The Love of a Caregiver Daughter

I had the privilege of interviewing an outstanding caregiver whom I had been corresponding with. My dog Ziggy and I were privileged to stay overnight with this couple. Over a breakfast of homemade biscuits Patricia said about her mother:

I was blessed with a great mother 

and I can do no less than care for her. 

She always tried to care 

for others in her family, 

selflessly giving even after she was disabled with leg fractures.

Her mother broke her hip and leg at age 84 requiring metal rods. Then 2 years later she broke the other leg in two places requiring rods and pins. Her resilience was amazing, but due to issues with blood pressure she began to lose her sight and have small TIAs. Then the dementia began as it often does in the 80s. Finally at 87 she had a stroke that paralyzed her left side and throat causing aspiration issues. Due to the extreme physical issues she was placed in a skilled nursing facility hoping for rehabilitation. Unfortunately a second stroke in rehab greatly reduced her ability to respond to therapy and today’s healthcare system discontinued the therapy due to lack of progress. 

This was a very stressful time for Patricia because she felt so helpless. She knew her mother didn’t qualify for therapy,  but without it she would just lose the existing strength and rapidly cycle downward. How do you watch a loved one lose their dignity and connection to reality? Her mother had good days where she was alert and realized that she was not getting therapy and therefore she had little hope of regaining function of her body and returning to her home. It is difficult to see a loved one lose their spirit and will to live. The 88-year-old mother also had a son, but he was not in a position to help. 

So for four years Patricia worked four days with the schools and then drove 3 and 1/2 hours to stay with her mother Friday through Sunday—so her mother could stretch her finances needed to pay around the clock caregivers allowing her to remain in her own home. Patricia said it overtook her life for those four years, greatly impacting the quality of her other family relationships especially the special time to share activities with her husband during their golden years together. She said that she always felt guilty trying to meet everyone’s needs at the same time and never doing a good job anywhere. Her mother had to pay $35,000 a year for Monday to Thursday caregivers when Patricia was not there during those four years. After the first major stroke her mother’s needs increased but Patricia was exhausted also. She had also developed physical ailments from helping to lift her mother over the last 2 years and now her mother would not be able to assist with any position transfers to prevent bed sores.

Something had to give. She was moved to live closer to the couple. They decided to have her dentist husband  hook up oxygen to create a sort of  SUV ambulance to move the mother to a nursing facility in their home town. The original plan was to receive therapy until she improved and could then assist with transfers and limited caretaking within Patricia’s home. Unfortunately, her health continued to degenerate and she was unable to make any physical progress. Now Patricia is able to visit her several hours a day and still have a life with her very understanding, caring husband.

I asked Patricia how she was able to sustain this selfless care giving for four years and even now going to the nursing home every day. She said,

I just do it.

I stay in the moment.

Then I’ve also let go of some 

other moments or expectations for my life.

I don’t look at it as an intrusion.

I know that once she is really gone

 I can’t touch her again, 

so for now it is all worth it.

Caregivers Pete and Bonnie

Pete was married to Nancy almost 45 years. Bonnie was married to Jimmy for 36 years. I met both of them in church the Sunday before Christmas in Huntsville, Alabama. Instantly I connected with these two caregivers and wanted to interview them. Two days later I interviewed both of them over breakfast at a local restaurant.

Carol: What was the medical diagnosis of your spouse and how long did they live?

Bonnie:  Jimmy had chronic lymphocytic leukemia (CLL) and after diagnosis lived for two years.

Pete:  Nancy had a brain tumor and lived eighteen months after diagnosis.  I enjoy talking about my late wife—I enjoy the memory. Joyce, my deacon and Hospice care volunteer, remarked: 

Lose child you lose your future. 

Lose parents you lose your past of your history. 

Lose a spouse you lose your present.

Carol: Oh yes, you lose your present when you lose your spouse. I am adjusting to that loss.  Let me ask you both. This went so fast for you both. How did their illness and death catch you off guard? I mean I had from 2008 to 2014 to get used to my husband’s dementia and eventual death.

Bonnie:  Did it catch me off guard? Yes and no. I am a nurse. Jimmy was 59 and his illness was similar to his uncle who died with the same illness. I was expecting the genetic factor to kick in at some time. Everyone in his family said Jimmy reminded them of that uncle—he looked like him.

Pete: Yes, Nancy’s illness did catch me off guard. There was no known family history. She had had thyroid cancer surgery, a lumpectomy and both were malignant. Then fifteen years later an unrelated cancer popped up--but this time in the brain. It hadn’t been metastasized from the previous two cancers. The surgeon who gave the latest diagnosis cried with Nancy and me.

Carol: How did your Christian faith play into this caregiving experience?

Bonnie:  Music means a lot to me. One particular hymn had the words Come yet disconsolate. The choir sang it when seven students were killed in a tornado in Enterprise, AL. The arrangement was written after that Enterprise horrible incident. That hymn and arrangement spoke volumes to my heart. I was disconsolate.

Carol: Our faith does give us insight when we suffer, but, really, how hard was it to be your spouse’s caregiver?

Pete: Very hard to see her ill and to go downhill. Nancy became very fearful. She wanted me there all the time. Once I tried to go get a haircut and she called three times on my cell phone before I could get to the barbershop.

Bonnie: I remember when Jimmy wasn’t able to keep our financial records and kept going downhill. It was devastating for me. I was 54 and as a nurse I knew when I found the lump in his neck it was not good.  Initially they thought it was the chronic type, but within 6 months the oncologist decided it had progressed enough to treat it. My husband had chemo then. My way of coping was a bit of denial because I felt I had control--I was a nurse. I could draw his blood. I could take it to the lab. I disassociated myself from that part—it became almost mechanical. 

Finally we did go to M. D. Anderson Cancer research in Houston, Texas. As I watched Jimmy decline, I recognized the end-of-life progression. I was told if he didn’t get platelets, he would die. After coming back home, a visit with his dad was gratifying. His daughter wanted to be with him until the end and she told him she would be okay and he winked at her. Jimmy lived five days in Hospice care after he came back home from Houston.

Carol: So while he was in Houston, you were away from home and support of family and friends. How was that, Bonnie?

Bonnie: While we were in Houston, talks on the phone with my sister, close girlfriends and church members were of great comfort. It seems when we became downhearted, someone would call. Email 

with encouragement lifted our spirits and we could read them again 

and again.

Carol: Bonnie, what about after Jimmy died?

Bonnie:   After Jimmy died, I withdrew and became depressed. I did not allow the church to nurture me. I felt like I had to mourn. I became drained. It was too exhausting to interact with people, so I sat at home and did not interact. I was immobilized. Within the first year Jimmy’s aunt took me on a trip to Scandinavian. A ray of hope came in.  After two years I started remodeling my home. After five years I moved to a patio home.  Gradually I got back into life.

Carol: I can learn much from your journey.  I need to be determined to get back into life. When you started remodeling the house and went on a trip, you got the resources to move on. I need to do that as well. However, in my case, it is not remodeling, but getting the house ready to sell. Life does go on.

Let me ask Pete. I am doing my counseling dissertation on the church and caregiving. How did the  church help you in this journey?

Pete: Our Sunday School class fed my late wife and me for 18 months. Why I even had two refrigerators full of food when she died. Another church in the Huntsville area had an adult day care called Trinity Friends. Even when she was paralyzed I  took her to that day care.  I had a car with butt-level seats so she could easily get in and out of the car. She finally wanted me to have respite so I could do errands while she was at that day care.

Carol: Brain tumors start to have much in common with Alzheimer's. How did Nancy's mind change?

Pete: Nancy had trouble naming things. She could read a storybook to our granddaughter, but not communicate. She lost words before she lost her short-term memory. We just don’t understand the brain. In the last month Hospice was there, she never had pain. My two prayers were answered—that I could take care of her and that she wouldn’t have pain.

Carol: What was your grief like, Pete?

Pete: When she died, I cried, but I felt I wasn’t alone. I got over 2000 cards and letters and a deacon and Hospice ministered to me. I went to a weekend seminar on grieving. At that grief session I learned from the Hospice chaplain that it’s okay to grieve. This engineer (me) understood the process more.

Bonnie:  I also went to that weekend session where I witnessed other people’s pain in community and how everyone was dealing with the pain. It was comforting. Also the Hospice social worker helped my children. My girlfriends helped me get back into life. I started volunteering by helping with respite care  at our church.

Carol: Like you two I have been in a grief program. I am determined to move on and am planning to sell and move. Speaking of moving on, you two caregivers married!

Bonnie: Yes, and our families have blended well.

Pete: I got the daughter I never had before. However, at one time we had three houses and two motor homes.

Bonnie: I had been visiting Nancy while she was ill and apparently she like me. I saw Nancy’s inability to communicate when I delivered food to her.

Pete: Apparently Nancy had told a mutual friend that I should find someone like Bonnie. After Bonnie and I were engaged, we learned that news.

Bonnie: We did not know this until after we were engaged!

Carol: It is so exciting how you two have forged a new life together. One more question.  Is it uncomfortable now to talk with each other about those caregiving years with the previous spouse?

Both Pete and Bonnie said not at all and what a pleasure it has been to talk with both of them and to see how they have survived being caregivers, being widowed, moving ahead and forging a new life in their senior years! It is interesting to me that I have met these two new friends (and others) in the two weeks at the end of 2014 that I have been visiting with family in Huntsville. I am thinking positively about moving to Huntsville, Alabama. 

Can I too move on? Their stories inspire me to do just that! 

Interview: Saying Goodbye to Papa

Leaves a rich spiritual heritage for his children

I needed my fingerprints made for my DUI instruction just after Labor Day. It was then that Susan Haynes and I met when she did my fingerprints. It was at the time that my husband had two handicaps—he couldn’t walk and he has dementia. Susan and I immediately connected and started talking about her father who had the same two handicaps. We exchanged information and became instant Facebook friends. I told her that I wanted to interview her. Little did I realize then that her Papa Joe would pass away before we had the interview.

Carol: Your dad had difficulty walking since an accident. Tell me about that accident.

Susan: Yes, he was working and he fell off a house and the house fell down and pinned him down. He was taken to the hospital where the medics worked with him, but they knew it had paralyzed him.

Carol: How did the family get Papa Joe to stop driving and stop taking “joy rides”? My oldest brother came over and told him that he was 80 years and that 80 year olds do not need to be driving around. He took his driver’s license to the DMV and Papa let that brother turn it in. How did he accept your mom driving?

Susan: Papa didn’t like mom’s driving, so I would take him to the doctor appointments.

Carol: Your dad would take your daughter to the school at your neighborhood church in his scooter and then pick her up.  Were you all nervous about this trip?

Susan: No, I didn’t think about it at all, because I knew my daughter would keep him straight if she thought he was driving wrong. She told him that she loved him and that he needed to be out at the school at 2:45 pm. I will be looking for you.

Carol: Near the end of you Papa Joe’s life your family started noticing signs of dementia in your dad, right?

Susan: He had been a private man and short-term memory didn’t seem to be the problem, until signs of dementia had set in.  One day my daughter said Papa is getting old. For the last year and a half we started noticing things, but his doctor didn’t notice anything and he wasn’t put on medicine. Seven months ago he started acting like everything in the past as if it was the future.  

Carol: I noticed on Facebook when Papa went to the hospital early in October. Tell me about that.

Susan: The first time my mom asked me to ask him how he was and he told me he was fine and that he was not going to the hospital because he was not sick. When I got ready to leave he began to talk to me about his upset stomach. He said he guessed I should take him to the hospital. His ulcer was bothering him.

The second time he went to the hospital he said that something was wrong in his heart and they needed to fix it. His heart was racing fast and they kept him four days and then he came back home.

The last week of October 2013 my dad spoke softly, didn’t say much and said he was ready to go home to see the people that were not there anymore.  He was very weak, but he tried to be strong and his eyes were so grey.

I got a call from mom at 2 am to come help dad at his house. He was acting strange and when I got there at 2:15 am the ambulance was there and they were putting him on a stretcher and putting him in the ambulance. He was looking one way and would not respond to my calling his name. He had spoken to my mom and brother before I got there, wanting them to help him out of bed to go to the bathroom. But he would not get up, my mom said, and he couldn’t be helped up. That’s when the ambulance was called.        

About this time Sudan wrote on Facebook:  STANDING IN NEED OF PRAYER THIS MORNING FOR MY 88 YEAR OLD DAD WHO WAS ADMITTED IN HOSPITAL AROUND 10 PM LAST NIGHT WITH STOMACH PAIN AND DOC STATED THAT HE NEEDED SURGERY AND THAT HE HAD A SURGERY DOCTOR COMIN IN AROUND 12:OO THE DOCTOR STATED THAT THEY THE DOCTOR WAS IN AND LOOKING AT THE 3 CAT SCANS AND AFTER THAT HE WOULD REPORT TO US AND 1:30 WE WERE TOLD THAT HE WAS NOT DOIN’ IT AND HE WOULD WAIT UNTIL MORNING TO SEE WHAT HE COULD DO FOR MY PAPA.  LORD I AM IN NEED OF PRAYER NOT JUST FOR HIM BUT MY MOTHER AS WELL. SHE IS NOT THE BEST AT HER AGE BUT SHE JUST QUESTIONS THE DOCTOR AND WANTS ANSWERS LIKE WE ALL DO.

Carol: What did the doctor tell your mother?

Susan: That his heart was very weak now and they couldn’t really tell her, but he may live one to four months.

Carol: A week later you wrote that you were with your dad again and all seemed well. He was eating and drinking his Pepsi and watching TV, you wrote.  

Susan: Yes, I took pictures. I couldn’t believe it. He looked good too.

Carol: He as able to go home from the hospital then, but at the end of October he took a turn for the worse. Then you wrote on Facebook.

Susan on Facebook: Well my father fought a good fight but he won his case and left this earth at 1:35 pm with a smile on his face.  Thank you Lord for sparing him 88 years of which 52 I shared with him.

Carol: Was he alone when he died?

Susan: No. He was surrounded by his loving wife, his sons, daughters, nieces, nephews, and members of his church body.

Carol:  How had your older brother, preacher Willie Joe, summoned the nine siblings?

Susan: He sent us a text early the morning of his death that said: Good morning family. Hope life is serving you well. I give God thanks for a new day. If each one of daddy’s children will release him, he will rest. He needs to hear you say it is all right. That man is tired. He’s at the point he can’t do nothing for himself. Let him go. Daddy is tired. We can’t worry who doesn’t show up. We that do must assure him everything will be all right so he can rest. I don’t want to see my day suffer.

Carol: Did all nine children show up at the hospital? What was it like?

Susan: We were all there and it was very sad to see my father, the man that controlled us all, laying there and he patiently prayed and asked for healing for us and what we would be facing.

Carol: Then you posted on November 9, 2013, the day of his funeral.

Susan on Facebook: Dad, this is your day. What can I say? You left me here and you said you were tired and you have finished the race what God had for you. You told me I would be all right. You prepared me four months ago that you would be leaving on that 747 jet. I left work at 12:30 pm to see you again and talk to you one more time. At 1:30 pm you slipped. You passed with a smile and never looked back. You made peace and you loved the Lord who now has you.

Carol: What was that funeral like?

Susan: It was super, a slow home going celebration. It was unique in celebrating how he stood for the LORD. The church was full. My brother started to speak, but couldn’t finished because he was choked up. The grandsons were pallbearers.

Carol: I think you then posted this prayer on Facebook.

Susan on Facebook: I am missing my dad. LORD, please help my family to understand that it was time for him to depart from us, but most of all he left with a smile on his face. Thank you for the 88 years my dad lived and thank you for giving us him. Amen.

Carol:  I was praying for you all then and I am sure I posted on Facebook also. Facebook makes our world so small. How are your mom and the family doing now after his death?

Susan: Mom tries so hard to find things to keep her busy and we, as a family, are closer to her because of Papa Joe’s death. We want to be with each other more. 

Carol: What can other families learn from your story?

Susan: Stay with Jesus. He is the only One that can give you what you and your family needs when it’s time. Be strong and in control. Jesus is the answer.

Carol: Amen, sister! Thanks. It has been a pleasure to meet you and then interview you and follow your story. 

Interview of Karen, Caregiver for Her Mom

Karen and Her Mom

When Karen sent me two pictures, she said that even after taking care of her mom who had Alzheimer's the last years of her life, she can only remember her mom as happy. At the bottom is one of her parents she says--"happy times". 

Karen and I met somehow in the Alzheimer's caregiver blogging world. She would write on my blog and I would write on hers. She always seemed so lovely and was willing to let me interview her.

Carol: How long did your mother have Alzheimer’s and how did you come to live with your mom?

Karen: In total I believe that Mom had Alzheimer’s ten years or more while we lived with her. I was 4 months pregnant with my son when my dad died and she went right into baby-sitting. I got a divorce when my son was 4. Mom babysat for me while I worked and my son loved her so when I divorced we got our own place but my son wanted to stay with Mom. I figured why pay rent! Why not stay with mom all the time! So we moved in with her. She told me once that my son saved her life. She said she would have died without my son to care for! Mom and I were best friends. It was perfect. I did not date until after my son was in college. I just was so content with our life.

I drove a School bus and worked in the school kitchen when my son started school, so we would have the same hours. He rode a different bus than mine and Mom would be on the front porch at 3:00 waiting for him everyday. When he started middle school, I started driving a transit bus full-time for more money. I did that for three years. That is when mom‘s Alzheimer’s started.

As she got worse, my son would come home from school and find her walking down the street or at a neighbor’s house and not really remembering why she was there. As he got older she was not eating, not bathing and hoarding stuff in her room. She called my brother and sister all day and me at work over and over. My sis worked nights but she started coming over to care for her in the day while I was at work.

Anyway she got worse and worse. After months and months and years of decline she would not get up to go to restroom or do anything for herself. I would get up at 4 am to have her ready for my sis to come in after work to care for her.  Then I would go to work. That was not working for anybody. So I went back to being a part-time School Bus Aid. It just got worse. My sis was wearing down working nights and here during day and I was too from being here the rest of the time and working. My brother helped when we asked and he tried hard, but he is a guy and he felt awkward with Mom’s personal needs. He had to work too. Finally I gave up and became her full-time caregiver.

Carol: So the caregiving role just developed over time and anyway you were living with your mom. Your relationship with your mom seemed so mellow.

Karen: The reason our relationship was so mellow is that I am the baby of the family and my dad was a truck driver—we were used to each other and my sis and brother were grown and gone seems like forever and it was just she and I. We were best friends. I wanted to be with her more than with my girlfriends.

Carol: As the situation changed with the Alzheimer’s entering the picture was it hard to maintain the mother/daughter relationship?

Karen: Over time I lost the daughter mom dynamics. I went from daughter to caregiver. I regret that. I bossed her around so often and now I try to remember if I gave her any loving and did I talk to her in her last stages?  Or, did I just go through our routine of sleeping, eating, bathing, getting out of bed?

Carol: How long did you take care of her full-time after you quit work?

Karen: About four years at the end of her life.  

Carol: You didn’t seem to have much of a break in your caregiving from what I can tell on your blog. Was it stressful?

Karen: I remember sometimes I would be so stressed I would get in bed with her and lie beside her and just cry--wanting some love from my mom. But I don’t' think I gave her enough love.

Carol: Why do you say that?

Karen: Mom became like a child, and then a nothing--she was just there. NO words--never moved. I had to do everything. I hope your husband stays hard to handle because that means he is still “in there”. Hard on you, Carol, but better than his not responding to you anymore, I think.  Your husband might be hard to handle but he still argues and talks back to you a little so you know he still is thinking about stuff.

Carol: I am still fortunate after five years. We do talk and he tells me he loves me and I tell him I love him. Our routines are getting past the stubbornness. He is really not hard to handle, and I do have a volunteer caregiver neighbor who helps out when he can.

Carol: What was it like—switching roles?

Karen: At first she was very independent as far as paying bills and handling her money. She wanted to keep taking care of money matters, but she was writing checks wrong and not keeping up with the bills or losing them. So that was hard. I had to ask her, Mom, do you want me to write the checks for you? And at first it was no then later not now and then she would say later for like months. Then she got to where she would say yes. She always had to have lots of cash in her purse but was losing it. She would want to get $500 out of bank every month but not take care of it. She could not drive. Never did so and that was a blessing because someone would have to take her to the bank. We finally talked her into just getting $200 out. Very slowly she would give in to letting me do more.  As the disease got worse, the more I could do for her.

Carol: I have taken clues from others. I happened in our case that when I retired from full-time teaching, my husband fortunately turned finances over to me because he would work for another year. I still compliment him for the fine budget spreadsheet he set up that I follow. He caught me on-line banking and so I write very few checks. At times he asks to be informed. Also taking clues from others in the blogging community, my husband still has a wallet, a driver’s license that he doesn’t use and a key to our car.

At one time you placed your mother in a nursing home. What happened to bring her home?

Karen: We could not pay for another placement. She had too many assets according to DHS and not Medicaid to pay for bills--just Medicare. We lived paycheck to paycheck but she had two houses and they had to be out of her name for 5 years before she would be able to get Medicaid. If she had only had the one home I think she could have gotten it. But one house was rented and so we would have had to sell it and use up all that money before help. She did not want to sell it. It is a long story but she gave it to my sis. And she gave her house to me. But not on paper--just in the will. First thing we did wrong was not to get the titles transferred officially. It is hard but you need to explain to your parents that everything has to be out of their names and in yours for over 5 year now for them to get any government help. And if you are not rich, you will need help or have to live paycheck to paycheck like us. I cashed in my IRA and teachers retirement to pay off any outstanding bills and we used her and my savings as we went along when her Social Security check was not enough.

Carol: Name some extraordinary stress you encountered living this way.

Karen: She got so hard to care for that I bought a van with a wheelchair ramp and took her into see doctor for years, She would yell and scream and it got harder and harder. They put her on Alzheimer’s meds to slow it down and she was in the early stages for years with slow changes.  The mid stages were about 3 to 5 years.  The last stages were around 2 more years. But it was awful. We had to do every thing for her she did not help to do anything anymore. My cousin said to ask for Hospice to come to house. I said, No, she is not ready to die. My cousin said they would come if her doctor agrees with it and she does not need to be near death. Well I asked her doctor and they called Hospice.

To keep Hospice there has to be a decline in a patient every 3 months. Well it was slow but she did decline some. And hospice was so nice and wanted to keep coming. They paid for everything--all her needs. All I had to do was buy food. Thank goodness for them. It was great. They did take her off blood pressure and Alzheimer’s meds but she was never in pain--they made sure of that. She had Arthritis really bad so they kept her pain free. They came twice to 3 times a week depending on her condition. She would have a bad day or week and they would ask me if I wanted them to take her to hospice,  but she would come out of it. This happen at least 3 times in the almost 2 years they were coming.  But then she got Aspiration Pneumonia. Everything she ate or drank went in her lungs. She was choking on everything. They gave me options to take her to Hospital and she might get better but she would no longer be on Hospice or I could send her to Hospice and they would make her comfortable and let her go peacefully. I gave in and we took her to Hospice. It was awful. She was so sick. And I was so tired. I just needed sleep. The first night at Hospice I sleep on sofa all night. First all night sleep I had in years! The next day they said she coughed all night and I told them I did not hear her cough once. Can you believe it!  I slept though her coughing all night. Not good.

When she went to Hospice she had no pressure sores. I worked so hard to keep her turned and clean. I was so proud. That is the only thing I am proud of. I was not nice enough to her, I felt—it was just so hard. I just changed her diapers got her up, dressed, and fed her  like a robot . We had a routine and it never changed except on the days the Hospice Aid or Nurse would come.

Carol: Looking back, what advice would you give someone taking care of his/her parent with dementia?

Karen: If you are going to care for a love one fulltime, have the finances in order. Call an Elder Attorney. Ask for help. Get all the info you can get. And if you can, try not to be the fulltime caregiver.  Be the daughter or son and let someone else be the caregiver. I believe if she had been in a nice assisted living home, I would have loved to come visit her as a daughter--never a caregiver.  It would have been wonderful to have someone able to care for her at home while I worked. We could all be her kids and she our mom. I missed all the years we could have had in the later years because I was her caregiver and not her daughter. You can't get them back.

Carol: Since your mother died, was it hard to get back into the work force?

Karen: I used my recent experience. After she died I went to Lifestyles to work. It was working with people who have disabilities. All ages. I just helped them live on their own. I took them shopping and out on the town.  I helped them with chores or just ran errands. I did that for the first year, but I needed to get away from caregiving all together. I am a Courier now. I am driving again. I love to do that. I run in and out of clinics and banks picking up and dropping off stuff to them. Love it.

Carol: What a pleasure it has been to hear your story! You were an awesome daughter and maybe didn’t give yourself enough credit for the difficult job you had. Your advice is timely for others who read this blog. Thanks so much, Karen!

One of Karen's Favorites of Her Parents

 

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!