Mom has dementia and memories, pictures and phone calls from friends disorient her. Should we keep these from her?

7 answers | Last updated: Sep 14, 2016
A fellow caregiver asked...

My mother has had to leave her home in PA and move in with me and My husband in WI. She has dementia, and doesn't remember that she asked us to sell her things and her house, which was recently accomplished after much trouble. Now friends and family are sending her pictures of her house and the things she used to own in the house. It seems to upset her, as when she sees them she begins to shake and she goes into a "different" mind. How do we handle this? Do we keep the letters that mention the pictures and the pictures from her? Or do we let her see them? It seems to take her almost a week to recover her balance from seeing them or speaking to her friends from PA. Her unbalanced state includes beligerance about wanting to go back to her home, and contentiousness until she recovers. Then it happens all over again in another couple of weeks when someone contacts her or sends her something again.

Expert Answers

Brenda Avadian, brings knowledge, hope, and joy to family caregivers for loved ones with Alzheimer's and dementia. She cared for her father with Alzheimer's and helps families one-on-one and in groups. She is the author of eight books, including the pioneering memoir "Where's my shoes?" My Father's Walk through Alzheimer's and the Finding the JOY in Alzheimer's series. She presents vivid, compelling, and funny keynotes to both professional and family caregiving audiences.

As dementia makes it more difficult for your mother to remember, she will get confused from old memories of her home.

When dealing with challenges like this, I often put myself in the other person's shoes.

Try to feel what it's like not to remember recent decisions.

Let's say neighbors from your childhood began sending you pictures from your childhood--your precious toys that filled you with JOY and comfort. What if a friend or neighbor sent you a picture of your precious Teddy Bear? You know the one. The one that gave you comfort during all those scary nights. What became of him?

Imagine how you'd feel; and you still have cognitive capacity.

You have three options.

  1. As Dr. Volicer advises, help your mother's friends understand what their gifts of remembrances are doing to your mom. Whereas, they may mean well, they may have no idea that they are actually hurting her.

  2. If this approach does not work, you'll need to screen your mother's mail.

  3. Your other option is to wait until her dementia progresses more and she reaches the point of not even recognizing these photos.

However, realize that your mother will suffer until dementia progresses. Until then, it's best that you screen your mother's mail if her friends and neighbors can't appreciate the effect they're having on her.

Community Answers

Ladislav volicer, md answered...

You might want to contact your mother's friends and tell them that reminders of former life disturb your mother. You need to control her mail and eliminate what might disturb her.

Monica heltemes answered...

Transitions are tough for anyone, but especially for the person receiving dementia care. It sounds clear that your mother receiving photos and letters about her recent past are disorienting to her and perhaps even misleads her into feeling like she has left a home that she should go back to. Your mother needs some time to adjust to her new environment. Maybe in a month or so, phone calls from the friends will not rattle her so much. You might ask the friends that when they do resume calling, that they try to talk about things in the "here and now" and not from her past with them. For instance, they could talk about any outings your mom had done recently, her time with you and your husband, the weather this time of year, the holidays, etc. Hope our tips can help you.

A fellow caregiver answered...

This may not address your immediate problem with your mom, but I just saw and excellent video on dementia by Teepa Snow titled "Why do they do that?. Teepa is Teepa is a dementia expert who trains and consults for agencies, facilities, and families. Her training as a master's prepared occupational therapist as well as her extensive and varied work and teaching experience provides Teepa with a unique perspective of how the brain controls our body and our behaviors.

Thorman answered...

I just noticed that I have several responses to my question about people calling her, and sending her mail that disturbs her. Your comments were very helpful, and my husband and I have had to sometimes open the mail discreetly to make sure it doesn't say anything disturbing. We will then reseal the envelope and give it to her if it is appropriate. This makes me feel awful, but also relieves that I'm protecting her.

I'm not sure what to do with family letters who insist that it is none of my business what they say in their letters to her, and even though the letters are judgemental that I am upset at times and they tell my mother that I don't want her here, or my sister continues to write things even though she understands that they are harmful to the relationship I am trying to build with my mother.

Any advise again is helpful and very appreciative. I can't believe that I'm the only one who is dealing with this issue.

Thanks in advance. Thorman

Monica heltemes answered...

Thorman, I would say you are not the only one who struggles with filtering the communication from others that comes to your mother. The fact is that your mother is in your care now. I am sure it is not your intent to control every aspect of your mother's life and not let any other input in, but rather to do the best you can to provide her with days filled with happiness and security. Unfortunately, there is likely no definitive line determining which letters should be passed on to her or not. I would suggest you consider each letter with the knowledge that you are just doing the best you can, at that given time, and then decide if you will give it to her or not. Some additional considerations:

"¢ Some of the people writing the letters may not have a good understanding of dementia and not realize that your mother may no longer have the cognitive capacity to process the content of the letter.

"¢ As dementia progresses, reading becomes more difficult, as the person has difficulty processing what is written. In person conversations will become a better form of communication than writing.

"¢ With your sister, perhaps meeting with a Geriatric Care Counselor may help you, her, and any other involved family to create a plan that you all agree upon, for the best interest of your mother. Sometimes families have other internal issues present, but these are issues to address separately without your mother in the middle. Sometimes things are not always ideal, but again you think of doing the best you can. Best wishes to you.

Margieb answered...

Thorman -- my mother is in stage 6-7... we just moved her to a nursing home 4 weeks ago today. Easy - not a bit but I had to do what I knew was safest and best for her. My aunt lays guilt trips on me (pack your suitcase, you're going on a guilt trip - my favorite saying right now.) Anyway, I do not go see my mother every evening, but am there every other evening and on both weekend days. Aunt thinks it only takes a little time so I should get there. Well, as in the case of you, we are doing the best we can. Sisters & aunts do not walk in our shoes knowing what we are going through - either physically or emotionally. Aunt doesn't know that I've cried because we had to move mom out of assisted living and into a nursing home. AND your sister doesn't know what is happening with your mother in YOUR home.... She doesn't have to deal with the residual side effects after your mom gets upset or babbles on and on because she doesn't understand or because she can't sleep for worrying about her house, etc..... YOU DO THE BEST YOU CAN and don't let anyone take you down a different path. You are doing an EXTREMELY difficult job... Full-time care givers are not appreciated for what we gave up, how our health deteriorates because we don't focus on ourselves, only on our loved one. Hold your head up high and walk forward. You are supported by several of us who have been in your shoes. Hugs to you..