Caring for my mother on at home hospice

michelle1209

Hello. I’m new to the group but need an outlet to hopefully connect to someone whom better understands than those I know that are trying around me. My mother has been battling Lewy Body Dementia for about 7 years. She has rapidly declined in the past months, has been in the hospital and rehab. She last was admitted for dehydration and to our utter surprise was found to have a cecal volvulus. We were forced to face whether to proceed with the emergency surgery or allow her to go septic and make her comfortable until her time. We proceeded with surgery which was thankfully a success however this admission was different and we met with a palliative care team whom referred my mother to hospice ultimately. She wasn’t considered to be eligible in the past but due to her rapid decline as of late- was now. She’s home where she lives with my father. I’m no more than 10 mins away and have since applied for intermittent PFL. We have aides and hospice care, myself and the help of my son. Im trying to maintain the office I manage while on intermittent leave only, but am so entirely disconnected lately. When I’m not at work I’m at my parents caring for and spending time with my mom and in between trying to give my mind and body whst it needs but just feel like I’m failing. Im unmotivated, drinking maybe a little too much and just sad… i try to put on a brave face for my mom and cry when in the shadows. There’s times she is so cognitively aware it seems and will say “I’m going to die”. It’s just the hardest thing to see her wasting away mind and body. Every movement and day lately just seems surreal. Losing somebody, especially a parent or child unexpectedly is horrific but to watch it happen over the span of almost of a decade is inhumane…

Shan

Michelle, your post has me crying with shared empathy, and I’m so sorry you are going through this. While my mom is not to the severity of the stage your mom is yet, I do share all of the other struggles you are going through. My mom was diagnosed 3 years ago but looking back she’s been showing signs of decline for over a decade and it’s not only difficult watching how the disease changes our LO but also how it changes the relationship we had with them and our own mental and physical health as we navigate this horrible disease with them. My mom used to be my best friend and confidant. Good day or bad day, she was my go-to person to laugh or cry with, and losing that, while having to become her parent instead of her daughter is a huge thing to grieve for a decade and counting. I have never cried so much or so deeply as I have with this journey and it effects more of my life than I care to admit. I too am trying to keep a business afloat while being a primary cog in my mom’s care team and it’s insanely difficult. I am an independent interior designer with no employees. I have to do everything from the creative side to the financial side on my own and the longer my mom’s disease progresses the harder it is for me to have the mental and physical strength to do my job with the proficiency I used to and I worry my lack of time, energy and motivation is going to be my business’ demise. Which we cannot afford, nor do I want to happen, I love designing and would hate to lose this passion that I’ve turned into a flourishing business. So, I’m right there with you trying to figure this out day by day. Posting here has been a huge help for me and I hope it is for you too. Everyone here is so genuinely caring and supportive and because we are all navigating this terrible disease together their experiences and expertise are invaluable. Some helpful ideas I have received in other posts that I’ve been trying to implement that might help you include: 1. making sure to take some time for yourself at least once every day doing things that make you happy, you enjoy, or bring you peace (meditation, prayer, walking, listening to music, watching a pre recorded favorite show- because if you’re like me I’m always too busy to watch when they air, coffee shop or donut shop visits, etc. Someone even had the great idea to use these things as a reward to give yourself after visiting your LO to mentally prepare for a difficult visit. 2. Regular exercise- while it may seem impossible to find time to fit this into our already bursting at the seams days, even a 15 minute brisk walk or dancing to music can really lift my spirits and give me a boost to keep going. 3. Seek the help you need for yourself - post on this board for help or just to vent, find local support groups of others caring for a PWD, grief support groups, therapy, enlist help from family and friends - they are likely worried about you too and looking for ways to help. Tell them what you need and graciously let them help you. Give yourself a big hug from me and know you are not going through this alone. Take care.

michelle1209

Thank you Shan. Your post in turn made me cry as well. Thank you for your response. I’m so very sorry for your struggles as well. The role reversal of child to parent definitely is quite a surreal and challenging position. I would absolutely say though, they are lucky to have us. I appreciate your feedback and strive towards implementing your advice. This is very helpful. It’s good to connect and know there are plenty of others with the same challenges. I’m happy to also be of support to you if there’s any questions you have or certain obstacles you’re facing that I can contribute some of my experience to. Stay well and strong.

GwendolynD

Hi Michelle,

Your post is likely where I am heading with my Mom. My Mom has LBD, diagnosed last year and rapidly declining. (she had symptoms for several years beforehand). I moved her in with me in February. I feel like I have to hold my grief at times without an outlet. And yeah, I moments where I don't handle it well, I too think there have been times when I've been drinking a bit too much. I recently started to knit again thinking that for me it is meditative, and something I can do at home. And exercising too. Be kind to yourself - you are absolutely doing the best that you can do in this awful situation.