Family Caregiver Preparedness: Hiring In-Home Help

Aimee

Family Caregiver Preparedness: Hiring In-Home Help

Aimee
For five days beginning May 1, we’re sharing our thoughts about being prepared for a caregiving experience, for what happens during a caregiving experience and then the aftermath of a caregiving experience. I’m collecting data and stories on the topic of Family Caregiver Preparedness, or the lack thereof, and how it affects you, your caree, your caregiving experience, and your life overall.

Today, on our second day, I'd love to hear your thoughts about experiences with hiring in-home help. Please feel free to share the good, the bad, and the ugly. How much do you know about recognizing and accepting the need for help? What do you need to know about realistically assessing the home care needs? What conversations do you need to have on topics such as: household care, financial care, personal care, health care, and emotional care? What do you know about questions to ask prospective private duty and staffing agencies, home health care agencies, and hospice care agencies?  

Please share your thoughts in our comments section below.

Thank you for sharing your experience! This helps tremendously as I continue to gather stories and data on this topic. I hope writing about it will be helpful for you as well.

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LeatherLady64

Hiring in home help was a definite nightmare. My situation being different than most, due to the aggressiveness of my caree. He is 100% dependent for all his care, ADL's , etc. We lived in Texas, close to 2 hours away from his family, and they had lives of their own. Living on a limited income, made hiring help impossible. He finally qualified for a program through the state. That was only the first hurdle. Waiting for the state to fund care and determine the number of hours, was an excruciating wait. Then I was sent a list of potential agencies that did In-home care was next. I was always upfront about the risk of his aggressive behavior. One was finally willing to give it a try. After weeks of them trying to find the right attendant and interviewing 3 possibles, it looked like #4 was a fit. She came and we talked about hours and I was very flexible. She came from 3p to 9p, for a week. The first time I asked for actual hands on experience, she quit the next day, not just me us as a client, but, the whole business.\n\nWe moved to Virginia to be closer to my family and my support system. The nightmare began, all over. What made it even more difficult, is that he became eligible for Medicare... A whole new set of issues. After 6 months of assessments and denials and more assessments, we were finally approved for an attendant. Luckily in the state of Virginia, they have a program where you can hire the attendant, you just have to go through an agency for them to be paid. My daughter and daughter-in-law both learned what to do when I was not here so that I could finally get that long needed respite. We started out with 56 hours a week (8hrs/7days). Recently, that has been reduced, but, I am still thankful that he still qualifies for in home care.

CathyJ

I am so much less prepared in this area. At this stage, my husband and I provide primary care and I have two sisters that help on weekends. I have learned that I need to have other supports available so have reached out to a cousin who loves to come and stay with mom if we need to do something during the week. At this time, I see in-home care being more of a need for my self-care. One of the challenges with hiring in-home care for mom is the rural nature of our community. Mom was a highly regarded school teacher and knows many people. She is alert (and proud) enough that hiring in-home care would be hard on her spirit. I will have to carefully gauge the time when it is more important for her to have the care than it is to worry about her being uncomfortable with having someone who is not family here to care for her. \n\nAnother issue regarding in-home care is financial. My mom is on a fixed retired income and my husband and I have both quit our employment to take care of her, so there are not \"extra\" resources for hiring in-home care. I have made limited (probably not heart-felt attempts) to look for resources, but admit that I get discouraged there easily. It feels like such a searching expedition to find resources.\n\nThe emotional aspect of in-home care is tough for me as well. It speaks to that moment when we know it is no longer an option because mom has declined to that state. Some days, it is just easier to stick my head in the sand and not think about that day coming.\n\nI know I need to focus on this area. I have gathered some guides/resources and my husband and I have conversations as well. The actual committing to developing a working plan and identifying steps has not happened though.

Theresa

Hello, my experience with hiring in home help comes from my caregiving experience with my Aunt Georgia. I love my Aunt Georgia and would do anything for her. I was her Goddaughter and she never had any children. At the age of 93 she was losing the fight with colon cancer and was on hospice care. Before the return of her cancer, she was thriving, still driving, and living alone. She thought the pain she had was from a pulled muscle from walking on the treadmill.\nI was surprised that even though we were signed up with a hospice agency, they didn’t come as often as I thought they would. In the beginning they only came every couple of weeks, then every week, then twice a week. When they came, they only checked her vitals and made adjustments to medication and asked how I was doing. At the time I was also caring for my husband who was home on full disability. He could keep my Aunt company, but he couldn’t do anything else. \nI first reached out to people I knew, people in my Oikos (community). I found a cousin that just received her GNA (Geriatric Nursing Assistant) certification. She was willing to come to take care of my Aunt during the day. As the disease progressed, I needed someone to come sometimes in the evening or on weekends. I found a neighbor that was a retired nurse and she agreed to help. At the end, I had one person during the day, and I had the retired nurse come to help her get settled in the bed at night. It sounds a lot easier than it was. It took about an hour and a half to finish the bedtime routine. I wanted so much help because I wanted my time with my aunt to me more than me just managing her care. I wanted time to sit with her. I also had to save my strength for the long nights ahead which required me to get up and administer medication, and other things to make sure she was comfortable.\nMy experience taught me that it is important to reach out to people you know who are willing to help. They were all happy to do what they could, and they taught me how to care for my Aunt. I had to learn how to change her bandages, how to administer medications, and…there was so much to learn. Hospice was also helpful in advising and guiding us.\nIf I used an agency it would have cost twice as much. I was able to work out special pricing with those that provided in home care for me. Towards the end of her life, hospice sent someone once a week to help with bathing, but that person only stayed about an hour. I also reached out to members of her church and they would come and sit with her, provide conversation, comfort, prayer, or just sit. When they would come, it gave me a few minutes to do other things.\nIf I were to hire an outside agency, I would want references and I would call those references to see what their experiences were with that person or the agency. I would want to know if I can call them after hours with questions or if there is an emergency. I would ask about onsite respite care.