This topic contains 3 replies, has 2 voices, and was last updated by Carol 2 weeks ago.
May 15, 2017 at 9:57 am #64227
I find myself feeling so incredibly drained lately and I wonder if it’s because I feel guilty all the time. It’s sort of creeped into my life. I’ve always tried to be there for people, keep a tidy home, care for my son, and manage my home business. More and more, when I think about my life, I just see a list of responsibilities and things I’m failing at. The friends I should call. The chores that need to be done. Yes, I’m taking care of my son every day, but could I be doing better? Is there some new advance I haven’t done the research to find out about? Am I feeding him the right foods? Am I enriching his life as much as possible? Am I isolating him by keeping him at home? When I send him to a day program occasionally, I worry that he’s not doing well with the others or if something might go wrong. There are just all of these things that I want to do, but don’t have enough time to do. It’s overwhelming me. I love calling my friends to catch up, but lately it feels like an obligation and I feel guilty that I’m not a good enough friend. I love running my business, but lately it all feels like a chore and there are so many things I should have already done. I just don’t know what’s wrong with me lately.
May 15, 2017 at 10:26 am #64229
Oh Susan, I can imagine so easily me being you and you being me! I am the Mom of a 28 year old young man with severe disabilities and I’m the daughter of my Mom who is 95 with early stage Alzheimer’s. She is very frail. She lives in Montreal where recently there was severe flooding and she was evacuated out of her assisted living residence (which she had just moved into several weeks previously). My sister and I brought Mom to my sister’s but within days it was obvious that Mom was not doing well with us looking after her. She refused to get dressed, refused her medications and even so, she was trying so hard to help out and be no trouble. Not taking her meds resulted in diarrhea and shortness of breath. I work from home too and everything seems to be done quickly and not properly. I brought my Mom to the hospital where her home had been ‘officially’ evacuated and she was in tears and had a panic attack. It felt like betrayal. All to say that recently, I have realized that I do not do all the care in my family so well anymore (I’m 62). My work is actually as a caregiving expert and boy, you can imagine how terrible I felt not being able to look after my Mom. So, this is what I have come to in my mind: I am going to be more of a daughter and less of a caregiver to my Mom. Our son lives in a care home now (he moved out at age 23). When he moved out, I moved in with him for about a month (I was so lucky that they had a room for me next door). It was hard to separate, but now I am blessed that I can be his Mom and not his caregiver (he requires 24/7 awake nursing). I feel my age now but I have struggled to hand over care for the people I love most in my life. I used to be competent and I was very fulfilled personally by how well I gave care. My worry became ‘Who am I if I am not a caregiver?’ I had to find out but letting go of my son’s care and my Mom’s too feels like a bandage being torn off a new wound. Perhaps this is your struggle too? Is there a chance to find some alone time? I think you may need that before you call friends – I sense that you need a restorative REST. And that means above all knowing that others are giving good care to your son – maybe it means dropping in frequently but using the day service more. How is it possible to be more of a Mom and do less ‘care work’ for him in order to transition yourself to a more balanced place? This is very complicated and very personal. I’m not sure if anything I’ve said will be helpful. I think though, that each of us as we age has to decide what we want to keep and what we want to let go of. I wish you luck, rest and serenity, Susan!
May 15, 2017 at 11:12 am #64232
Danielle, The Vibrant CareGiverParticipant
I think us caregivers, especially those caring full-time for a long time (years) run into the very feeling and emotions you re experiencing. The never-ending list of To-DOs that never seem to get done, or actually do not get done. Which plays into feeling like we are failing. Compounded by the guilt of are we doing enough, should I be doing more, could I be doing more, I have to do more.
Burnout / Compassion Fatigue is real. Seven years I have been my husband’s full-time, around the clock caregiver, and I am inundated with emotions and feelings the same you mentioned. I can no linger see the forest for the trees.
My simple yet difficult task was to set time aside for me, then time to just be his wife……this is still a lesson in learning, but it’s progressing. I control only 4 areas of life when it comes to my husband’s care- legal, financial, health, and safety. Other than that I trust the Universe, the Divine, God- whatever power to oversee the rest. I reached out for help, and accepted help. The day program for your son sounds like a great place for you to start, dare I say, letting go. I let go of home health, the nurse and my husband have a great relationship, and she only checks in with me to talk about meds, doctor appointments, and the like. Home care, the Aides that come to clean and offer assistance, I oversee the various tasks but I let go of how they get accomplished. I provided the tools and cleaning products, the Aides make the rest happen. I work from home, guiding and advising, coaching other caregivers. I work with families from brith through eldercare on how to do Caregiving- each is massively different, yet intimately the same.
I agree with Donna, the previous response to your post. please find a way to be more of a mother to your son, reach out for help- utilize the day program, invite his friends over, ect. As for yourself and your friends- true friends will understand your time and burden. First and foremost, take time for you, go to coffee with friends while you son is at the day program, go sit in a park and just breathe.
Overall, my friend, you sound burned out and depressed. Seek professional intervention, if you feel depressed. I have found this to be helpful, one of my friends is a counselor and she and I have a standing coffee date. Somedays we are friends catching up, other days she is my safe space to breakdown. I now look out for my trigger points of burnout and fatigue, I can recognize them….most of the time, and others they are in disguise and sneak up on me.
Please keep reaching out, seek help in your son’s care, and take care of you. You ARE doing a great job of caring. I am proud of you.
The Vibrant CareGiver
May 15, 2017 at 12:50 pm #64234
Such a common emotion amongst caregiver, yet we are ashamed and embarrassed to talk about such a difficult emotion .
I think it’s because most of us are taking care of a mother, father, child, or some other family member. Like we’re not supposed to have guilty feelings, like we’re always supposed to feel blessed and honored , ha!
Wait until you’re cleaning up poop and pee for the third time in two hours and your tired, achey, discussed, you yourself smell like feces and you snap at you mama! GUILT will steamroll over you and flatten you, you know it’s not their fault and they can’t help it. Neither can you! It is natural to feel guilty when you’ve don’t something unkind, even if you did it because you had reached the end of your rope.
No matter how many depends, poise pads, bed pads, porta potties by the bed when they are running fever, accidents happen. Especially when your loved one is not feeling well, the slightest change in their condition can trigger a different behavior.
You’re ( I ) am so tried I can’t think straight, I’m grossed out, I smell, …… did you see all those I s I I I
Well bless my heart ❤️ !
I apologize to mama and carry on. I’ve learned that frustration leads to anger, anger leads to resentment, and resentment leads to guilt.
Guilt is going to bubble up, turn the heat of the moment down! The situations does not have to boil over, you’re in control of the situation, the love one has no control of anything.
We are humans doing the best we can , we are not Saints, at least we’re doing something!