I am a very sad caregiver

This isn’t really a post about caregiver guilt it’s just more sadness that I know most everyone on the site feels- my fiancé with the 4 1/2 years Long Covid - a few weeks ago contacted ocular shingles, which has affected his eye and triggered his cluster headaches that he had not had in six years !And he is now using oxygen therapy for them - seeing somebody have cluster headaches just an awful experience - They are in so much pain. I am just sad and tired and want to cry all the time he and I are both almost 57. I am constantly on high alert. I cannot relax thanks for just listening to all of “you“ out there.🦋. Sincerely, Karen.

@karen8 You are most entitiled your sadness. What you are dealing with is difficult and sad and no one can blame you for sadness. Is your fiancé being treated for his long-covid and shingles? Is his doctor aware of the severe pain? Has he been to the ER? Probably the best thing that you can do for home is to be his advocate. Keep good notes on the day and time when his pain is most severe and what you were able to do for him. Does he have an adequate fluid intake. Is he pee-ing well? Does he have a fever? Is he able to sleep well at night?
And remember, shingles is communicable. So you have to be extra careful!
I’ve asked too many questions! The members just want you to be safe and stay well. Big hug to you!!

This isn’t really a post about caregiver guilt it’s just more sadness that I know most everyone on the site feels- my fiancé with the 4 1/2 years Long Covid - a few weeks ago contacted ocular shingles, which has affected his eye and triggered his cluster headaches that he had not had in six years !And he is now using oxygen therapy for them - seeing somebody have cluster headaches just an awful experience - They are in so much pain. I am just sad and tired and want to cry all the time he and I are both almost 57. I am constantly on high alert. I cannot relax thanks for just listening to all of “you“ out there.🦋. Sincerely, Karen.

@karen8

I am so sorry for all that you and your loved ones are enduring. You know, we don’t hear much about Covid and long covid anymore. That has to be incredibly frustrating if you are trying to navigate the long term effects of this disease!

I take care of my 93+ year old father, who moved in with my husband and I almost five years ago after my mom died. I can relate to the feelings of being overwhelmed and frustrated, lonely and stressed. Caregiving is very isolating physically and mentally and emotionally. I, too, often wake up with anxiety—you never know what you will being trying to cope with on any given day (my fathers health has been declining as has some of his abilities). Every decision from the type of food I provide, timing of meds, communication with docs, scheduling of myriad appointments, cleaning, watching for tripping hazards, helping with mobility issues, taking care of finances, etc etc etc, feels critical and potentially life altering (and they can be)—all while trying to enrich his life (he is bored and nothing I can provide, do with him, take him to seems to help and now that there are many food restrictions/considerations it is especially challenging), and respect his decisions and right to still make them for himself. No one can prepare you for all this entails, and I don’t think anyone can really relate or understand unless they have been or are going through it. Even friends that have done some caregiving of parents (in my case of trying to relate), didn’t walk anything like the path I have been—in so many ways our situations are unique to us.

I’ve been praying a lot about all of this. Especially how to have joy (and pass it on) in this 24/7 reality. I am seeing that looking for the small blessings everyday—those that are meant just for me, is special and uplifting. But I have to watch and be looking for them. Like the single blossom that came out late on my seemingly spent (in terms of flowers) gardenia bush. Like the butterfly that almost landed on me while I watered. Like my dad actually being pleased with a meal that I made (and it contained very little sodium), etc. Even just taking one day at a time and being thankful for peaceful days without health alarms. I’m learning that I can be a vigilant caregiver, but I cannot control everything that happens to my loved ones, and it is really a good thing that that is God’s job! I’m trying to learn to rest in Him and cast my care (but not my responsibility for doing what I should/must). I have found it helpful to talk to a counselor/therapist once a month. She doesn’t have any earth shattering suggestions that will make all this easy, but it’s a safe place to talk out emotions and things where I don’t feel like I am betraying trust. I pray blessings of comfort and peace, joy and healing and strength, courage, and endurance for you and your loved ones!

@babbsjoy What a sweet message you wrote. My journey is just beginning. My husband has been diagnosed with stage 4 esophagus cancer which has moved to his bone. I try to get up in the morning and be cheerful and positive because every day is different. The hard days really wear on me. I feel so bad for him and I do whatever I can to help him get through it but I become the brunt of his mood. I know he’s frustrated and in pain so I try to take it with a grain of salt. I have to remember that I am the closest to him and so therefore he is going to lash out at me. I pray hard that God will help him to get better and in the meantime I will love him with my whole heart.