, caring for yourself by reconnecting with your interests and other people is important for adjusting to this phase of your caregiving journey.