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Managing the Personal Details for Exceptional Care
Interview With a Client Family: How the Diagnosis Affected All of Us
by Amy Hane | Nov 16, 2023
Long Term Liaisons: Tell us about your loved one before the diagnosis.
MG: My SIL was a brilliant physician, teacher, and psychiatrist. I admired her wisdom and enjoyed her friendship. She counselled our family through many crises, took a sincere interest in our lives, and made certain that our families visited together, although widely spread apart in 4 states. She cared for her elderly father in her own home and later for her elderly mother-in-law in their final years.
Long Term Liaisons: What had you noticed about your sister-in-law before they had a diagnosis?
- A few years ago, she fell victim several times to crooks running sweepstakes scams. We warned her. So did her postmaster and bankers. She gave away her retirement and entire fortune to the scammers. When her money was gone, she started working through her husband’s money. Why would such a well-educated, practical person fall for these schemes again and again?
- Her house was filling up with stuff. She told us she was receiving a 12-inch pile of mail every day from charities she was contributing to. She piled the papers all over, on tables, couch, chairs and on the kitchen counter next to the stove burners. Visitors had nowhere to sit down. She said she couldn’t throw any of it away until she had read it.
- Her husband lost 40 pounds and she didn’t notice it.
- She kept locking herself out of the house.
- She stopped cooking, a talent she was great at.
- She missed doctors’ appointments. She rescheduled and missed them again.
- She said she lost her state license to practice medicine because the renewal application got lost in her papers.
- She wrote 800 checks a year to charities, mostly $5 or $10 checks. Many of the charities were bogus.
- She drove to familiar places and got lost. She would call us from her cellphone for help.
- She dropped her husband off at an appointment and forgot to pick him up. Eventually the police brought him home. She was most upset that her daughter-in-law called her incompetent.
- When her husband was diagnosed with dementia, she couldn’t explain it. I thought it odd that a psychiatrist would be at a loss for words. Instead, she blamed “ignorant staff members” where he was being cared for.
- She was unreachable by her cellphone and she couldn’t manage listening to and clearing messages.
- Her stepchildren and her physician tried to keep her from driving. Her vision was poor and her diving skills risky. She blew them all off and kept on driving.
- Several months after we helped find an assisted living place for her and her husband to live in, she moved out to a regular apartment community. How could we help her? We all lived in different states and couldn’t travel safely to Georgia during COVID 19.
Long Term Liaisons: How did you go about getting the diagnosis?
MG: We asked her primary care doctor, who referred her to a neurologist.
Long Term Liaisons: What were your feelings when you received the diagnosis?
MG: I was relieved to hear the words. This meant that others would treat her with the understanding of her dementia. She would be looked after.
Long Term Liaisons: What ended up being the biggest challenges?
MG: Getting the diagnosis from a physician. The area she lived in had many psychiatrists who she had taught in medical school. I think they didn’t want to declare her dementia, so they showed professional courtesy by not doing so. I’ve heard of other cases (not ours) where a diagnosis of dementia can lead to family feuds and lawsuits. So, the doctors hate doing this.
Long Term Liaisons: When did you involve a care manager?
MG: Within 4 months of her leaving assisted living.
Long Term Liaisons: What were the key benefits of working with a care manager?
MG: We needed a care manager to watch over her and keep her physically safe.
- Someone to visit her and advise us.
- Someone to talk to her caregivers and nurses.
- Someone to remind her about doctors’ appointments and accompany her.
- Someone to convince her to give up driving her car.
- Someone to comfort our fears about bizarre plans she had, such as her wish to get back her medical license, go back to work at 83 and move to Atlanta.
- We family members were reeling from listening to her plans and at a loss how to talk to her.
The care managers’ approach to her was as friendly associates, there to advise or assist. No family member could have pulled this off without annoying her and then being ignored. She respected the care managers and allowed them to help her in ways we couldn’t have done. They arranged for a music therapist to visit her and fill an hour with singing, playing instruments, and the joy of music.
Long Term Liaisons: What would you tell others about the entire process?
MG: We live daily with anxiety about a loved one with dementia. Knowing that the care manager has experience in all these issues allowed us to breathe and let the care manager handle the problems and advise us what to do.
Long Term Liaisons: Are there things you wish you had done sooner than you did?
MG: We were fortunate to find a care manager early on, about 4 months from when she moved.
Long Term Liaisons: Any other advice for someone seeing symptoms or going for a diagnosis?
MG: Employ a care manager as soon as you can. This will save your sanity, get an expert on board, and leave some room for you to experience joy, instead of constant worry.
If you or someone you know needs help from a care manager, please reach out. We know where to start and how to help you walk through the tasks of being a caregiver.