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

Hello,
I have been a stay at home caregiver to my mom for the past 8 years. She has lived with my husband and I for 21 years. We moved her here when my dad passed at 60. She is 85 now and our children are grown. My husband and I just celebrated our 36th anniversary.
For us, it has had a few challenges through the years, but no more than we expected. We realize we are blessed to still have her in life! We all get along very well. I feel it is due to respect for the fact she is the mom, I know not to take that for granted. If we had to do anything over again, we would do it exactly the same way. I am so blessed and proud to be able to learn from her wisdom. As she is getting older, She is getting crabby! Lol. I have to gently make a funny out of her negativity so she can laugh and change her attitude.
I think the hardest thing to deal with is watching the changes that age is handing her. Having to use a walker, and some days the wheelchair. We just had ramps built a month ago to make it easier to take her out. We do play board games, she has her computer, ( she is addicted to face book ) she plays games on her computer.
We have movie day, we have "out and about" day. I keep her moving mentally and physically.
It's hard watching her age, but I'm so honored to help her through it and make it as comfy as I can. ...she raised me, this is the least I can do.
However; this will not work for everyone like it has for us.
I wish everyone could look at caregiving someone they love, the same way we do. I wish everyone luck and love! Hugs to you lastone!

Georgia1985 I have come to learn it takes courage and strength to be vulnerable. Asking for help is far from failure. It is human. The caregiver’s life a roller coaster in this beautiful mess called Life. We do our best and let God do the rest. Always amazed at how being heard makes the world a little smaller and our troubles lighter. We are not alone.

I am also seeing a psychiatrist and a counselor after taking care of my beloved mother for 2 years and 9 months, leaving my job. I was the only one of the 3 other siblings that would help. I started seeing the Drs and counselors when this started in March 2015. I’m still trying to take care of her condo belongings and am always overwhelmed and anxious. My mother passed in December 2017 and my grief is tearing me up. I keep asking my mother to only come back for one day and cry all the time. I haven’t cared for myself and physically need a lot of surgeries done after this ordeal. Bunions flared up and I need surgery on both feet with arthritis also so they have to put a plate and screws in both big toes. My right shoulder has a tear in a tendon going into my shoulder and I got a steroid shot but the Dr said eventually I will need surgery to repair this and then added it had something to do with the rotator cuff also. I have osteoarthritis now and don’t know if it’s related to doing everything I had to do because nobody helped. Lifting things I never thought I could lift. Up and down stairs 20 times a day. My lower back I had already had problems with from a fracture in a lower disc and my back has gotten much worse. My blood pressure is all over the board and it was always on the low end my whole life. I am 63 now but I don’t believe all of this can be from my age. I don’t have time for me. All I think about is everything still to get done. I need help desperately but don’t know where to turn. I also need to find a pro bono attorney for things now my siblings are doing to me. Can’t find one. They all want me to pay fees.

Hi Georgia....Welcome. I am fairly new to this forum as well having been a member only a few months. There are a wonderful bunch of caring people here.

You have your hands full! So glad you were able to find some help. Don't feel guilty or like a failure for doing this. Trust me if I could I would and I only care for my honey. 

Please continue to make time for your DH, family and friends but don't forget to include yourself in there even if it is only a few minutes to do something you enjoy. That is critical. I have, and am, leaning that myself. If you don't take care of yourself, you cannot take care of anyone else including you. 

Please take care and feel free to vent and/or ask for advice any time. This forum has been, and still is, a lifesaver for me. Have a great night and weekend!

Well, this is my first time in the forum. I have been struggling emotionally lately so I am trying to connect with people who have the same issues of caregiving. I retired two years ago after my father became ill due to complications with his gallbladder. My parents were the caregiver for my intellectually disabled sister and so I assumed responsibility for her as well as both of them. After two years the wear is starting to show. My husband works full time, but often comes home to not just elderly in-laws but an ill-tempered wife! He is a trooper and I am working on myself. Listening to this is great for me because I was beginning to feel alone. Just two weeks ago I hired a niece to help me out 4 days a week while she is between jobs. It has helped tremendously but I felt like a failure for needing help myself, However, my mental health and stress is showing some improvement. I had tried using a local agency but since I have three people in the house I needed three sitters and I could not afford that. I guess we all do just have to hang in there. But this did remind me that I need to find balance to live daily and not neglect my time with my husband or friends/family. Thanks to all for being so candid!

CrazyMamaBear ..... First of all, Happy Birthday!!! My husband died when my 2 youngest were at home. They were 15 and 17. He had cancer and a hemorrhagic stroke at the end. Trust your kids to leave Dad with for awhile. My kids helped so much with my husband/their dad. I could not have made it without them. I worked full-time and supported the family so couldn't quit, and without the teen-aged "kids" and our 22-yr. old, could never have kept him at home.

And as far as him not feeling well enough to go out, I would call his bluff. My NPD mom did that tonight. I called in plenty of time for her to change and get ready to go out for a bite to eat, and when I got home, she's finishing up, and started up with"I'm not feeling so well today". I ignored (because she does this often) and said Let's go. We did, met the daughter and her boyfriend and had a nice dinner out.

Came home.... she comes to my door a few minutes later to say she wants to make sure I get all of her paperwork together before I go on a vacation in 2 days. I said "Ma! I am only going for a week... everything will be fine." Wonder what else she will pull before I leave in 2 days :). She will be fine ... same teenage daughter who helped tremendously with her dad is now 35 and will be watching over Mom, so I know all will be well.

Hang in there, MamaBear.... but GET HELP for your situation and take time out for yourself. You are NOT a slave; you are a person. Go out by yourself with someone trustworthy in place and "zone out" for awhile.

CrazyMamaBear, is there respite care available for you. I understand people throw that word around like it’s a quick fix and easy to do. Sometimes resources and solutions are in short supply. Asking if you have an out on occasion. Even a short walk around the block may help. Sending you and all on this thread lots of love and prayers.

CrazyMamaBear… I have found being 24/7 caregiver that caregiving is a love/hate relationship on the part of the caregiver (possibly on the side of the other person though I cannot say for sure). I have loved my honey for 30 years, but there are times I definitely do not like him and are bordering on hating what being caregiving has done to me though I never felt this way until after Feb even though I have been his caregiver for over 13 years.

It has to be hard for you when you have two teen son's. I don't have children at home so I can only guess at hard it would be to be in your position. Please hang in there and please keep us posted how you are doing.

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.

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.

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.

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.

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.

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.

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

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

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

RainbowSister: You are a great wordsmith! Superb!😅

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!

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.

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

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.

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

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.

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

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

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!"

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.

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.

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