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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.

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Compassion Fatigue.
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.
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Sure it's called burnout. Get some assistance with these caregiver issues or it will only get worse
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I can't respond to everybody personally although I really would like to. But again, I am so uplifted by the outpouring of support from all of you! Both hubby and I are a lot better now and it's a bit easier to focus on things other than his condition. I do want to emphasize for a couple of posters that the support group I attend once a week is invaluable. Not because anybody can "fix it" but because it keeps me aware that I am NOT the only one, and also gives me an opportunity where perhaps some of my experience can benefit others going through situations I've already experienced.

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.
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Staffbull18 May 2019
Exactly it’s just what we do. There are no questions asked or do we even think about doing anything else. I know there are people who do not agree with me. However we still need to take care of ourselves and not lose ourselves. I look at my moms neighbor. She had been taking care of her paralyzed husband for the last 18 years and not once did she question what she was doing. She did have someone come sit with him for a couple hours once a week so she could go to lunch with friends and take some time for herself. His sons barely visited over those years. Her daughter and husband are daughter moved into the house on the farm and helped out too. Unfortunately, he just passed away and now his boys are all of a sudden there. So, there are some people who don’t think the way we do. Of course, we don’t know why that is. It just is. I am still coming to grips with the fact that is what is happening in my family. I guess it’s just acceptance of what is. You are a good person. God bless you and thank you for posting this question.
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Yes there is definitely emotional exhaustion! Talk to your Doctor about your emotional issues.. with everything you’re going through there’s no shame in asking for help for you. I have been caring for my elderly parents for 9 years. I had similar issues an was diagnosed with depression. For now using prescribed anti depressants and also went to some therapy sessions.. take care 💗
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There definitely is emotional exhaustion. It’s worse than physical exhaustion. Your body can rest after physical work and recover in hours. Not so with being emotionally wiped out.

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.
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Your question hit home for me. I'm only at the beginning stages of this challenging journey with my mother but, like you, there are times I feel exhausted from the sheer emotional side of feeling so helpless. The other day, as I was cleaning up after my poor old puppy, another journey in itself, I just snapped. Tears came and I was forced to take a moment to reflect on myself. Helplessness can certainly overwhelm you, but it's important, as I found out, to not forget who you are in the scheme of everything. My mother always said, 'count your blessings and not your troubles.' Pray. Meditate. Count your blessings. It's amazing how much healing can happen in just a few minutes taken for yourself. In seeking understanding, I have found a purpose. I can offer hope and love and hugs and peace...just like my mother has done for me all my life. As she leaves us, I will know that she knows her life created something very beautiful...and that she is loved. Your husband is loved. You are amazing.
Blessed Be.
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EnduringLife May 2019
So beautifully stated, you brought tears to my eyes.
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.
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Indeed. Church people get it; churchly people get it, older mothers may get it; dads getting ready to retire in a few years may get it, a father that feels they can't handle their Autistic daughter may get it that otherwise drives her places; what we feel may be a divorced friend or grandma can easily have it; it can be a type of frustration or almost like a panging or migraine headache time; it can more or less be true of those that may be suffering from the loss or conversing of their siblings that never get in touch hence or smokers, people can have it of fear, maybe a panic attack, Grand Mal seizure recovery or a wife trying to take care of her husband with Lou Gherig's Disease i.e; a poet can feel it, one about to get Dementia, Alzheimer's or Depression can get it; it may be known more in people with Sciatica or backache(s); people with Bronchitis-like problems may have it or those with bad teeth and root canals the same; snorers and people that can't fight the cold weather may have it; people that have thyroid problems may have it, and people with Adrenal Fatigue can easily have it.
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I think I already answered but too tired to look back.

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.
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Kate06 May 2019
Myownlife, you reply sounds like a call for help, hugs and warm fuzzies. Nurture yourself however is best for you.
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I hear you. There is no big or small concerns regardless of how many resources and how much help you have. You feel the way you feel and it's important to acknowledge you and your feelings. To me that's one of the ways to manage your self control.🤗
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Thank you for asking this question because it just made me realize that it’s what I am going through and it’s extremely frustrating and exhausting. I know my husband is in the same place but he won’t admit it. He avoids going to the al that his dad is at unless he has to. It’s not the dad he knows. He thought his dad would have a heart attack and die on the soccer field. Unfortunately we don’t get to choose our end. I just worry about him. I also just posted about my physical and emotional exhaustion. Again thank you and be good to yourself
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Superstring- first of all, I’m praying for you. You are doing the best you can. I’m so glad you have received some good support, and great responses for taking care of yourself and the true reality of compassion fatigue and results of long term trauma form watching a loved one slowly fade from this earth.
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. 🤗
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EnduringLife May 2019
beautifully stated.
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What I do which has some limited results. Is I step outside of the parent child bond that would of applied to a different time in life. During this time you are the leader. and say to her in your son but I'm also almost a 50 year old man. I'm old as well, and you have to have consideration of our age. No one here is 18 anymore. I am reminded her not as a child but as a regular person who she is affecting that she needs to be more considerate. that it's having an impact on me as well. And she has understood a bit. This disease affects regions of the brain associated with empathy. Being considerate would be under empathy, so you have to remind them cause they are sick, so they have lost the ability to execute the act of consideration. Which I speculate might be to.mcuh work. But I speculate they haven't forgotten what consideration means. These are impaired brains remember they are not inoperable. They can learn even in this state.
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Oh MY Goodness YES..... It is so hard to deal with. I have to say that the emotional exhaustion did eventually take a toll on me physically. Mom had a stroke and was unable to move her entire Left Side. She was taking care of herself prior and this was a real blow for her. I cared for her 24/7 cooked, cleaned took care of all her needs, hygiene picked up her medications because the siblings were calling in for refills of the opiates trying to get the medication for themselves. So the doctor and the pharmacist said I was the only one who could pick up and/ or refills. I have two older brothers who did "NOTHING" during the entire year. All they did was complain about me.
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
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Yes, there is! After I had been living out of state - having had to leave my state, my home, my family, my pets and my life and move in with my mother where she demanded to live alone in another state 500 miles away from mine - she died. I had been there 8 months - the sole caregiver! My daughter then arrived for the funeral. She said I had to make coffee for those who came back to my mother's house after the funeral. I simply COULD NOT MOVE ANOTHER MUSCLE OR THINK. My daughter of course took over.
Good luck and prayers sent!
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This is my first time answering. I don’t think it matters how much help you have it is still your problem and your life. It’s hard and no one knows how long it will go on. You don’t want to lose your loved one but you wonder how long you can go on. I have no help. I live in a new area and all my friends have given up. I can’t get out and I can’t have them in. At this point he is not ready to have someone in to help or go to a respite center.
Take a deep breath
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EnduringLife May 2019
well said Eloise
(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
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Things will change. Even though this is a difficult moment, you've got a lot in your favor, which most people don't have. Again, realize this difficult moment is going to change and hang in there. Also, be as supportive of your support group, and especially your husband. He & they deserve it. Only the very best wishes.
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YES. It's very real. And, wait a minute. Give yourself some slack here. All of this is tough. Maybe stop comparing yourself to others. You have your own struggles, and comparison rarely serves any good purpose. It's ok to feel how you feel. All a part of this journey.
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Google "Compassion Fatigue." It's real. I learned about it from my sister who is an RN. I bet 100% of us on this forum can relate to it. I know I certainly do! I'm starting my 8th year taking care of my MIL. NYDaughterinLaw also mentioned compassion fatigue in her response to you.

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! :-)
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Psalms23 May 2019
Thanks. Never heard of it. This is how I feel. I am going mad and I feel like I can't push anymore. I have had it and see no light at the end of the tunnel.... Thanks again for sharing this.
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Of course emotional stress is real! You're doing all you can and it's a Lot and you keep on going. But, are you getting Any time to just rest and do something you enjoy for yourself? That's hard to do I know but necessary!
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
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anonymous828521 May 2019
Beautifully said. ✌
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Absolutely yes, yes, yes. It is sad to see what happens to your loved ones. You didn't make them that way and you can't fix them - and that hurts. You feel guilty because you are not God - you are human. You live in constant fear with worries and what if...... All perfectly normal and to be expected. And perhaps their behavior is very negative, nasty, abusive, demanding - they are not what they once were and YOU have to take their shit even if they can't help it. There is no law that says that is o.k. So you get angry and frustrated. You play being nice to make them stop which does not always work. You are stymied because you want to scream at them to stop but you don't - you hold it in. You are giving up time from your life and family and there is a point of resentment - all normal. So yes, emotional exhaustion is real - especially if there is no end in sight.
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I am like that everyday and physically exhausted. My husband has PSP which is a
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
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LexiPexi May 2019
My husband has PSP also. He will be 75 in June and was diagnosed with Parkinson's in 2002. Your story sounds like mine. People ask me why I continue to do it. I just can't put him in to a facility or group home either. There are two books 'Ambiguous Loss' and 'The 36-hour Day' - that are pretty good. I don't have much time to read, but get to them every so often.
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I believe mental exhaustion is quite real. We have to learn to take care of.ourselves. just found out 3 months ago our 39 year old daughter with a developmental disability has early onset dementia. Besides our depression her behavior is with anger. It breaks our heart but we are already exhausted. God bless.
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I see so many on this forum who are very love caring family members, friends, etc., who take on the responsibilities of care giving. We did for my mother for a while. As she quickly progressed, so we quickly came to our end and couldn't effectively manage her. After her medical evaluation mother has been in assisted living / memory care ever since. There's total exhaustion in all realms when caregiving. Counseling maybe ok, but the group meetings are very good if there are ones who have good solutions to their experiences, because each person with dementia is different though there are common characteristics or behaviors.
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.
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You've taken care of hubby very well. Give yourself a well-deserve pat on the back. However, you don't mention if you have someone you can confide your ups/down of caregiving and the anticipatory grief you might be feeling. Numbness and exhaustion come from the natural defenses of someone under combination of stress (burnout) and loss of control (grief). Find a compassionate and experienced counselor to talk to.
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Yes, indeed the emotional exhaustion is absolutely real! You have a support system in place and I applaud you for that. Let them help as much as possible. You need to rest and get a good night’s sleep. This will often be an emotional roller coaster for you, so don’t feel guilty when you need to rest or take a long weekend away, or whatever you need to do to recharge. If you find relaxation in a manicure/pedicure, massage, hair appointment, visit to the local library or art museum, lunch with a friend—whatever makes you feel refreshed in a small amount of time—do it for you so you can care for your husband.
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Yes, it's called compassion fatigue and caregiver burnout.
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In a short answer....yes. While I was fortunate that my mom had a wonderful assisted living facility to live in, I still had emotional exhaustion for many years. I lived in fear of the phone ringing with the news that she needed to go to the doctor, or worse, to the hospital. While I truly didn't mind getting her supplies, I felt so defeated when I walked into her apt. with a bag of requested items and she immediately asked me to get something she hadn't bothered to tell me she needed. She could have called me before I came and I would have stopped and bought whatever it was. I think it was a ploy to get me to visit more often, even though I went every week at a minimum. I didn't have it nearly as bad as those who actually takes physical care of the elderly, but I was exhausted just the same.
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Countrygal55 May 2019
My mother would do the same thing not letting me know that one of her meds was running out, etc. Her reasoning was she didn't want to "bother me" but she had stopped driving so I was the one bringing her med anyway and it bothered me more her not letting me know. She lives with me now so don't have to worry about what she needs. Know what you mean about fearing the phone ringing. Usually when my mother called there was something wrong so if caller ID showed her number I would automatically go into panic mode.
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Yes, I had "emotional exhaustion" too, when my mom had Alzheimer's. Hubby and I took care of her. There were days when I'd go into my bedroom and just polish my nails, to feel more like a woman, and less like a fulltime caregiver. I, too, am usually cool, calm and collected, but when Hubby had surgery a few years ago, I felt this underlying sense of panic, too. He's fine, now, but we're all only human. Try to do something for yourself: go for a walk, read  book, etc. Speaking of the latter, I wrote about our travails taking car of my mom: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I think the humor in it might help you, (along with some advice and shared experiences). Best of luck.
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Yes. Without a doubt. Sometimes it happens while you're going through the stress, but sometimes it happens afterwards as PTS (post traumatic stress). I still go through this. Mom passed 5 years ago and as I struggle with my own age related health issues, it's come back to haunt me. I fought for Mom, but I just feel like giving up on myself. I'm just tired. The system doesn't work like it's supposed to. There is no help for people who can still do most of the basics like shopping, but need physical assistance for windows, major cleaning (like under refrigerators under the Elderly waiver program - but it doesn't cover us.) There is help if you're ready for the nursing home but don't want to go there yet - they will transform your home into a nursing home. But there isn't help for mowing the lawn or snow removal when you can't afford to pay for it with the kinds of storms we were getting this last winter. I have reached the point that my arthritis is so bad, it's extremely difficult to do dishes or make my bed; cleaning the toilet is extremely dangerous. I stopped being able to do the lawn a number of years ago, and while the lawn can wait w/o putting anyone in danger, snow and ice can't. I have looked for assistance everywhere because I just cannot do it any more. I can't go through another winter like the last one. I was ready to sign into a nursing home at the end of March. The emotional exhaustion and flashbacks have me "walking in my mother's shoes". The financial aspect of it all, the physical demands - I am ready to give up. I won't ask for help another time. I'm exhausted from begging and pleading for someone to provide volunteers at least, but even city hall says they "don't have the resources". I feel lost and helpless to help myself. I don't fold clothes any more; it hurts too much. They get recycled out of the clothes basket. I can't sweep snow or any large space; the effects on the arthritis in my hands are devastating. Some days are better, admittedly, but in general, they are worse. So very, very tired. The doctor doesn't seem to think I need any help - but if you're ready for the nursing home, they will turn your house into a virtual nursing home and take care of all those things. Nothing for people who can't afford to pay for those things. It's so very frustrating.
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.
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BadChoices Jun 2019
Dear it happened to me. You are definitely suffering from PTSD and sound depressed. If your doctor won't help get a different doctor. Go to your local health store and get something natural for your arthritis pain and adrenal fatigue. Google volunteers for the elderly and see if there's a volunteer group that will help. Maybe instead of thinking nursing home you could think condo where all the outside maintenance of taken care of. Know I am praying for you I can feel your pain. You feel you have so much and now you need help and no one is there for you. I totally understand. Please take care. Try to get out and have some social interaction too. God bless you.
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Most people cannot afford all of those home caregivers which is why people put their loved ones in nursing homes.
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