Sharing your story of caring for a loved one can help you relate to others experiencing a similar journey. It’s not always easy, but you are both proud of the care you provide, and you’re even happy to do it. We reached out to you, real caregivers, and have collected some of your incredible journeys to share with each other to connect. This is Maria’s story.
Humberto was born into a humble family in Cuba and always had the desire to do better. He enrolled in the military, married his wife and began a beautiful family. When he moved his family to the United States, he bought an apartment in Miami, where he still lives today.
More than thirty years ago, Humberto’s family took a trip to Disney World. When they returned home, his daughter Annette noticed in a home video that their father was walking differently than normal.
Annette began doing research in the library where she worked and decided she and her sister Maria needed to take their father to the see the doctor. Humberto was diagnosed with early-stage Parkinson’s disease.
For many years, Humberto did well on the medication his physicians recommended. Years passed, and he continued to live a full life, helping his daughters raise their children.
About seven years ago, Humberto had a mishap with his medication. Proper medication management is crucial to successful care of chronic health conditions, and unfortunately, the pills Humberto took were not meant to be taken crushed up.
The medicine began building in his system and became toxic. He was rushed to the hospital for a clinical overdose. It was at that time a neurologist in the emergency department told Maria there was nothing that could be done.
But she would not give up.
“I pushed the doctor and he told me to take him to a Parkinson’s specialist,” Maria said. “I called them immediately and they had a cancellation the next day.”
The specialist put Maria’s father on a different medication, and his health improved. But Parkinson’s is a progressive disease, and as time went by Humberto began to decline.
“First it was how he walked, then losing his balance, then not being able to walk, then the cane, the walker, the wheelchair—over 30 years,” Maria said.
Humberto was losing weight because he ate less, and as a result it was difficult to take him to see the doctor. Maria became very ill and her sister was struggling to care for their father without her help. Annette said they needed to call for hospice services in the home.
“My sister did the research, and we went through three different hospice providers,” Maria said. “Kindred was the last one. I have to admit, I was a bit reluctant.”
Hospice can be a difficult decision for many families, but Maria said she needed to do not what she wanted, but what her father needed. That’s when Humberto began receiving care from Kindred Hospice in the comfort of his apartment he had lived in for more than 50 years.
“Hospice was what we needed because it was something my father had asked,” Maria said. “When he was young and bought the apartment, he always used to say to me, ‘When I’m old, this is it. This is my place.’”
Maria said that when she was younger, the request didn’t seem real. She compared it to a picture. She said when you take the picture, it’s not important because you just took it; but 30 years down the road, the picture becomes very important. She wanted to honor her father’s wishes, and that’s how hospice became the right choice for their family.
“When [Kindred] came, I noticed something a little different,” Maria said. “The word that comes to mind was respect. They were respectful, and I felt like, ‘Wow, this is different.’”
Maria said the care team kept the family’s concerns and feelings in mind. Maria formed a bond with the nurses and the chaplain; they not only provided care for her father, but were also there for her.
“I reach out to the chaplain so often because there are a lot of challenging and difficult times,” Maria said. “It comes to a point as a family member when you think, ‘OK, but what can I do?’ And at that point you feel like there’s nothing you can do for him or for yourself. That’s when I call the chaplain, and he will pray for me over the phone.”
Maria recounts a moment when she had a moment of desperation where she felt she couldn’t breathe. She called George, the chaplain, and he prayed with her until her sister arrived to their father’s home to meet her.
Maria said there are financial, emotional and physical challenges to caring for a loved one. She especially feels the challenges when she sees her father in pain, when he doesn’t recognize her or when he has bad days and fights the care that is being provided to him.
But Humberto also has very good days when he remembers his apartment building or recognizes his family. Maria said even on the bad days, he’s still there, he still hears her and he still knows who she is—those are the moments she said she realizes keeping him on hospice are all worth it.
Maria advises others caring for a loved one to never try to do it alone.
“Trying to take care of a loved one who is very, very sick all by yourself is impossible. You have to reach out,” Maria said. “Ask questions. Look into different options. Don’t try to do it yourself.”
Maria said caregiving is also about sacrifice.
“At one point, I was ready to bring [my father] out of the apartment to my house, and the chaplain said, ‘Before you do that, let’s talk about it. Remember, he’s familiar with his surroundings, remember what he asked you, he’s not going to understand why you packed everything up and took him to your house.’”
The reminder was wonderful for Maria because she said having both her parents at home in the same apartment has been a blessing. They were able to see each other on their 65th wedding anniversary, where their mother sang for Humberto and he told her he loved her very much. Maria believes without hospice at home, that moment would not have been possible.
“To be able to give back to my parents is really very fulfilling,” Maria said. “Because when I needed them, they opened their home. Now it’s my turn to give back and say thank you.”
Maria wrote a letter to her father’s care team.
“I wrote this letter because sometimes I feel that we are too busy to say thank you. We are too busy to recognize those that are helping,” Maria said. “I felt in my heart that they needed the recognition I did not have the time, or the change, or the opportunity at the moment they visited, to say thank you.”
My father was enrolled in hospice by my sister Annette on September 2, 2015. At that time I did not agree with her decision. We had negative experiences with two other hospice providers and I did not think a third one would make a difference. A year later, I write to say thank you. Your staff has made a difference. Since the first visit we noticed that your staff was very respectful and understanding of all our concerns. We met Jaima, who was assigned to my father as his nurse, and we established a great relationship. She would visit my father and call me from her cell to give me an update. She went the extra mile for us when she was assigned another area and she requested special permission to continue to care for my father. This meant a lot to us, but especially to me, because I understood that she was going out of her way to continue to care for my father. Jaima saw the need, and she took a step forward to help. We recently have a new nurse that will take over for Jaima and she is getting to know us and the dynamics of our family. We are confident that she will also provide excellent care to our father. My sister Annette works closely with Liliana, Lily, Vargas, our father’s social worker. A few weeks ago, when hurricane Matthew was approaching, we had to move my father out of his apartment to my sister’s house. Lily provided transportation a hospital bed, mattress, oxygen tank, supplies, everything my father needed was there by the time he was transported. Lily did an excellent job coordinating everything and worked closely with my sister. When I first met Lily she worked with me and recognized that I was working and going through a difficult time. She made a special visit to my father and coordinated a time of the visit so I could be there. I talked to her for an hour and she followed up with written information and suggestions that I still follow to this day. Lily has always been very helpful and sensitive to our needs. Our chaplain, and please note, that I say, our chaplain not his chaplain, George, has provided emotional and spiritual support to the whole family. He has a great ability to listen and not judge is very valuable in moments of distress. He answers my calls when I am falling apart and in a total panic. He prays with me over the phone when I reach out to him in moments of desperation. The peace that comes as a result of those prayers is unique, just as he is. Please recognize these members of your staff for their dedication, hard work and faith. We’re very thankful to God for them because in the midst of our pain, we know we can count on them. May God bless them and give them strength to continue to help those in need.
To learn more about hospice care, call 1.866.KINDRED to speak to a Registered Nurse 24 hours a day, seven days a week. Our team will listen to your unique situation and answer any questions regarding care through hospice services.