A Daughter's Love

Hello All,

My name is Irene and my brother and I have been caring for my mother since I was 28 and my brother was 26. She was diagnosed with early onset Alzheimer's/Dementia at the age of 56. My mother was working full-time for the government and was able to thankfully retire the year she was diagnosed. We have both been caring for mom since day one in our own way, doing our very best to keep her at home with family. We have exhausted over $250,000 over the past 3 years with private caregivers and meeting her daily needs. We even sold her house to help care for her in the home. We were given the news of her ALZ/DEM literally within a month of me completing Nurse Practitioner school and my brother completing his Master's in Family Counseling. There is so much to say but in short, my brother and I are having to contribute over $1,000 each per month to cover her memory care. Unfortunately, the memory care facility was not well caring for her and we moved her closer to home in Alabama as for the last 2 years I had her here with me in ATL. I kept her in my apartment with private caregivers for a year then made the hard decision to move her to a facility. Now Alabama is saying she does not qualify for their memory care because she is a 2-person assist and needs cueing to eat. So I looked into a nursing home which is the last place I wanted to consider and the truth is, it's more expensive than private memory care facilities. They are asking for a 5-year look back and we just made 5 years. And I can't provide proof that all her funds went directly to her; however, my brother and I have made money moves to help prepare for the future. She was given a 5-year life expectancy and we are at that. Based on clinical judgment, I estimate I have less than 2 years with my mom. She has been non-verbal for the past 3.5 years, she doesn't know who I am, nor can she comprehend anything, and she is declining every day before my eyes. I am asking for resources, not just money but if you know from personal experience there is true help of any kind I would greatly appreciate it. My mom served in the military for almost 2 years and because she missed the "cut" by 3 months she does not qualify for VA benefits. She got out on honorable discharge because she was pregnant with me. I have had to overcome so much, everyone has an opinion but you don't know what you would do in my situation. I literally told a patient about what I was going through thinking I could trust her with this information and I told her that her current facility left her on the floor for 4 hours on Thanksgiving after she fell out of the bed. I paid them almost $6,000 a month for 24/7 care and the staff totally neglected my mom. My patient said that's what you get for putting her in a facility. My mother gets $4,000 a month between social security and Medicare. If you do the math for 12-18 hours of care a day at the current rates $12-$30 an hour you will see I was paying the same if you include the cost of food, diapers, wipes, etc., keeping her at home. I just moved her to Alabama last week and now I am having to figure out what is best to do for my mom and me as a single 35-year-old who desires to care for her mom as well as desire marriage and kids. I am a follower of Jesus Christ and I trust him. Again, any information or resources will be greatly appreciated.

Thank you in advance for hearing a piece of my story.