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

Dear Earlybird...
How are you doing? This is Bronish responding to your most beautiful post from July 2019.
I only visit this site occasionally because I'm still grieving the loss of my dear, sweet, angel of a mother...it's hard sometimes to come here...but I read amazing comments and stories such as yours, and take courage and even inspiration to reply to some. I'm praying for you....the caregiving is always a challenge, but the final outcome of caregiving is usually a major loss, which changes our orbit, and our lives are never the same after that.
I'm holding you in my prayers, Earlybird. Shalom. 💖🕊️💖

What happens to people (patients and caretakers alike) is horrible when something goes wrong. Some people's behavior becomes atrocious and unacceptable and the caretakers suffer in their daily lives and responsibilities. I stand firm - and say this. If you are able to do it and want to do it and it is not destroying your own life, fine. That is your choice. But if the demands and the behaviors and the impacts on your life and your family is starting to be destroyed, there is no law anywhere that says you have to continue to take it. You try to do all you can but sometimes you can't fix what is broken. Then you MUST BE STRONG and make arrangements to place these people in a facility. You have NO other choice - except to be destroyed and I don't think you really want that to happen.

Hello All!

I cope by carving out a bit of me time everyday. I get out and walk around the block. Today, I took a long nice hot bath vs. a quick shower. And when things get really tough I just try and count my blessings because believe it or not, there are blessing all around. I have a reasonable portion of my health and strength and I have support from family and friends. And most importantly, I found this forum and it has helped me in more ways than I could ever put into words.

Thanks to everyone here.

Depends how much money you have. if you’re doing self-pay, it is between $6-10,000 a month. if you’re doing Medicaid, that’s a different process. it took me nine-months and $30,000 of my money to get him into a Medicaid nursing home. his pension was too much for us to qualify for Medicaid, which meant that they took all of his pension to pay for the nursing home, leaving me with 0. due to emotional abuse from a CNA, I pulled him out 33-days later. I probably spent over 60-hours on the phone with Medicaid, and had to do 4 different applications between January and August of last year.//Medicare does not cover nursing homes or assisted-living for long-term care; only if someone broke their hip and they’re going to be in a nursing home recovering. if you’re looking to place somebody permanently, Medicare does not pay. They will cover hospice.//Having just had my knee replaced and at 63 and not having worked for 14-years, I personally did not want to go back to work full-time, but that’s what was required because they took his entire monthly pension to pay the Medicaid nursing home, which was 4000 a Month.//We can’t afford to self-pay for a lockdown memory care assisted living facility, which is what he needs.

I bought my husband (with Lewy Body Dementia and Parkinson’s) a lift chair. it confused him so much, instead of using it properly, he’s slid down To the foot rest, causing the chair to topple on top of him. I had to get rid of the chair.

Barely.

My dad passed away 6 months ago. My parents were married for 62 years. Since then, my mother’s health has declined rapidly and she needs around the clock care. I am blessed to have help with caregiving. I have some helpers that come in on week days and some help nights. Lately(because a caregiver has been unable to work at night because of illness- I have been working her nights along with my own.)I spend more nights with my mother than with my husband. I have such missed emotions- anger, guilt, exhaustion, love. I feel so guilty and selfish that I want more time with my husband. I know that I will miss my mother terribly when she passes, but I feel like everyone is going on with their lives and I am stuck. I am new to this site, but I already know that I am not alone in my feelings. I continue to pray for strength and know that God is there at ALL times.

I take one day at a time. There’s good/ bad days but knowing I’m doing my best in caring for my papi gets me through. I hold on to my Faith knowing it’s not forever and my life continues no matter what.

Medicare pays for most of these things (home equipment). If you get them on hospice, it's easy to get whatever you need.

I am so very sorry that all of the in home caretakers are so spent, it is such a difficult job, and will take one to their knees, over and over again.

Previously cared for my husband, I realized then and there I was not cut out for that job. I have placed my mother in Al, and my step-father and his wife in another one. Still takes up a lot of time, yet, I can just close the door and go home, turn off my phone and have a life.

Sending hugs and support to all.

Distraught. It’s as if 57+ years of family dysfunction came to a head this past week. I’m beyond burned out. I’m spent. There’s nothing left.

Frustration, exhaustion and a bit hopeless feeling as well. There is literally a crisis every week (this week it's been bad constipation and impacted stool. Had to scramble to find an NP that does house calls). Every home care agency in the area is in a staffing crisis, so I'm lucky to get one once a week for 2 hrs. No idea if I will ever be able to get away for a much needed dental visit or to get brakes done on the car.

I need someone to commiserate with. Hopeless is the word that comes to mind.

I struggle everyday. I struggled with depression even before I moved in with my parents.. We were getting along ok several years ago when I first started making regular trips home and began helping run errands and take them to the Dr.. But it has gone down hill because we have terrible relationship skills. My parents don't get along so that exacerbates the situation, I think about calling it quits every other day..

Hi, my name is Pamela, I live in hemet, CA. I appreciate your honesty. I'm caring for my abusive husband and have been for one year. I feel like I'm going to die it is horrible. I have no other family.
Thank you.

Im having a terrible time. I feel so alone, very depressed.

Sandalina, what is going on? Can you get your mom to the ER for treatment?

Not good, not good at all. Believe I’m at the end of my rope, for the last time.

sh*tty

i was in your place. It is hell on earth. I placed my mother in July. I one person could not watch her 24 hours a day. It was so hard. First step needs assessment. Second step sending messages to physician prior to appointment, of what you witness and live with , third step for me was her getting the Alzheimer’s diagnosis, the last step was getting her room in memory care ready and getting her to the facility. It wasn’t easy, but it was necessary. One person can’t do what three shifts of nursing can. They get to go home and have a life after an 8 hour shift. The person caring for or on duty for a person with Alzheimer’s, 24/7 with no help , can’t keep doing it. There’s no shame in doing what’s best for them and for you. Good luck

Dear Buckiiz....
Have you enlisted your mother with a decent hospice? A good hospice will come alongside and bring to you various equipment to assist your mom, and they will be a great support to you during these tough times. They can show you how to scoot her up higher in bed, and how to treat any bed sores that may be developing.
Perhaps your mother would take to a walker? I can't ice skate very well, but just get me one of those "ice walkers" and I'll out skate anyone! I know she's not trying to ice skate, but it was the only point I could make promoting a walker!

You are truly "under the gun", as it's said, and I will keep you in my prayers. These are tough days, some better, some worse than others, but the Lord can and will give to you strength, purpose, clarity, determination, patience, love, and, yes, even joy!
Philippians 4:13----I can do all things through Christ who strengthens me.
Turn to Him.... before it's too late, and trust Him to save your soul if you haven't already done so....and He will help you, guide you, strengthen you, and give to you peace and comfort during your storms, and He will see you through.
I couldn't have been able to care for my mother, or anyone if I didn't have Jesus as my Savior, helping me and guiding me along the way.
Im praying for you, Buckiiz! Love to you, and Shalom! 🌺🕊🌺

Several people here have commented about having to lift their loved ones and the strain it puts on them. IF you have not already done so, you need to equip the home with every possible assist you can. I've seen fully motorized Hill Rom hospital beds, lift chairs, hoyer lifts, etc. on Craigslist.

I am praying I never have to go through this with my own parents (who are in decline but still mobile).

My situation is the exact same. Mom is 98 with Alzheimer’s / Dementia and I have 4 cages in my back so lifting her is a definite no-no. I’ve been caring for her for over 7 years. I have got to find another way. I’m losing the ability to properly care for her.

I have those same feelings! I read your story and it mirrors my situation to a T !! It’s so difficult to be in this extremely stressful position, but I have no one to help and must keep plugging away. I long for the day when I can leave this house behind and take a nice long vacation far far away!

Thank you! I really needed this.

I’m going through the same thing. Not been on a get away in over 4 years and I’m about ready to explode! Wish I were there to give you a HUGE hug💕

My coping skills have gone down the drain and I feel as though I’m ready for a breakdown. Mom is 98 and refuses to use her walker. Believe me, I try to convince her to use it, but to no avail. The use of her legs are decreasing at an alarming rate and I just know she’s a terrible fall risk. Between the Alzheimer’s and dementia and her stubbornness, I’m at a loss as to what to do next. We haven’t been able to get away for over 4 years and it’s taking its toll on both my husband and myself...and I have no family to help out. So, how am I coping? Not well at all. My rope is quite frayed.

This site probably has articles on how to go about nursing homes.

In the mean time, can you find someone to come by while you go out a little?

Hug

Its refreshing to know I’m not alone as I read so many others dealing with the sane thing. When I was a child my mother said they had something called the “sitters club”- a grass roots local neighborhood group of mothers who had each others phone numbers and would babysit each others kids taking turns for no fee. We should have a group like this for caregivers to allow them some time off. I would suggest you take an hour or maybe 2 between your job and your mom and just go someplace (like a park, water front or he’ll even a parking lot if you had to!) and just sit in silence and close your eyes and meditate for an hour. I do a thing called yoga Nidra. It’s NOT yoga yoga but more like a fork of meditation where you clear your mind entirely and focus on nothing more than your breathing. It takes training and a little practice as your mind will wander but you can find some you tube videos for this. Anyhow the time to yourself will work wonders to help you balance your central nervous system and give you some peace. I am also looking into getting my mom some acupuncture and maybe even CBD capsules so she can sleep during the night. A common side affect of Alzhemiers is the inability to sleep and something called sundowner syndrome which causes anxiety and paranoia as soon as the sun sets. It’s a chemical hormone issue in the brain.