If visiting with and talking to extended family members unsettles my father, who has Alzheimer's, should we continue while he still remembers them or stop?

7 answers | Last updated: Nov 27, 2016
The sign lady asked...

My father in law was recently put into a nursing home for Altzheimer's, and for the first month or so seemed excited about the whole thing.  Now that the new is wearing off he is ready to go back "home" and is expecting my husband to take him home when we go to visit. It seems that when he speaks to members of the family it really unsettles him. For instance, last time we went to see him, my husband called his uncle (dad's brother) and they were talking about moving to a different town, etc. and ever since then he has been talking about going home.  My questions is, which is better?  To not let him talk to extra people, or take visitors to see him, or to allow him to see them as much as possible before he forgets?  It seems to upset him more than help. My dad and my father-in-law have birthdays one day apart and we always celebrate them together.  We are planning to go and have aparty with him at the facility, but I just feel that this might be a mistake considering the mental state he is in right now.  My dad is the same age and they have always hung out together, so I think it might unsettle him when we leave without him.

Expert Answers

Beth Spencer is a social worker in Ann Arbor, Michigan, with more than 25 years of experience with families who have a member with dementia. She is coauthor of Understanding Difficult Behaviors and Moving a Relative with Memory Loss: A Family Caregiver's Guide. Previously, she directed Silver Club, early-stage and adult day programs serving individuals with Alzheimer's disease and related illnesses.

Helping people with dementia adjust to a move is always tricky and very individual.  For your father-in-law it sounds like reality has set in and he wants to go home now.  Think about what you, other family, and staff are saying to him.  He is most likely getting mixed messages.  It can be helpful to figure out what is most likely to reassure and comfort him, write it down and ask everyone to try to respond similarly.  Of course this raises issues about truth and lying, so you may want to find something that is a partial truth.  For example, would it be helpful to remind him that he is there for treatment (which is true but does not address the long term)?  Or that he is there because there are lots of things to do and people to be with, which was not there at home?  Telling a person the whole truth – this is where you are going to live from now on – can sometimes make them very angry or plunge them into despair.  Only you and the family can gauge what is going to work best for your father-in-law, but you want to help him feel as comfortable as possible.  Do not tell him that it is temporary if it is not; that will only backfire later.  

If visitors are unsettling to him, then I would recommend talking with the visitors and helping them think about what to say or not say.  To deprive him of celebrations or visitors seems cruel, but you want to find a way to make them less upsetting.  Sometimes it is helpful to limit the number of people.  For some folks with dementia a lot of people and noise is distressing – they can’t handle that much stimulation – and it increases agitation or distress.  

Ask the staff to help with good-byes.  It's often difficult for the person in residential care to see everyone leave while he remains behind.  Sometimes timing visits is helpful.  For example visit before a meal or favorite activity and have him go to lunch while you leave.  Or ask a staff member to help by distracting him or asking him to come do something while you leave.  Also ask staff how he is after visitors leave.  Sometimes the resident begs family to take him home, but the moment they are out of sight, the whole memory and emotion disappears and they are fine.  It can be comforting to family to find out what happens after a visit.  

If you want still more information, you might look at a book I coauthored called Moving a Relative With Memory Loss.

Community Answers

The caregiver's voice answered...

Beth Spencer's response is spot on with my experience.

I will add; however, that as the disease progresses, your father-in-law will progress beyond (below) this stage and no longer feel a need to return "home."

Please continue with your party plans. These gatherings are as important for your f-i-l as they are for shaping the memories your family will share once your f-i-l is gone.

One other thing...after I placed my father in a nursing home, at the end of each visit, I never said, "Good bye." I only said, "I'll see you later." In his mind, I could be gone for 5 minutes and it felt like a week...sometimes, I could be gone a day, and he thought I was gone 5 minutes. The brain diseased by dementing illnesses plays tricks like that.

Daizie answered...

My mother does the same thing. This last time I said I had to go to her room for something. I left and signaled the recreation person I was leaving. It helped ME so much more NOT to have her start in saying I will never forgive you for this and take me home now. I didn't leave as upset as I have been before. She went to dinner and forgot I had been there.

Joyg answered...

Talking Points for .........: I posted an 8 x 11 piece of paper on the door that gave a list of topics that visitors could talk about. In my case it was about where he was born, his love of tennis, states he had lived in, trips he had taken, business career, etc. I had all kinds of things that brought him personally into the conversation and away from the issues of the illness.

Paz2u answered...

Please please please don't stop visiting....when staff see visitors they are more attentive to your loved one. Have the party you will be glad you did later. They know more than it appears.

A fellow caregiver answered...

When folks talk about "going home " they are seeking a form of comfort that memories of home brought to them. For my husband I always say yes--we will go home soon but right now we are going to have a dish of ice cream--or dinner--or another diversion. It is so important not to confuse "telling the truth" with responding to the feelings and not the facts--so important to always keep your loved one feeling safe, secure, valued and loved --feelings will always be more important than facts---

Ca-claire answered...

I agree with most of the comments above. I have not said good-bye for years to most of my family, but especially my elders. I substitute instead "I'll see you soon". Even if I have no idea when I will see them again. On the phone, I say 'bye', just before handing up. It helps.

When there are groups, have the people start trickling out, rather than all of them leaving in a large group. Leave by groups of 2 or 4, rather than a full group of 12-16, is much less traumatic, and less of a stigma than all leaving at once, leaving the loved one 'alone' in the facility. The ones that trickle out don't even necessarily have to say good-bye, just once they've visited and left good feelings with the loved one, have them just wander away. Long-drawn out good-byes and especially tears creates a hardship on the loved one.