Interview With Jean Milsop, Caregiver

I met Jean this summer in a class. This energetic 83 year old buried her husband Jim of 64 years last March. They had a wonderful marriage, raised a boy and girl together, enjoyed grandchildren, but the last 20 years saw his decline from Parkinson's Disease, a form of dementia with its unique characteristics where the muscles deteriorate. Why I wanted to interview Jean became evident. Here is a vibrant woman who survived and has much wisdom to impart. I was privileged to review her book, Taking Care and Letting Go: When Your Loved One Must Move to a Nursing Home. It may be out later this year. Today we had lunch at Reececliff, a famous Lakeland, Florida Restaurant.  My interview went like this.

Carol: I can so identify with the Pity Party that you write about in your book. For me this pity party has taken the form of emotional eating. How did you deal with the pity party? 

Jean:  I let myself have one, but only one. I am glad you liked that chapter.

Carol: Give me examples of how you learned to be patient.

Jean: During my morning walk I cleared my head and asked God to get me through the day.

Carol: How many years did you care for Jim at home?  

Jean: In February of 2008 he went to the facility so I believe it was sixteen years that he was manageable at home.

Carol: Were you in a support group or did you have people who came alongside of you during this journey?

Jean: No. I did briefly join a grief group after he passed away. Now I do meet with two friends whose husbands have beginning Alzheimer’s to encourage them on their journey.

Carol: Just as you are doing encouraging us all with this interview. What was the process of choosing a nursing home? 

Jean: I interviewed three. I was able to choose one that was close to my home that had good ratings.

Carol: How were you able to cover the huge expenses of a facility without losing your shirt so to speak?

Jean: Jim had been in the hospital for three nights and the hospital social worker got him into the facility. Insurance covered the first month. He was then evaluated and approved for long-term care through Medicare.   

Carol: How did you handle moving "home" to that facility? What did you bring there?

Jean: We just moved clothes, his TV and his radio. I got him new clothes such as pants with elastic waists. Every night I would then put out his clothes for the next day before I left the facility to go home. The certified nursing assistants (CNAs), he told me, always said how nice he looked. This made him smile. 

Carol: Did Jim go downhill after he was moved there as some of us fear?

Jean: No. He actually improved for a few months because of the daily physical therapy he received there.

Carol: You speak in your book about "being an advocate". What are specific examples of times you needed to intercede for Jim at the facility and how did the staff handle your possible "interference"?

Jean: They were very cooperative. One time we couldn’t get the baseball channel he wanted and I went right to the administrator and complained. It took three months, but he finally got his channel! Quarterly they had Care Plan Meeting with me to discuss his care, progress, decline or whatever my concerns were.

Carol: I would feel so guilty if or when I might have to place my husband in a facility. I want him home with me all his days. How did you cope? You obviously believed "'til death do us part" as I do. Did Jim object to leaving your actual home? 

Jean: In the beginning he was miserable, but after a while he adjusted. When I had to take him to the doctor, he was confused until he could get back to his room and his routine.

Carol: You were so limited when he was at home. Was part of the guilt suddenly having time for activities away from him while he was in the facility? 

Jean: Finally I could get a good night’s sleep.

Carol: You have a chapter on receiving support from family. I have had that support with a respite cruise last year, and the Alzheimer's Association has offered respite to my friend Sally. Did your children come along side of you in this caregiving of their father? 

Jean: They live out of state and have their own lives and family. We always love when they came to visit. My son is flying into town next week and of course it will be great to see him.

Carol: He needs to give you a big hug for how you have handled these past 20 years of your life. You are such an inspiration!