Hi, again. I hope this finds you in good health. I have a story which I hope you find helpful.
In 2004, my mother, Sheila, showed signs of dementia. In 2005, she lost her home in Hurricane Katrina. By 2006, the effects of the trauma and the progression of her disease became clearer.
After she safely evacuated from the Gulf Coast, mom was with other family members on the East Coast, first in North Carolina with stepfamily then in Florida near her sister. I handled her legal and health affairs, and became a long-distance caregiver, including multiple trips to visit her. However, it became apparent by late 2007 that I needed to move her to Oregon and take on the daily role next. Fortunately, she was still ambulatory, and somewhat lucid, but the burden on my aging aunt became too much although mom was in a care community.
In early 2008, my other aunt flew down from New York City, picked up mom and flew her out to Oregon. She enjoyed her visit, including the Pacific Ocean, and I knew that she would like to live near us. I’ll never forget when she saw the assisted living that I chose for her. She walked into the attractive lobby, and said “This is nice, I could live here. Can I afford it?” I replied: “Yes, Mom”. However, inside I thought: for a little while. Yes, that was a “therapeutic lie” or, as I say, “compassionate deception”. It did no harm and it was a suitable move.
Less than two months later, after a much needed and long planned vacation to Mexico, and while she was still capable, I flew to Florida and returned with her to Oregon. I took advantage of the wheelchair and other available services, so the movements in the airport and on the plane weren’t too challenging, except for one aspect: the restroom. With my mother, for obvious reasons, I couldn’t go in the women’s areas nor could I fit into an airplane washroom with her. It required complicated communication through the doors, at the entrance, and with the help of strangers. But we made it and she was a good natured traveler for her companion and elder son.
Other challenges arose after the flight. We waited belatedly for her furniture and other belongings to arrive cross-country. We had her at our home temporarily with aides to help keep an eye on her and keep her company since we worked full-time and couldn’t leave her alone safely. There was also a brief stay in a furnished apartment at the assisted living facility. Fortunately, things came together eventually in terms of her care, her belongings, and her settling in.
One side note: we had a party at our house for my aunt who moved here from Manhattan to help me and be near her sister. So mom stayed safe, fed, and engaged, and we could enjoy and be hospitable to our guests, we hired a caregiver to bring her, stay with her, and return her to the care facility. I highly recommend this!
However, the next challenge and move came in early 2009. The nursing staff and our family had predicted she would be there for less than a year; it was for only 10 months. During a Norovirus quarantine, she started exiting and doing dangerous behaviors. Mom could no longer be left alone and would need 24/7 monitoring. Remember I said above that she could afford it initially? Well, she ran out of money at that exact time. So, my wife and I alternated between staying overnight with her and sleeping at home, and going to our respective jobs while mom was in adult daycare during the daytime. I didn’t see my wife for two weeks.
Once we got Medicaid approval and set the date for the move to memory care, we arranged for her to be in daycare. With the help of wonderful friends, we moved what little she would keep into the smaller shared space in the secure unit, and the rest into our garage (not the first time that happened by the way).
Logistically, it went fine, like clockwork actually. Even when we brought her into the new care area and was given a “tour“ by the head nurse, she seemed open and agreeable to it all. As is often advised, we left her with her new caregivers and went out for lunch nearby, thinking “that went surprisingly well“!
We were sadly mistaken. We went back to see how she was doing and she was madder than a wet hen, yelling at me: “how dare you move me without my permission! I didn’t sign up for this!”
Fortunately, the succeeding days and weeks went better and we all adjusted to the new reality. She was there for four more years with excellent care by an amazing staff, and later hospice, before she passed away peacefully with me nearby in 2013.
So, fellow caregivers, it’s best to be proactive and plan accordingly while your person living with dementia is still capable, not after an emergency makes things even more difficult.
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