One year in and struggling

Hi, I've been a long term caregiver for my husband. I find spending a bit of time each day with my religious readings, thoughts, books, etc have brought me some peace and patience. I find things written by Sarah Young, especially "Jesus Calling" and things on the Hallow app are helpful to me. My husband had heart surgery on 9/13/2023 at Mayo in Rochester. There was a horrible complication. Since that day, we have had 1 week without a hospital stay, rehab and assisted living stay, home health care or medical appointments. I look for joy everywhere and it is out there. Wishing you the best!

@anything4him
I've been the caretaker for my husband with esophageal cancer for the past 7+ years. When he had a recurrence last year, I found a small cleaning business to take care of that chore! I was tapped out and just wanted one thing off my plate. I ordered groceries online and just had to drive to the store and they loaded my groceries. Little things like that can make a huge difference.

@royce Thank you

@cometsmom yes! I am thinking more about shortcuts or getting things off my plate - thank you!

@anything4him You are very welcome! You don’t mention your ages but if you are older with no family near by or too busy to rely on, I strongly urge you to consider engaging a Geriatric Care Manager or GCM for you and your husband…..and even if you’re not of a certain age, some GCMs will work with folks who need support caring for a seriously ill loved one. My husband and I have a GCM and she is there to help us locate resources, counsel us and to step into one of our shoes if one of us is unable to care for the other. You can locate a GCM near you at https://www.aginglifecare.org/Shared_Content/ALCA_Directory/ALCA_Find_an_Expert.aspx by distance and zip code. And if you would like to know what a GCM can do, watch the video on the homepage of our GCM’s agency. It is very informative! If you would like to discuss, just message me. https://www.peaceagingcare.com/

@anything4him Have you considered Meals on Wheels? It is a great program that delivers 1 hot meal every day. I’m a driver for Meals on Wheels in our county and my husband takes the meal to each client. We’ve delivered to the same people for approx 2 years so we feel like family. Call them! They can take one task off your shoulders!

@anything4him
I never found an easy answer to your question. My husband had to retire early because he developed dementia. And he suffered and I suffered with him. Quite frankly the thing which worked the best for me was my job. At 66 I went back to work in a job which I could do at home while keeping an eye on my husband. The money paid for caregivers to sit with him while I went out or had an important in person meeting or crisis deadline. And the constant deadlines gave me something to think about in addition to his decline. I realize this solution is not possible or palatable for everyone but it worked for me. I worked until a year after he died. And then once the worst of the grief was over, I realized I didn’t need the job anymore and quit.

@methel I’m so sorry to hear that, but it’s good you found what worked for you. I learning it looks different for everyone & we all need to do whatever works for us. Thanks for sharing

Thanks everyone for sharing & giving me ideas to consider.
I feel like I’m on the brink of figuring out this long term caregiving for us, just need to learn to accept shortcuts (advanced meal prep & supplementing with prepared Whole Foods meals; hire cleaning service for a break etc), and carve in some set time to exercise & meditate for myself. We have a ton of fun together, even through all of this, just being together. The realization is I have to adjust from a year of being in emergency mode to longer term reality.
Thank you everyone!

I just read your post and as of this morning started following this group. You sound like me! My husband had bilateral lung transplant in 2024 and there were complications as he was in the hospital for 66 days. I suddenly became a resident of Rochester for 7 months. While he is stable now and we've been home for some time, he doesn't have the energy/stamina he had prior and suffered quite a bit of muscle loss during the extended hospital stay. We are all so glad he survived and grateful! That said, I am a full on caregiver. I do the meds, make sure we have 2-3 weeks ready at a time, call the pharmacy for refills, schedule appointments, clean the house, walk the dogs, buy groceries, cook, it's exhausting at times. I'm not complaining, this is simply my reality. He is immunocompromised for life due to the meds he is on so hiring help to come in for cleaning etc isn't a good idea. I became so fatigued last Spring I saw an integrative Dr. and I decided to go on BHRT pellets (hormone replacement therapy) and my T3 was low normal so I was also put on thyroxine/levothyroxine. Not suggesting this for anyone, just discussing what I did. It has helped quite a bit. I do have better energy and arthritis in my hip disappeared. Aside from this, I take time when I can to walk with my friend for an hour or so on occasion. We live 25 miles apart so it's when we can. I also made a comittment to exercise in the morning before my husband gets up, before the day really starts. I tell my self when I don't feel like it or am tired, it's consistency that matters now how much I do, so some days I do less than others but I always feel better afterwards and better able to handle the day. It's going to be lifelong for us in this mode so I'm trying to improve my health as much as I can. We have to take care of ourselves. Oh and I love audible to listen to while out walking alone or with my dogs, it's a great break! If in the woods I prefer to hear nature. Hang in there, you are not alone!