For those of you who are caregiving and living with the person you are caring for 24/7, how are you coping?

Not so well. Taking care of my 83yo dad. He suffers from Parkinson's, chronic kidney disease, he's had several types of cancer including bladder cancer so now he has a urostomy. He also has borderline diabetes, and high blood pressure. I do have my husband and daughter to help me, but my sister is useless. Alcoholic and addicted to prescription pain killers.
I have to agree with most answers that it simply isn't that easy to "take more time for myself" or "take a vacation". Yeah right. I wouldn't enjoy myself as I would be a mess worrying if dad is okay.
I'm not quite 40 years old and I am totally dedicated to my dad. I wrestle with the thoughts that I am neglecting my husband and our 17 year old daughter. I know she is extremely close to her "gpa" and she is more worried about his well being, but it doesn't stop me from feeling guilty.
The thoughts I feel most guilty for having though, are when I get frustrated and think to myself, why did I have to take this on? This is usually when I'm super frustrated with my sister. I also feel really guilty when sometimes I wish it were all over, that way dad wouldn't have to suffer anymore and I could grieve and then have my life back.....I cannot explain how guilty I feel when those thoughts come up.
The absolute worst thing I think that I deal with though, is nights like tonight when all I can do is think the most negative thoughts about how dad is slowly dying and how it won't be long and I'll have to say good-bye. These are the nights that I have a hard time coping. I cry ALOT. It upsets my daughter, I know, but I cannot help it. I just get so down and I don't know how to cope with it......

Blondgoddess - you wrote:

"I also feel really guilty when sometimes I wish it were all over, that way dad wouldn't have to suffer anymore and I could grieve and then have my life back.....I cannot explain how guilty I feel when those thoughts come up."

I totally understand your thoughts because I have the same thoughts, too. And so do A LOT of us here. It's our survival instinct crying out for relief. Many of us here are literally killing ourselves to care for our loved ones. I wish my mother would end her suffering before she losses her dignity. I wish the same for myself, too, when I get old.

I used to feel very guilty, but not so much any more. I won't ever share those thoughts with anyone who has never been a caregiver and won't understand the tremendous stress it puts caregivers, and the lack of life quality our loved ones have to suffer before they pass. I used to think longevity was a good thing. Not anymore. It's a curse when you have no health and no life.

Don't feel guilty. I wish you peace with your own thoughts.

p.s. Are you a spiritual person? Do you believe life continues after death? If so, take comfort in the that belief that your dad will not die, but will just move on from his broken body into the spiritual realm.

I just have to comment...take with grain of salt, as I have no children. Your 17-yo, Goddess, is modeling on your behavior. Don’t let her do it. She should feel free as a bird, selfish in every possible way.

Find ANY other help...but not your daughter. I apologize if it sounds harsh.

Added...i have no children, but I also have no siblings. So my Mom’s care, whatever I can figure out, falls to me. Fortunately, she has finanicial resources and so do I...so that part (while not infinite) is not an immediate concern.

Just found this site and I feel that my feelings are justified . I am a multiple caregiver. My son , 38 has schizophrenia . He is a tremendous help and blessing to me . He does have episodes that are devastating , and has odd ways .
My husband has many health problems, dementia, copd , incontinence ..he has a positive attitude . I take him to many doctor visits . Which is an all day event , quite often. I help him with meds , and keeping track of appointments . We had plans to travel . I like to get away to see my grandchildren .
I also am caregiver to my older brother , who I moved in with , and have made many improvements . It was my parents home , that he had lived in all his life 
. He dwells in illness , having complaints daily , gas, constipation , taking bp frequently thruout day .
He will only eat certain foods , does not contribute regularly to food expense ... says he can't eat what I fix .. but does , has errands almost on daily basis , will not leave house .. today he decided his kidneys are failing ! He has Drank about 1/2 cup of water , just can't drink !  He will not change routine he has , meals, and stays in bed at least every other day . He has not had a bath in years , because he won't pay for facet to be fixed in his bathroom , he won't spend money .  
He is hypochondriac. !!!
I am so frustrated that I am grinding my teeth down . Oh yeah he is hoh, hard of hearing . He cancels dr appointments , and does not ever want me to leave ... driving me crazy !!!!!!
He is addicted to benzodiazepines , because he is so anxious .
He told my  older brother who is no help to me at all that I am mean . I feel mean . I have lost compassion , he is so self centered . I resent that my life is being used up with his neurosis .  This older brother thinks I should stay here and cook and wait on him .. I had breast cancer this past year and he didn't think I should leave to get treatment .  
It is crazy situation .... I feel like I am a spare part .  I realize he is mentally ill , 
his only care is for his pitiful self .
I just had to vent !!
It is a place I never wanted to be , but here I am .  
I do best I can  .  

Wow, Vjewel. You have a lot on your plate. Blessings to you.

May God help you Vjewel.
He is our only hope in this life.

Vjewel,

You said you’ve lost your compassion, yes, I can understand. Sometimes I feel the same way, which I think is almost unavoidable when we deal with injustice on a continuous basis, don’t you think?

I then have to, first, forgive myself, because I feel guilty about losing my compassion towards someone I love (to your point of feeling mean) when I KNOW the person cannot change; and then I’ve to try to find compassion in my heart again, despite the continued rain of injustice...talking about rain, it’s like trying to get dry while storming and raining non stop, without having a dry place to go to. Maybe a weird metaphor, but very close to how trying to find your compassion in the midst of constant injustice feels like to me. The only dry place to go to, is God’s heart to me.

So much, really so much of what you describe about the situation with your brother sounds incredibly familiar...Dwelling in illness! hypochondriac, rejecting the food you make, addicted to -in the case of my LO clonazepam-, saying you’re mean, extreme dependence, etc, etc. So many similarities.

Yet, there’s a key difference between your situation and mine, I only take care of one person and , knock on wood!, I’m relatively healthy. I’m pretty sure you’ve overdrawn your health account by allowing yourself to become an spare part (very real description of what this feels like).

I think it’s time Vjewel for a serious reassessment, because you’re a mother and I’ve the feeling in your heart being there -as in literally being there, alive- for your son is a priority, and I’m afraid this situation is seriously taking away your life, not only your quality of life, but your actual life.

I don’t know how old is your brother, or any details about what he could be a candidate for, but there has to be something, some sort of system assistance he has to be a good fit for. You probably never wanted your brother to resource to external help, you wanted to do it yourself with love, and you have!
But stop and look at the situation, do you really think he’s receiving the best assistance possible? I don’t think so. And it’s not because you’re failing Vjewel, not at all, it’s because he needs a different type of help to deal with his phobias, anxiety, dependence, panic, etc. After a while, taking benzodiazepan is of no help but detriment, and whoever is prescribing that to him without sending him to be seen by an specialist is not very good.
So the situation seems pretty poorly handled for your brother. I don’t think you mentioned what physical illnesses he suffers from..seems like his mental and emotional status are the main problem.

Out of love, I think you owe him to find a better arrangement that excludes you as his 24/7 caregiver, ASAP. I encourage you Vjewel to start doing research and not feel guilty about doing so, because it is for his own good.

You don’t mention how you’re doing with cancer? Like I said before, if you want to be there for your son, you’ve got to look for your own wellbeing, not out of selfishness but out of common sense.

I’m a firm believer that God is with us always, and he sees each of our circumstances. Grab on to him! Do it with trust and blind faith, because He really never fails! But as you grab on to him asking for strength and wisdom, also ensure to take steps towards a change! He will help you, don’t doubt that.

I’m pretty clear that our duty as Christians is to do good to others, no matter what. So, I’m encouraging you to do good to your brother by finding a different arrangement for him and his life that really means the improvement he needs. I’m sure you made a world of difference in his life! But I think your mission needs to change its shape now. It’s time.

Lastly, look at the amazing blessing you’ve, being able to recognize the good in every situation, no matter how hard:

Your son is schizophrenic..BUT he’s a tremendous help and a blessing to you!

Your husband has many health problems, BUT he’s a good attitude!

Despite the stressful situation with your brother, YOU have made many improvements!

Do you know how many people are completely blind to the bright side of life? Many cannot see it, even if in front of them.

That is the evidence of the love of God in your life. He not only keeps you going, but makes you SEE the light in the midst of darkness. Hope you really realize this, so you also realize you are not and will never be alone!

May He bless you greatly and help you find the best path possible!

I feel guilty sometimes because it’s so easy taking care of my 92yo Mom. It’s her home and I live here for free. I moved in after I separated from 30 year marriage. I have little income so I don’t know what I’d do if I weren’t here taking care of her or what I’m missing. BUT! That’s not always the case. She now has assorted pains that disable her from getting up and walking. Pains that are not medically acknowledged. (Meaning: there’s no cause though I don’t doubt that she hurts) The thing is that laying in bed stiffening up does not help! I have had in-home therapist work with her and she is fine when they are here but she finds reasons to fail again. Then if she does take a fall she carries on as if she’s been crucified! That is always the day after though she’s been up walking and joking and reassured me she wasn’t injured the day of the fall. She is so weak from inactivity I’m amazed she doesn’t fall more often.
I feel guilty because I have ZERO compassion for someone who wallows in self pity and won’t attempt to help herself. Sometimes she yelps before I’ve even touched her and the contortions she goes through when she says she’s moving herself are laughable and just a waste of what little energy she has.
I have 2 siblings and grown kids in the area but I seldom see them. My sister takes us to appointments and pays for unexpected expenses but is rarely hands on. No one offers to give me a break. As a matter of fact I had emergency surgery and was in hospital 6 weeks and they had trouble taking care of her. Then left me alone with her the first night I was home.
Then there’s the house: the repairs are almost entirely left to me as if I know what I’m doing. I am a retired 65yo 5 foot tall woman who worked at a desk all my life. We spend pretty much all she earns so if I can find someone I can hire I pay out of my small check. Did I mention we don’t have a car? Grocery shopping alone is a problem. So I would say I’m doing excellent if I’m not going completely insane at any given time.

The information and personal experiences reflected in this SUPER discussion should be published and sold by Amazon and others......MUST be published as an Ebook and also
in hard copy. The Internet is super, b,ut most of family and others who need to read what is published here, even with direct links will never have the awareness, time or inclination to
read all the invaluable information contained in these insights and testimonials.

It does help to know there are others in the same boat, but.... what to do? My husband picks at his skin until I think I will go crazy. Drs don't help; I need a permanent solution!

My mother and I have been very close since I was born... probably started when I was still in utero.
I hope my words can get posted, but, so far, I'm not able to post....so, I'm trying again.
Anywho, it was only natural that after my dad died, and she was blind mostly from Mac Degeneration that I'd care for her. My sister tried to be caregiver, and as she lost her house, needed a place to live....so, she moved in. Big Mistake. Eventually, she and I had a row....a big one...I had previously been driving back and forth across state lines to care for Mother....but after 2 1/2 years, then my sister took over. Long story short, my sister that bad night yelled at my mom and me, "I divorce both of you!!!"...pointing at each of us as she slammed the door on her way out.
The next morning I filed a police report on her....just in case she gave us more trouble.
A month later, I moved my mother out to Az, my home.....and we lived together with my long-suffering husband....he and my mom got along well, as did she and I....as I stated, Mom and I always best of friends.
Caregiving is often demanding....but I loved my mom and only wanted the very best for her, so I was up for it. What really wore me down were all the cats....I'm a rescuer, unfortunately. So, there I am, feeding and caring for an indoor population of cats as well as an outdoor feral population! Yes, it was very hard and a crazy workload.
I'm sorry to say, but I took out my frustrations on the cats...I'd yell and cuss at them....but never at my mother.... she's always been my angel sent by God. But, the cats got the brunt of my need to vent, and vent I did.....so, I totally understand when caregivers have to yell and scream....just don't vent at your poor, old dad or mom....they gave all for you, now it's time to return the love and care, withholding nothing.
I made sure my mom got the best of everything I did, because she was so worth much more.
Ok...I'm trying to post now...hope it goes.

Hey guys!
My post went through!!! Yaaay!
I love this forum also....I find it helpful, encouraging and educational.

LastOne I so relate to how you are feeling. I moved in with my parents from out of state to care for Mom for a few weeks after her release from the hospital after being in ICU. My sister could not as she has a childcare in her home and she lived close to Mom and Dad. I left my thriving business in Texas to come care for Mom. Makes one go hmmmm. Anywho with in a week I knew my Dad's Parkinson's had progressed significantly since I visited a few months earlier. So I told my Hubby of 3 years that I would be staying in Ca for a long while. My Mom passed away 4 months later and I knew I couldn't leave Dad so after being his assistant for a year, my hubs retired early to join me. We've been on team Daddy Bear for two years now. Me a total of three. Well three months ago we started feeling more and more exhausted, not sleeping at night, me with hives all over my body including face, feeling like we were in an emotional fog 24/7, our back going out and more. I read up on Caregiver Burn out and realized we were in the midst of total burn out. Dad's Parkinson's has progressed to the point we feel like we are caring for a newborn as we can not leave him alone, he is a fall risk, also is dementia has increased to the point it is like Who's on First Base all the time. And I was in tears often. So I went on anti depressants as I knew this is situational depression and I so needed clarity to make decisions. I spoke to Dad that we have been here three years and we would like to travel and re open my business. He always said he felt badly we put our life on hold. We are 57 & 59. So we said that and that we felt it would be better for him socially wise to be where he had his own tribe. It was the most heart wrenching conversation and took three weeks before he would tour the Assisted Living place he could afford and keep the house too. He liked it but put up a stink for a few more days then realized it was his only option. As 24/7 care hubs and I had been giving him would cost 10k a month not the 2k he was paying us. Soooo Daddy Bear is moving into his new apartment mid May. We will still take him on trips etc but not be his team 24/7. Whew. Lots to do to get him there but at least we can see light at the end of the tunnel instead of a pin prick of light. When I read 69% of caregivers for family members tend to die before the person they care for, I knew we needed to get out of this role asap. My hubs had cancer 5 years ago and lost one kidney. We want to enjoy life as much as we can in case it comes back. We will leave part of the time in Dad's home and on the road in our RV. I will still be his main person in the family, taking care of his home, finances etc but I do not need to be here all the time. We are so glad we made this deacision before it was too late. Dad is now embracing his new Man Cave apartment and looking forward to moving in. happy dance for sure.
Sending hugs to all of you awesome caregivers. Burn out is no joke. Take care of your selves and if you can make a difficult decision if you can to not be the 24/7 caregiver.

Hugs,
BB

Bronish - Good that you and your mother are close. I wish my relationship with my mother was that way. Years ago, it was. I used to like/love my mother, but not anymore. I take care of her out of duty only. My animals (chickens, cats and a toy poodle) are my stress relievers. I love them. They keep me sane. Taking care of them helps me unwind and forget about the stress and burden and demand from my mother.

Hi!

I'm 32, single and been caring for my father who has Lewy Bodies Dementia since I turned 21. He is 70. I'm an only child and nearest relatives live 300 miles away. Most of the day, in between what he needs etc I'm in my own room but I have to sit with him at least two hours a day in the evening because if not be is constantly barging into my room without knocking. He makes groaning noises all the time and holds complete conversations with whatever his mind is doing or saying to him. Mostly we get along fine though I do find it hard to stay patient with him. Especially with the noises and constant conservations, sometimes he starts swearing for no reason and starts threatening violence. It drives me crazy!

I'm not doing good at all I find myself aggravated and angry all the time I'm still doing okay enough to take a deep breath and walk-in tour without her realizing it. I'm not eating right I'm hardly sleeping I don't go out. I just don't care anymore about a lot and honestly would be more than okay if I can wake up tomorrow morning. I shouldn't have to be alone her husband's perfectly fine and capable of helping but just won't and takes all over money. So I'm taking care of two people on the less than $1,000 a month and it's really not easy. I'm giving up, but at the same time I'm grasping for straws and I'm struggling trying not to.

Coping some days better than others honestly...yesterday I was tired, irritable and cranky. Today I got to rest a little while my toddler and mom took a nap, so I got a little breather from "going, going, going."

Hugs to everyone on here. I'm a relative newbie compared to some that have been doing this for years on end.  This site has been such a big help to know there are others out there going through the same thing.

I think the biggest source of anger (and justifiably so), is when other family members won't help at all. I have told both my parents (who currently live alone and get around fine) that if they ever get dementia or become bed ridden, it WILL BE Assisted Living or NH. I've seen too many people age themselves rapidly by giving up their lives to take care of an elderly relative, very often when there was money or property to be sold to pay for AL or NH.

I know its tough. I am caring for my 95 yr. old father, and my wife and two kids are with us. There was a lot of adjusting but I am fortunate that my wife is kind and patient.

As difficult as it can be I also remind myself (or at least my wife reminds me) that this is temporary and the right thing to do. It has also given me a chance to reconnect with my dad which I know I will cherish once he is gone.

Thinking about the good does not always help with the difficulties of today, but knowing you are doing the right thing makes it manageable. And always, always talk to someone. Anyone!. You need to vent and get it out.

Not well. I “lost it” again today - happens about every two weeks over nothing of consequence. Cry every day. Just don’t know how much more I can stand. I feel absolutely terrible after - apologize and try to make up for the outburst.

Judygt, I totally get it. Be kind to yourself, it's not easy, especially when you're tired and worn out. I don't know your situation but hopefully you can get some relief soon. For me, I am trying to get mom set up with home care (in her home) or AL. Either one will allow me to breathe again. Shoot, I may just throw a party! :)

I would say to everyone here whose parents HAVE THE MONEY AVAILABLE, to definitely put them into AL or SNF. I've seen too many people work themselves to an early grave taking care of a parent 24/7 just to keep the SNF from taking the family home or farm. Is it worth it? I say NO, it is not.

OMg. So many of these stories here have made me CRY!
My heart goes out to all of you.

I am just responding to the original question.....

I am not doing so well lately at all. I feel SO out of my depth in this situation. I don't feel compatible with this experience at all. I don't feel it can go on much longer without something about it changing...

I just know I HAVE TO place more focus on my own long term plans again now.... Whatever that could mean for her future too.... Assisted Living etc.... I don't know what will happen for her long term.... But I know I have to make changes for my life sooner rather than later....

I am joining a local dementia caregiver support group this week and I am also seeking a local personal counselor for support too.

I feel both of these pursuits will be a BIG HELP. 

I live with and take care of my mother. She's 78. She is still somewhat able to do things on her own but could not be by herself. I have 3 boys who have girlfriends and 1 has a family. I also have 2 sisters and a brother yet I feel completely alone. One sister helps occasionally. I've been going into depressions more and more frequently. I get the same thing all of these comments say. You need to take better care of yourself. I work full time too. By the end of the day I am exhausted. I saw one person mentioned that working to take care of yourself seems so much like another chore. I sit and cry alot. I pull back from my family and friends. My problem I think is all the snide remarks I get from my mother like I do everything for myself and nothing for her. I don't want praise, I just don't want to be treated bad either.

Raunsmom: I am so sorry that you're experiencing this. It is tough to provide care for your mother because of the dynamic that exists between mother and daughter. Remember this: hang in there because this too shall end.

It is real easy to say “put them in a home” but even if they have the money to pay for it, how do you know how long it has to last? You just don’t know! Also, how long will she be mentally cognizant? Again, you just don’t know.
I care for my 92 year old Mom in her home following the end of my 30 year marriage where we lost everything in the battlefield. On the one hand I am grateful to be secure in my living circumstances but on the other hand, I should be taking responsibility for my own life and I should be learning to live my new life whatever that may be!
Firstly, we are totally isolated due to the fact we don’t have a car and also because early on my mom stopped accepting invitations because of physical symptoms (sudden diarrhea or nausea and vomiting) that I have been able to amend after much research and time has gone by. Now she’s not able to move freely at all and no one asks anymore. I don’t blame her one bit that she is bored but she is so inactive that when she becomes ill she digresses to being chairbound. In that case, I am unable to leave the house at all without arranging for care.
Another thing is I would not have applied for early retirement if she did not need me at home. Knowing that she will certainly need me more rather than less influenced my decision. Having a job would have made all the difference in the world to my self esteem as well as intellectual stimulation.
It’s a lot like when my children were young I stayed home with them rather than have babysitters. Still, there is a stigma attached to us regarding laziness and stupidity. I feel the same stigma is attached to this job as well.
Consider all the responsibilities we assume from doling out medications, observing side effects, to primary care of illnesses, communication with health care workers, to handling their finances, to house work and repairs, to nutritional needs, to physical activity for our charges, to shopping, safety, mental health, and most important psychological! Meaning patience and security for them.
All the while being criticized and second guessed by outsiders!
I am here for the long run because I believe I will be spending a lot of time with her even when she does go to a home. That’s the only way I can see of making sure she is getting quality care. No one knows her like I do, even though I’m the first to point out how bad she works me.
I’m fortunate in that my family often asks me how long will I be able to do this. How do I put a time limit on the unknown? I am not strong enough to carry her but I can assist her mobility. I have no medical experience or training so when she needs that kind of care I won’t be much use to her.
It kind of feels like it’s going to be me who pulls the rug out from under her and I don’t like that very much.
But yet...I often wonder if my being here is bad for her. She doesn’t have any friends her age, and I don’t provide any activities for her to do. The way she can work around me to get out of doing things for herself is not good either. And it’s true that I often don’t see things that need to be addressed because I am too close and stick to the status quo instead of making her reach for more independence. I often do not notice things right in front of my face from being here all the time.
For instance I had a major problem with her about meals because she had dental problems. She told me over and over she can’t eat this or that then she’d get sick taking meds on empty stomach. I would tell her she has to get that fixed but still indulged her in the struggle. Well, it turns out that she disliked her last dentist so much she was fearful of going at all. She was using money as an excuse when I finally realized she should see my dentist who offers a payment plan and is quite skilled. I was worried I would get flack from my sister for recommending a “welfare” dentist. It turns out that she got serious dental work done far quicker and painless than she imagined possible. She will soon have her new plates and will be eating vigorously any day now.
There are many examples of things that I just didn’t understand what she was telling me that could have been addressed many years ago.
I can’t seem to remember that she is no longer a grown woman who should be taking care of her own body. It’s very hard to not do everything for her but to do what she needs me to do. Just like my children when they were in grade school. That’s the hardest part of my job.

It is extremely tough. it is a sacrificial labor of love. Hang In there everyone.
But by the grace of God go I.

Hi Everyone,
I was 24/7 caregiver to my honey for 13 years until he went into the hospital 9 days ago. We are not married, even common law, though he has now started introducing me as his wife... Love him but ugh! And he is still being difficult to say the least (see tough decisions). I have tried being understanding and/or staying quiet when he turns into a bully or gets sarcastic, but he seems to be living in an alternate reality. He will not listen to anything I suggest or say and tells me I will do as he says. His favorite saying is shut your mouth (doesn’t matter who is around) and oh, I have been told when the doctor comes in I am not to say a word and I am not supposed to talk to the doctor alone. I finally got a belly full and lowered the boom on him the other day and again today. He told me to sell the car (we only have one) and that I could ride the bus. He is adamant that I am to do the transfer between the hospital and rehab. (hospital will not allow it since he is on IV meds) Then he told me if he decides to leave the hospital or rehab and check himself out I am to come pick him up and take him home. Advised him unless he is self sufficient this is not going to happen. My honey then told me that what he says goes and I will bring him home then I will do what he says after he is home. Advised no as I am physically unable to care for him in his current condition. And as to home, I make the decision concerning home. (it is my house). Then he switched to another tangent that was basically along the same lines. I finally said look, if you think so little of me, do not want to be with me and/or do not love me...tell me and I will pick up the pieces and move forward with my life and he could figure it out. That stopped it cold for a short time. I know he is scared but I refuse to be treated as a doormat or verbal whipping post as I have been since Feb. Being scared only goes so far as an excuse. I thought I was being over sensitive but others (family and hospital staff) have seen it and commented. And his attitude is only toward me. Sometimes though I see the man I have loved for thirty years come through and I miss seeing that.

I am at the point I don’t want to visit but keep hoping that he will come to his senses. In thirty years he has never treated me this way until it started in Feb. By the way, I hold Medical and full POA. I have advised both the doctors, staff and his caseworker that they are not to allow him to check himself out. I am to be called immediately. I haven’t given up on my honey as yet. But the trips to the hospital are exhausting.