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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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Oh,gosh, Supe. I understand perfectly where you’re coming from. As a matter of fact, my husband is sick today too. I work in the baby room of a daycare and was sick with “baby germs” all weekend. When I came home yesterday, he informed me that now, he had “it”. Only, it seems to be more than just a cold and since he’s bed bound and I can’t get him out, I’ve had to call for the visiting nurse practitioner to come tomorrow. I am very afraid he’s having a relapse of Congestive Heart Failure.

I am emotionally exhausted and have been for longer than I can remember. At a time in my life when I should be relaxing and enjoying my grandsons, I’m working to help pay bills so we can keep our house, taking care of hubby and just generally running 100% of the show. I completely understand what you’re saying. All I can say is enjoy the small things. Take pleasure in sunny days, fresh laundry, a nice glass of wine, anything you can find to warm your heart. With me, it’s my grandkids and my dog. Hope your hubby feels better fast!
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Of course, it’s emotionally exhausting! It’s tough. I hope you can take a break soon. Hugs!
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I don’t believe in the saying “ I complained that I had no shoes until I saw a man who had no feet”
each persons problem/challenge in life is their own. It’s happening just to them. Please don’t compare your situation with another’s. That’s a one way guilt trip Yes, there are plenty of others doing it really tough with little help but that’s them. You are compassionate but don’t apologise or feel bad
we are keeping all the balls in the air and sometimes we drop them
I used to run a plumbing business with my husband and then I had to get a job scrubbing toilets in a factory three nights a week to get the bills paid. Did it for 12 months
emotional exhaustion. For sure. I went a little bit nuts for a while.
You will be OK.
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NeedHelpWithMom May 2019
I hate that saying too, Panda because it kind of discounts what a person is going through. So what if a person has something to a lesser degree? They are still hurting.

Thanks for bringing this to everyone’s attention. I appreciate it. Helps me to clearly see how there can always be more than one point of view.

I get sick of debating or bickering. Allow everyone to have their own view. Sure we can all state why we have our view but then understand others are entitled to their opinion no matter what it is. It can be dumb, stupid, ignorant, whatever...it’s their right to feel as they do. Unless it is a danger to others, so be it.

Good for you, Panda. When I was younger I did what you did, worked very hard, worked two jobs when I had to. Know what? It made us stronger. We didn’t break. It didn’t kill us. I was dead tired. My friends complained that they didn’t get to hang out with me because I worked all the time. I simply said that I had bills to pay.
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Superstring,

Well, of course you're emotionally exhausted! Your DH depends on you for so much, and you love him. And now he's ill!

In this life there are some of that just roll with it. They take things in stride. I'm not one of them, and you may not be either. Any change, good or bad, takes the stuffing out of me. I get rattled at just about everything and it exhausts me.

A homeopath once told me that cortisol produced by stress depletes us of adrenaline, leaving us exhausted. I suspect physical exercise would help this. You may want to ask your doctor about adrenal support. I probably should, too!
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Agree with 'emotional exhaustion', it certainly is prevalent in caregivers. Probably a much more accurate term for us than the word "depressed" ! Thanks.
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Emotionally exhausted, is very real, we are basically parenting very large kiddos. So,caring for anyone with adult sized needs, is exhausting. Hugs. adulting in general is tiresome.
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Thank you so much everybody for responding! Your kindness and support really have given me a lift. Earlier today he was so sick, he couldn't even hold his head up and his jaw was just hanging open and drooling and his cough was awful. But now he's sitting up and has eaten something and had some fluids. It's hard for me to just let the caregivers take care of him and go take care of other responsibilities. And yet, if I just keep orbiting him, I get more and more anxious. Oh yes, I forgot to say that I got sick at the end of last month and it turned into pneumonia, which I'm just getting over now. Maybe that has something to do with it ha ha. I'm easing back into my daily walks which always help.
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EnduringLife May 2019
Glad to hear he's better....and you too! Pneumonia is no easy illness to battle under the best of circumstances.
(((hugs)))
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Several hugs being sent your way. Are YOU getting out a little bit, buying yourself a “toy” now and then, taking phone calls from nice people?

My mother would get an occasional cold or bronchitis while in residential care, and no matter how old she was at the time it would be excruciating for me until she was well again.

The whole process of living with the care of a loved one imbues one with the unceasing weight of constant responsibility, constant cortisol/adrenaline, constantly painful concern. Being there for your DH, WHETHER HANDS ON OR NOT, drains your reserves and lessens your attention to your own needs.

My life has changed, for the better, since I’ve reconnected with my youthful passion for music and begun to play the tuba.
May you find a glimpse of “tuba” in your life today!
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anonymous828521 May 2019
Tuba, that's 😎 cool!
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Hell yes. Emotional/mental...it's burnout. I have come to realize often much of my tiredness is from the mental grind of having what seems like a zillion details for those I care for on my mind. But...you do have help and one thing I come away from my group meetings with is feeling blessed things are not worse. I don't know where you are, but the group composition changes from time to time and if you can go to another group maybe you'd be happier. Many caregivers do not have in home help...so take advantage of it...lock up your valuables and get out and away! Go to the library, to a mall. And, if you truly need some rest, go to a hotel. Heck, I'd even speak to a manager and ask if you could have a day rate under the circumstances. You could order a nice snack from room service, watch a movie or not.
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Absolutely! At least I sure hope so because I know the feeling all too well.
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You don't want him to die. You know that any given illness could be the one that leads to complications he can't overcome. It is hard to just tell yourself you are doing all the right things and it is up to God... and it is likely physically as well as emotionally exhausting. Sure it is a blessing to have good help and a pleasant relationship but this stuff is still hard, hard, hard, hard, hard. ❤ Sometimes I feel like I'm just pretending about being the grown-up too.
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You don’t know what exhaustion is until you are also the caregiver by yourself except perhaps for a stream of misfits sent by Home Health Care Agencies who show up or not as the wind blows. You are lucky to have a helper, a caregiver with common sense so it sounds. Count your lucky stars for the help you have. Most of us have none or next to none.
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EnduringLife May 2019
What can't be "known" is what someone else is going through.
Yes circumstances are different for everyone; but just as in grieving, no one's loss is worse or easier than the other's.
Certainly having a caregiver, or BEING the caregiver puts an entirely different equation on the table, but our emotions...our capacities for dealing with the stress of a sick loved one, aren't dictated by the amount of work we do.
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We need to accept things as they are that we are caring for a sick person, its a 24 hour job and that does affect the carer's physical, mental health. The staff that work at hospitals and nursing homes work there for a few hours, go home and rest and live a life way from this atmosphere, sometimes they even bond with a patient and they also have to seek some counselling help. Carers have no breaks, no rest, unless you find that time of space for your own health. Its very hard. Joining a support group/prayer group is definitely a must. This a journey for all of us, caring for our loved ones and its not easy. You will only find strength if you seek God, He will provide whatever you need. Its good to talk to someone you can trust, either in the church or family or health professional. That feeling of not being able to breathe when faced with stress situation is not good for us, and you need to find a program to relax, find a gym, swimming, walking, hobby, whatever relaxes you.
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Support Group? Who has the time to go to a support group? What a sham!
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EnduringLife May 2019
Stop using people's hardships and emotions as a salve to sooth your own issues.
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I cared for my bedridden mom with very little help 24/7 and she had horrible health problems. Hospice was there a couple times a week, but I had the brunt of the care giving. It should not matter how much one has to do or doesn't when it comes to emotional exhaustion. The pain is there just watching the loved one decline.
Sometimes I found it worse to have people barreling in and out of my home and witnessing the worst time of life, and preferred just doing things myself, though that exhausted me physically too. I found the time when mom was sleeping to grab a moment on the computer and connect with other wonderful care givers here.
I really think the mental pain is there no matter how much or little help one gets.
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What you are describing is love.

My emotional well being was on a rollercoaster sitting next to my mom’s vitals.

Take a deep breath and a break. You’ll feel better ready to face challenges when you return.
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MaryBee May 2019
“My emotional well being was on a roller coaster sitting next to my mom’s vitals.” Wow. That is such a good description of how it feels. Putting it that way just affirmed what Caregving is like for me and so many others. Thanks ACD and best if luck Superstring. Please take care and get some rest.
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Oh my gosh.....yes, there is. And don’t discount it for a moment. Although certainly a far cry from being a full time care giver to my 89 yr. old mom, my time with her only adds to an already full plate. Caring for grand babies, helping my adult daughter with severe RA, and a husband with heart failure and a host of other ailments. And from reading posts and answers from this sight, I am hardly unique. Others are FAR more consumed. Please find a way to step back and take a much needed break. Just because you are fortunate and have wonderful help, chronic illness of your LO takes a heavy toll emotionally. You need time to reboot. We’ve all been there. Self preservation is mandatory.

And as a footnote for those whose remarks that are less than helpful.....people reach out because they are looking for answers, insights, and advise for oftentimes overwhelming situations. I believe this forum is to be helpful to those sharing their experience.....and not to pass judgement with snide remarks. My humble opinion.
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EnduringLife May 2019
Absolutely Abby. you are so right.
Self preservation is paramount to not only our own well being, but to how well we care for others.
Also, upsets me to see the judgemental comments. Not everyone's experience is the same; it doesn't mean they aren't just as in need of empathy and kindness!
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Sometimes when you are juggling many things and you add just one more "ball", it's too much. I think it's also a fear of the unknown - will this latest issue lead to something more devastating or will they recover and be OK.

Good for you for going to a support group! Sometimes just knowing we are not alone in this struggle makes a big difference. Best to you and your husband, I hope he is feeling better.
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Yes. Of course you can be emotionally exhausted. I started using Ashwagandha when the stress got too much for me. The doctor wanted to put me on Zoloft but I chose an herbal route instead.
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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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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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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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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, it's called compassion fatigue and caregiver burnout.
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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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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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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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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 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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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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