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

I feel Iike my life will never begin. My husband and I have put off travel because I can’t rely on anyone to take care of my mother (96). This last year has even gotten worse, mom can’t put any weight on her leg so I need to lift her from chair to wheelchair to toilet and reverse. I’m no spring chicken and mom is 145 lbs. of dead weight. Mom always says she doesn’t know what she would do without me. My sister is no help and would put her in a home but I just can’t do that to mom. I’ve called the local Center for Aging and they say mom has too much in the bank to qualify for in-home help. I’ve bought everything I can think of to help me take care of my mother. I’m seriously thinking my mother will outlive me. I work full time, luckily teleworking so I can help mom as she needs it. She’s satisfied to sit and watch TV or listen to music. Of course the sound Is so high, I’m pretty sure the neighbors can hear it even with the windows closed. I know she gets lonely and I do try to stop in and say hello and talk for a few minutes each time. I get her breakfast, lunch, dinner, take her to/from the bathroom, and I sink bathe her since she can’t step into the shower anymore. I wish I knew who to call and how to get her help without her having to leave home. She’s lived with my family for 32 years, since my dad died. I feel so selfish but all I can think about is What About Me? When Can I Start My Life?

My mother's urinary and fecal incontinence soaked right through Depends. The diapers from hospice were much better but boy did I have an awful time cleaning her,, the mattress protector laundry laundry laundry

I can relate, I had to move my mother into my home in March. Prior to that I was staying with her at her apartment starting in December 2020. She was released from the hospital as "terminal" with no time limit given. When in a conference call with her, her doctors and myself. She kept saying she wanted to be with the family. I tried to honor that wish even though my own health was not good. Now my health is worse, the stress is tearing me down ; exponentially it feels like. All of my coping mechanisms are either exhausted or contributing to my health issues. I have to find new coping mechanisms and am at a loss as to what to do , where to go for help. I struggle daily to find the strength to face each day and any challenges that come.

Omg!! I am with all of you all. Been in plenty of these stories and still going through it. My dad has end stage alzheimer's. I'm a caregiver. He is on hospice.
Bit I want to ask have anyone heard of UNIVERSITY OF TASMANIA? They offer FREE dementia classes. Omg. Look it up. Take the classes. It is all online
They have great great information. I have never gotten through a whole course because of my responsibilities as a caregiver and dealing with my own illnesses! Yep, illnesses....and family, but it has helped me out a great deal.
The site is: mooc.utas.edu.au
Go check it out. Hope it helps you as it did for me.
Gof bless!🙏🏼

Yes!!! You need help. Now. Do you have a friend you can have take over a few hours so you can rest? It sounds like you have caregiver burnout. Get in touch with alz.org they can help as well as this forum or AgingCare to assist in getting help. Even a nurse practitioner. If your parents have Medicare contact medicare and ask how to get a NP to come help you. Or a home health aid.
My GOD be with you.

Well, as of this minute. I'm getting just a little bit tired of being called "stupid" by my Mom...

JSunny . I probably threw out half a dozen pairs of pants when my mother soiled them. I don’t want poop stained clothes in the wash dirtying the other clothes and the washing machine too. Yuck!

If my mom needs more pants, I can get them at a thrift store for cheap. Same goes for bedsheets and shoes.

I would throw out the poopy shoes if I were you just to save my time and sanity.

Oh JSunny, I know it must be so frustrating. It happened to me in the middle of the night. My mom was on the commode and I went into the bathroom to get something and came back and stool was all over her body and nails. I told her if it continued she would be going to Shady Rest and after that I never got her up in the night and left her alone again. By the way she didn't go to shady rest but it felt good at the time to say it. Perhaps depends might be a good idea.

1 day of care giving last night woke up at 3:30 did not go back to sleep gave him a Trazadone . walked into the bathroom pooped all over the wall and toilet and floor, then got into bed covered in it, cleaned him up then changed the sheets, tried to get him back to sleep, found out this morning pooped on the toilet again and peed all over his shoes in the closet. I am at my wits end and extremely tired. I don't know if will through his shoes out or try to wash them, just had to vent.

Trimm1, God I know what you are saying. And believe me, my heart goes out to you. It's weird to say I think but I get comfort in reading these posts because I know I am not alone. And part of the best of this is I can vent and no one here will look down on me for it, But, you can not give up your entire life. Your mother, in her right mind and in better health would tell you to live your life. Think about it this way...would you want your daughter to give up her entire life and any happiness for you? I know my mother wouldn't. And another thing is something I heard recently about God. We were all probably taught that God will punish you for your sins, send you to hell in eternal fire. Well, first off Jesus died for our sins. But we are all God's children and his question is "Would you ever send a child of yours to an eternal hell of fire?" I thought this was kind of appropriate here and it has helped me in my decision to place my mother immediately. Before I can't come back from this depression and ill health that all of this has caused. Please give yourself a break and think of a future for yourself. There are people to take care of her for you and you can have a life and still be there for her.

It is ok to vent here. I have been caring for my mother and her husband for the last 5 years and I am 61. I know what you mean about no life and no hope of one in the future. I think sometimes "Who will want me after I have been so burnt out and run down?"
Have Faith Dear One. Ask God to give you strength he will. And I know he is your husband but you deserve a life. I hope that doesn't sound too heartless but I have to do something now with my mother so I can have a couple of years of life. I'm still young at heart anyway.
God Bless and Good Luck

My mother has had several UTI's and this is particularly difficult. And lately, she has gotten worse. She insists I have a sister and her name is the same as mine. HMMM? Anyway, I finally told her when she talked to her to tell her to get her A-- over here and help me! It didn't help! :) lol But back to your question. I am having extreme ups and downs lately and it is becoming too much for me. When she "comes back" after the UTI she doesn't remember her abuse and running me ragged. I explain how tired I am and I need to rest and she doesn't understand and starts to get angry at me saying you are always tired or sick. It breaks my heart really but I do tell her about some of what happened (not all) so that maybe she will give me a break. It doesn't help. I am at or past the breaking point on the caregiver burden test I got 84 out of 88 so I think it is time something is done. Don't let it get as far as I have. I had no clue how hard it would be to do all of this, meaning paperwork and caregiving for her and her husband both with dementia. Very difficult. Don't let it happen to you! I am still in the process of the paperwork but I think her UTI is cleared up and she may be easier to deal with for a while. I hope and pray this all goes easy and fast as I can't do it anymore and I don't know what will happen to me or them if it gets bad again. Not saying I would hurt anyone I'm saying I may collapse. I'm 61 and haven't been able to take care of myself. Doctors appointments canceled, x-ray's canceled because there is no one else to take over for me and I can't afford a nurse to come in or even someone to come to help me clean the house up. OK, I admit it I'm at my wit's end. Sorry for going off like this but I think I really am warning everyone to not let it get this far in your caregiving adventures.

Dear Care4Dot,

(((hugs))) There is so much on your plate. It's so hard on daughters with the amount of care we are expected to give unconditionally. My dad passed away almost 5 years ago and I felt as you did. Looking back I wished I made a different choice and maybe let him be in a nursing facility. Over time the anger and resentment and frustration and tiredness takes a toll. I know it's not an easy decision. After my dad passed away, I was still raw about what I could have done to keep him alive longer. I feel like it's a no win situation for us caregivers.

Me too. I have such anxiety and so depressed over caregiving for my parents. Struggling through the many bad headaches right now. Finally got a caregiver that's excellent but expensive. Every time the bill comes up, they say they don't need that much care. Well they do. They are pressuring me to move in with them even though there's no room for me and I have my own home. I'm so down that I bearly get anything done at my own home. I know if I moved in with them I would be more resentful with them than I am already. And this has just got a grip on me over the past few months. I've been taking care of them for year's now. Started once a week up to 3 times a week now. I'm just beyond help myself so how can I help them? You are not alone, believe me!!

That seems to be a theme. I’m almost 60 and I fear the same

I would give just about anything to have any sign of gratitude. I think my mom just assumes I will be here and do everything for her that she can’t do. I see her getting upset because she needs help with most things. Mom thinks she still has a “good brain” but she’s forgetting more and more and if you correct her or say you just told me that, She gets all upset so I try to be patient and listen to the same complaints and stories over and over. My mother pays my daughter to take care of her but honestly, my daughter does very little. I am grateful she takes mom for doctor appointments and she gives her a shower 2-3 times a week. I’m lucky to be working at home since the pandemic started so every morning I text my daughter to get up here and feed my mom, put on her shoes and socks. She doesn’t think to just sit with mom to keep her company. Sometimes I feel like I just can’t keep going on taking care of everyone. What about ME? When can I start living my life? I’m 63 years old, I want time to travel and go visit out of town family, anything!

Sharon, HUGS🤗💛

When I read all these replies my heart shrinks and breaks, my soul sinks. Because our replies are just different versions of the same tragedy, at the end of the day we all go through this excruciating process where, if boiled down, we all seem to be in this situation where there are only two choices: preserving the life and wellbeing of who we love, or our own life, and choosing the other person’s life out of love, commitment, compassion, etc.
I feel it is one of those black versus white situations with no grey areas. No breathing breaks.
My heart goes out to you Tynagh, as I feel we carry the weight of the same cross. One day, one half a day, one hour at a time, is the best way I have found to survive from a practical perspective. 💜

Hugs to you. We all feel that way! But fortunately, there is this resource to let us know we're not alone.

If you are running the gamut of emotions on a weekly basis, you're doing great!!!!!!! Some days that gamut gets run several times over 25 hours! I love my mom to no end, but it's beyond challenging. Some moments I just lose my temper at what I seems to be her just not trying; some moments I think I am not letting her do what she still can do. Some moments I wonder with exhaustion how long this will continue; some moments I realize that this will only stop when she passes away and that is soooo sad the thought makes me cry. Then there are those moments when I realize that as I'm 65, her fate will be mine in some years ahead. It's just all so hope draining.

Struggling. I didn't sleep last night and she's already agitated and rummaging. Gets more agitated every time I stop her from tearing something up. Same questions over and over. Have to save the last of the anxiety meds the doctor gave her so I'll have them to take her to get her covid vaccine .... and doctor won't refill them before next appointment. It's going to be a long day.

Today, not well. I joined today because of an argument my husband and I had this morning (he's 86, I'm 68) and I acted out in anger (or should I say rage?) Not realizing the profile bio would be public, I summed up my situation there so I won't reiterate it here, but bottom line is I think I got so angry because I'm just plain tired and burned out with no respite in sight. In general, even though my caregiver duties aren't overly burdensome, I feel like I'm in prison because I can't go anywhere (even before Covid) and each day revolves around meal prep and clean-up. And because I'm 68 I'm scared I will run out of time to do what I want....such as travel. It's also crossed my mind that he may survive me! I so related to your comment "better now that I see you!" as my husband always says that even though he's texting away all day to strange women. I'm thankful I have this forum to vent on.

After reading through some of the comments here, I would have to say that I am Blessed beyond belief.

I feel that if I was caring for Dad all by myself, I might be at the end of my rope... and my heart goes out to those that do. I have mom, who is 84 herself, and my husband, who is disabled but able to help when needed.

It’s not so bad for me and I believe it has everything to do with my Faith in God...everything... I don’t know that I could handle it without Him :)

Taking one hour at a time

Love love love your response!!

The Families Coping Together with Alzheimer's Disease (FACT-AD) Study is seeking adults (at least 18+) who have a parent (at least 55+) experiencing memory loss for a study to understand your experience coping with dementia together. To see if eligible, e-mail kathleen.williams@yale.edu

Check out our lab website with studies for caregivers and their loved ones: https://medicine.yale.edu/lab/monin/

{Permission acquired to share - According to our Terms of Use regarding solicitation of members, AgingCare has verified the validity of this research study in order to allow it to remain on the Caregiver Forum for any interested party to participate}

i really agree with you, nurture — this forum helps me a lot too!! hugs everyone!! :)

I have been taking care of my parents by myself for years. I have a sibling who refuses to help. My father died of dementia related illness three years ago. I gave my life up to live with my 93 yr old Mother to take of her. I am not handling this well anymore. I am exhausted, depressed, and I feel cheated. She is miserable and sick. Technology keeps her alive. My heart breaks for her, yet, I want my life back.

Do you have any siblings? If your parents are on medicare you may qualify for respite care or an aid to help a few hours a week. Look into their health coverage.

Tony you have any children? You sound burnt out and did you ever think what would happen if your health declined? You need some time for yourself I know medicare pays for respite care so try calling the back of your card for some direction.

I am in the same boat my husband has early onset alzheimers I have been taking care of him for the past 6 years just quit my job in January to become a full time care giver ( I am super lonely and can never leave the house for walks or anything because I cannot leave him alone) now he wakes me up starting at 3 am every night till I finally get up , I am physically exhausted and mentally going crazy probably from exhaustion and deep depression. Good luck in the future he is only 61