I am a very sad caregiver who has posted on this site before…

@karen8 You have my hugs and sympathy - caregiving is such a lonely and difficult job - and to be doing it for two people must be exhausting!

I understand about long Covid - my daughter is still struggling with the aftereffects more than 5 years later - her days, weeks, months are up & down. The very best thing that happened to her was to find help through our state department of vocational rehabilitation. She can no longer pursue her former very active lifestyle and physically demanding career, so is back in school to change occupations.

Can your fiance find one buddy or family member to go on a short fishing outing? It might help his mental health immensely. If you don't know anyone, try contacting a local Veterans organization to see if they have a suggestion - they often have connections.

And it sounds like you may need a little TLC yourself - have you looked for someone - even just one friend or family member - who understands what you are dealing with? Taken a 48 hour break to decompress and unwind?

Hi Karen- caregiving is soo hard. And most people just don’t understand the toll. I’ve felt incredibly lonely- as people closest to me that i assumed would understand- just don’t. I have found myself angry with family at times because of this. And the weight of the emotional toll on your loved one is hard too- especially if you tend to “feel” their feelings. I think you are right that most people don’t understand until they actually experience it.
So please just know- there are people who get it. I heard you, see you- and understand. I’m tired too. Prayers for strength for you. And rest. Please try to doing brief moments of things that make you feel good -nothing over the top- we have enough on our plates! But for me- I love to occasionally have a solo drive and blast some music and sing. Even just to store. Or I take a long bath late, and read about the universe. Gets my mind off the day. Do something small that makes you feel good inside. Hugs.

I agree with all of your comments. Thanks for sharing.

Just reading these kind words that were sent to me has meant so much …. I wake up nervous most every day and reading this just made me feel less alone. Thank you for understanding and being genuinely empathetic. I realize all of us on here have a lot on our plates ! I also try to continue to count my blessings!
Karen

Sophie 100 - you sure hit home with family member(s) you thought would “ get it “ and find yourself angry with them ! Me too ! I know the resentment is not good .
I’m sorry you feel this as well - and thank you for “ hearing” me . I also send you prayers and strength in your struggles . By the way - bath time is huge for me 🙂

Being 'stuck' is one of the stages of being a caregiver. It comes after accepting a loved one has a disease. I asked my psychology nurse for a list of books and the first one he recommended was "Man's Search for Meaning." I read it cold, not knowing what the book was about and it gives a powerful insight into what it means to be "stuck" and what can be done. I'm stuck too.

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
― Viktor E. Frankl, "Man's Search for Meaning"

I am so sorry to hear that you are in this situation. I feel similar--empty inside and numb. We used to travel frequently and eat out two or three times a week. Then four years ago my husband fell from effects of medicine he was taking for restless legs and suffered a brain bleed. Both our lives ended that day. Most of our friends have dropped us because it's such a production to get us in the car to go anywhere and just spending time with us must be a real downer wondering if they are goin to end up like us. The other couple has to drive all the time. My husband also has Afib and often sleeps 18 hours a day. He wants the lights off and no noise. He had Merkle cell carcinoma on his ear lobe two years ago and the radiation destroyed what was left of his hearing (of course they don't tell you about that possibility before the treatments.) When he's awake we can't even converse because he can't hear me. I'm looking forward to another endless weekend. We have NO family at all except my husband's cousins who live 200 miles away. Several of our friends the same age as we are are going on European river cruises, trips to Portugal, African safaris or trips to Australia and here we sit.

I am so sorry you are experiencing this. I have been in situations that no one understood or talked about. It was very hard. I will pray for you that people may come along that understand and care. I will also pray for you to have the strength you need to make it through the emptiness. I have faith that there will be something on the other side of that.

@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!

As a caregiver & spouse of amazing woman with a progressive neurodegenerative disorder I am moved by the honest sharing & support I've found here (& elsewhere) & your experience in particular. I can relate very much to the anger--which I realized is a self-protective defense against my underlying fear, pain, sadness, confusion, loneliness, uncertainty, exhaustion (physical, emotional, mental, even spiritual), despair, hopelessness related to the grief about the losses--past, present, future. But in the midst of this not trying to be strong or praying for it but rather stop fighting the reality of it, that life has changed & there will be challenges but that I don't have to handle life by myself (nor could I, or anyone else). Together we get better than we had imagined. Getting & giving support is essential oxygen I need to survive. There are other things I do to get oxygen & I have to build in the time & space to do so--even if momentary. Peace to you.