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

Not so well....i take care of my 97 year old dad....i feel tremendous anger..resentment...guilty im putting my husband and family through this...guilty if i have thoughts of putting him in a nursing home. Just tremendous amount of anger.

I try my best to manage. Although I see a psychiatrist and a doctor on a regular basis. The most important thing to remember is to take care of yourself. I get told that all the time, and I can't do it myself. My recommendation is get help. Talk to your doctor, they can help you get a psychiatrist and or a therapist, somebody there to talk to is a big relief. Try to get a hold of someone within your mother's insurance to see if they cover a respite or an at home nurse for you so you could take some you time. It's important to think about YOU.

If I was a better person, or different, or more compassionate, or with better boundaries, or chose this time instead of falling into it without options to leave or improve things, end the relationship just so I won't continue to live like this everyday, so my mistakes and choices would be mine and not determined by someone else, if only....

The way I handle that is by remembering that when shes gone then I can take time for me. but right now she depends on me to make her comfortable and make her feel safe and secure so I will. We have this thing she's very weak but we dance down the hall to te bathroom and bed every night and she loves it I wouldn't change it for anything

Realizing, with great effort, changes can be made.

I care for my 90yo Mom with dementia 24/7. How am I coping? I'm here. Like others in this situation including yourself I go through a range of emotions. I have a lot of anger and resentment of the situation, but not towards my Mom. I'm glad for her that I can do this. This situation has brought a tremendous amount of sadness into my life. There is not a day that goes by that I'm not aware of the life I have lost and it brings me great sorrow. I try to keep these feelings of sorrow to myself. But, sometimes the tears come and at least once a week it seems I have a good cry and that seems to help for a brief time.
I'm not sure there is a great way to cope with this situation that so many of us are in by choice or default. I would guess a lot of us are just hanging on doing the best we can and we'll continue to do so until the situation changes.

I would also like to say that having this website as a resource and knowing that you're not alone on this journey does make the situation more tolerable. Thanks to all the folks who take the time to answer the questions. You've made my life easier.

Wow, reading all your responses have just given me a much needed deep breath. I thought today I was reaching the end of my rope caring for my 95 y.o. mom. As a single gay man, with no children, I feel isolated and alone. My siblings are of no use, both alcoholic, drug addicts, and the one had been abusing my mother for years.
I agree with what some of you say in that there are special moments a few times a week where she says thank you, or "You do so much!" I actually had to quit one of my two jobs so I can care for her. I know everybody says you have to take care of yourself, but I find that difficult and as if it's yet another challenge to deal with. Thank you all for sharing your experiences. This site was a blessing for me, and I feel less alone. Let's all hang in there and breathe deeply. I'm Brian

Hey Brian. Your mom is lucky to have you.This is a great site to vent,some things you just gotta say or bust. This is a safe place.Although we do get some grump/judgemental ones now and then but they are few and far between. Mostly it's just us in the trenches..

I know what you mean by up and down. Sometimes I feel on top of the world, then something happens and I'm angry enough to chew nails. I don't know how I would handle the frustration sometimes if it weren't for my helmet and my finger pistol. I shoot myself a lot with my finger pistol. It isn't loaded and for some reason helps to dissipate some of the frustration.

I have a huge range of emotions, going from peaceful and compassionate to indifferent to angry and resentful. Sometimes it is not linked to anything that my mother is doing. It can just be how I wake up feeling, so I can't blame anyone but me. It helps to step back and look at how I feel and adjust my attitude. Doing that helps me feel better and makes me more tolerable, I'm sure.

I do like when people tell me I need to take more time for me. I do take time for me every day, but the responsibility is still there. People can say to take a vacation, but you know it is not that simple. When the person you're caring for is competent and won't let anyone in or go somewhere for respite, there's only so much you can do. He/she is a person who is often headstrong and not an object we can move around at will. Wouldn't it be nice if we could just say, "Mom, you're going to Shady Manor for two weeks so I can take a vacation," and she would go. HA! My mother would say no. She would say she was fine on her own or she would want to go on vacation with me.

Wouldn't it be nice to really be the boss?

"It's the craziest and horrible life as I am not able to live my life, yet I have a hard time seeing my mother living with less."

Last One you hit on why I have been taking care of my mom 24 x 7 for the past 7 years. Yes, my ability to live my life as a wish is certainly restricted and I am often emotionally frustrated and angry as well as physically exhausted. But if I were to quit and institutionalize my mother, her capacity to live any type of meaningful existence would be over.

Timbuktu, thank you very much for your kind and encouraging words! Definitely did get the impression this is a safe place, and I feel lucky to have stumbled across this site.

This site has really helped me over the last 3 years. Just knowing I am not alone in how I feel is a great comfort.Society frowns on openly saying "I hate my mother/father" no matter how bad the parent/child relationship was.My mother was emotionally abusive and this has been a difficult journey and still is but I am at a much better place now than 3 yrs. ago.It really helps to come here and just vent,people here understand that, just get it off your chest so you can lower your blood pressure and not feel like you are going crazy.

Heeeey Brian!!!! Welcome. It certainly helps just to have a place to say "I'm on the slow boat to crazy. Oh!! But look?? I HAVE FRIENDS." 😜

Lol Mizbrandon:)

Gracious, it is true once finding this site that I realize there are others out there ready to blow our tops, bit we stick it out. It really has worn us down this past year plus caring for my FIL. My husband has rounds of lack of sleep due to his dad getting up alot at night. His dad is a fall risk and feels insecure at night. I would love to just say I think it is time to have your dad move out, but my husband would never hear of it. His dad does make "guilt" statements at times to put him a home, because he may die faster like his brother who passed away after a 2-1/2 month stay in a home. His brother was also with us about a month and requested to go into a home to be cared for.

I go through a roller coaster of emotions, anger at others who I feel have failed me or my Mom throughout this time. I only want to deal with a few people that help me now. Or people that are going through the same thing. I do best to deal with all one day at a time and keep Mom happy and comfortable as she has been bedridden in my home for a year now except for a short period of rehab in a nursing home last spring before going on hospice. Luckily this one last nursing home was good but the two the previous year for rehab were nightmares and should have their licenses taken despite their 5 star medicare rating. This is why I chose to take her home with home care. I deal with anger about that still when I let it get to me. One thing this has taught me is that there are a lot of losers out there who have jobs and get paid and don't know what they are doing. It has given me a very dim view of society and how the elderly are treated. I try to get through this all one day at a time, find joy in the very little things like a good cup of coffee or birds singing, and I find strength on this site from all the other caregivers. Hugs to all of you for what you are doing!

Speed boat, mine is a speed boat.

Up until about 6 weeks ago, I cared for mom 24/7. I made a decision that I could not continue with this...so my husband and I moved into a condo in the same building as hers. She was super upset and very negative about this leading up to move date, and she let me know. I made calls and got her aide time increased from 2 -two hour times a week to 4- two hour periods a week...and we started her with a counselor.

Since the actual move, she has been really pretty good...we have a video link (baby monitor with camera - not internet addressable) and a wireless doorbell so she can signal when she needs or attention. I still help with morning chores and medications and meals and bedtime, but mom is finding more things to occupy her time (crosswords, word finds, solitaire, etc) and that has helped.

Last night as I was helping her get ready for bed, she said, " i know God put you on this earth to take care of people and pets and I am thankful. I hope God takes care of you." Wow - I was so used to the negative stuff and things have gotten so much more positive. And it is really nice living with my husband and the cats again!

I'm caring for My Mother 24x7x365. Mum has Alzheimer's. This is the greatest challenge of My Life..It is terrible tough. The isolation, and the loneliness and striving to do every thing on My own is at times exhausting. I receive NO help either financially of from Family. Three weeks I contacted Our local Occupational Therapist asking Her to call and advise Us on the best type of air mattress We should get to prevent bed sores...after a dozen questions over the phone..guess what, We are still waiting. I Pray that My health will remain as I fear for My Mum. Thank's to this terrific site, and all of You Carer's Who help and support all of Us.

It's a tough slug most days. My parent's moods change like the weather. Some days they're not so critical other days all they do is complain. I try to do the best I can and realize this isn't forever. When they get cranky I shake my head and try to ignore it. It certainly takes its toll. Luckily I found this group which makes it easier, knowing that others go through the same things I do.

The last 3 years have been much better than the several previous ones. Therefore my absence from these forums. Of course, I nearly had a nervous breakdown and had thought about suicide before I realized that my MIL is not the ONLY person who deserves CARE and a LIFE.

I saw my doctor just before 'running away from home' for two weeks 3 years ago - with hubs permission - for some absolutely necessary R and R. The doctor's care and kind words and the support of my husband AND the two weeks I had alone at my sister's home (they both work) doing absolutely NOTHING for anyone else - and walking twice a day, swimming in her pool and just relaxing for the first time in YEARS - all of this saved my sanity and my life.

When I came home I did exactly what the doctor ordered. I CREATED BOUNDARIES - some physical and some emotional. Of course, my MIL thinks I AM CRAZY - because I pasted fabric over the windows in my french doors and tied the doors shut from MY side AND put a 40 lb bag of water softener salt in front of the door adjoining our living spaces - AND I didn't speak to her for 3 months - it took that long to forgive her.

I still cared for her meals, meds, etc. but my husband took them in to her. I just needed a very long break from her and her hatefulness.

Anyway, the doctor said I needed to set boundaries and we did. It seemed harsh at first - but he said NO ONE has the right to barge into another one's home making hateful, unfounded accusations. That I should treat her as a next door neighbor who needed assistance. That is what I did.

The time off from interaction with her saved me and allowed me to forgive her - I realize now that she MUST have a mental problem because NO ONE IN THEIR RIGHT MIND does the things she did and continues to do. She lives in denial of any hurt she has caused. And anything she THINKS is true - whether it is or not - whether it happened or not.

I know that not everyone's circumstances allow them this much freedom. My MIL is able to care for her personal needs - all I have to do is cook, clean, monitor meds and doctor appointments. Thankfully, her care does not require 'hands on' care the way it used to. She has 'Lifeline' in case of an emergency and meals on wheels for lunch. I leave breakfast and her meds on her kitchen counter before she wakes up and hubby takes supper to her in the evening. She has frozen food she can nuke if needed - in case we are not home. We no longer stay home every minute 'just in case she needs us.' Thankfully, her health is not that bad right now. .

We have already decided that if/when she is ever hospitalized again for the required amount of time for Medicare - she will not come back home - she will go ot a N.H. She also has 2 years of N.H. insurance through her husbands company. After ten years of care - I no longer feel guilty about this decision. We figure if a 2 hour visit every year is good enough for one sibling and a 2 day visit every year or two is good enough for the other sibling - then certainly ten years of care is enough already.

My husband spends more time in a month sitting in doctors waiting rooms than her other kids spend with their mother in a year! I clean her apt. while she is gone. We have done our best and are no longer in the physical condition to handle 'hands on' 24/7 care. Those days are over. We will not feel guilty over this. We just won't.

I know this may seem hard hearted to some - but we have done our best and everyone's best is different. We do not feel that we need to DIE or give up our life completely so that she may continue to live outside a N.H. And I can tell you that if I had to go back to the around the clock care I gave 5 years ago - I would literally die. I cannot go back to that - EVER.

So, basically, it all came to a point where we HAD to make changes in order to continue to care for my MIL. We HAD to take our life back. If I have to go back to NO LIFE except for hers - well, it just isn't going to happen. Bad backs, bad shoulders, surgeries and added years have taken their toll. Physically we are not the same people we were when this all started any more than my MIL is. Sadly, old age goes one way - DOWN HILL. I don't feel it is fair for an elderly parent to expect their child (and sadly, in our case it is just my husband and myself) to look after them at any expense to themselves. I would NEVER want my own children to do that and have told them so.

I know not everyone will agree with me but this arrangement has allowed me to continue caregiving without feeling furious all the time. If you, as a caregiver, feel overwhelmed, angry, resentful, furious - something needs to change. And the changes needed are sometimes the hardest because those changes feel 'selfish' when we are so used to giving, giving, giving. But, we have to have a life too.

I too live with my grandma who I am caring for. I also am caring for my mother who has cancer (although hopefully this is a temporary situation). Some days it feels like a real struggle. It's even a power struggle between my grandma and I sometimes. Then others she wakes up with a smile on her face at seeing me. She would say thank you those days and would be so loving. Then other days like today, I feel like I'm a terrible caregiver making her the most unhappiest person in the earth. She battles at me to even have me help her to the bathroom. Yells and is abusive (not causing me physical pain yet but will weakly slap my hand or throw things that I can thankfully duck). Those days are a lot harder to continue than the good days. I have given up my job to care for her and basically given up my life for her. She doesn't ever seem to realize this and it's tough to not feel really bad anger and resentment. I never get to go out, haven't had a boyfriend in years (meeting people and having time to do anything isn't reality), and the only people I really see are the people caring for her or people at the grocery store or the drug store.

But she would never survive in a nursing home. Your mom is lucky to have you Brian. It's tough, hard and often thankless but I think we can take solace in knowing we are caring for someone who has cared for us.

Just remember littmisskitty, that our parents cared for us BUT they did not DIE for us. I realize now that the care a parent gives a child and the care a child gives the parent or grandparent is NOT the same. One gives great satisfaction - we see our kids grow and develop and make progress. Caring for an aged parent or grandparent is just the opposite - all we see is loss. Loss of independence, loss of health, loss of cognitive ability. Eventually loss of life.

The question is: Do WE as care givers DESERVE a life? I say YES. I have done my best and spent some of the best years I had left in my own life caring for someone else's parent with absolutely NO help from her other children and very little appreciation from my MIL. It took ending up in a very bad place in my life to realize that WE deserved a life too.

You can still CARE for a person even if they are in a nursing home. It will still require regular visits on our part to make sure they are cared for properly. I never want ANY of my children to do what I have done for the last ten years. NEVER.

Everyone's circumstances are different. but if you read enough post on this forum you will realize that without help - meaningful help - from other family members - being a sole care giver will turn a loving, giving person into a resentful, stressed, unhappy person and sometimes worse. No one should have to 'wish for death' for themselves - thinking it is the only way out of care giving. That is the place I found myself in 3 years ago. Not a good place. I will NEVER go there again. No care giver should have to feel that way in order for another person to stay out of a nursing home. Don't Care giver's count? Don't our lives matter too? I say, yes.

Codger, I hear you, loud and clear, and agree with a lot of what you said. Sorry
that you went through that. Learning to create distance has value. Especially if you were healthy enough to leave what was happening on the other side of french doors as boundaries. What kind of paste do you use, I have a sliding glass door.
Looking forward to decorating that, things are better now. Hoping you still get out for a swim and walks, don't forget!

Lastone, how are you doing today? The holiday is just like every other day to me, but ate out alot at IN-N-OUT. Emotionally, it can be a roller coaster ride, but several times a day! It sure helps when others are not acting out.

Codger, agree with everything you mentioned, I couldn't have said it better.
Stay strong.

Sendme2help - I just mixed up a thin paste with flour and water! It worked beautifully and the fabric has stayed put for 3 years now. I used fabric that matched the valences in my dining room and it looks Great! Wish I could post a photo here.
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This allowed me to feel that I had some privacy - even though my MIL uses the room on the other side of the French doors. We have to do what we have to do. It has been 3 years and if I enter her apt - I knock first :0) She only comes into our part of the house when invited - for dinner once in a while. We no longer have her at our table for every meal the way it was before.

My doctor said she is capable and SHOULD TAKE SOME INTITIATIVE in her own life as far as her friendships, etc. She still has living friends and relatives in the state she moved from but rarely writes to them or calls them. She has a few friends here as well that she never calls. She has an older sister that she never calls.

She expects everyone to write to her and call her! I told her to have friends, we must BE one. That mail and the phone work BOTH WAYS. I don't know that she cares enough about others to reach out. She does not even send sympathy notes or anything. (she even speaks 'ill of the dead') She is totally and completely self centered. I pray that I do not become a person like my MIL when I get into my 'later' years. I told my kids to ignore me if I do.

Typical interchange between us: This one is kind of funny. :0)

She asked me to buy her a cake WITH FROSTING. (doc says allow her to eat what she wants and we do). So, I bought a lovely cake and took her a slice and put 4 slices in her fridge - the rest in our freezer for later. We don't eat cake. I went into her apt. later that evening and asked her how the cake was. She said "I have tasted better'' ''It was AWFULLY SWEET!" I said, well, after all, it WAS a cake WITH FROSTING. Then I said 'picky, picky, picky' (with a smile) and left the room. Our interchanges are kept to about 1-2 min. a few times a day now. I just make sure she is ok and that things are picked up, etc. I can only handle small doses at a time and am SO GRATEFUL her health allows this. Postscript: 2 days later the cake was ALL GONE! I said 'did you change your mind about the cake?' She said "well, it sort of grows on you'' - and she has since eaten 4 more slices. So, she has her cake and has eaten it too! :0)

Oldcodger, what you wrote about your MIL not calling or writing anyone made me think. My parents didn't call or write people, either. My mother waits for people to call her. I tell her the phone works both ways, but still she waits to be called. She says she doesn't have anything to talk about. I've wondered if it is lower self esteem (Who would want to talk to me?) that causes it or if it is a feeling of entitlement. I am more inclined to believe it's mostly self esteem that toes with the monotonous life being lived. I can understand that, because since I've been here I think about calling people, then don't because I have nothing to talk about. It is a perfect way to isolate if older people all stop calling each other.

GLASSHALFULL, I've often thought about doing the same, moving into a Condo side by side with my FIL who has been living in our home X11 years, , ,to me, I think having my own personal space/home, separate from him might be the best move for us, then I have a difficult time thinking about leaving my house that I love for a situation that could change at any given moment, and then what, move again? I just don't know what the right thing to do is anyone, but I do know that I'm extremely frustrated most of the time in this ongoing madness, so I'll probably just stay put for now! I am glad that it seems to be working out for you though! There is never any easy answer to this quandary!