Aging with Dignity with LBD

In my case, I intervened in my mother, Linda's life 14 years ago, because "something was just not right." She stopped eating right, her house was a mess, she was on the brink of losing her job and could not make reasonable decisions.

I remember in the past that her parents, siblings and ex-husband thought that Linda was just being Linda. As an RN with 40 years of experience, she had many empathetic psychiatrists and doctors that provided her with an arsenal of self-medicating options. Though smart, she was never happy and her conversations started to include self-harm, so I intervened when she was 59.

My first course of treatment was: 1) Provide a good bed to make sure she sleeps. 2) Provide real food and get away from processed food. 3) Reduce medications to the bare minimum that can be proven to work. My first 4 years of doctor's visits ranged from psychiatrists to podiatrists. As I was trying to advocate for her, I would be blind-sided by her off handed comments. A receptionist would ask if she would like to sign me up on her HIPPA paperwork. She would respond, "Oh, my daughter is trying to put me in a nursing home and take my money." By the way, there was never any money, only piles of debt. Then I would get the "stink eye" at every visit after that. My balancing act included doctors, debt collectors, the IRS, Social Security, accountants and lawyers.

I finally started to understand her physical issues, but the mental ones were elusive. At one point, I asked her doctors to stop all drugs except for the one that would make her want to live. My only respite was trying to initiate healthy habits; eating right, exercise and making good choices to build up her mental health. It was a grueling amount of work re-teaching adult life skills, even compared to raising my 5 children under 12. Once the hallucinations started, I placed her with a geriatric psych doctor. His team identified LBD. She was 65 and they wanted to institutionalize her immediately. He let me know that it was the easiest way to "find her a bed." I refused saying that she was too young. If I couldn't provide the support services she needed at home, then we would be back. He wasn't supportive.

I found a program in New Hampshire that subsidizes caregivers that help the elderly stay in their home. What started at 10 hours per week turned into 32 a few years later. At 40 hours/week, the program won't support her needs. The disease has robbed her of her eye sight and this past year her cognitive ability has equally declined. Some helpful tools have been a prescription delivery system, I manage her TV program from an app, her caregivers interact with her all 32 hours, she helps with her own chores, my daily phone calls, bimonthly 50’s dances and we spend a day together each week managing her affairs. Her geriatric psych doctor abandoned her completely last year, even though she was the poster child for finding ways to cope with LBD and keep your independence.

Since her decline has been rapid and she is ready for full time care, I'm trying to find placement. Today’s health care system of assisted living and nursing homes reject her because of her financial status. I have her on waiting lists, but directors have said she wouldn’t be their first choice. Her only “hope” would be through a traumatic hospitalization. Even though my mother was the Director of Nurses for nursing homes her entire life, there aren’t beds for the needy any more. Imagine that. I'm trying to do my best for her and my family. It is extremely difficult. This has been a crisis for us, but I can only imagine how much worse it is for others.

My mother's nursing experience guided me to ask the right questions. My father's science and medical knowledge guided me to try alternative options. I used this and my wits to find positive solutions. It is my goal to give her as much of an independent and dignified life as I can, for as long as I can. I would expect no less for me, and you shouldn’t for yourself either. She will be 73 this fall.

Karen C.

Aug 15, 2017