Should we not see my mother anymore?

Frustratedannie asked...

My mother has Dementia, is restricted to a wheel chair, and as I am not able to take care of her had to put her in a care home. She has been there over a year, and I try to visit as much as I can, then I went through a job and car loss on top of taking care of my four year old son.

The case management company is now telling me that they 'highly suggest' that I don't go to visit her at all or call to speak to her. They said to just speak to the caregiver and check up. My mom is 87 and I know that she wants to see me and her grandsons. They say that she has a change in behavior and that the caregiver may not want to take care of her anymore as she is very difficult when that happens. They said I could go visit or try to talk to her if I want, but then I might have to start the whole long process again. I wish I could take her, but I can't help thinking that this is just not right... ethically. They say that I have to think about her and the caregiver, would I want to hurt my boys if staying away was better for them?

Is this normal for the caregiver to ask the family NOT to visit?
~Frustrated Annie

Expert Answer

Kay Paggi, GCM, LPC, CGC, MA, is in private practice as a geriatric care manager and is on the advisory board for the Emeritus Program at Richland College. She has worked with seniors for nearly 20 years as a licensed professional counselor, certified gerontological counselor, and certified geriatric care manager.

I would be highly suspicious of a caregiver asking family members not to visit. You said that your mother is in a 'care home', by that, do you mean a small residential facility? And you also refer to a case management company and a caregiver.

My assumption is that your mother lives in a small home, managed by a care management company who has assigned a specific caregiver to your mother. Operating on these assumptions, perhaps your mother has bonded with the person she sees most often, the caregiver, and perhaps the new relationship is weakened when your mother sees you.

That is a small price for the caregiver to pay. Your mother has known you all of your life, and much of hers. It is irreplaceable in both of your lives, and should be preserved as long as it has meaning for either of you.

My recommendation for adults visiting parents with dementia is that you visit as often as YOU want to. Do not visit out of obligation or because you feel you SHOULD. Visit because you want to see your parent, because you feel good about visiting. Stay only a short period of time because their attention span is shortened by the disease. Always bring a project with you, something that can be enjoyed by both of you. Leave when that project is completed.

The project can be photos of earlier times in your parent's life, or a magazine such as Reminisce (http://www.reminisce.com), or beads to string, or coupons to be cut from the paper, or whatever has been a source of pleasure to you and your parent in the past.

In this way, you will maintain the relationship with your parent without disrupting their daily schedule too much. You will add quality time to the memories you have of your parent, and a pleasant 'moment' to your parent. I highly recommend the book, Creating Moments of Joy by Jolene Brackey, http://www.enhancedmoments.com.