Follow
Share

I don't care for mom full time but stay overnight once a week and work four days a week. Thankfully she is happy having another caregiver from an agency take other days.

I have fibromyalgia and pay the price if I do too much in one day. I am usually exhausted after being there for two days. Tonight I have a commitment to a bible study and know I should go but my body and mind are saying sloowww down. Now I feel guilty. Unproductive I know.

Even part time caregiving takes a lot out of me....anyone out there with a chronic illness like mine and trying to balance caregiving with it and trying to maintain friendships too? Thanks.

This question has been closed for answers. Ask a New Question.
Every day I’m physically too tired to socialize. I have chronic fatigue syndrome and force myself to do one social thing a week. Yes, it’s good for my mental health, but it truly takes a lot of energy out of me physically. Caring for loved ones took a huge toll on my health and well being that good intending friends just don’t understand. For me, trying to be a social butterfly just adds more stress because financially I can’t do much and physically I don’t have the energy. I think each person has a different level of a need for being around others, but I think it’s important to get out and spend some time with people that don’t demand anything of you.
Helpful Answer (1)
Report

Eyerlishlass, I can relate to where you're coming from, too, totally. These last years of care taking I haven't bothered trying to make friends. I just haven't had the time or energy. But before all this, even good friends knew I had a tendency to disappear into my own world now and again... When you're a care giver, you don't have ANY time to cultivate relationships, and be a giving friend...you're already giving all you've got to care taking... Yup, I understand.

Some day I hope to have good friends around me, when I'm healed and energized and I'm ready to put in the energy/time that sustaining friendships takes...now, I'm just too damn worn out. It took a long lot of years to get to this point, where my energy is so depleted. It's going to take a long time to get it back. Care givers need time to come back to themselves, to who they are, because a huge part of ourselves is suppressed and lost in being a care giver...it's all about the patient most of the time, every day. It takes it toll. No wonder people are exhausted and worn down and don't feel like doing a damn thing else but resting and sleeping...who can blame them if they've lived this situation themselves? Outsiders that never have couldn't even begin to grasp what a care takers life is like and what kind of constant energy it takes on a daily basis just to care for our charges like we do, let alone find the energy to want to get dressed up and do something besides grab any opportunity to sleep and rest.... Someday, maybe. Now? No way.
Helpful Answer (1)
Report

I feel you, Smitty. Peace and quiet some days? I want peace and quiet every day. If I never have to deal with drama again in this life, it'll be too soon. I enjoy having a handful of good people around me, but never crowds. But even with a handful of close people, I still require solitude like a drug. I need total and complete alone time. I have no desire to be around other people 24/7. I need time to just get into my own mind and veg with the universe and nature... lol ;) That time is as important to me as spending time with good friends is. And good friends get it. :) I don't feel guilty. It's who I am and what I personally need for my own peace of mind..
Helpful Answer (0)
Report

Emjo, I think we have a lot in common! My mom is BPD and narcissistic. Being exposed to that is draining enough. I'm glad you are taking care of yourself. I will try the 50% rule. That makes a LOT of sense!! Whew! I feel better and less guilty already. LOL.

Thanks everyone for your posts. We will keep each other afloat with this site. It's great!
Helpful Answer (2)
Report

I cared for my dad in my home and I have lupus. There were days and weeks when I was sick and my dad was very supportive but there were still caregiving responsibilities I had to do, sick or not.

I knew I should get out more but balancing my health with caregiving left little time or desire to get out and see friends. I made attempts to keep in touch with folks and when my daughter was in highschool she was involved in all kinds of activities that forced me to be with other people. But taking care of my dad and taking care of myself left me with little to contribute to a social situation. I had nothing to converse about, I had no life and it was embarrassing to be out and about and have absolutely nothing to offer.

Friendships have to be maintained and cultivated, tended to, and I didn't have the energy to put in the time. My dad didn't realize how much work he was so if I did go to dinner with a friend he was very supportive and told me I should do that more often. However, coming home to find him laying on the floor for hours after falling was not conducive to a healthy social life.
Helpful Answer (4)
Report

Caregiver or not I've done plenty during my life..Now just leave me alone! Unless I'm getting a free fantastic meal and I don't have to drive for it at night, then I'm not interested!
Helpful Answer (1)
Report

Caregiving takes a lot of energy. We all need time for ourselves, even the most healthy of us. I think good friends will understand that. Personally, I think it's better to rest and recharge, even if it means socializing less. Then we can be more relaxed and ready when we connect with friends. Quality over quantity. My 2 cents.
Helpful Answer (5)
Report

((((((((Smitty)))))))) I know those feelings well. I have FM too, and care give at a distance, but I still have to set limits on my activities and my caregiving. I don't need or want much socialization, (some people do, some don't) and since I retired a couple of years ago, have not taken on any regular activity. I do the shopping etc. which gets me out, but nothing else regularly. With FM you do pay if you do too much. I have learned that I have to "listen" to my body. I am better at dealing with the guilt than I was. It's not your or my fault that we have FM, and we do have to look after ourselves. I don't make arrangements very much ahead of time, and often insert the rider "depending on how I am feeling". People seem to accept that.
I have pushed myself so much on my life - mentally and physically, and have decided I have to be more careful about that. I don't mean "stretching" yourself in a healthy fashion, but pushing yourself too hard in a way that is not good for you.
Have you heard of the 50% solution for FM? It says do 1/2 as much as you think you can, and let the other 1/2 of that energy heal you. I have found it useful, and pace myself better now.
Forums like this have offered me invaluable opportunities to interact with others on a meaningful way, I have a few girlfriends who live at a distance and we talk on the phone, I do travel a little with sig other on business and vacations, and make no excuses for staying in bed or resting while we are away, if I need to. Fortunately he is pretty self sufficient. I see my g'kids once in a while and not for long as they are very energetic, I travel to mother's city to visit her once in a while, but keep it short and manageable.as she causes a lot of stress (BPD and narcissism). I do what I think is useful for her and ignore a lot of her complaints. Part of it for me was accepting that I could not do what I used to. I am aging too, as we all are, and that makes a difference, and we have to make adjustments without guilt. It is what it is. Feel good that you can do as much as you do! (((((((((((((hugs))))))))))))
Helpful Answer (6)
Report

When my folks first had to move in with me, and I was dealing with an ill mother and a Dad with worse ALZ than I thought.. I could barely answer text messages, much less feel like even talking on the phone. I just felt numb and removed from everything. Thank God I had some good friend who stepped up and helped me with things, even sitting with Dad while I went to the bank. I now feel better.. not great, but I make the effort to call and see some people.Hang in there, it does get better!
Helpful Answer (5)
Report

Please don't feel guilty! Good friends will understand that you need to take care of yourself. I've always needed quiet time to decompress, then I can get up and get going again. Take care of yourself. Hugs!
Helpful Answer (3)
Report

I think it's natural to go through stages not wanting to socialize. I am almost 53 and feel that way right now. It's not depression and I don't have a chronic illness, I think it's more menopause. I need quiet time. I am my mum's full time live in caregiver and when she naps in the afternoon, sometimes I lay down and have quiet time or go on the computer. I don't feel like listening to constant chatter.
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter