by Amy Natt, MS, CMC, CSA
Q: My wife was diagnosed with dementia about a year ago, and she is still very independent in most of her activities. Recently, I have noticed that she does not want me out of her sight. She stays by my side when we are out and follows me from room to room when we are at home. This can be difficult to manage sometimes. Can you offer any suggestions?
A: People who have some type of dementia often demonstrate a behavior called shadowing. According to the Mayo Clinic, shadowing occurs when the person with dementia attempts to keep his or her caregiver in sight at all times, following them like a small child would a parent.
Shadowing can leave the caregiver feeling smothered and their personal space feeling violated. Think of yourself as a security blanket for your loved one. She feels safe when in your presence and insecure, anxious or fearful when she does not see you. You are familiar in a world that is becoming increasingly unfamiliar as the dementia progresses. This behavior is part of the disease, not something your wife is doing intentionally.
Caregivers need to find balance. You want your wife to feel secure, but you also need time that is just for you to reset and rejuvenate.
It is important to create a predictable daily routine for her. A part of this routine can be a typical time to wake up in the morning and go to bed at night. As a caregiver, you may be able to determine her typical pattern and get up an hour before her, or have an hour after she goes to bed that is your time. Planning activities she can engage in during the day is helpful as well. Write these out daily on a white board and display the schedule for her to see. Fear drives many of the changes in mood and personality those with dementia experience, so you want to create a calm and reassuring environment.
Consider these tips to try and help with the shadowing behavior:
- Use written notes. Leave a note to let your wife know when you are leaving and what time you will return. Make sure she has a clock that is easily readable.
- Try using a timer. When you need to have some alone time, like going to the bathroom, or running to the store, set the timer and tell her you will be back as soon as the timer dings.
- Use reassuring statements. Say, “You are safe,” “I love you,” “Everything is OK” or “I am here for you,” and try writing them down for her to read or recording them for her to listen to over and over.
- Attend a local support group. These groups are where you can have conversations with other caregivers to find out what is working for them.
- Try scheduling your “private time” at the same time daily. If your loved one is really anxious about you leaving, introduce a friend or caregiver who can be there while you are gone. This may be hard at first, but typically will transition into a relationship she can count on and feel secure in.
- Create meaningful activities for her to do. This may be folding laundry, setting the table, going on a walk, volunteering (with a friend or caregiver helping), working on a puzzle, organizing or sorting items, or planting a container garden, etc.
- A snack can provide a nice break. If you are headed to shower or work in the garage, try a healthy snack as a diversion.
- Music can be very beneficial. Make a digital playlist of her favorite songs and play them to provide stimulation and something familiar she can relate to and enjoy.
- Create a memory book. Use familiar photos and items she can look at, hold and enjoy. Label each picture clearly with names and places.
- Keep some picture books on hand. There are many great books that are primarily photography with small written statements about a variety of topics. Find one that relates to some of her interests.
Create a tool box of ideas. Keep in mind that the approach that works one day may not work the next, so use trial and error and have a variety of tips in your toolbox that can be tried on different days. Remember that the shadowing is a reaction to an underlying feeling of uncertainty, and try to provide extra reassurance. Use touch and kindness to foster feelings of security. As a husband and caregiver, you need to take time for yourself. It is difficult but very important to find the balance.
Shadowing can create a feeling of loss of personal space, but you should not feel guilty about needing that space to take care of yourself. Reach out to available resources, and create the support network you will both need throughout this journey.
Readers may send questions to Natt, an Aging Life Care ProfessionalTM, certified senior advisor and CEO of Aging Outreach Services. She can be reached at firstname.lastname@example.org