Relocation Stress Syndrome — who knew?
Way back in the mid-90s, when my husband’s grandmother was diagnosed with Alzheimer’s, she was hospitalized briefly for colon surgery. Already, she knew her daughters had selected an assisted living facility for her and she would soon have a new home. But she was going to dig her heels in all the way there. On one visit I made to see her in the hospital, she pulled me aside and said, “Listen, do you have a car? Can you get me out of here?” Sadly, I couldn’t help her blow that joint, nor could I understand what she was going through.
Later, after her death, I saw this same kind of distress in her daughter, my mother-in-law. When we brought her to live with us temporarily at the onset of her dementia, she was so bitterly angry she would throw things at us, call friends and tell them we were being cruel to her, tell caregivers we were holding her against her will — which in a way, I guess we were, but only for her own safety. She also had long crying spells and lamented sad events which were decades in her past.
What I didn’t know then was that this condition both women experienced actually has a name: Relocation Stress Syndrome (RSS), and according to a paper I will link below, it mimics a psychiatric disorder health care experts call Adjustment Disorder. Both of these can cause an impairment of a person’s social or other functioning.
The facilitator for the Alzheimer’s support group my husband and I attend is Dana P. Turnbull, PhD., a psychologist working in North Texas. Dr. Turnbull has studied Alzheimer’s extensively and helps families cope with the illness. Drawing on an extensive bibliography of other experts, she wrote a manual titled Reducing Relocation Stress exclusively to help those of us who have to move a loved one into residential care or into a relative’s home.
As I’ve written before, I am not a medical expert or researcher, so I defer to the experts in this blog. That’s why Dr. Turnbull has given me permission to post a link to this manual here — Reducing Relocation Stress. But I do want to highlight a few things in the manual that I found significant, and that I wish I’d known when I started this caregiving journey.
1) Did you know that RSS can almost double the risk of death? This explains why others have told me that when they moved their grandmother/mother/father into assisted living or residential care, that person’s health rapidly declined.
2) A person who is forced to move experiences the same stages that Elizabeth Kubler-Ross modeled in working with people who are dying: Denial, anger, bargaining, depression and acceptance. This makes sense — dementia entails so much loss. Loss of health, of home, of independence, even of one’s own mind.
3) One thing that can help minimize RSS is having the person who is moving participate as much as possible in the decision of where he/she will be going. I wish I’d known this when we were first dealing with my mother-in-law. After living with us for a while, we took her to several assisted living facilities as the first step toward residential care, and she chose the one she liked best. What we considered a very small thing — having her choose the residence — was to her a very big thing in terms of maintaining her independence. She chose the furniture she would take from her house, the books, magazines, bed sheets, dishes, etc.
It is possible, by following the advice of experts such as Dr. Turnbull, to minimize RSS. But it requires something of which we, in our modern rushed lives, sometimes have in short supply: patience. There are many things I often wish I had more in dealing with my own mother as her dementia progresses — money, time, energy — but the one I wish for most is patience.