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

I do my best to cope a day at a time. I've been doing 24 for going on 5 yrs, three the summer I've gotten two days off a week. But a lot of times I am stepping out of one mess to another. The winter time comes and i am here with no breaks. No this year i am not doing it. My ex father in-law, is 90, had a stroke 4,the ago, I've had 15yrs experience in nursing home care, I was asked to help ,and I get 200$ a week. I moved in my children's dad who lived here, was as hard as his dad to deal with, so my ex passed away a month ago. Even though we weren't together, I loved him, and he didn't help, he was hard to deal with as he always was, it's been a real roller coaster, I've got 3girls that lost their dad,19,21,23, agaiin, cause he wouldn't care for himself, his sister has been the one who comes two days aweek, his other two brothers are no help, there's so much negativity,without gods promise, I wouldn't of couldn't Handle this, there's so much to do, father n law will only use his right side,he is so controlling and narsicist. Gotta say a prayer and push on threw, for many reasons. I am trying to make my days off for me, it's my life right now,both my parents have passed on, and I want to be here and do this, but it sure can be overwheling, but I know it's the right thing to do, so God bless all of you who care for someone at home, it's hard and things don't always go like you want them too. But gods got a plan and its meant to be as it is, so go with your heart and do your best, you will be rewarded, take time to relax and be thankful,don't forget to smile, give hugs and kisses!

Hi Snoopy... thanks for your response. Well I am staying strong on my decision as far as him coming home, but have changed my mind as to employment. I have decided after almost a year of looking for a position that I am moving forward with my online businesses. I called this morning and got my tax ID for my art site so that I can start selling prints of my artwork on it (I am already am selling prints of my artwork on my wholesale site) and I have an online wholesale site and am going to start working to get these moved forward. It may change if something happens to my honey, but otherwise will pursue this avenue.

As to my honey, we did not get good news today. They were unable to insert a pic line so that he could stay on IV's (not sure of reason at this point) and he has refused the idea of a mechanical heart so not sure where the doctors will go from here. I will be visiting my honey tomorrow and hopefully will get to talk to the doctors as they are not giving me much info. I am so sad and at wits end with worry, but know it is now up to my honey, the doctors and God. My honey knows that I am with him 100% (except for him coming home in his current condition).

I have not been posting as much lately as it has been a real rollercoaster. Just saying a lot of prayers, working on some paintings and trying to work on my businesses so that I can keep my sanity and health through all of this.

Dusti, it sounds like you are on the right track. As you say, stay strong!

Hi CTTN55, thank you for your reply (smile). No on the job, but I have had to work temp positions to support us as I was and am main support and could not take a permanent job as they would not make allowances for the time I would have to miss to take him to appointments etc. It was hard as it took a while for him to get Social Security disability. He has tried to help as much as he could.

Every time we talked about marriage something happened; either he would get sick, I would get sick or something else happened that prevented it. We decided marriage was not in the cards for us (not even common law) and that we would just stay together. We have never presented ourselves to anyone as husband and wife. Always as significant other. There will be no estate.

I have lowered the boom (as they say) on him and have advised him until he is self sufficient to where he can get up and down from the couch (etc.) and be able to make a sandwich and care for himself he cannot come home. He advised he will make the decisions concerning him and he may not go to rehab, but may come home. When he said he will come home when he pleases, I advised him that "no, he will not". He asked if I have control to make the decision on this and I advised yes I do (it is my home). I advised him that since he is not thinking of how things will affect me and our pups, I have to make decisions as to what is best for me and the pups. And I am not able to care for him at home his current status. I will stand by this decision. I am not deserting him as I do love him, but at the same time I have to protect myself from being in a 27/7 caregiver situation that I am not physically able to handle. I have decided that I am going to look for a full time temp or perm position. I have not been able to find one since my last temp position that ended July of last year. But I am also working to get my art business up and running so that I can work from home.

I have looked into caregivers in our area and there is just no way we could afford one even with what Medicare pays. So I don't know what the answer is except to stay strong on my decision and see what happens.

Dusti, I am curious...does your honey contribute to the household expenses. Does he have a good income coming in (pension?)? Did you have to quit a job to become his caregiver for the past 13 years? Why was there no marriage?

And, after all this caregiving, since you are not married, does he have an estate that he will be leaving to someone ELSE?

You have health problems, and I am, quite frankly, scared for you.

Hi Myownlife,
Thank you for your response and the "heads up". I have already done some soul searching and have already let my honey, the doctors and rehab know that I am not able to provide the heavy duty caregiving required by his condition due to my own physical and health issues. As much as I want to, I am smart enough to know this and his family is aware of it and they are in agreement. They are not able to care for him either as they are advance age as I am. Plus my honey is a major fall risk on top of everything.

I have been his caregiver, from the strokes he had, for the last 13 years. Unless he is self sufficient I cannot allow him to come home. IV's don't scare me but I spent 6 weeks as 24/7 caregiver when his edema hit and he had no mobility and had to have help on the simplest tasks as well as being pulled up from the bed, chairs and toilet. Due to this and the stress, I ended up having a TIA (minor stroke-my 12th; not including the two major strokes I had at age 29 and 31) and major back problems (I already had back problems prior to this and they were exacerbated to the point that I am on a cane now). My face has finally unfrozen enough that I can almost smile normally. I cannot take the chance of completely losing my health or my seizure disorder returning (dormant over 15 years but have been told it could return at any time) and getting down or we will all end up on the streets. I guess you could say I am in the self preservation mode.

He makes fun of my health concerns and my back. Everything is about him and his desire to come home. He wants to bring in a caregiver, buy new furniture as well as some other things but he has forgotten that there is one major question….How will we pay for it? And as I am not working it is going to be very difficult to make our bills as it is. His response is: Oh well someone just won’t get paid! I have worked very hard to keep my home and get where I am right now (not on the streets) and I am determined to not lose our water, electric and my home. Though I could survive on the streets, I am too old for that and I and our pups would end up there (trust me he would not) .

I will respect his wishes as to his decisions about his treatment, but I have the say so as to when and if he comes home. We are not married (not even common law) and this is my home and my body and I make the decisions that affect me and our pups.

Sorry for the book. We have a meeting with his cardiologist today to discuss options. I am standing firm as to the him coming home issue.

Dusti22, my brother was not eligible for a heart transplant so instead had the heart pump (LVAD). The night before he was to move from ICU to the step-down unit, he had a stroke and was initially quadriplegic, came out of it eventually, but never could walk well and lived an additional 2 years. There were constant trips back and forth to the hospital for him (2 hours from home) and my SIL over those 2 years and many, many difficult times along the way. Think long and hard about this kind of pump. There are steps to go through and psychological type evaluation to determine if there is the support (YOU) for 24/7. As I said, think long and hard about it.

Just kind of an addition to my post last night. I was very frustrated when I wrote it, which I think as caregiver's we all go through. I sat up almost all of last night soul searching and put the frustration and fear aside (yes, I am so afraid for him). I love my honey and though it will break my heart, if he decides not to have a heart pump and cannot get a transplant nor decides to have to live with an IV the rest of his life, I will abide by his wishes though I have medical POA. Our main bone of contention is him coming home as I am not able to have a 24/7 caregiver and really have no place for one to stay. Yes as I said it is my house, but it is so empty without him.

His doctor is coming in tomorrow evening and though I am not going up to see him today, I plan on getting there early to have a long serious talk with him prior to the doctor's arrival. Maybe this will ease some of his fear and put his mind to rest. I am still going to keep the "do not allow him to check himself out" in place but when it comes to procedures, I believe if that fear is taken away and he knows that I will stand by him no matter what he is mentally capable of making his own decisions about what procedures he will or will not allow. I hope he will understand that if he does not pursue any of the medical procedures he will not be able to come home as I will not physically be able to care for him. Though I can't afford a caregiver, I am looking into types of assistance for a caregiving. (hope that makes sense).

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.

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

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.

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.

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.

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. 

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

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.

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! :)

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.

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.

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.

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'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.

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!

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.

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

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

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.

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!

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.

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.