Caregiving Experiences

I’ve never been a caregiver before and I realize now it’s really hard. You don’t know it until you become one but being a caregiver is really hard. So many hardships! Is what I’m feeling normal? Sometimes I just want to give up but I just have to keep going. Its my first time and I have had so much to learn.

Caregiving is the hardest thing I have ever done, but it is also the greatest thing I have ever done. I don’t regret one minute of it. My sister moved in with me a year and a half before she passed away. I’m divorced and my kids are grown. It was the best year and a half, it was really great. As hard as it was, it’s the greatest gift I could have given her, just being there.

We have a large extended family, which meant a lot of company. In the last week we tried to schedule everyone so someone was there all the time, but I was the main caregiver. It was hard. Mom had a one-bedroom place so when someone would come in those last days I wanted them to have privacy with her. When she got so ill and she knew she was dying she got a little paranoid. She wanted all the company and then at the end she asked, “why are they coming to see me now? What do they want?” People she had not seen in years showed up. That was not her. It put me in the middle which was very hard. It was a lot caring for her and then I had to monitor all the visitors.

I kind of had an idea of what caregiving would be. I imagined it and it was not too far from what I imagined. My patience was frazzled and worn and at times I thought maybe it would be better if mom went to a nursing home. I would catch myself screaming or hollering at her, or talking and being disgusted. I was just worn out. I was not always very nice, I didn’t mean to be that way, but I was. I had to be honest enough with myself to know where I was. Mom and I were close my whole life, mom and dad were real close. I could not have imagined having mom anywhere else but at home for her last days. I wanted to make sure that every day it was like going to a job and I had to make sure that the customer (mom) was satisfied. I wanted her to be happy here. I want to make sure I always treated her wonderfully becomes I hope I was doing as good by her as she did by me when I was a kid growing up. I’m sure I tried her patience a God awful lot.

Hospice Experiences

Hospice was helpful to us. For example, the social worker helped by answering all my husband’s questions. I was able to sit back and observe as she gave credence to his concerns and tried to help him. The nurse was fabulous by helping us understand what was going on. I would always go to our nurse and ask why this was done or how I should do something and she would always explain everything so I could understand where we were.

I liked that hospice would work together with me to come up with a plan to keep mom’s pain under control. She didn’t want to sleep but she also didn’t want to be in pain. Hospice helped us find a way to let her have a normal life rather than sleeping in the chair all day.

I appreciated hospice working on mom’s pain. There were times when I called and got immediate help. The nurse would give me directions on what to do and each time I called the pain was taken care of. I needed help in understanding the process, knowing when we needed to give her enough pain medicine, but not too much. The team was helpful in giving me confidence I was doing the right thing. I was very very satisfied with hospice. They were extremely helpful and I learned a lot through it. I felt supported and felt in control for the first time. It was wonderful not to be dependent upon going to the emergency room, that experience was never good. I felt like we had a team supporting us and felt like we could do this. They were very helpful.

My sister was fairly young, only 54 when she died. It went very quickly at the end. She was on hospice for almost a year and a half. She was mobile and able to walk until the last two weeks. The last few weeks she was so sick she could not get out of bed. Hospice was wonderful. My sister was fortunate that she had the same nurse for the entire 11/2 years. She and the nurse became very, very good friends and I became good friends as well. She just kept adjusting to every setback and the nurse was able to manage my sister’s medications. I started working from home alot, and was making sure that she did not have any additional questions.

Research Experiences

After hearing about the opportunity to participate in your research I decided to say yes because I figured whatever I’m going through might help somebody else. I think I saw it as a benefit for those coming behind me. I wasn’t sure what I was going to be expecting or getting into but I just figured the more people along on my journey, the better. To my surprise it has not only given you things to benefit others but I have also benefited.

Answering your questions every couple of weeks in the surveys helped me to be aware of what I should expect or what I could expect as a possibility of my emotions. The questions kind of helped put into perspective where my hospice team were coming from. They helped me to feel more grounded in what I am going through. I mean things are the way they are. I’m dealing with three of my children going through things as well. There’s so much stuff going on. I would say that the research questions were pretty pertinent questions and mostly answering them just helped me just to keep my focus on myself as I’m always focused on my husband’s situation rather than mine. I realized I need to be aware of how I’m feeling and what I’m doing and how I react to things. Just answering the questions made me aware so that I was aware and gave myself more grace to go through stuff.

I was surprised that there was research that focused on me. We were always approached before about research for my husband. I felt special and felt like what I was experiencing was important, not to mention the fact the research itself helped me. I would encourage other caregivers to take a chance and give a little time to yourself by participating. Having a study focused on me and my feelings will surely help people understand the problems and challenges of being a caregiver. Participating helped, the intervention helped, I encourage all caregivers to give it a try. Thank you for the opportunity.

I wanted to participate in your research because I felt like that was something that I could benefit from and maybe help some other people. I didn’t think it would be a burden because I had a lot of free time. I was just kind of sitting around the house all day with my dad. So, I was available. Some of the questions actually did kind of make me think because for the most part, I don’t really give a whole lot of thought to my own emotional wellbeing. I just kind of go through the motions and do what I have to do. But some of those kind of made me think about my own thoughts on my emotional state.