In Retrospect

Janet Gutierrez, MS, is a retired medical social worker and adjunct professor. She has spent the last 30 years in research with soap, making aromatherapy due to skin allergies and is a nationally certified professional aromatherapist. She teaches classes regarding aromatherapy and body care products. She has spent endless hours in research with essential oils and Alzheimer’s disease. Janet resides on the prairie in rural Kansas.

Why is it important that caregivers care for themselves? Because we are the glue that holds everything together. When we do not care for ourselves, the glue becomes weak. When that happens, we lack the strength and the ability to hold the family together. 

Let me start by explaining why I know this. I was a caregiver to my hubby. 

He had early onset Alzheimer’s disease and died at the age of 44 in 2000. He had the genetic type. His father also died from this disease. I had an autopsy completed on my husband, and it showed he had Alzheimer’s disease, Lewy body dementia and high cholesterol.

I was working as a medical social worker, and had two children at home. When I was caregiving, that was all I did. My hubby had retired from the Air National Guard after serving  active duty in the US Air Force for 12 years. We were a military family and had relocated so many times that we did not have family nearby. My daughter helped two days a week and my husband was in adult day care three days a week for about six hours each day. I cut my hours at work. I had to keep working for health insurance since we had mounting medical bills. 

Looking back, some memories are blurred. Grief was definitely blocking my ability to recall things. I was in crisis mode for over a year. My son, who was 15, was having a difficult time. He was in and out of drug rehab and counseling. Some days I did not know how I got through it, but for the grace of God and my church family. 

We had some wonderful people from our church that would step in and help, but I never asked. A few close work friends offered to sit with my husband while I ran errands. I usually took him along, as long as he could walk. I decided to have all of us travel back to Los Angeles to allow my husband to see his family about eight months before he died. 

We stayed with his mom and then a few days at his sister’s home. It was difficult but much needed for everyone. My daughter also decided to get married at the end of that year. I then not only had to provide care for my husband, but I was also dealing with my son’s drug dependency and a wedding to plan. 

I never bought any clothes for myself and only did what I absolutely had to do. I made sure my children’s needs were met: clothes, healthcare, meals, house, bills, and such. 

My daughter and son-in-law spent a lot of time at our house, and that was a blessing. In the last month of my husband’s life, his mom, sister and brother came and spent time with us. They were helpful emotionally. My work sent meals over daily. My church family also provided prayer, meals and support. I did not work that last month. 

In retrospect, I would have only changed one thing: I would have allowed people to come over and sit with my husband. Why did I not allow it? Probably because I could do that. I really needed someone to clean, or do some yard work. Money was tight, and I was too proud to ask, but to me that meant I could not accomplish what I have always done. I was exhausted. 

When I saw my son’s physician, she said, “Oh Janet, you don’t look too bad!” I thought, “Oh gosh, how bad did I look?”

Fast forward to today. My beautiful daughter, who is now 44, has this dreaded disease. DNA testing was completed on my daughter. This DNA testing was not available when my husband was diagnosed. He was overseas and the physicians had to rule many diseases out to eliminate any disease.

My son-in-law is a wonderful husband. He was able to sell his business and stay home. He is not like me,  and he asks for help. I help out a day a week. His mom helps out two afternoons, and he hires some friends’ wives to come a few times a week. My son-in-law has taken time to get away with their 20-year-old son and has taken long weekends to camp with friends, leaving her at my home when he’s gone. My daughter is now in palliative care.

In retrospect, here are some of the things I wish I had done, and now recommend that other caregivers do: 

1. Take time for yourself as the caregiver.
2. Allow people to help you, do not be proud. Tell them if you can or cannot pay them.
3. Seek counseling. This is tough, and it’s going to get tougher.
4. Self care, massage, coffee with friends, church, bible study.
5. Allow others to make a meal for you and your family. Eat easy but healthy meals.
6. Attend a support group if one is available and near your city or town. Nowadays, you can also join Zoom or online support groups.
7. Relax, listen to soothing music, watch a comedy. You need to laugh
8. Allow yourself some retail therapy. Buy yourself some item of clothing that you need or just want. Just watch the money.
9. Take time out and pause, take in the scenery of your yard, listen to the wildlife, birds, watch the sunrise and sunset.
10. Take a nap, rest, and make sure you are sleeping.
11. Listen to your body. Stress can really disguise itself with physical ailments.
12. Make sure that you are eating and keeping hydrated.
13. Exercise
14. Cry. It’s OK, and it’s needed and healthy.
15. Some people do not know what to say or what to do, but want to help. Let them know what they can do for you. They are reaching out in the way they only know how, it may be awkward.

I am reliving this disease all over again with my daughter. I’m not her direct caregiver, but I do help out weekly. When I come home, I’m exhausted, sad and tearful. I cannot change anything but how I approach each time I’m with her. I did seek some counseling. I had attended a grief group after my husband died but not individual counseling. 

I now schedule a massage monthly, and I take vacations. I have coffee with girlfriends and I’m active in bible study. I’m very active with a small business, even though I’m a retired social worker and adjunct professor. I sit outside, as I live in a rural place. I listen to birds, insects, coyotes, and my fur babies. I enjoy the moment. I do ask for assistance from time to time. I still cry and feel sad, but I know that I am dealing with this grief better. 

You are the glue that holds your family together. You need to make sure that your glue is strong.