Ask the Expert – Amy Natt

My mom was recently placed in a facility, and my dad is struggling with how often he should visit her. She has advanced dementia and often does not realize where she is. When he goes to visit, she begs him to take her home. It’s very hard on both of them. What do you suggest?

Placing a loved one is a very difficult but sometimes a necessary decision. People will ask, how will we know when it’s time? That answer is different for each person but often it comes down to safety and the care that can be provided in the home. The stress placed on the spouse (caregiver) can jeopardize their own health. Placement may be necessary to ensure they are both getting the care they need.

When you make the decision to place a loved one in a care facility, it is important to acknowledge that there will be an adjustment period for everyone involved. Once your loved one is placed, it is common to second guess yourself. Suddenly the burden seems less, and it feels more manageable but in reality, it is the change in situation that has helped. Mom or dad get a break and feel ready to be caregiver again.  Know that this is normal and try to stay the course and work through the challenges and emotions involved. Give both mom and dad time to settle into a new routine. The facility is getting used to your mom and her routines, just as your mom is adjusting to new surroundings, and your dad to his new role.

One of the big shifts for your dad is going from primary caregiver to part of the care team. This may cause guilt and create a sense of loss for him. The facility staff are now primacy care providers, but certainly your dad remains her number one advocate.  He must navigate how often to visit, what to do during visits and how to leave without upsetting your mom. These are all difficult and new to him, as well as very unique to each situation. There are times the facility will request time to let your mom settle into her new home. They may ask him to stay away for a few days or a week, to help her adjust. Other times, he is key to her adjustment, and they may want him there routinely. Talk to the staff and ask what they recommend based on how she is doing. If your dad needs a break, give him permission to take it, and let the staff know he will not be coming for a few days. There is no wrong answer. Sometimes it’s trial and error. There are good days and bad days. That’s okay.

Individuals with dementia often ask to go “home” and may or may not recognize what home they are looking for. It could be a childhood home, or she could just feel unsettled and not be able to express why. Try to surround her with familiar items and continue to reassure her that this is home. Continue to point them out to her, “this is your favorite throw”, “here is our family picture.” You might also try walking her around the building and then going back “home” to her room. If the transition continues to be difficult, try leaving during an activity, snack or mealtime, so your mom has something else to focus on. Ask a staff member to help redirect her just before your dad leaves. He can also choose his words when departing from the visit and say something that might be more reassuring, like “I’ll see you very soon” or “I have some work to do, and I’ll see you a little later”, “I’m going to run some errands, but I will come back later.” It may be the word “goodbye” that is the trigger for her.

This is something that can be monitored. If behavioral interventions don’t seem to be easing her distress, talk to her physician about reviewing her medications. Could she be experiencing depression or some other medical condition. Is she eating, sleeping, or experiencing any other changes that should be addressed? All of this can impact her ability to transition into her new environment.

My last piece of advice is to pay attention to the good days, the good visits. What made it good? Did they do something together? Time of day? Length of visit? If you can help him focus on what’s going right, it will be easier to try to develop a routine that provides them with the best opportunity for a good visit. Some days will just be off but try to find her best time of day and set a time limit to the visit. An hour is a good starting point. As he has some success, he can determine how many days a week to visit. Again, this is different for everyone. Some families insist on daily visits, while for others a couple times a week works better. Offer to go in his place to give him a break.  This is no magical answer. Dementia is hard. So, just provide him with the reassurance that he is doing his best.

Seeking Care for a Loved One

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