Love, Laughter& Mayhem : Caregiver Survival Manual for Living with a Person with Dementia
By Cindy Keith, RN, BS, CDP
RuthAnn was calling me to ask this question because she and her sister Marie, who lived on the West coast, had decided the safest thing for their mother with early dementia was to move her to an assisted-living facility near RuthAnn. Their mother was currently living in a retirement village in her own trailer in another state where she had resided for many years. She had lots of neighbors who checked on her regularly, but she had refused in-home help when RuthAnn had tried to arrange it. The neighbors had "rescued" her mother several times when she had fallen while outside, and had voiced their concerns about her safety on numerous occasions. The daughters were concerned about how to get their mother moved in the most effective and compassionate way since it was clear she could no longer live on her own so far away.
Their mother had admitted that her memory wasn't as good as it used to be, but had already told them she did not wish to move anywhere. In a telephone conference call, I offered options to these two loving and concerned daughters about how to accomplish the daunting tasks involved in getting their mother to agree to move, and then in planning the actual move.
RuthAnn was planning to fly down to visit her mother the following week and I suggested during her visit she finalize plans for the durable healthcare power of attorney, and then make sure she accompanied her mother to her doctor's appointment. She would need to sign a form for release of her mother's records, and if she had decided on which facility to move her mother into, to have the records forwarded there. She could do these tasks without ever mentioning the move to her mother.
To ease into the subject of the move, RuthAnn needed to make many "I" comments to her mother such as: "I would love it if you could come for a visit. It's been so long and the grand-children really miss you."
She should avoid any arguments, try to remain calm, and always present a relaxed, smiling presence with lots of hugs. She could wait for openings in the conversation and interject comments such as: "I would love to cook for you..." or "I remember what a nice time we had shopping at that big mall near me the last time you visited."
These kinds of statements would help remind her mother how nice it would be to be closer to her daughter, and to enjoy the rest of the family again without putting pressure on her to make a decision.
While there, RuthAnn could also make arrangements with a real estate agent to prepare for the final move a month or so in advance, again, without upsetting her mother by telling her in advance.
To help keep her mother safer in the interim, I suggested she arrange for some in-home care in the form of a "cleaning lady" since her mother was now using a walker to get around. She could give this to her mother as a "gift" and could be present when the person came the first few times. This would help her mother get used to another person coming into her home, and by the time RuthAnn left, she would hopefully be comfortable with this arrangement and allow it to continue. It would give the daughters a bit more peace of mind knowing there would be another person there to check on their mother as they finalized the moving plans.
RuthAnn returned two weeks later and reported her visit went very well. She was able to maintain a calm and loving demeanor and her mother had admitted it would be nice to be closer to the family. When RuthAnn had said she knew of a really nice place her mother could live (while keeping the house she currently had just in case she didn't like it) her mother had agreed that "might be a good idea." The "cleaning lady" was in place and RuthAnn and Marie made plans for the final move to take place in approximately one month. They would both fly there for the packing up, then Marie would drive her mother back, while RuthAnn would fly back and place her mother's personal items in the facility in advance of her arrival.
In the interim, they would both, along with other family members, call regularly to express their joy at her "decision" to move "even if it's only temporary" because they missed her so much. At the same time, they could tell her of all the wonderful things they could do together once she arrived. If she was having a "bad day" where she had completely forgotten the plan to move, they weren't to remind her of it, but to simply apologize, say they must have gotten it wrong, and go on to a safer subject such as: "Oh, I'm sorry I misunderstood, I guess I thought you were moving here when you're just going to be visiting. I'm just so happy to be seeing you again. I have so many great things to talk to you about!"
RuthAnn reported that things went well with the caregiver for a couple of weeks until one day she got a call from her mother whom she described as being "on the warpath." She was furious that the caregiver was there, that she just wanted to be left alone, and threatened to move away and not tell anyone where she had gone. As I had discussed the possibility of this scenario happening previously with RuthAnn, she had instructed the caregiver to leave, but to return the following morning as if nothing had happened. Fortunately, her mother was scheduled to see her doctor the next day for one final time before the move, so I asked RuthAnn to instruct the doctor's office to have her mother tested for a urinary tract infection. If the tests were positive, an antibiotic could be started quickly and her mood and behaviors would return to baseline. The difficulty would be for her to actually remember to take a new pill on a daily basis. It turned out that her mother did have a urinary tract infection and she was successfully treated with an antibiotic. To everyone's relief, she had forgotten her outburst against the caregiver and did allow her back into her home the next day.
RuthAnn and Marie reported that the big move was successful, but stressful for their mother, as expected. They had chosen a small assisted-living facility near RuthAnn since it seemed more "home-like," and there was a family member with her almost constantly for the first several days while she adjusted. The family members all made a huge fuss over her and continually told her how wonderful it was that she had decided to move there, so this made the transition much easier for her to make. These daughters had managed to accomplish their goal of moving their mother across country in a safe, loving, and dignified manner. By learning and utilizing these new ways of interacting with their mother, it all soon became second nature to them:
Instead of trying to continually re-orient her, getting into her reality, agreeing with her, and then changing the subject.
Making numerous "I" statements to convey to their mother just how wonderful she made them feel.
Praising their mother at every opportunity for all of the right things she was doing, and the right decisions she had made.
Giving their mother lots of physical affection in the form of hugs and smiles.
Allowing their mother to have hope that if she didn't like the new arrangements, she could go back. Although delay tactics would be used if their mother decided to go back.
Keeping their body language calm, relaxed, and open when they interacted with her in any way.
RuthAnn and Marie's mother settled in at the assisted-living facility and soon forgot about her "home" so far away. As happens with most people with dementia who are placed into facilities, eventually the facility becomes home to them and the requests to "go home" become fewer and fewer.