Existing vs. Living?

Going thru the motions is what I call it, or autopilot. I miss having a job I love, having the freedom to sleep or shower or eat when I want. My health is declining, both physically and mentally. I miss my old brain so much. I do try to allow myself more time to myself since the COVID pandemic but it hasn’t helped. I’m trapped until I can get my brain functioning enough to see my way out. Hoping for respite care break for two weeks in the near future but constantly worrying he will get some sort of not well (severe nosebleeds plagued him in February and he took over a month to recover) before I can get my break. The worst part is the place can’t do his transportation to/from his dialysis center(because they erroneously assume that all seniors get up super early and are in bed asleep by 9 and my Dad’s dialysis is in late afternoon when they stop transport services. They even asked me to change his dialysis schedule for two weeks, completely clueless that chair spots at clinics are pretty permanent and coveted.) so I still have to see him 4 out of the 14 days; it’d be 6 days if my bf wasn’t doing the back/forth on two of those days. I do hope it works out though so I can get him used to assisted living, which he never wanted to be in but sometimes understands that this is too stressful a life for me. I can’t do this for much longer. I do want a life again so badly. Working, building a savings, finding a place to live that’s in a town that isn’t insanely racist or biased and yet still has a sense of community; I’ve got dreams that I still want to achieve after his passing I just want to make it to the other side a good person, not bitter and negative.

I certainly had no clue to the answer when I was a full time caregiver.

It may seem like a simple question at first, but depending on individual circumstances it can be a very complex situation.

I lived with a mixed bag of emotions in my caregiver days.

I often felt like I only existed too. I believe it was a safety net for me, because if I allowed myself to feel intensely, anxiety and depression would take over.

I felt deeply isolated as well until I decided to reach out for help.

So, you have taken the first positive step by reaching out to this forum.

Many people here are going through or have gone through similar circumstances.

I recommend seeking out a therapist if you feel that you need further insight to your situation. I found therapy to be very helpful.

Try to find time for yourself as much as possible.

I realize there are days that it seems impossible to get a moment for yourself.

I placed so much emphasis on my mom that I neglected my own needs.

Contact a social worker. See what is available to assist you during this difficult challenge. Ask about facilities that are available in your area.

Transitional times are always the toughest. Once you make a plan, you will no longer be living with uncertainty.

Reach out especially to those posters that have placed their family members in facilities.

Use the private message feature to do this. They can walk you through it and you can express your concerns to them.

Best wishes to you.

What is one thing you can do for yourself today at home that you enjoy? Gardening? Take a walk? Listen to a favourite piece of music? Watch old comedies on TV?

I know it's hard with the pandemic, but do you meet up with friends?

I just went back to a regular exercise class & I look forward to the chat & always feel good afterwards.

Sometimes adding more activities can help. Sometimes they are tiny bandaids trying to cover a huge wound (heartbreak, grief, depression).

Do you think more activities, social stuff would help you?

You move forward to actually living by CHOOSING to move forward. There are many resources that will help you do this. Call your local Area Agency on Aging to start with. Home care agencies will come in and care for your wife a few hours a couple times a week so you can get out of the house. Do you have neighbors who might be able to spend some time with her? Contact your church. Some have volunteers who are willing to help out. You've got to take a break from your care giving to be able to get re-energized.

I have been a caregiver almost non stop since 2009. My mother, who was a hypochondriac her entire life, had a major stroke, leaving her paralyzed on the right side and unable to speak. Her Medicare substitute (rhymes with Hell Med) placed her in a nursing home without asking for any input from us. For the first 6 months, I stopped every afternoon on my way home from work and sat with her while she ate her dinner. My hubby then told me he would take over visiting her on Saturday and Sunday so I could have a break. I had little or no help from either sister or my cousin.

My mom passed away in 2012, about the time my step mother's health began to decline. I found her a lovely independent living community which she enjoyed. She started getting confused with her meds, and suffering from terrible arthritis pain in her spine. It became my responsibility to take her to her doctor's appointments, grocery store, clothes shopping, picking up meds, etc. Again, no real help from either sister; just lots of snide comments that I was ingratiating myself to her so I would get a larger inheritance. (A long sad story for another day). On 2016, on her 90th birthday, she fell and broke her left hip. It all started going down hill from there. As I had retired in 2012, she felt it totally reasonable to call me for every need. After she got out of rehab, I arranged for home health to come 3 days a week to help her bathe, dress, set up her meds, etc
In 2018, she fell on July 4th and broke her right hip and arm. After rehab, I moved her into an assisted living facility where she passed away on Dec 31, 2018.

Looking back, I realize that it was during this time span, 2012 onwards, that my husband was exhibiting signs of dementia. He started using the word "thing" instead of nouns when he was talking. He would do weird things, like take a crowbar to the front door that sticks when it rains, instead of sanding down the offending corner. He got lost going to the grocery store, a store he'd been going to for 20 years.

Now my husband has been diagnosed with dementia. At first I was so angry; angry that this f*ing disease is stealing the love of my life, my best friend, my strongest supporter and my harshest critic. Then I felt so sorry for myself; my life has stopped; no more quilting retreats with my friends, no trips to Austin to visit nieces, nephews and their adorable kids. I felt i must have had a huge Karmic debt to work off.

Now, I've gotten to acceptance. It is what it is. It's not my fault this happened. My life will continue on, I'll be able to do things I used to do, someday.
I do have a wonderful caregiver for him, and that helps, and I am fortunate that my scrimping and saving over the past 40 years so we could travel when I retired means we have the resources for full time care givers and or MC when the time comes. The day I dread more than anything.
Thanks to all of you who post here and to the wonderful people who developed this site. You've helped me more than you can know.

By getting your wife into respite care in an Assisted Living community in your area for a couple of weeks asap. If all goes well, you can continue doing that on a regular basis so you can find YOU again. At 65 years old, this care giving journey can potentially go on for decades. You may want to consider placement in Assisted Living down the road as well. There is no shame in such a thing at all. Two lives are on the line here, not just one. Be sure to remember that moving forward.

Good luck!

I'm a few years out of hands-on eldercare and I've wondered this same thing. Caregiving can really take a lot out of a person and I don't feel like I've truly rebounded from the experience. I still find I'm tired, easily upset, with occasional debilitating migraines and chronic high blood pressure. I was immersed in a caregiving situation that I probably never should have been involved in and then I was subject to criticism and ridicule when I didn't fix everything. Yes, many days I feel like I'm just existing. One thing that helps me is to take a moment each day to think about something I accomplished that day. However small it may be, it's still an accomplishment of mine. A footprint that I made that day which made something better or prevented something from getting worse. Positive choices and actions are part of what it means to be truly living vs existing. Be patient with yourself.

By making sure that you're taking time away from caregiving and doing things that you enjoy. It can be just little things, like going for a walk, going to church, going to lunch or supper with a friend, or just going in another room and reading a good book. You must as a caregiver not only take care of yourself, but make yourself a priority as well. And if that means you hire someone to come in and help with your wife so you can get away for a bit, then do it. You are worth it. By doing some simple things just for yourself, you will once again find yourself "living" instead of just "existing." Best wishes.