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

OLDCODGER, well it seems that you and I are in the exact same boat, however, I have my FIL living with us since his wife passed away 11 years ago. Having him come to live with us was the worst idea, but we made that PROMISE, that turned into the biggest mistake of our lives! He was perfectly fine to have lived on his own for the first 8 or so year's, if we had moved him a bit closer to us, but we allowed him to move in, mainly because he was scared, lonely and had never in his life ever been alone before. But, like you, we have now given up the very best years of our lives to accommodate him, the years where we could have and should have been enjoying our 20 something kids and socking money into our Retirements, but instead, having him here, has pushed us backwards financially and those years are now lost to us. We haven't had a good vacation for 10 years now, and he is as happy as can be just sitting day after day, year after year, sitting in his TV room watching old Western movies and sports and the news. Well, I am not so happy, being tethered to an Old Man, who is sucking the joy out of our life, and No, I didn't sign up for this! So I am with you, the next big medical event, and its off to alternate Senior Living for him, and then we are going to start living like Crazy to make up for the years we've done nothing but deal with Just Fine. Just Fine isn't fine anymore for me! I want to start living Life again! We have made some very big mistakes placating to his needs, and now the first opportunity, and it's going to be our time! I hope it all works out for all of you, whatever that may be, and No, we would never give up on him, but just make life better for all of us. I'm ready to sell our home, live in a smaller place and be able to do the things we want to do, travel like we used to, and still make sure that the Old Man is safe, happy and cared for, just not living with us. We would never expect our kid's to give up what we have given up, Never! And I've told them this too! Bht attitude is everything, and the Old Man is a Grumpy, self centered an opinionated person who doesn't even see what is going on here, nor even thinks that there is anything wrong with holding your own Son and DIL, from enjoying their lives and I don't get that ideals. Where my own parents were a Joy to be around, even when they were very ill, he thinks everyone is here just to make his life comfotable, well ,it's time for an eye opener for him. But I've held back and been respectful of him, his age and his condition, but hell, we are declining too, and there are things that I want to do before I can't anymore! Well, that's my rant about life in my house!

I feel nothing but Anger, resentment and complete and utter doom most days. Since my mother had to move in, my do nothing siblings get to go on with their life while Im stuck in some sort of weird hell . I get ZERO help. ZERO offers. My step father died and all I got was the bill for the cremation and service and I got left with ALL HIS BURDENS while everyone else ( including mom ) walks away scott free. I will NEVER get over the resentment I have. Never.

Stacey....we moved into a condo next to my Mom's and then a few years later she had to move in with us anyhow as she could do less and less.

I feel conflicted. Each day I get the feeling Mom is moving closer and closer to being placed in a facility but I can't imagine not giving her the personal attention I feel she needs to get through the day and I don't see how she could possibly get it at a nursing home. I've been her caregiver 24/7 for 3 yrs now and my body is beginning to rebel. She is getting more fragile and needs help getting out of bed and standing, etc. I'm starting to have back problems and most days I feel older than she is. I know I'm getting depressed, feeling life is passing me by but I just can't imagine her not being in my care...

It sounds like you need an assistant, oldestof3. Could your mother afford to have an assistant come in part-time to do things like lifting and helping with baths? That way you could still be involved in her care, but you wouldn't hurt yourself. The money is the only problem I can see with getting an assistant. It would sure be a help to you.

JessieBelle, I have a sitter several times a wk so I can get out for errands and such but I like to have Mom up and ready when she gets here because I think Mom feels better with me helping her go to bathroom, etc. which I know is silly. I am 'letting go' some. I've had the same sitter for quite awhile now and I trust her to give Mom great care. As far as helping with baths....these days that takes an act of God! Are all dementia patients that allergic to bathing?

I feel like it's a day by day thing. Sometimes I get so frustrated with my 92 year old mother when she repeats herself and the same questions....the loop I call it. She's very negative all of the time, and she's been living with me about 2 months. I had to move her from out of town so I could be with her more, and she keeps saying she just wants to go back, and I'm out to get her. I'm thinking about placing her in a memory care location.

Taking care of husband 84 with AD, I have no life, I lost most of caring for my once immaculate home, things pile up, want to trash it all but I crossed the line of wanting what I wanted or choosing to enter his world every day, I made the right choice as I love him and will keep him at home with me,

I don't cope at all. I try, i have hired help a feww hours a day, i go to group meetings, but I'm miserable. It was the biggest mistake i ever made taking my mother into my home. She's 92 now she was 85 and in poor health when my husband and i moved her to our home. She completely disrupted our life. It seems she wasn't as sickly as she made out she just needs a lot of attention and knows she get it if she complains a bout being sick. My husband and i lost all our freedom. We couldn't go out because she didn't want to be alone. We couldn't have friends over because she would be the wet blanket over the group. I couldn't feed her first and get her settled (like i did when my kids were young) because she won't eat alone. My husband and i thought how much longer could this go on, we were both healthy, we would be free after she passed. So in the meantime we sacrificed. Unfoutunately my husband died unexpectedly. Everything we put off will never be. My sacrifice continues. Looking back iwish i had placed her in a good home. Her life is not more valuable then mine and i treated it and still do as if it were. Don't make my mistakes.

smikulick, your words are so wise. We do start to feel that the person we are caring for is the one who is important. Last night I was feeling angry because two people -- a neighbor and a friend of my brother's -- talked to me with disrespect. I don't say anything, but I thought about how caregivers can fall into a Cinderella scenario. People can talk about how wonderful caregivers are, but their actions make lies out of their words. These people can do damage, particularly when you're working with a parent who thinks only of him/herself. We disappear.

One thing I really dislike is when I go out and someone asks me how my mother is. Most don't even know my mother and are just making polite conversation. But really, can I never get out of the caregiver role? I really don't want to talk about her when I'm out.

Sometimes we have to remind ourselves how worthy of respect we are and that we are equally important to the people we care for. smikulick, I wish you could get back those final years with your husband. I know you would have done things differently if you knew what was going to happen. I am so sorry.

smikulick, I am so sorry for the loss of your husband. But I am very glad you have some hours of help through the week with your mother.... Maybe if your really work at it, you could find things to do in those hours that will make the time 'at home' more bearable. Something totally unrelated to what you do at home. An exercise class, a virtual tour, or maybe time with a good therapist. May God Bless you and help you find Peace!

Angry and resentful. Have 3 siblings who are no help. Sad that my second husband is having to deal with all this. Feeling completely overwhelmed. Still trying to work, cut it down to one day a week but its a 12 to 14 hr day plus 2:30 hour dive time. My only time away from my mother. And what makes it work the day that im getting ready to leave is when she acts out the most. The rest of the time she is relatively normal(normal for someone with dementia ).

I have really appreciated this site and all the advice. My situation is we moved in my FIL 11 months ago. I really did not want this caregiver role, but supported my wife. This was orginally supposed to be a temp arrangement as he transitioned from his house to AL, but just keeps going on. My wife feels no body can take care of him like she can, and gets angry when I push the AL subject. But from Advice out here I have started the AL research myself and will be ready for when we need to act. This is straining on our relationship as I have become secondary to my FIL's needs in my wife's eyes, even though i do 90% of what needs doing at home. Once he does finally go to AL, i hope we can put our lives back together, but we will see. It is very stressfull working full time and taking this role on. But again the responses out here have really helped me cope and think.

My 93 yo Mom has been living with me for 4 1/2 years. A few months ago I joined a support group for Caregivers of Aging Parents which has been profoundly helpful to me. From commiseration to practical advice they have enlightened me. I realized that I had slowly sunk into depression and it's impacting my ability to function in my work. I thought I was going to have a heart attack as each morning I was waking up in a panic. So I had a physical and was relieved to learn that I'm in better shape then I thought. I've also started therapy every other week. On my birthday I treated my self to a massage. Oh and the facilitator at our support group brought sharpies and downloaded Adult Coloring pages (mandalas & graphic patterns) and had us spend 10 minutes coloring. I loved it and am now a coloring fiend! I had no idea that there's a whole world out there devoted to Adult Coloring! It is very relaxing for me and provides a creative outlet that's satisfying. I'm still very sad (and angry) for my Mom and for me too. When I told my Mom many, many years ago that I would take care of her this is not at all what I envisioned. I've been flying by the seat of my pants since this journey began and I've just recently started dealing with my life instead of letting life deal with me.

Hi LastOne
Hang in there! I know it feels like forever and emotions can run the gamut. With my mom passing in 2010 and my dad passing just over a year ago, I have enough time and space to be able to look back and feel good that their wishes were fulfilled, that they wanted to live their lives out in their only home.

I'll always have a bit of regret, guilt and/or remorse that I didn't do enough for them, but at the time, I did my best. I got some help and support, which made it easier, and with the small amount of experience I got from my mom's long battle with cancer, I did a better job at asking for help earlier when it came to my dad and his remaining years, months, and days.

Even though I felt like I was stealing time from taking care of my dad in order to do something fun for myself, it was critical and saved me from totally losing my marbles. And yeah, it's okay to lose it once in awhile, melting down to the core and regrouping once again.

Lean on your friends, lean on us...

Great thread... (with no sibling help and ending up feeling like a 2nd rate citizen in my family) my gut and emotions run the gambit (like those here) almost every day... I truly 'force' myself to gain (bring back) my 'self' again by doing any
'little' opportunity that arises to get 'out' or away. Right now, after a decade (and my mother getting older @ 87), I made a very huge and quick decision to go to Europe (soon) with a tour group (because the opportunity came up)... Sure I feel scared now that my mother will be left for 11 days without me, but I've tried to 'cover' all my basis with the neighbors, friends, etc. to take care of her while I'm away... Then, I plan to call (absorbent calling costs to the US) every day and talk with her to see if she's ok...and, how things are going... My stomach/heart is always heavy but I know if I don't 'try' to 'be' myself, I will only spiral downward. Our birthright is to live 'our' lives and be happy just like anyone else.

I feel deeply compassionate for all who go through this very special he!! of caregiving one's parent[s] in the same house! I did it for 6 years, for a very "complicated" mom...had always been "complicated" [read: her parents never got her mental issues diagnosed, nor did any other relatives who knew her and suspected something was 'odd'--but then, there was no real treatment, either...so maybe they did her a favor?][not her kids though--we had rather too "interesting" lives.]
It takes help and support from others to get ourselves on a better track, to learn better ways, etc. NO one can do it entirely alone, much less for years at a stretch without respite.
Unfortunately, our systems, and the good-hearts who work for those, too often MISS signs and symptoms of caregiver burn-out, and offer Nothing to help; in fact, too often those agencies and helping organizations, fail to help, and often make things worse by piffling off the caregiver's calls for help.
Far too many people are falling through cracks in our systems.
Aging Care here is a great help. It has literally helped pull both of us back from the brink of the proverbial cliff. We've both lost a LOT of ground, health wise, but, at least we didn't fall Off that cliff!

Here might be another useful help:
It's a support site for those w/ anxiety and depression.
Some might think this is Not the right approach for stressed-out caregivers, BUT, it MIGHT BE!
Caregivers are too often depressed to start with. 24/7 caregiving under the same roof as their charge, or even caregiving one who's in a different home, can be deadly to the caregiver.
Apparently, this site offers an online diary? If it does, MAYBE that could help some caregivers in their task to keep a diary to help protect themselves legally, and, help themselves track what's going on how often, to help put things in a better [?] perspective.
http://www.adaa.org/finding-help/getting-support/support-groups/online-phone
Anxiety Social Net Website: anxietysocialnet
Details: Social anxiety support; free: LIVE CHAT; Anxiety Q&A; DIARY; SUPPORT GROUPS; Media Sharing; Anxiety Blog
Hope this might be helpful for others!

Smikulick, I think I need my husband to read your post as he is about to crack emotionally caring for his father 24/7. I help where I can, but he is main caregiver for the man stuff. I feel like we are missing out so much as I watch my 3 year old grow before my eyes. I need him to read this before our time is gone!

As my mother-in-law gets weaker and sicker, its truly the hardest thing I have done. She is not able to walk more than a few steps and is tethered to oxygen 24/7. The other night my husband and i only got a few hours sleep because she kept calling for help to the commode. I know things are going to get worse, and i am afraid for how we will cope with that. Living with someone who is terminal is no picnic. You realize that the only way out of this is a sad event. I feel guilty thinking about finally being free, yet so sad for her. I feel like I have no life anymore. I know I am not the only one feeling this way from reading all these responses! I am praying for strength everyday. God Bless

Smikulik, My Mom has been with me 10 months. Having her in our lower room is not the best thing but its the way it has to be. She is pretty good. Has her times when she is lonely downthere. We bring her up for dinner and nighttime TV. (I live in a 4floor split level). We r 66 and 68. Husbands parents are gone. I miss being able to just pick up and go. Everything has to be planned ahead so I can find someone to sit with Mom. Like u I'm so afraid something will happen to one of us and we won't be able to enjoy this time of our life. So sorry for ur loss.

Oh, how do I cope, not well. I have no patience. I try real hard not to show it. I find myself doing things I never thought I'd have to do. Eventually, there r things I won't physically be able to do. At that time Mom will need to go to a nursing facility.

JesseBelle - What is strange is if/when someone CALLS HER, she will talk on the phone for an hour! She laughs and yaks up a storm. After all, they are all the same age and in the same boat! She and her sister talk about old times at home with their folks, their kids, etc. Her sister called her every few months. She has NEVER called her sister in the ten years she has lived here.

We even added 'unlimited long distance calling' to her phone plan for 4 months - she has a regular phone - and she never called anyone the entire 4 months. I know, I pay the bill! I reminded her that she had the free calling and that she should call her friends - at that time her BEST friend for over 60 years was still living - and would CALL HER every month - but she would never call her back.

So, I am not sure it is all about not having anything to talk about. There are always good times from the past to talk about............ a good book you've read ..........a crazy TV show you've seen. Anything. But, I think it is just 'easier' not to bother.

DO REACH OUT to others - I know it is hard. I find it easier to do it via email and do that every day at least once.

I am full time caregiver for my dad, who has brain cancer. He isnunable to walk, due to the tumor, and has limited mobility in his arms as well. My siblings are out of state and he lives with me and my family. My siblings and mother are constantly telling me im not doing enough, and not well enough. Ive never asked for help, but did las week, and was told i was selfish for not taking on that particular task.... how dare i not add one more thing to my list of cares... my dad also constantly pointa out how i do everything wrong (only because its not how HE would do it). I love that i am able to take care of him, but those negativities get to me everyday. Bring my self confidence down to nothing. This is the hardest chapter in my life, and to have my own family put me down is just making it harder. My dad is angry, and mean, and we deal with those everyday, all day long, on top of it all. I know that when he is gone i will be happy that i was able to care for him and be here for him. But getting through the hate and hurt is very tough, mentally.

Ah, yes... there are some people who have all the answers, but never offer to help. I wish they would put their great knowledge to some practical use. One sad thing I've noticed is that when we take on the role of caregiver that we often receive a demotion from respected citizen to naughty child in the minds of some people. I don't know what causes this. Perhaps people on the group who know a bit more about psychology than I do can explain it. All in all, I find that people write about how wonderful caregivers are, but it's just "lip service." After caregiving for a while now, caregivers to me are people who deserve high pay, but often receive nothing -- not even respect.

I am so tempted to tell one of my neighbors who talks down at me that if he can't address me with respect, then don't talk to me at all. If he were not a friend of my mother's, I would. I keep my mouth closed out of respect for her.

For all of you who have posted here, and gone on to lead desperate lives, trying harder to make things work, putting your own lives on hold, you will be in my thoughts and prayers. Keep checking back in, you are not alone. Something as simple as dividing your space by decorating can help remind you that you are important enough to have a place in your home.
Sometimes, taking charge of your physical environment can lead to better emotional health. (From my own personal experience and doctor's advice).
Take some care today, then plan to follow-up in the next few days....

It is so very impossible to cope when criticized by family and neighbors for something as simple as repeating something 3x for my loved one to understand. It was even asked, why did you say that 3x, he can hear!
Explanation needed, then 'they' won't hear or agree with:
He can hear, takes 1-2x to get his attention, delayed response, repeat yourself, like a xyz parrot!!! Then, he may or may not act like you even said anything, or more like you don't exist.
Since others don't live with him 24/7, he is extra focused for a short period of time on what they say. Have given up trying to explain aspergers to others who don't live it. Still, a challenge. Anyone try repeating self 3x or more when it is a habititual response for the person you are trying to communicate with says: "WHAT?"

JessieB, when you wrote "I find that people write about how wonderful caregivers are, but it's just "lip service." " it really struck a cord with me. People are always telling me how wonderful I am and what a good thing I am doing, but I'm 90% sure that when they get home they are wondering what I am trying to prove why I don't go out and get a job and put my mother in a nursing home like everybody else does. Or maybe I'm just paranoid.

Bogusnot, adult coloring is a huge pastime. Apparently amazon sells thousand of adult coloring books.
Good for you! Joining the support group is a good move. Stay strong.

Today is a hard day for me with my mom who I am caring for by default. She seems to think I am a bad person because I want some time to myself. Starting next week she will go to Adult day care 3 times a week. I am thankful to have a little glimpse of life. She wants me to feel guilty and I am doing my best not to. I have been here 4 months and this has been the hardest 4 months of my life. My heart goes out to those who have been caring for there parent for years. I pray for a village of support for everyone on this site.

Thanks for the reminder of those adult coloring books...there are some great patterns and I will try this while Mom is napping or watching some TV. I think it will keep me calm and focused on something that isn't worrisome!
I hear people telling me how wonderful I am for being a caregiver but I too wonder what they are really thinking, and I think it is usually, " I'm glad it isn't me"......