DH (87) has dementia. Quite severe. Also Parkinsonism and in a wheelchair. I'm very lucky in that I have round-the-clock caregivers who do everything for him. But today he woke with a fever and cough. I acted like a grown-up, called the doctor's office, nurse practitioner saw him right away, ordered cough med, antibiotic, gave us the usual advice you give somebody with an upper respiratory infection. We brought him home, put him in bed, I went and picked up the Rx at the pharmacy, came home, and...I'm just EXHAUSTED--emotionally! I go to a dementia caregivers support group where everyone else is much earlier in the process and they have very difficult problems--financial, legal, family opposition, health problems of their own, angry behavior from their loved ones--in comparison our life is smooth. I'm usually pretty cool, calm and collected. I have so many advantages... Hubby is happy, funny, playful, affectionate, generally healthy. But right now he's sick and I feel so helpless! I feel as if I stopped breathing this morning when the caregiver told me he had a fever, and I haven't yet taken a breath and it's 7 p.m. Just because I have help doesn't mean that this whole trip isn't devastating. And that becomes obvious when he's sick like this.
I was just reading about this the other day and it totally makes sense. It’s different than “burnout”. First responders, ER staff, military, caregivers all can be victims of it.
I too was diagnosed with severe major depressive disorder, first in 2003 and again in 2007. I didn't realize it at the time but the first time coincided with the first signs of his cognitive decline. The second time was when we were desperately searching for answers to my husband's declining mobility. Since then I've been on a big fat dose of sertraline, and I'm not thinking of going off it anytime soon!
I also want to mention that until 2010 I had been my husband's caregiver (on and off) since 1990 when his physical problems started. He had a spinal cord condition which took 19 months to diagnose during which he was increasingly unable to walk, and in the middle of all this he had a kidney cancer which resulted in a big operation to remove one kidney, ureter, and a piece of his bladder in 1991, followed by two operations on his spine in 1992 to find and fix what turned out to be a circulation defect. He had to re-learn to walk and was left with quite a lot of sensory abnormality (position sense the most disabling--he doesn't know where his feet are unless he looks). Then in 1993 he had a small bowel obstruction and the recovery was pretty interesting given that he'd lost some bowel and bladder control due to the spinal cord difficulties. He did roar back to life and was very active & involved for the next few years until he started to develop spinal curvature in about 2001 and increasing difficulties with his walking. Needless to say I've spent a lot of time in doctor's offices and researching medical conditions over the last 30 years! Yet, I never thought of myself as a "caregiver". Even when his cognitive decline was obvious to everyone else starting about 5 years before his diagnosis, I never thought of myself as a caregiver. This is just what we DO! And it would never have crossed my mind to ask for "help" in those days.
I remember in 2016 I was dealing with the worst part of mom’s Alzheimer’s and I had found out my son is a heroin addict. I lost it mentally. I could not force my brain to keep it together no matter how hard I tried. I lost some hair, lost weight and had trouble concentrating on anything. I was so emotionally wrung out that I went to see a psychiatrist. He prescribed meds that turned me into a zombie. I quit after 3 days and asked God to help me keep it together. My mental exhaustion has never been that bad since.
I feel for you, as the only way to end this exhaustion is to remove the source of what causes it. I’m sure that isn’t an option at this time.
Take plenty of time for yourself and have other outside interests. Also ask the Good Lord to intervene in those moments.
Good wishes are sent your way.
Blessed Be.
Just never knowing if there's something more I could/should be doing.
Watching as the light goes out of my mom is beyond heartbreaking. Your words are comforting.
May peace be with us all.
Yes, you bet there is emotional exhaustion..... I think it's what used to be referred to as a nervous breakdown.... or at least the pre-stages of it.
There is nothing easy about it.
It does trouble me that some are so bitter that they can’t see past themselves to just be kind.
This forum has some beautiful souls.
ones who use their struggles to give others a lift when we can hardly breathe. Grateful for them.
Praying for an evening of peace for you, mind, body and spirit. 🤗
Yes exhaustion comes from various sources but you HAVE to give yourself a break. At least you have caregivers I was the only one. If I could give you one piece of advice is delegate. Good Luck
Good luck and prayers sent!
Take a deep breath
(love that name btw)
It is often a mix of feeling blessed to be caring for our loved one, a horrible sadness over the thought of losing them, yet wondering if that's the only way we'll ever have a life again. Enter guilt.
Gratitude...Exhaustion...Sadness..longing for freedom...guilt...
rinse & repeat
Briefly:
"Non-workers, such as family members and other informal caregivers of people who are suffering from a chronic illness, may also experience compassion fatigue. It was first diagnosed in nurses in the 1950s. People who experience compassion fatigue can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, sleeplessness or nightmares, and a pervasive negative attitude. This can have detrimental effects on individuals, both professionally and personally, including a decrease in productivity, the inability to focus, and the development of new feelings of incompetency and self-doubt."
Do all you can to pace yourself and care for yourself. This stuff isn't easy.
Sending warm fuzzies! :-)
In the Bible the Lord says to remember the Sabbath and I don't think He is just talking about remembering Him and all He's done. I believe He is saying that we are not made to keep going and going but we need to take a break. I find if I do not take one day a week to just unwind I get stressed. I also, find if I do not take time to spend in prayer and worship (where I can get a good cry when needed on my Father/God) then it makes for a, more than usual, challenging day.
Philippians 4:4-7 Rx for Peace.
I'm praying and hoping you can find what works for you! SHALOM
brain disorder. No cure, no medicine to take. He can hardly walk, have to dress him, shower him, make him breakfast lunch and dinner and bring it to him. I finally got hospice in here to help a little. I am 70 yrs old and it has been exhausting. To see him going downhill all the time. I have to do everything as he can do little.
I am a full time caregiver as I cannot afford to bring someone in and I do not want
to put in a home. I try to keep positive everyday and know that he is going thru alot more then I am. He is a kind, wonderful man and i try to do everything I can for him. Try to keep your chin up and know he does not want to be this way or put an extra burden on him. Enjoy the time you have left with him and know that you did everything you could for him. God Bless
If you are determined to continue, then our prayers for you and maybe you can disconnect more where you can have rest, etc. Or.....
Perhaps it's time to look into an assisted living or nice loving nursing home. It would be a hard decision yet quality of life would improve for you both.
I'm sorry - I didn't mean to focus on me - I can empathize 100% with what you are going through. If you can avoid anti depressants, do so. They might help you sleep, but they can be exhausting, too. You need rest, obviously - you need a vacation. I hope and pray that you get the help you so desperately need.