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

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.

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 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!!

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

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.

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

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.

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.

Some days I feel useless and not worth a crap and emotionally and physically run down

Val1313: I can tell you with complete certainty that are you are doing a great job. You are most definitely worn out. No one caregiver can do it without the help of going to our Lord and Saviour in times of need. You will prevail, because HE has got you in the palm of his hand, always! Best wishes!
 Love,  Llamalover47.

Today, I'm not doing well with coping. I'm in a depressed state and don't see any way I am going to be able to see a good outcome. I've been caring for my husband over 8 years. At first it was trying to support him emotionally and trying to understand how he felt about losing his job at 61yrs. old. He had a mental breakdown 1 and half years later. Prescribed drugs didn't help. Crisis #1. Tried to continue to support him, but he couldn't/wouldn't do for himself. Trust me psychiatric drugs are a scourge on society. I learned A LOT. 2 yrs. later through a trial of withdrawal, back in the hospital. Crisis #2. Found a psychiatrist that tests for MANY biological/biochemical imbalances that cause depression/anxiety and prescribed vitamin/mineral supplements and other supporting foods, and lifestyle changes. These things can and do make huge changes for some people; my husband is not someone who believed in it--that's a huge component. He has dementia now and a neurologist diagnosis is forthcoming. It's been a huge struggle throughout.

I share all of this because I do believe that what happens to the brain after years of not taking lifestyle choices into account can have a negative effect as we age. We can't predict outcomes to our lives--some people abuse themselves for most of their lives and age "gracefully". Our environment is so toxic now it is imperative that people pay attention to not only their own choices, but to all the assaults that humans are being subjected to. Anybody reading this, if you have children or grandchildren, urge them to find the truth about what makes for good health. Turn off the TV and find healthy relationships. Open up and talk. Express yourself, no matter what it sounds like. Do it.

Health2018, so sorry you are going through this. I agree with you completely about the importance of lifestyle and doing what we can to protect our own and other people's health so that we can age well. I feel this is no longer a fringe, quirky sort of health nut thing, but should be mainstream, normal. As the saying goes, "Health is wealth!"

Wow, Jessie Belle, sounds just like my life! Thank you.

I think we'll have to get respite for her or something with necessary doings, ie., family reunion and weddings, etc.

The other day I wrote about my husband's struggle with depression and psychiatric drug prescribing. Up until yesterday he has been treated by drs. as a psych patient. He now has dementia. Yesterday, after neurological testing and having gone over his and family history, dr. believes he has a form of dementia that was misdiagnosed from the beginning. Talk about wasted time and life. He's on a drug he can't get off of and dementia will progress. One positive thing is that I now understand he really has no control over his behavior, perceptions et.al. It's gonna be hard as hell, but hopefully I can overlook some of his strange behavior now that I know why. Got to work on taking care of myself a little better by getting more help--god knows where from. I'm grateful for this site so I at least have an outlet for venting. Bless each and every one of you with your own daily struggles. We want to care for those we love, but as someone else said: they're on the way out. We want to have some life. We DESERVE it.

health: So sorry to hear of your difficulties. It's not easy. Sending you big hugs ((( ))).

How am I doing?. Sometimes I wonder caring for 87yr old mother with dementing illness kidney failure for the 7yrs 24/7. I wonder where I find the strength. Also dealing with my health issue. of seizures, COPD.i wonder how I'm doing.

only: You WILL get through this even though now you may not be able to see "the light at the end of the tunnel." I pray for your health as well.

Love,
Llamalover47

One day at a time, or hour, or minute seems to be the best for 24/7 caregiving adventure. I love that our home is now Mom’s home. I believe it is a privilege to care for her, and she has told us how much she enjoys being close to her family. Some days are better than others, no doubt. Sundowning and sleep deprivation are no picnic for any of us. I thought my all nighters were long over when my child began sleeping through the night, years ago. I thought I would be free for part 3 of my life, complete with college degree and a new career, and enjoy watching my young adult daughter as she embarked on college followed by her own exciting career. We had plans of travel, some of which included my folks, sister, brother and his wife and son. The plan went as far as 1 month of college for DD and I. My sister was diagnosed with terminal inoperable cancer, and given 1-8 weeks to live. I was ready to quit school to care for her full time, and find a cure, if one existed. She was not having it, and made me promise I would finish college, and that DD did the same. My sis passed 21 weeks after her diagnosis. During that time, she and I realized something was very wrong with Dad. I promised her I would take care of him. She was always Daddy’s girl. Even on her death bed, as she reached her hand out to him, he didn’t know it was his oldest daughter who was actively dying before his eyes. It’s 4 years in to this unplanned life detour. I became caregiver to my sister and both of our parents at once. We didn’t realize at the time, something was also very wrong with Mom, as well. Our folks always had a crazy relationship, so we thought it was more intense due to aging. Turns out dementia had taken hold of both their minds. Dad was further along in the disease, he died 15 months ago. Our home became Mom’s home soon after. I have run the gamet of perspectives as caregiver. None are easy, and all require more of myself than I knew I had. Parenting is a cake walk, comparatively, in my humble opinion. Caring for a loved one who is actively dying, especially one so young, takes a toll. Caring for multiple loved ones who are dying is beyond words. To say 2 down and one to go brings no comfort. Knowing two are at peace together is something; they are no longer in agony. Taking the long way around to answer the question, how do I cope with 24/7 caregiving. I try to find the joy in each day. I try to genuinely help Mom find it, too. I see my life as a blessing, and pray for it to be realized as such by Mom, my spouse, daughter, and my patients. I realize I am human as the next, and ask for renewed strength, wisdom, and peace daily. I pray my hands and words are healing and bring solace for those tossed about a storm they did not set sail for, but rather rolled in abruptly to their life without warning. I seek grace and give grace. I take my share of deep breathes daily. I guide those I care for to do the same. I hold my loved ones close, give hugs, receive hugs, and tell them often I love them. I know tomorrow, or our next breath is not promised to any of us mortals, and to everything under the sun, moon, and stars, there is a season. I ask with the realization, the answer may be ‘“No.” My ways are not as high as The Creator’s, in whom I place my trust. Ultimately, I do and the how is left to Listening and following One who knows beginning to end. There are days I have not been able to rise from bed. There have been days I willed my feet to move. There have been days that help came when it was needed, more than I knew. I have learned we make plans and God laughs, however, it is not a mocking laughter, rather one of loving expectation. Day by day, one mistake, one triumph at a time, I travel this path filled with great love, and therefore, great pain and grief. What an adventure, what a journey it is for those of us who dare tread upon this trail both known and unknown. Many blessings to us all, and to those entrusted to us to care for. May we be given that which is required for each step of the way home.

RainbowSister, Beautifully Written! May you find the strength and the courage to continue meet each and every day, with the same Kindness, Compassion, Generosity and Courage! Hugs!

RainbowSister: You are a great wordsmith! Superb!😅

What a beautiful post....and beautiful attitude! You give me strength. God blesss you.

Health,
I totally agree with you but it seems so difficult to stay informed with health issues especially when themes come and go so quickly!
There’s a doc on the internet sez no soy products! There’s a lot of ppl not going to believe that!
I find I can only absorb one topic at a time to get fully immersed and try to understand. Right now it’s “high fructose corn syrup” and it’s very unsettling be cause it’s in every darn label on my shelf that I look at! It can’t possibly be so bad if it is this widely used can it??
I’ll keep searching...
Charlotte

Not well. I pray for death daily. And I dissociate.

I have come to the point that I realize I HAVE to leave my Mom with paid caregivers sometimes, and that is OK. When I heard she had a meltdown 90 min after I left her, after being with her for 12 hours, I realized something freeing - given that she doesn't remember how much time I AM with her, it actually means that I can take time away, and she WILL NEVER KNOW THE DIFFERENCE.

I also need to make sure I get enough sleep - as when I am overtired, it all is so much harder.

But I am not doing 24/7 care in my home, so I can only imagine how much harder that must be....

Sending you all the peace and patience.

i agree with you guys. this forum has gotten me through so much. i feel the love and support from you all. i am not alone and all of us are doing the best we can. it makes feel grateful because everyone has something they are dealing with. i am holding on to the appreciation my fil gives me when he introduces me at the coffee shop. i am trying to put myself in their shoes too. but you all are helping me put up some boundaries. everyone take care of yourself.

Broken, I have been haunted by your reply as well as terribly moved by all others. I am not 24/7 but only relative near. I am an only child. I find at times I am afraid of death and afraid of a life for my mother with no quality. Have 2 major diagnosis this week for her. I wish all of you the ability to not collapse. It is such a heavy road.

Sleep deprivation and food deprivation. Otherwise, I am dealing with a lot of things that are beyond what I ever thought I would experience. End of life really doesn't have any dignity. I just live with the hope of having a future life.

CharK: Yes, we are inundated with "new health remedies on a daily basis"--tv, the internet, social media, et al. IMHO, we must sometimes "take each new product with a grain of salt." Some are not all that they are cracked up to be.

Im not coping right now. Im caring for my hubby for 5 years now after strokes. Today is my birthday and I hate him. He waited until i was all dressed up to go out before springing it on me that he was not feeling well enough to go, so we can't go out. Im so angry that i want a divorce since care is one sided! I comfort him all the time and get none in return. Im afraid to leave him since we have 2 teen son's. I don't want hubby to be a ward of the state, which seems to be what will happen when I leave him.