Are there any other caregivers in their 30's? In July of 2014 my parents became unable to care for themselves four days apart. I took FMLA leave but eventually left my job. It was the best decision I ever made because my dad unfortunately died a year later. I'm so thankful for the time we spent together. I was his full time caregiver while in a rehab hospital and nursing home because of lack of care from the staff. My dad had a second stroke but he was mentally there and able to talk. He was unable to walk but was working hard in therapy up until he had another stroke in 2015. My mom was diagnosed with frontotemporal dementia at 59. Since my dads passing in July 2015 my moms dementia is progressing. Today after a lot of praying and crying I put the deposit down for memory care. I feel like a failure because I told my Dad I would take care of her. She is refusing medicine and not wanting to listen to anything I say. She is physically OK and able to do a lot of things but needs reminders and guidance. She doesn't cook and sometimes refuses to eat. She is currently hallucinating and acting out on the people she see. Its been very hard trying to sneak her medicine into her drinks. Also we don't get much sleep. I know overall placing her is what's best for her but its hard when I watched and had to report nurses and CNA's while my dad was in the hospital. I'm 33 and my moms siblings tell me that I need to live my life. Her parents want me to continue taking care of her at home but they don't try to understand the disease. They don't understand that I need help. My siblings have been hands off since 2014. I thought if I moved my mom from FL to SC my sister would help but she hasn't.
In 2011 my mom started complaining about headaches that wouldnt go away but they didnt find anything on her brain scans. In July 2014 my mom was seen by multiple specialists the hospital called in an additional one before they gave the final diagnosis. They had brain scans from 2011,2013 and 2014 to compare along with their evaluations and she was diagnosed with moderate to severe FTD. She gets confused very easily. So ive never been able to leave her alone.
Someone stated my parents wouldnt want me to stop living my life. Very true my dad had a lot of guilt about me taking care of them especially because of the lack of sleep and my own medical issues. I always reassured him that i was thankful for the time with them and i didnt want it any other way. Our plan was an assisted living for the two of them this year. He was ok with it because they would be together and i could go back to work. My mom enjoyed her stays at the behavioral units and was very vibrant when we went to visit so im hoping the transition into this beautiful and very active environment is quick. My parents knew each other their entire lives and were married for 38 years so its been very hard on her and she keeps saying she wants to see him and touch his face. Since i wrote this post we have had days that prove i made the right decision for her. Im sitting in the ER now as i write this comment because the man she sees in the house touched her inappropriately and caused her to become very upset and aggressive. She even blamed me for him being in the house. They gave her a pill that dissolves on the tongue that should help with the hallucinations. They didnt recommend a stay at the behavioral unit with her being so close on the wait list for memory care . We told her the medicine will help with her asthma and allergy to pollen so hopefully she will take it everyday. Once again thank you all for sharing your experiences, giving your honest opinions and encouraging words. I was crying while reading the comments. Im glad i posted.
First, *hugs* Second, and I'm using caps because it is important. YOU ARE NOT A FAILURE. This disease especially makes it almost impossible to care for your family. I work as a CNA in assisted living/Memory care. It is easier for me to care for 25-30 residents overnight (in assisted living) than my one, singular grandmother. She sees me as family and not a licensed healthcare professional. She listens to the other professionals more than she will listen to me, her granddaughter. There is enough familiar to me that it makes it harder for her because I also bring the past with me when I am with her. I know when she is misremembering and when she is with it. I don't correct her, but it makes it harder. I watch the family of my residents feel the same inadequacy when I can get their loved one to eat/shower/do whatever when they just won't for them.
Just because mom is in memory care doesn't mean your work is over. It is just different. The facility will still be calling when they need clarification, assistance, supplies, anything really. You will still be making decisions. It is still a hard job. You are still a good daughter, and providing mom the best care possible.
You're not alone!
It's not a burden, to those who truly love and want to help. It becomes a burden, when the ones who need help, think they are truly capable and does not require help. Proud, vain, afraid of losing their identity? who knows?
Why not accept a helping hand? Age group? or just cannot accept losing control? No one loses control, unless you let it happen. Some people are there with loving hearts and truly want to help. Isn't that what you, as a person would do?