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

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).

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.

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.

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

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.

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 Becky... thank you for your post. I totally understand. It sounds like you have had been through some difficult times. It is good that you are now taking time for you. I have been a caregiver for 13 on a 24/7 basis for my honey. It is hard and overwhelming at times and I am finally learning, that at almost 67yo, that I have to set boundaries and put myself, my health and my sanity first or I will not be able to help him. This has frustrated my honey as I can no longer lift on him and had another TIA about two weeks ago. But it has to be this way. (Hope my post makes sense. Don't mean to ramble)

Take care and have a great weekend!

Hi Everyone,
Well it is a real rollercoaster ride right. They managed to put a line in my honey's arm, but it has to be changed every two weeks. He is furious with me as he has gone to a rehab facility and says I put him there. I am being totally left out of the loop though I have been with him for thirty years and have been his caregiver for the last 13 years. And he is still cussing me though I continue to try to help him. His brother and SIL has turned cool toward me so heaven only knows what he has told them. Oh well....s**t happens. I am too emotionally tired to worry about it. He has been in the rehab since last Friday and has been a jerk every time I have gone out to see him. He doesn't like the facility as they have hospice, assisted living and rehab residents all kind of mixed in together. He says he is afraid to ask for anything from the staff (I doubt this seriously as he always demands what he wants). I told him if there are any problems with the staff let me know and I will step in and take care of it. (No word as yet from him so apparently not having any problems). He is demanding to come home.... I have refused advising this is temporary until his surgery (he has decided to have the heart pump surgery) and that it is giving my back time to heal (I am doing my own rehab on my back to get it back into shape). I also told him that he needs to learn as much as possible from the therapists as it will help when he comes home after his surgery. When is the surgery? I have no idea...no one is telling me anything.

Saturday when I went out we had a real nice visit as I took him a couple of candy bars and some coke (soft drink). He ate one candy bar right away and after he ate started on the second. I reminded him about his diabetes and it went down hill from there with him say f*** you when I was helping him into bed at his request. I refused to tolerate it and left (this is the reason I was helping him into bed as I had to get home to feed our pups and it was already way past feeding time). I did not go out yesterday as I ate some sausage that I had in the fridge and apparently was past the "good" date (couldn't remember when I cooked it with everything going on) and I was sick as a dog. He couldn't have cared less and was angry that I wasn't coming out. Ughh. I laid down and called him after I got up. He finally asked how I was doing. When I told him I would come out tomorrow he said whatever. Haven't figured out if he has turned in to his Mom (God love her... I loved that woman but she could be sweet as pie one minute and the next be ready to fight you) or has just reverted to being a 5 year old. He mumbles a lot then gets mad when I cannot understand him. But I won't just agree with him since I cannot understand. Once you do he never forgets. So it keeps things interesting.

I am a little afraid that one of these days he will get physically violent and as I said should this happen that will be the end. But then I think he has never shown any tendency to physical violence, but then I have never seen this verbal meanness side of him either so I hope I can trust my instincts and just watch for any signs that it is headed that direction when he comes home.

I am going out to see him today so hopefully we will have a great visit. He is doing really well and is back to his weight that he was before the edema set in. He is getting up with minimal help, though it is difficult for him and is going to the bathroom on his own. I wish I had more money to have grab rails installed as they seem to be helping him. I know he wants to impress me, and I am impressed and have let him know (praised his progress).

Being home alone? Though I miss him it has been great. This is the first break from caregiving that I have had in 13 years. And I am finding myself again. (Amazing what even a little over two weeks can do). I am not the same person I was when he went into the hospital. I love him very much, but I did not know how beat down I was. His favorite saying has been for the last couple of years when I would state my opinion on something was "don't think... you don't do it very well". He never said that before a couple of years ago and always relied on my input. Should have known then something was wrong and his personality was changing. By the way our pups are so much more relaxed and are not jumping every time I move. I believe the yelling and tension has been very hard on them.

Well y'all have a wonderful Memorial Day! It is a time to reflect on all those who gave their lives to protect us and our freedom and a time to spend with our families.

"His favorite saying has been for the last couple of years when I would state my opinion on something was "don't think... you don't do it very well" "

Ugh. Dusti, I know you love him and have done your best as his partner all these years, but do you (and your dogs!) really want him back in YOUR home?

Hi SnoopyLove… to be totally honest I am not sure. He is already demanding that he is going to get a recliner and the couch is gone and today, though we had a really nice visit overall he got on the kick that he is going to get a riding lawn mower. This from a person who hasn't been able to drive a car in 13 years due to blank spots in his vision. Ughhh. A lot of it is the strokes as since he had them he gets on a subject and gets tunnel vision. (Have dealt with that for 13 years). I do not and repeat do not want a riding lawnmower. I do not want to have store the gas and oil (or premixed) in our garage. We have a person that comes out and does our lawn. Our lawn care guy is not always perfect but does what I ask him to do.

Other than making faces, or mumbling under his breath, when I said or did something that did not meet his expectations he was not vicious today. The only way this happened was I did not challenge him on anything if I did not like what was said nor did I express my opinion. I didn't agree with him...I just kept quiet. This was the cowards way out and against my nature. I am known for speaking my mind.

So do I want him back in my home and our life? Again being honest I just don't know. I will not walk on egg shells any more. He is starting to push about coming home before his surgery and I am not giving an inch. I need this time to get my back and my nerves healed and reinforce my resolve. I hate to fight, but then again I don't normally back down from much. I do love him, but I have to determine if it is worth it. Since he has been in the hospital and rehab the puppies and I have been so relaxed and I have nearly quit having chest pain. And no more TIA's either... Wahoo!

It is hard work most of the time, sometimes days being a 24/7 caregiver are are little challenging than others. however, with us the satisfaction of knowing that our mother and grandmother is cared for leaves us content and without a doubt that they are covered and cared while we are at work, running errands ect, the main thing is to be able to balance both caregiving and manage your own life as well, plus don’t allow loose ends or put off anything, take care of any and all tasks as they are presented, then nothing to come back to bite you later when you’ve move on to other things. We found it to work for us and our loved one. from experience, it keep our stress levels down.

Reading you guys response has me in tears, honestly! I can truely relate!

You sound just like me. I have no life none but yet I can't not be here for my mom. It's a no win solution. I lost my husband to cancer and immediately went into my mom's house to care for her. I just want some me time. Just a little me time.

Cheryl

Hi Hyonlyf and Shop!

Hyonlyf…. I agree and that has been my problem due to my health as well. I put everything on hold while caring for my honey since Feb of this year. Prior to Nov last year we addressed everything together. Now I think that I have got things prioritized. (smile). I know my honey is well cared for in the rehab facility that he is in. Today I scheduled the plumber, washer repair and mobile vet to come out. Ugh... have been putting this off due to everything going on with my honey. But my "fur babies" can't wait as their shots are due and I can't take them to their regular vet by myself (one is 106lbs; the other is 76lbs.) so having mobile vet out (ugh...double what it would be at our regular vet). As to plumber... city will get us for leaky faucet and if not my water bill will get me. Anyway, I have made myself a priority and am finally getting back on track and getting my confidence back. I guess you could say I am finding my inner peace and getting organized since my honey went into the hospital. Right now I am not feeling near the stress that I was before.

Shop... I know what you mean. This site has been a lifesaver for me. When I first discovered this site I was ready to run down the street screaming. Reading the threads, responses and the responses to my posts has had me in tears but it has helped me so much. At least now I know there are others who are going through the trials and tribulations of caregiving. Everyone is so wonderful here and it is so good that I don't have to face this alone as I have for the last 13 years. (Daughter in MD- I am in TX; Brother and I don't talk that often. My honey's family has backed off so I virtually have no one I can talk to). I am learning from everyone's threads and all the responses and it has helped so much.


Everyone... have a great day and week!!

By the way...sorry everyone. I just realized how much I have posted. Didn't mean to take over the thread (sheepish grin). (Darn I miss my smileys)

Hi cajohnston..

My heart breaks for you losing your husband. That alone is devastating. How long have you been caring for your mother? I understand where you are coming from. I was the same way with being sole caregiver for 13 years taking care of my honey. Looking back on it I lost myself somewhere. You have to find a way to eek out some "me" time. If you are not able to get a full time caregiver to come in to help you, can you go through Medicare to get their intermittent caregiver so that it will give you time that you can relax, unwind and find yourself again? I have learned the hard way that if you don't take some time for yourself you burn out and it can affect you physically and emotionally.

Please take care and hang in there. My thoughts and prayers are with you.

Dusti - your situation reminds me of my dad and stepmom. She endured hell trying to take care of my dad when he became mean. Don't let him home - visit him and leave when he gets mean. Otherwise - you will never get away. His dementia, strokes have changed his personality - which he cannot help. That being said - you don't deserve to be abused - and that is what it is. Place him somewhere and continue to be a loving wife. You do not have to take him home.

Dusti, I agree with Kimber166 above. No one has to endure verbal abuse.

Hi Kimber and Snoopy.

Kimber... I am seriously thinking about not letting him come home. Know I won't before his surgery. The hardest part is that we are not married (not even common law). Though right about now I am glad though I do love him still. I have medical and full power of attorney, but cannot get his doctors to even respond to me. ( First time in 13 years...don't know if his cardiologist was on vacation for the holiday) I am hoping my honey is getting the message as I leave when he starts in. He told me what irritates him is that I am too nice and it does not take much to make me happy! We had a nice visit yesterday but when he said all he wants is to come home before the surgery to see his pups, spend some time and argue with me. I raised an eyebrow at him and told him that I can't figure out why after 30 years all he wants to do is demand and argue with me. He said wait a minute he was just joking but I don't think so. Oh well. Anyway it was time for me to head home to feed the pups.

Seriously, I know I am all over the place as to what I am going to do as far as him coming home. I am bound and determined that it is not happening prior to his surgery. After 13 years of being his caregiver for his strokes and now this, I need the time for my back to heal and to finish getting my head together. I know once he comes home he is going to be arguing about getting a riding lawn mower (he hasn't driven a car in 13 years) and about getting a recliner and throwing out the old couch (wonder where the money is going to come from for either). Ugh...

Snoopy, I totally agree with both. I am thinking about getting with a battered woman's group as well. His problems are from the strokes (thus the tunnel vision) and the fear though I am wondering if something else is going on as well to cause the sudden change in his personality. Maybe it was there all along...he just didn't show it before. Oh the mysteries of life. (smile)

Y'all have a great day.

I cope as best I can honestly, sometimes it is impossible sometimes it is ok. I cry almost every night before I sleep. I barely sleep anymore. I love my family, I would die for them nevermind take care of them. It is definitely very lonely...especially when other people your age are out traveling, falling in love, furthering their careers...and you're stuck in this dark hole and not getting out. That's what it sometimes/often feels like...It helps to have resources like this website.

Hi Ashleyb...hang in there. Based on your post "Dealing with mental health of my parent - Any advice?" You and I are going through the same thing except that it is my honey. Honestly I am not sure what the answer is since he refuses to cooperate as my honey does, except do not forget about yourself. Have you talked to your doctor about the situation? Your doctor, or his, might be able to give you some suggestions. I finally got my honey to go to rehab, when he was released from the hospital, by refusing to allow him to come home until he had. Everyone here has really helped me with their suggestions and help.

I just found out my honey will be coming home after rehab and it will be awhile before the surgery is addressed. I immediately went into a panic attack..... ugh. But I will deal with it when the time comes as I have had enough time away from him and the situation to where I will not tolerate any b.s from him (ooops ...sorry). The rehab and the doctor will determine when he is able to come home.

Don't give up... there is light at the end of the tunnel. If your Dad is on Medicare see if you can get his doctor to request a caregiver come in to give you some relief. This way you will have time to have some "you" time. This way you can recharge and not feel so stuck.

Please take care and let us know how you are doing and what is happening. Not being nosey...just care.

I feel as if I am wishy washy. Some days I think care in my home would be best, and other days a NH would be best. I'm feeling more and more angry every day, but of course, the husband doesn't see this. There is so much he needs to do for his mom and, unfortunately, I can't do it for him. I can and have told him what he needs to do, along with our daughter, but he will have to be the one to do it!, whether my mil stays here or goes to a facility.

Since I am pretty much housebound with Dad and my 18 year old Maltese rescue dog who is blind, I created a butterfly garden and bird sanctuary. This and my wonderful TV system have been a true source of joy. The little girl down the street who used to visit but hasn't recently was one of the few loving him and contacts I had in my life. I really miss her.

I don’t really know where to start, I’m a 55 yr old gay son taking care of my 82 yr old mother 24/7, I have my own business, have 20 rental properties in which 18 are vacant now from my neglect to rent em, I’ve asked my sister to keep mom 5 days a month, she has made all kinds of excuses, my two brothers are dope heads, I think I’m going crazy with my life in a total nightmare,
I’m going to check with a local geriatric counselor, I’m at end of the rope, I’ve even considered suicide, I really don’t think I can do this much longer
HELP !!!

DRS, I'm sorry you are stressed. It's hard being a 24/7 caregiver, and even harder when siblings are jerks.

A geriatric counselor is a good idea, and you might talk to a counselor for you as well. My therapist has helped tremendously navigating the major changes that we've gone through with mom, and helped me cope.

Your area agency on aging and social services departments can help you with figuring out what resources your mom might qualify for, including possibly respite care, or adult day care, both of which would provide you some relief.

Is there any way your mom could move to Assisted Living? Would that be feasible? I finally had to find a place for my mom because I too was getting burned out and overwhelmed trying to do it all.

Please don't do anything to hurt yourself. People on this forum are here for you anytime you need to vent or get advice. This site has helped me so much. Please know you are not alone. Hugs to you.

DRS, please do what Frazzled suggests and start looking into getting some sort of help. Worst case scenario call your doctor or ER or any other emergency medical service and advise them about the understandable desperation you are feeling. Take the next step toward getting help, even a small one. Then you will start building some momentum toward a life that's more sustainable and bearable. I'm sorry you are so overburdened and that your family doesn't help.

DRS, hang in there and keep us posted! Thinking of you.

Yeah, I get that all the time --says he's fine on his own. We have no kids--wouldn't put them in the middle if I did. Has anyone found a divorce to be an option that protects them from losing the ability to care for themselves. I feel I'm in a no win situation for anyone.

DRS... I agree with Frazzled and Snoopy. Counseling for both and seeing what options are available for the care of your mother. You do say that the care is 24/7, what kind of issues does your Mom have? If she is able to get around on her own..if so possibly an assisted living facility, if she require more care (depending on the level needed) a skilled nursing facility or nursing home? It sounds like you are running on determination and have a major case of burn out. Hang in there, there has to be a way. A geriatric counselor, or social worker that deals with geriatrics may have access to different resources that can help. A counselor for you may be able to help ease some of the stress.

Please don't stop posting here as well. There are a bunch of wonderful people here on this site/forum. When I first joined I was about to run down the street screaming. Everyone here helped me more than they will ever know. My situation is not any easier but I am now able to cope with it and set boundaries so it is much better than it was. Please don't consider suicide...in the darkness of the moment there is a light that shines through. Suicide is not worth it...you are young (I am almost 67) and have a long life ahead of you. Please hang in there.