u/Princess-14

Were you a caregiver to a mom or someone else and have navigated through the loss and are on the other side reclaiming your life? Please share your journey/process. I am looking for hope that it will get better.

For six years, my identity has been first caregiver, then anything else. Caring for my mom has been the center of my world and everything else was secondary. Caregiving has defined me.

I’m scared that I won’t have the tools to push through the pain, loss when it happens. That I will be stuck. I’m a planner and want to lay a foundation for my life post caregiver.

I’m caring for my mom. This past week, there was a major decline. Due to the advancing dementia she cannot be left alone. She is having major hallucinations and most days think she is a young lady in her home state. We moved seven years ago. She was in the hospital for a couple of days and the result was her dementia was heightened when she returned home. She didn’t recognize it and got combative, not punching or assaulting anyone, just not wanting anyone to come near her or touch her.

She has fainted a couple of times. Doctors think due low blood pressure or lack of potassium. The fainting is new and scary.

She has know for a while that she is sick. Knows she forgets stuff, but now we are on a new level. I just support whatever timeline she is working from. No correcting, just listen to the story and chime in to support.

She has been sleeping 18 plus hours. Does get up for morning and evening meds, eats small meals. Since the return from the hospital and hospice suggesting I give her
Haldol and lorazepam, she has slept peacefully and when waking up calmer. I was worried about her response to all the new meds since hospital visit, so I have watching her 24/7 on the camera feed.

I have an in-home aide during the week, day shift. I started a new job not long ago and thought I could start putting my life back together since we had the aide. But with mom not being to be left alone, my world had gotten so much smaller. Can only leave her when aide is here. Had to adjust work schedule. Praying I don’t lose my job because I really like it and the people I work with.

I think friends reach out less because they know they can’t really help. They don’t live in the area.

I’m trying to get more in-home help. Awaiting leads. Everyone is advising me to put her in a facility. I went to see one yesterday and I know she would like it but it’s nice. She made it very clear she never wanted to go to one. Oh and it cost over 6k a month, so not an option.

I feel so overwhelmed. Am I the only person asking ChatGPT a million questions? Not sleeping. Decided I needed to have a plan in place for inevitable end. Drafted an obituary and selected a picture I know she would like. Since only a handful of family is even in the state where we live and they barely see her, I see not need for a funeral. Mom wants to be placed in a mausoleum, but doesn’t have mausoleum money. I always told her if it is left up to me, cremation. And it has been left up to me. Reached out to some places about logistics. When the time comes, I don’t want to think about logistics. I want to be open to the grieving process.

I’m not married and don’t have kids, so I’m afraid my life will seem without purpose now that I’m not caring for her. Scared of what that life will look like, feel like and feel of what happens to me if I get that disease.

Sorry for the long post. I crying on and off and just exhausted and know many of you can relate.