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As a caregiver for a person with Parkinson’s Disease (PD), in my opinion, you are an everyday superhero! Parkinson’s is a complex, progressive disease with no cure. Every person’s Parkinson’s journey is unique. It may begin with a tremor in a finger and progress to daily challenges: difficulty with walking, talking, swallowing. Even simple movements can become arduous.
April is Parkinson’s Awareness Month. This April in particular will be a month to remember due to the pandemic caused by COVID-19. If you are a primary caregiver for a loved one with Parkinson’s, it’s no doubt been a month filled with moments of fear and anxiety. Thankfully, seasoned caregivers have a toolbox filled with strategies to help them get through the day. They know who to call, where to seek help, etc. Primary caregivers are experienced, resourceful, and creative. But what about those of you who became accidental caregivers during this time? You were living your life with all the necessary systems in place when the pandemic struck and life changed. We are all sheltering in place, working from home, homeschooling children, and now you are also a caregiver--an accidental caregiver with a big heart, full of love and compassion but not a lot of experience! Through this pandemic, many families have had to make new decisions about their loved one’s care:
That was the beginning of my mother’s health journey. She was diagnosed with PD a few years later and passed away in July 2018. I miss her every day, but I'm thankful for the many lessons she taught me as one of her caregivers. I would like to share a few of them with you today:
Wishing you peace, love, and sparks of compassion. Debbie A version of this post also appears on Caregiving.com.
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One of the items on my To Do list is the Merge and Purge! We have 2 full houses that need to fit into one. Some of these items are treasures and some not so much. It’s a good thing rummage season is right around the corner.
The task of merging and purging is overwhelming. I need help. I need a system. Enter Marie Kondo and her book, the life changing magic of tidying up. There is a new Netflix series, Tidying up with Marie Kondo. Have you read or watched? In the media you’ll find articles about Thrift stores being overwhelmed with donations from people using the KonMari method on their closet. Now that I had a system, I needed to start small. On small treasures. Not the whole house. I chose to start with things from my mother. After she passed, I asked my father for her bathrobe. I zipped that bathrobe on her every day I cared for her and it was lovely. A plush red robe. My dad said yes, I brought the robe home and washed it. I couldn’t bring myself to put it on. I brought it back to Dad and we donated it. The second item I asked for was a blouse I bought for Mom in the past year. It was stylish and I thought I could wear it. I brought it home, washed it, hung it in the closet. I can’t wear it. It’s waiting to be placed in the rummage pile. What’s going on? I love these items and yet I couldn’t wear them. Then I remembered my mother’s socks. My mother loved fun socks. The more outlandish the better. She had them in every possible theme. She started wearing themed socks when she joined the Rotary Bowling League. They would compare socks each week and had fun doing it! As her health declined, she didn't clothing or jewelry, so I started buying her fun socks. She loved them. I sought out the best quality fun socks I could find. Have you every tried putting cheap socks on someone else, an adult? You need good quality, stretchy socks for that job. Mom wore socks every day. In the last year or so, she didn't wear sandals or even slippers. She needed to wear a solid shoe or sneaker to help with her walking and balance, therefore she needed socks, so why not make them fun? When it was my morning to dress mom, I would pick out socks to match the season or her t-shirt or our mood! It was always a happy time to look at the socks, pick out a pair and put them on. We both smiled. It was a little ray of sunshine in our routine. It's nearly seven months that Mom is gone. We don’t need to pick out fun socks anymore. Around Christmas, I asked Dad if I could have some of her socks and of course he granted my wish. I went to her dresser and carefully curated a collection of her socks, all of which I bought for her, they are the good quality soft and stretchy kind. I didn’t know what I wanted to do with them but I felt a connection to them. It took awhile, but I decided I would wear them. It felt weird, so I decided I would hide them under boots so only I knew there were hearts or shamrocks on my socks. As time wears on I let them peek out. I still find myself looking at socks when I am out shopping. Recently, this happened while I was browsing in Talbots. I found myself looking at the socks and thinking of Mom. I reminded myself that she didn’t need new socks. But I could buy them for me. I too deserved good quality, stretchy socks. Mom would want me to have them. Why can I wear my mother’s socks but not her robe or her blouse? Let’s check in with Marie Kondo. Her advice is simple: Hold each item, use your intuition to feel the energy of the item then decide if it sparks joy. If it sparks joy keep it, if not let it go! The robe reminds me of Mom being sick, helping her in the bathroom, etc. No joy. The blouse reminds me of Mom sitting in a wheelchair. No joy. Can socks Spark Joy? Yes, they can! All of the socks spark joy for me. They embody Mom’s fun loving spirit, her joie de vivre, her smile, her laughter! Joy! I am reminded of happier times when I select a pair and put them on. It feels like Mom is with me. Now, I proudly wear my mother's socks, it is a simple way to keep her memory alive and her spirit close at hand or in this case, close at foot. Wishing you peace, love and sparks of warm memories. Debbie My mother loved fun socks. The more outlandish the better. She had them with every possible theme: cheeseburgers and fries (her favorite lunch), Mickey Mouse (one of her favorite vacations), angels, holidays, etc. My recollection is that she started wearing themed socks when she started bowling in the Rotary Bowling League. They would compare socks each week and had fun doing it!
As her health deteriorated, she didn't need much clothing or jewelry, so I started buying her fun socks. And not just any fun socks, I sought out the best quality ones I could find. Have you every tried putting cheap socks on someone else? You need good quality, stretchy socks for that job. Mom wore socks every day. In the last year or so, she didn't wear sandals or even slippers. She needed to wear a solid shoe or sneaker to help with her walking and balance, therefore she needed socks. When I would dress her in the morning, I would pick out socks to match the season or her t-shirt or our mood! It was always a happy time to look at the socks, pick out a pair and put them on. We both smiled. It's six month's today that Mom is gone. About a month ago, I asked Dad if I could have some of her socks and of course he granted my wish. I have 6 pairs of her socks, all of which I bought for her. When I wear them I feel Mom is with me. It's a little hug on my feet. I find myself looking at socks when I am out shopping, then I remind myself, no she doesn't need them anymore. I can't believe it's been six months since I have held her hand. That's what I long for most now, to simply sit beside her and hold her hand. It's what I could count on every day. Sit in the chair beside her bed and hold her hand and of course talk to her. I would tell her that days' tale of woe and she would listen. Sometimes she would react by lifting a finger to point or she might say a word or two or even smile or frown (depending on the story). I miss her more than words and I have a lot of words. I talk to her all the time. I visit her grave frequently and talk to her. When I need it most, she sends me a sign. Recently, on my birthday, I was driving from my parent's home to the cemetery for a quick visit. The most spectacular cardinal flew directly in front of my car as I was driving. It seemed to be going in slow motion so that I could see it. This wasn't lost on me. With tears in my eyes, I silently acknowledged Mom and all of my heavenly posse. They were with me, she was with me, on this special. day. My mother loved fun socks. Fun socks were part of our daily dressing ritual. It's a connection we share. One I don't want to break. I now wear my mother's socks, its a simply way to keep her memory alive and her spirit close at hand or in this case, close at foot. Wishing you peace, love and sparks of fond memories, Debbie "I'm going to make the referral for hospice". At first I thought, "Great, we will get more help with Mom!" Then it sunk it, while hospice does provide more help, it's end of life care.
I can keep a stiff upper lip and positive outlook most of the time. The palliative care nurse visit was on a Thursday which was followed by 4 days of Mom not doing well. Lethargic, uncooperative, distant. When the first hospice company called on Friday to schedule an appointment that afternoon, I said OK. They called back 15 minutes later to say, we were not in their territory and the referral was being transferred. The second hospice company called on Saturday and this call was different. Lots of information that I really wasn't ready for, more 'end of life' discussions. But this agency was a VNA and not my VNA. After that call I thought, if we are going to do this we will do it with my friends at the VNA of Somerset Hills (VNASH). Monday morning I hopped on the phone with the Palliative care company to change the referral to VNASH and they were happy to change the referral to an agency with which we were comfortable. Tuesday morning I confirmed the referral had been made and we were in process with an agency we know and trust. Monday was a particularly hard day. It was a struggle to get her up and out of bed, washed and dressed. She didn't want to take her meds. She refused to eat 2 different breakfasts. She has more strength in her lips and her hands than I do. I sat at the kitchen table frustrated with tears in my eyes. I kept asking her to eat, to respond, to give me more information. Nothing. I walked with her to the family room and she barely made it down the 2 stairs and into her chair. Once she was settled, it was time for me to go. I left with tears in my eyes and a lot on my mind. What if this was the beginning of the end? My practical self starts worrying about logistics and finances. My emotional self is simply sad. While Mom doesn't have a great quality of life, she's still there and I can get her to smile and hug me. I cried my way to Mah Jonng (MJ) and my wise MJ ladies picked me up. They have been through this before and shared stories of bad days followed by good days. One is a hospice volunteer and shared that people go on and off hospice all the time if their health improves. Their message was compassionate and at the same time a pep talk: chin up you are strong and will get through this. I believe people come into your life for a reason. My MJ support team has been with me on this journey with sage advice, a needed laugh and compassion. Monday night I was still upset (in spite of the MJ pep talk) and couldn't even call my Dad to see how the evening went. When I slept that night I had vivid dreams of a loose tooth. It was odd. It recurred multiple times. Tuesday morning as I drove to my parents house, I had a pit in my stomach. We had a Dr's appointment for Mom which meant getting her out of the house and into the car. I couldn't imagine this with her behavior the past 4 days. What are we going to do? When I walked into my mother's room, there she was...bright eyed and ready to get up. She wasn't sweaty. Her blood sugar was great and she was able to sit up and stand up. It was a good day. She ate her breakfast, drank her coffee and walked down the stairs to her chair. The tide had turned, at least for the day. We made it to the Dr and back without incident and I left late in the afternoon feeling OK. My dream of a loose tooth wouldn't leave me, so eventually I googled it and there are lots of interpretations out there on dreams of losing teeth. I didn't lose a tooth in my dream, it was very wiggly and loose. My interpretation of my dream is a realization that I'm not ready. I'm uncertain of the next steps for my mom and we need to keep pushing forward, asking questions and getting help. The first step in any plan is to understand the problem you are trying to solve. In my case, the realization that I'm not ready to let go is a big part of planning for the next phase of my mother's life. It's an interesting quandary: It's not about me, it's about her but I can't lose sight of my needs, my father's needs, my sibling's needs, etc. Isn't that the essence of caregiving? Have you dealt with a family member or caree going on hospice care? What was your experience? I can use moral support through this process and I hope you share your experiences in the comments below. Wishing you peace, love and sparks of compassion, Deb As a family caregiver, you answer questions all day long. Who's her neurologist? What's her blood pressure? When did she eat today? Where is her new walker? Why is she sleeping? Fact based, straightforward and usually easy to answer questions.
The most difficult question is more opinion based, more revealing, more sensitive. For me the question is: How is your Mom? It's also the most personal question because most of my decisions each day revolve around the answer to the question: How is your Mom? When Mom first became ill in the Fall of 2012, the answer was easy: Mom's a fighter, she's strong and getting better every day! She had a gastro-intestinal issue that required a lengthy surgery right after Hurricane Sandy. In the recovery room she had us laughing because she whispered to us "I guess I won't be able to wear a bikini". My mother doesn't wear a bikini! My mother's sense of humor was alive and well and I knew she would be OK. She bounced back within a few months. When Mom fell in the Fall of 2014, she broke her arm. She had fallen right before my eyes, like a tree that had been chopped down. We had lots of questions. She was in the hospital for several days and then we had our first experience with rehab. Our choice of rehab was terrible and we brought her home within 5 days. I earned the title of Advocate for my mother and the answer to the question was getting harder. She wasn't as resilient, not fighting as hard to get well. Mom was OK and needed physical therapy to get back on her feet. This past year was difficult for Mom. She fell and broke her hip in May and then fell and broke ribs in September. Her health is deteriorating. She needs constant care. We are frequent fliers with the Visiting Nurse program and Home Health agencys who all ask, "How is your Mother"? On good days, the answer is Mom is OK, today was a good day. I usually post silly selfies of Mom and I and try to keep things positive. On bad days, the answer is Mom is OK. We know that sometimes making it through another day without major incident is all we can do. No one really wants to hear the ins and outs of caregiving. What foods we experimented with to try to get mom to eat. What music worked today but won't work tomorrow to get her to walk. Or how her hands won't open any more. The reality is my mother is not going to get better. The Parkinson's Disease is winning, robbing her of the ability to walk, talk and care for herself. My Mother is a fighter, a strong woman but unfortunately she is giving up. I can't say that I blame her. She's been like a Timex watch, she takes a licking and keeps on ticking. Until now. Caregiving is hard. There are days when I am so angry. I'm angry because my Dad has lost patience with my mom. I'm angry because I lose at least 2 days a week to caring for my mom. I'm angry because it's really hard to focus on life and get things done when all you think about is your mom. Caregiving is a gift. I have the luxury of being able to spend time with my mom. I get to experience the good days when she decides she wants to talk and asks me questions! It's an honor to help her at this time in her life after all that she has given me. I understand the question, How's Your Mom? comes from a place of caring and concern for me, my family and for Mom. I don't want to answer the question with a simple OK, I want to shout that she's AWFUL, that it's NOT FAIR and no one DESERVES this quality of life. But I can't. That wouldn't be fair to the person asking or my mother. I will continue to be her advocate and preserve her dignity. I will share more information with my closest friends and keep up the good fight. It's difficult when someone you know is caring for a sick friend or relative. Don't be afraid to ask the most difficult question. Be prepared for a canned response. And know that your simply being there and caring is the world's greatest gift to your friend. If you are a caregiver, what is the most challenging question you are asked? How to you respond when asked about your caree? Please share your comments below. Let's start a conversation and support each other. Wishing you peace, love and sparks of perseverance, Deb Mom and I loved to play Santa to children each year. We would always pick at least one name from the Giving Tree at church and sometimes one from the Giving Trees at work. We would plot and plan our shopping trip to figure out which store would make our money go the farthest because we were trying to buy as many items on each child's list.
This year, Mom and I went to the Mall to simply see the decorations and do a little "targeted shopping". The days of going to the Mall for hours and wandering around with Mom are gone. I push her in her wheelchair and we spend no more than an hour. It breaks my heart. My mother taught me how to shop! On that day in early December, we had wandered around a bit, bought one or two things, looked at the decorations and were leaving when I spied the Salvation Army Giving Tree! I stood there reading every child's wish to my mother and then selected two children to shower with gifts! As I shopped, my heart was full and broken at the same time. I missed my mom, who would often say "don't worry about the money, let's just get the gifts" when I was figuring out the best price, package, etc. So, I got the gifts. I bought everything on each child's list. (Let's not get crazy, I did establish a budget and maximized it.) I told Mom and Dad about my shopping spree and how I had a large shopping bag of gifts for each of the children that included toys, clothes and of course Christmas PJ's. And all within budget! We laughed, smiled and felt the spirit of Christmas. That was our early Christmas Gift. I know today that Mom gifted me her Giving Spirit. We didn't always have a lot growing up, but we always had enough. We always made time or resources available to give back. When we didn't have extra money, we gave our time. And we had extra money, we gave it. The Giving Spirit. When I brought the bags of gifts back to the Mall for the Giving Tree, I was happy to give and sad that I was dragging the packages in by myself. My partner in crime was not with me. What I later realized was...Mom was with me, not in person, but in the Giving Spirit. Do you have a favorite holiday memory with your Mom, Dad or caree? Holiday memories are special. I would love to hear your holiday memories. They are the stories that keep traditions alive! Please share the comments below. Wishing you peace, love and beautiful memories, Deb Welcome to Tuesdays with Mom. My goal is to share with you the tears, the laughter, the joys and the frustrations of being a part-time caregiver and a full-time advocate for my mother, Barbara. It's the hardest job I've ever had and yet the most rewarding. My hope is that we can start a conversation, learn from and support each other through this shared experience.
Being a caregiver for a family member is a individual journey, but we are not alone. According to a 2015 AARP study, there are approximately 15.7 million family caregivers in the US providing care for a person with Alzheimer's. Overall, there are nearly 40 million family caregivers who provide care to an adult family member. If I have 40 million caregiving peers, why does it feel so lonely? It's time for me to reach out and share my stories with the intention of providing and receiving support. My journey begins 5 years ago when my mother's health started to decline. In the Fall of 2012, she had a major diverticulitis attack which involved perforated intestines and a wicked infection. She spent a week in the hospital then came home with a PICC line for daily antibiotics and a drain for, you know, the infection. (Yuck). While we had the support of wonderful Visiting Nurses, Mom was under the care of Dad and me. We used to kid around that we were B and D Nursing (Bruce and Debbie) and we had no idea that we were predicting the future. That Fall, we made it through 2 months of daily antibiotics and care for Mom. The night before Mom's surgery was difficult. Prepping for intestinal surgery is worse than preparing for a colonoscopy. Lots of laxatives and antibiotics. Mom has a very strong will and she refused to take some of the medicine. I spent hours with her, cajoling her to take the meds with little success. I made frantic calls to the nurses who assured me everything would be ok. At one point, in sheer frustration, I walked out of the house in tears and went to the mall to clear my head. My Dad was the hero that night, he sat with her, got her to take some of the meds and she eventually settled down and was able to sleep. She had a lengthy intestinal surgery that was successful except for the part that she was under anesthesia for more than 6 hours. We've learned that anesthesia is not a good thing when potential neuro issues are present. Stay tuned for more on that part of the story. My Dad is a Funeral Director and the nicest guy I know. He retired in 2008 and was asked to come back to work part-time in 2010. This part-time work was good for my Dad because in retirement, he and my Mom didn't have much to do. They worked hard all of their lives and didn't develop many hobbies. Dad now works Tuesdays and Fridays, and is Mom's full-time caregiver. Over the past 5 years, when Mom was sick and Dad needed to work, I would spend the day with Mom. As her health has declined, we enrolled Mom is a local Adult Day Center (ADC) which was a great experience for her. At this time, she is unable to return to the ADC program and I spend Tuesdays and Fridays with Mom. Recently, my boyfriend asked where I was going and I replied, "remember it's Tuesday with Mom". He said "that should be the name of your book" and I replied, "No, it should be the name of my new blog!" and this blog was born. I hope you will join me here and share your experiences, advice, questions, concerns, tears and laughter. My intention is to create a space where we can support each other as caregivers. Please leave a comment below. Share a thought, a story. Ask a question. Ask for support. You are not alone. Wishing you peace, love and inspiration, Deb |
Debbie moultonDebbie is a wife, daughter, sister, aunt and friend to many. She served as a part-time caregiver and full-time advocate for her mother, Barbara, who passed away from Parkinson's, Alzheimer's and Dementia in July 2018. Her mission is to help caregivers not only survive but thrive during their caregiving journey! Archives
April 2020
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