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

DRS, I'm so glad you are making some calls tomorrow about your mom's care. Yay! Yes, let's get a plan going for you to get back on an even keel. To start getting some psychological breathing room. Thanks for checking in and keep us posted.

DRS...You do not need to apologize. You are in hard situation. You know your Mom better than anyone, but my honey told me the same thing especially about his doctors. I looked him straight in the eye and told him flat if he wanted my help then I need to know what is going on period....and yes I will talk to the doctors about your condition, the situation and the best way to proceed. This is necessary in order for me to help you. He is still speaking to me though he didn't for about a day. Trust me you are not alone. You need to talk to your priest, a psychologist/psychiatrist or counselor as they may have some resources that can help both you and your Mom. Please don't stop posting or venting here. There are a bunch of wonderful people on this forum... they have really put up with a lot from me in a short time.

Your Mom's fall risk alone means that she needs to have professional care and if possible go through rehab to help with her strength, balance and to assess her true fall risk as well as the her mental and physical status. From there it can be determined what the next steps need to be.

Don't give up. Please don't try to deal with this alone. My thoughts and prayers are with you.

Hello to everyone, for your encouraging messages, hope you all are doing well, I’m going to make some calls tomorrow, geriatric manager, dusty had asked what shape my mom is in? She can get around somewhat with a cane, I live in a home with 3 different levels, I know it’s a waiting catastrophe every time I hear her getting outta her recliner, she has fallen 8 or nine times here at home within the last year, took her to get hair done, feel broke her wrist, two weeks later fell in her living room, broke her back, taken her to emergency twice with other falls, I thought she had an concusion couple of times, she didn’t though,
I’ve tried to say I was going to talk to her doctor and our priest, she said if I talked to them, would never speak to me again. if I die of a heart attack or another way, she will have to go to assisted or independent senior living, she can’t live alone, I gotta do something soon as I cannot keep doing this, I’m mentally, sychologically, mentally, physically drained, it’s like she doesn’t care, I think if I died of heart attack, suicide or something she would just figure, I’ve been on depression meds and have my own stressful business and blame it on that, I really don’t think she would care that much except how this would effect her, she has always been difficult to deal with, she never has had friends, never liked any of mine, it’s just very very hard to take care of her when I’m so full of resentment, anger, frustration and rage of what she’s putting me through, I guess from reading some post, I’m not alone in this nightmare, I really feel the others going through this, anyway, I could go on and on, I’ve always been in general a contented guy, easy going, never meet a stranger, pretty outgoing, this has made me think about life in a whole other way, really sick of this crap,
I will pray for you all and please do the same for me,
sorry for the ranting, I just want my life back, this BS is killing me

Oldcodger2
Thank you for being so open about your feelings and what you have been through. I gives me courage and faith in how I feel about my own situation. For 8 years I have cared for with love and encouragement and all the help I can possibly give. I have spent countless hours and days/years researching to find answers for the needs of my husband. I have done all the heavy lifting literally and figuratively and I will not give up what years I have left to a futile endeavor. I have abhored the idea of his being left to a NH in what it could imply, but I am out of resources and will not be left with nothing to live on. Thank you for your courage to stand up for your life. Your life matters just as much as your MIL.

After 6 years of taking care of mom with dementia 24/7; I’m done. She has mentally of a 2 year old and is moving to nursing home. I regret doing this. Beyond stress. I would never do it again and I was a CNA for 10 years before caring for mom

I am a lawyer, formerly from Chicago and now in Colorado with my wife who suffered VERY serious strokes from open heart surgery at age 83. Horrible dementia and lack of balance.

I too appreciate very much the honesty and sharing of all contributions here. It has helped ME VERY much to read of your reactions, stress and the like and as others have said that I am NOT alone. Without your contributions to these discussions, Lord knows if I would even be alive today.

I would like to add a new component to these discussions and that is the failures and
bad conduct of Assisted Living and Memory Care Facilities. I presently live in the facility my wife got into, to see for myself if they were performing up to the reasonable standards I felt necessary and I regret their failure to perform, especially when I am told over and over again that they are in NO WAY responsible when afflicted persons under their roof fall and end up with broken bones and emergency calls made to 911!! My concern has grown worse since my repeated efforts to just TALK about such situations falls on deaf ears to the point that the UNNAMED facility we are living in has demanded we MUST and WILL MOVE
as I am disruptive!

Please keep up these discussions as it is impossible to enough the necessary "thank yous" and appreciation of such heart felt sharing by you all.

By the way, I am a FIRM believer in the GOLDEN RULE and my MARRIAGE VOWS!!

Hi Clembo and Everyone… I want to apologize ahead of time as I am going to travel down memory lane for a few. I understand how you feel Clembo. I lost my Dad in 1986 and I did not get to grieve for him as I was also caregiver to my Mom and had to stay strong for her. My Mom passed away in 1991, my honey and I were together and my brother had taken over as caregiver to my Mom just before my honey and I got together. My honey was there with me and my Mom and I said our goodbyes (had the nurses in tears) just a few hours before she passed away. I lost it and I don't think I could have made it if not for my honey, my brother and the doctor. I don't remember much after she passed away except going to work, being at home and just moving through each day. Luckily my honey understood and was totally supportive. The pain dulled as time went by and now I look back on the good times that Mom, Dad, my brother and I had and I smile.

I have no fear of dying (not looking to do it for a long time, but have no fear of it). When my honey and I first got together, I was working security and walked into a cloud of poison as the cleaning crew had spilled hydrochloric acid on the carpet. By the time I got back down to the desk and called the dispatcher I was having trouble breathing, by the time my honey arrived (he was my supervisor) I remember unlocking the door and falling into his arms. The EMS worked on me for 45 minutes in front of the building and lost me three times. So I guess that is why I have no fear of crossing over. I felt totally at peace. I totally believe it was not my time and the Good Lord had something planned for me that I needed to do. And somehow I feel there is more that I need to accomplish. But I came back all three times. I do agree life is worth living and is very, very precious.

Clembo, please stay in touch and let us know how you are doing. I plan on being around a long time to add my "two cents" (sometimes 3 ...smile) in and hope to see you here.

I agree about the wonderful people here on this forum. I often find "great insight" which I would never receive from my friends and family. Some people shoot straight to what will happen financially, now that's a real choker. Not, how are you doing or what's the prognosis for Him/Her at this time.
What a way to check in. I did this with my Mom for nearly a decade and the money issue came up so often that near her end of life, I stopped letting people bother us. WE had great discussions, great moments where we freed or rather she freed me up from past resentments and I tried to help her not be so afraid of dying. I actually asked my Mom one day, "what are you afraid of"....I had been on a spiritual high at the time with the God of my understanding. She said to me, I am still mad at your Dad. Dad had died in 1994 with a huge funeral at a young age. She held a resentment with him and I helped her in this way. I said, "mom why don't you slap him in the face when you see him , and then fall into his arms and just dance". (My Dad was a GREAT dancer and Mom also). She smiled. My Mom passed only a few months later, and my son was there as well as some family and friends. Unusual Palm Sunday when so many were around. My son told me she saw a man on the balcony. I guess, or rather I hope it was Dad....or some spiritual form coming to cross her over.
My friend is getting better as we get further from the toxins and I have hope again. I hope it's not false hope. I understand what the palliative care is saying and I want to be there for him as much as I can. Money is an issue, I so wish it wasn't. But at least no one is fighting about anything , not yet, and I can be the REAL loving woman he met and fell in love with 14 years ago.
It is hard. It is never easy. I don't know how people make it through, but we do. I screamed as I said before and it echoed down the entire canal waterway the day my Mom passed away.
I pray I don't have to do that again. I am hoping for peace. Here. It's hard.....it's just hard.
I am thinking of the book The Road Less Travelled and the beginning lines...."life is difficult, but worth living".
God bless all in case i don't check in for awhile.

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.

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, 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.

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.

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 !!!

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 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.

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 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 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.

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

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.

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.

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 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!!

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

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

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.

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!

"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 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.

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!