Longtime caregiver looking for support and coping tips

Good morning, @lag630 I am pleased you found some help in my post. I agree with you that the waiting can sometimes be worse than the knowing. At least once we know we can create our 'attack plan'.

As far as the future goes, you are right that while we may have each had visions of what we'd hoped our life would be like, nothing is promised in that area. I certainly never foresaw being a widower. All we can do is try our best to support our new lives as best we can. I often remind myself of the old saying 'the only thing certain is change'.

I will hope you do get a definitive diagnosis that helps you both! Do you have future doctors visits planned?

Strength, Courage, & Peace

To see the feelings and challenges of the caregiver role in written word is like a lifeboat to me. I am a "fairly new" caregiver for my husband who had a bone marrow transplant in July 2022. We are home now after our 100 days of living nearby the hospital. While his physical prognosis seems to be ok at this time, his mental capacity has markedly declined. I have mentioned this to the providers who will schedule a brain scan and possible neurology appt in the near future. We also run a small business together and have had to "oversee" each interaction he has with customers to assure that we can serve them properly. He becomes confused easily and frustrated with not being able to find words or maintain a consistent thought pattern. I feel alone as I can't expect him to help me climb this mountain of daily responsibilities. It is overwhelming. I do try to take time for myself but have to carefully schedule that in when I know I can leave for short periods of time. Like you, I do not confide this to friends because I don't want to complain and feel like I'm failing. I also don't want to hear about having to take care of myself. I know that! I'm trying.
It takes a lot of energy to kindly circumvent his trips to the store (spending money on things we don't need). We are still trying to find where in town he has lost his set of house, etc keys. I have to constantly remind him to wear a mask in public and when customers come in our store or when we are out in public (crucial for a bone marrow transplant patient) and to take his meds, even though I've organized them in a pill caddy daily, the same way, every day. I am exhausted and empty. I do ascribe to, "one day at a time", which is the best I can do.
Thank you for listening.

Hi @tim1028 Nice to have you here in the Caregivers group! Glad you posted. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. Your post brought back many feelings from those years for sure. Being exhausted and empty was one of the toughest aspects of caregiving for me. It is a relentless undertaking and I wish I had some magic potion to share with you.

My dad was an alcoholic and one of the things that helped me with caregiving was from his 12 Step program and that was "one day at a time". I had to refocus my life from longterm to one day at a time. That helped me with the feelings I was having of being overwhelmed.

Also I had to teach myself that noncritical aspects of daily life could be allowed to go to the wayside without feeling any guilt. I learned to get along with a constant pile of laundry to be done, shirts that no longer got ironed, and looked at dust bunnies as a new kind of pet rather than a pest to be worried about.

I also printed out and taped a quote up in our kitchen which says "Courage doe snot always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper 'I will try again tomorrow.'" It helped me realize just trying was often the best I could do.

I had to chuckle at your comment about taking care of oneself! If I had people tell me that once, I had them tell me that a million or more times -- and every time they did it made me beyond crazy! Do people think just because a person is a caregiver they don't want to take care of their own needs too? I support that comment might have made them feel like they did something, but it surely didn't. At least for me, it didn't!

Caregivers can only do what they are able to. None of us are superman or wonder woman.

I am happy to answer any questions you might have about specific things or aspects of caregiving to help!

Strength, Courage, & Peace

I love this. I am going to print it and tape it to my bathroom mirror. I was caregiver for my MIL/Step-mother (yes she was both) for 7 years before she died with LBD. Now I am care-giver to my father who has been dealing with metastatic squamous cancer since 2020 (moved in with me after two months in the hospital) and my mother, a heart patient. I have managed to keep it all in balance except with crisis spikes, but after heart surgery in October, my mother has become confused and combative. My brother lives in the Pacific NW, and is here periodically when work coincides, but well, he works when he is here. My husband helps tremendously but the burden is real. I have been grounded. My freedom is gone. I have many health challenges of my own, (including RA/OA/PSA, Asthma, and chronic migraines) but taking care of myself is dependent upon the happenstance well being of my charges. I had severe COVID for three weeks, beginning in late January and if I had not been critically ill it would have seemed like a relief, to give up all the "have-tos" for three weeks.

I am managing pretty well. I am a social worker and a psychologist so I am well acquainted with what services exist in my community, and how to access. When my father was not responding well to treatment the oncologist had their social worker call me and I was astounded at how little she knew. I am better equipped to manage this stress than most lay people.

@asterken, it must be such as asset to have your professional knowledge of local services and how to access them when you found yourself a caregiver to your father.

What tips would you give to others in how to find local community services and resources?

I was a family caregiver for 23 years. I cared for my mother, who had vascular dementia, my twin grandchildren, whose parents died in separate car crashes, and my paraplegic husband. Since I'm a health/wellness author, I turned to writing to cope and learn. The result is a series of four caregiving books that may be helpful. Caregiving is an expanding, consuming role that takes over one's life. Sending caring thoughts and virtual hugs to you.