This as told essay is based on a conversation with 55-year-old Tasha Crouse caring for her father with dementia. She lives in Wisconsin, but regularly visits her father, who is in a hospital memory care facility in Colorado. Crouse became his conservator when his condition deteriorated. Crouse’s attorney and fiduciary confirmed details of the case conservatory agreement. This interview has been edited for length and clarity.
My parents are both from Great Britain. They married and moved to Fort Wayne, Indiana, where I grew up. My mother taught French, and my father was a trust officer who managed estates at a bank.
After college, I taught for two years before getting married and having children. I stayed home with them, and when they went to high school, I went back to high school nursing school and became a practicing nurse in long-term care. I became familiar with dementia and recognized all the symptoms when my father started experiencing some of the symptoms.
My father started acting differently after my mother died
My mother’s decline was relatively rapid. One day in 2015, she couldn’t get up, so my dad took her to the hospital. She had a huge ovarian tumor and died two months later. She was in the hospital the whole time.
After her death, I noticed my father talking in circles. He would ask the same question he had asked a minute earlier. One time we were kayaking and we told him to pick us up at the drop off spot at 11am. When we were done, we went there, but he wasn’t there and we couldn’t contact him. We borrowed someone’s phone and he said he went but didn’t see us so he left. He didn’t look at the time.
We initially doubted anything was wrong, and he was just forgetful. We noticed that he kept his receipts and wrote them down to keep track of his finances. Once I noticed that he did not turn on the heating in his house in the winter because, according to him, he had no money to pay for it. He didn’t have the executive skills to look up a phone number and call someone to get him wood, so he went into the woods to scavenge. He couldn’t remember already having piles and piles next to the house.
We have hired a caregiver
I realized I had to call social services and make a doctor’s appointment for him. I wasn’t sure if we should hire someone or put him in an institution. At the doctor’s office, he revealed that he had a huge wound on his arm that turned out to be skin cancer. I kept calling and trying to get help, but he wouldn’t let me are eligible for Medicaiddespite everyone at social services trying to convince him to apply.
I came across one care at home service called Home Instead, so I signed up with them. The caregiver was shocked to see his living conditions and how he would not turn on the heating. We paid $50 an hour for three hours a day, three days a week. In total it came to $4,100. He didn’t want to pay for it because he didn’t think he needed it, so I paid. He refused to let his caregiver in, and I had to call his neighbors to convince him.
At the end of April this year I received a call from Home Instead that he had suddenly fallen over and had a seizure that lasted more than a minute. He was rushed to hospital and kept having seizures. I got there as soon as I could. He was in a coma for a week.
He came back little by little, and I was there when he got better. He was able to breathe and eat on his own, but doctors decided it was best to place him in a rehabilitation center so he could resume physical and occupational therapy. I had previously paid a deposit for one memory care center in Colorado so that when he needed it, a space would be available.
My father’s memory care costs almost $8,000 a month
We obtained a neurological assessment for him which revealed that he had advanced dementia and was not allowed to drive independently or make important decisions such as managing his finances. He’s still mobile and motivated to get out, although that probably won’t be the case.
I try to do a long weekend once a month, leaving on Thursday and returning on Sunday. In the event of an emergency, I am there as long as necessary. I spent about $6,000 on travel between Wisconsin and Colorado.
His memory care costs about $7,700 a month. I was able to go to court and obtain conservatorship from him. He had one financial advisorand they are liquidating his investments little by little. I have received permission from the court to reimburse Home Instead and travel expenses. He has about two years of savings left and he has a house that we should probably sell.
It took me a while to go through the conservatorship process. I didn’t know which form to fill out and no one responded when I had questions. I finally found a lawyer who helped me. He charged $400 an hour. I ended up taking my father and sister to court for guardianship ad litem, and I had to return 30 days later for permanent guardianship. I had to swear to use his finances for his benefit and keep track of everything.
When you present yourself as a conservator at the bank or investment advisor, the customer service representatives don’t know what to do or how to handle your situation. Every customer service representative treats me with suspicion, even when I have the letters and orders proving that I am a trustee. All I want to do is pay the assisted living bill and keep my dad safe.
I think about my own long-term care
Seeing his decline has helped me a lot with mine long-term care planning. I’ve been thinking about getting long-term care insurance for a few years. My father did not have advance directives, so we make sure these are in place so that our wishes are met. He’s been resuscitated multiple times, and it’s starting to come down to a quality of life issue with our own decision making.
I hope that after I retire I will have exactly the minimum I need. My dad had boxes and boxes of mail that were never thrown away, and I don’t want my kids to have to deal with that for me. They will know where to look for our valuables, and everything will be addressed and ready for them.
