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

Heart2Heart,
I think you hit that right on the head, wish we could all meet for coffee, or something stronger perhaps? I know we would be there for hours, laughing, venting and feeling our sanity come back knowing we all totally understand one another! I suppose I should just be so grateful to have met you both here, my cyber island where I can talk about my deepest feelings and it means more to me than words can say! *Hugs to you both*

Exactly Rainey... running on empty.... My mother's handwriting is bad, but she can put a letter in our mail slot, where our postman will pick up. Like you, I'm so exhausted from the 'fight', that I don't know how much 'fight' I have left.
I think you, me and Jess are like the Three Amig'a's

Heart2Heart,
Sometimes I swear we live identical lives on so many levels, it is a great comfort knowing someone truly "gets it"! BTW, how did she send that photo? Is your Mom more functional than mine since I am the only one to get anything into the mail.
Jessiebelle, thank you for the laugh! That last sentence is so true and sent me into a good bray of laughter! It's truly nuts, isn't it ladies? We being the good daughters that we try oh so hard to be, just trying to be realistic and practical while our families drive us straight out of our minds with all this phony falderal! Then, I get the never ending reminder I have to get that darn thing in the mail! If only she could remember the important stuff, like calling me when she feels sick. Then when I finally do get irritated, she gives me the "boo boo pouty lip" like I am a mean ogre. She has no idea how I am trying so hard not to really come unglued! Bless both of you, you are wonderful!!!!!!!
Heart2Heart, I totally understand how things that had meaning start to not matter anymore..........I think we are just worn out and caring about sentimental things being treated like they don't matter is just one more emotional exertion we don't have strength for anymore. Maybe I am off but that is how I feel, one more battle I have no room or energy for.

Cards! My mother wanted me to get cards for everyone, too. I finally talked her into only my siblings and their spouses. Sending cards to her grandchildren and great-grandchildren seemed nuts, since it was me doing all the leg work. And none of them sent us cards. So with no quid pro quo, why keep driving myself nuts? The big increase in the price of cards is also a deterrent. Have you guys noticed that the typical card cost $7 now!! I mean, how silly is it to pay that much for a piece of paper folded up in an envelope. Totally insane. They'll be tossed in the garbage or recycle in short order, so why not just throw $7 in the trash and get it over with.

Oh Rainey... I've been going through the same card thing with my mother for decades now... it has nearly obliterated me... The same issues... plus... after running around all over (through the years) to pick out cards for her, she mixed up all the cards and envelopes and then lost a bunch, bent them, etc... All... not 'caring' (she's of 'sound' mind, didn't matter to her whether I had to run out and get her more or 'fix' the 'problems'.... 'Mikie' will do it... all this while our dysfunctional family could care less... it's such a game! How could any person ever BELIEVE that card giving could make a person MAD!... so interesting that you brought this up!...
Not at all feeling the love tonight as my mother pissed me off, by telling me she sent out an original photo of my father and her wedding to a person not even on our family... We have very few pictures of my father and that era... But, I'm getting to where nothing matters any more or is 'Special' in our family... none of my brother's, or their children care or want any of our heritage.

Well it's hotter than heck here and my lily white skin just can't handle it so well. My patience gets lowered when I am trapped in a hot house with only a fan to blow the hot air around. Mom comes to ask about a B-day card for her sister. I have all but finally put a stop to greeting card madness that she has driven me nuts with since she came to live with me. At first, it was a card for everyone for every single occasion, holiday, anniversary, graduations, etc. Then the gifts. All of this became my responsibility since she is incapable of picking out the cards, would make mistakes in her writings, (which was enough to constitute an emergency) I then had to run out for the replacement before she had a meltdown, because heaven knows, she cannot let anyone know she is less than perfect. She has dementia and everyone knows it. Nobody does anything for her but feel that sending cards, alleviates any guilt for doing nothing. This whole card thing has been perpetrated through the family for generations. I just hate them now. Such phony baloney. If anyone sends her a card, she feels she must reciprocate, (correction "I" must do the bidding.)
I have a very dysfunctional family and am not one for playing games. I played along for most of my life (for survival) and as I approach 50, I have had it. I told Mom no more cards except for her one sister whom is the only relative I speak with on occasion. She lives a far away in another state. I have invited her to come and visit before Mom is too far gone in her mind. She won't take me up on the offer. How much does she really care? Mom's other sister struck up a fued with her because Mom was raising 4 kids on her own and could not afford to contribute to her own mothers care when she started deteriorating. Mom was one who would have given anything she could have but with bills, a house to keep up over our heads, etc. she just didn't have extra. She did however buy Grandma very expensive hearing aids to which she refused to wear. Again, too proud to let the world see she had a problem, instead, she would ask everyone to repeat themselves over and over. To this day Mom's sister will not speak to my Mother but those darn cards just keep coming pretending like there is no problem. The charade continues. I caved in and got a card for Mom's other sister's B-day. What a mistake! Here she goes again, I had to pick it out, she struggles with what to write, and I told her to have me fill out the envelope with the address because if she made an error, I was not running back to the store for another envelope. Well what did she do? She ignored me and went to fill it out and made a mistake. It was all I had not to blast her with anger when she came to tell me she screwed it up. I am ready to announce to everyone not to expect anymore cards and not to send anymore either. If they want to talk with her, pick up the darn phone and actually speak with her! When will the ridiculous charade end of pretending everything is fine when it is far from it! I no longer want anything to do with greeting cards ever again, she ruined it for me. I know once again, I will be the "big meanie" for putting an end to this but I just don't need the extra stress and the constant reminder of how pathetic my family and relatives really are. There....... that is how I am coping today in 90+ degree heat.

Lloydbraun I know your post is two years ago but if you see this post I feel the exact same way you do it even made me think wow someone really understands finally what I feel! So thank you so much and I hope you see this post.

I have been taking care of my wife for two years and eight months since her stroke and personality aberrations. It has made me stronger, not weaker. It has made me love her more, not less. It has made me more protective of her than ever before. There is a state agency that is threatening to have her put in a long term care home. No one here in this group knows my name or who I am or where I live, so I can say here openly that I would kill anyone who tried to take my wife out of her home and put her someplace else. I guard her with my life. She can throw a bulldozer at me and I will continue to guard her with my life. I have been through all of the stress that people here talk about, all of it and more. I cannot put myself in the shoes of another person, but I will always love my wife no matter what she does and I will always defend her from those who would do her harm. I cannot even begin to imagine any other attitude than this.

I understand totally. My mother has basically taken over the first floor of the house. I spend a lot of time in my bathroom next to my bedroom. My husband works nights. So he sleeps during the day. I sit in here at least it's big enough. But ya , I'm avoiding her as well. Can only take so much Fox News. Hope you have a good day

Oh, it didn't seem that way, Erin. I know there are no answers to the problems we have. It's good to have a place to talk about them. We can't talk about these things in public because people would be horrified that anyone would talk about their mother. I felt better after writing about the rabbit room incident last night. It seemed a lot smaller after I read what I wrote. I think it is just a steady stream of negative can be too much to bear after a while. I feel bad that I try to avoid her as much as possible, but it is self preservation. I think she prefers I avoid her, too. 

Sorry Jessi Belle , it was late when I posted last. I think you have every right to feel the way you did last night. You are certainly not " the lowest form of life around here". I'd say the kindest. I'm sorry your mother doesn't appreciate everything you do. Mine does appreciate at least for now. Everything I do is quite expected by her but at least she says " thank you ". I hope you have a peaceful today. And again I apologize if my previous post seemed curt.

As it would any one Jessie belle

I know what you mean. Tonight has been a bad one. My mother gets warm after she eats dinner. Her sugar goes up and she's digesting meat, so it's easily explained. Tonight she came back to my room and told me I was going to have to bring the rabbit and my room and start shutting off the back room so the house wouldn't get too warm. This was a crazy idea. I only have two rooms in the whole house and she wants me to give up one of them because she is warm after dinner. When I wouldn't do it, she got mad and started talking about how worthless I was. She said I cared more about the rabbit than her. I told her simply that the rabbit never abuses me.

Of course, what I really wanted to say was that her solution for discomfort was for me to give up half of the little bit of the house that I use. I knew her discomfort was only temporary, so I just shut her out of my mind. But I also did something else -- got online and transferred two utility bills back to her credit card, instead of my own. I'd been thinking I was stupid for paying them, anyway.

I looked to find a social worker online who could help me figure out what to do with the situation. I was surprised at how little was available if she didn't go into a facility. Maybe I should start writing a book on caregiving for a covert narcissist with dementia. I have a feeling I'm not alone in the world.

A few minutes later when Mom was going to bed, she opened the door and asked me why it was always so cold and that maybe someone should come fix the floors to keep them from being so cold. These nights are so common that I just want to hide my face in my hands and wonder what I did in a past life that earned this. I don't know. I'm really not a bad person, but I'm the lowest form of life around here. I have a very strong sense of self, but I have to admit this is wearing me down.

Sometimes I can cope and other times I fall to pieces. Like being on a crazy roller coaster of emotions, never knowing if I'm up or down, backwards or forwards, you name it, I feel that way. I just want it to stop so I can take a breath. Time is passing by as I wait for something to happen to change my situation so I can move on.

Hi No Recess. I'm sorry you are in this situation. When you see the counselor tomorrow , maybe ask him/ her what legal services are available to you at a reduced cost. It seems to me, you should be reimbursed for your care. Your mom would have to pay for care if you weren't there

I feel so lost and hopeless. I am the only one left to care for my 85 year old mother, but she will not put me on her checking account or grant me POA or anything of the sort. When she passes, I will not have access to her money for burial, etc. I am so depressed about this situation, yet there is nothing I can do. I moved in with her thinking that I would have income from my rental property, but I have not received any income due to repairs to the rental, so I am dependent financially until I can sell my home five months from now. I don't know how my having income will change this situation though. I am confused, depressed, hopelessly hoping that whatever changes may come, I will be able to cope and survive. I'm on antidepressants and have an appointment with a counselor tomorrow, but I haven't a clue what to say to the counselor or where to start. I search for work every day to no avail because I am stuck in a rural part of southern Alabama and jobs are very hard to come by. This depresses me beyond belief because work has always given me a sense of purpose and now I am just dependent, broke, and hopeless. My mother has money but says she doesn't. I believe her dementia is worsening and I am feeling so much panic due to the hopelessness of this situation as far as i can see.

Thanks for whoever pushed this to the top. Am new here, take care of 93 yr. old Mom, now in hospice, as well as take care of Dad, though he is mobile. I got an aide to come in and it's been a godsend. After taking care of my mother, she does a little housework to help me. Keeps me from feeling so isolated and a little more motivated. It's easy to get resentful not having a life of my own now. I try to practice gratitude. I only get out for one or two hours at a time but it helps so much. I just keep telling myself how much better Mom is doing with me. She would have died of loneliness if she were in a nursing home. Don't be afraid to call social workers (Hospice is a big help as well). An Alzheimer's support group really helped a lot as well. Hang in there. I have to take time for yourself occasionally OR I'd go insane.

Mine is 90. She started asking me to come home when she was 70-75 because they probably wouldn't live another year and needed help. I'm glad I didn't come when she first asked. My mother weighs 150 pounds and eats twice as much as I do. Her stats are good, but she walks very slowly, bent almost in two. Her mind and back make her totally dependent on others, meaning me since I'm the only one around.

JessieBelle how old is your mom. Mine is 79. She is 94 pounds. With her clothes on. Her dr told her she needs to gain 10 . My mother is frail. She walks slowly too , but no need for a walker.

Erin, you have the same limits as I've had for many years now. I have been waiting for things to change. I was 57 when I came here. I am 65 now. I do everything, but don't assist with toileting and hygiene. I knew the end point of my help would be when she can't walk, toilet, or bathe herself. I am not strong enough to help with these things, so she would need to go to a nursing home. When I started into this, I never imagined that years later we'd be pretty much at the starting point. The main thing that has changed is she has gotten much slower and is using her walker in the house now.

JessieBelle, I think that is why hospitals don't encourage their patients to walk around.Meaning to stop falls. Don't know what assisted living places or nursing homes would do without TV.

Annabelle. Do you live in the same house with her?

I've come to hate my mother she's using me and treats me like sh*t but I don't know what to do with her

Hi JessieBelle. You aren't wrong. For wondering how this stale mate could possibly end. I think those of us that are on call 24 hours a day, often wonder when we get a break. I told my aunt a few months ago, almost a year now, when my mom got diagnosed with MCI with Amnesic features , and prescribed aricept , that hey I'm 56. Not 36. And I'm not going to live for ever. I'll do this as long as I can. But not past that. And " that " for me is when she needs personal hygiene care or gets delusional. I know my limits. At least I hope I do. We are all human and I never thought in a million years , she would get this. Her dr saw an immediate cognitive decline 3 weeks ago. I think we need to accept we didn't ask for this, nor did they, but at least for me , having some boundaries , for my care degree, is helping. I'm lucky she has long term health care. This site is very helpful

Erin, I thought I was the only one thinking about TV and reduced fall risk. I've been caregiving for 7.5 years now. I figured that at some point my mother would fall and would need to go into rehab. That would give opportunity to change this stalemate that we are in here, so I could get some life back. Then I thought about how she sits and watches TV all day, so doesn't have much chance of falling. I know that is good for her, but it does mean falling is not likely an avenue for me to make changes. Bad me for thinking these things, but it has crossed my mind.

My French lessons help. An app on my phone. It can be any language. Just helps to not continuallly focus on my sevititude. Lol. If that's the correct word. I'm at a cross roads, because my mother is not totally vacant mentally. She still bathes, dresses, and because she sits here all day watching news, and rarely changes her routine , she is quite capable of not getting in a dangerous situation. Her short term memory is gone. She can't write a check, or even remember how to turn the TV on sometimes. And when that happens it's like a level 1 trauma. I can't leave her alone at night any more because she fell 2 weeks ago. Her dr. Suggested that when my husband and I go away for a break, that I have some one here for the night. It's certainly not as bad as it's most certainly going to get. I know what my limits will be and that is bathing, toilet issues , delusions. Etc and I have a plan. An beautiful assisted living care facility that increases services as they are needed. That helps a lot , to have a plan and a place I think is great. She has long term care and I am grateful for that. This site helps immensely.

We have to keep pushing forward, for our own sake. I try to do something different every day and force myself to be around people, even if it's just to go to the store... I also volunteer for a nonprofit that helps families in need with babies and children to age 5 (I can pick and choose the amount of time I help... or, don't go, if I don't feel like it...), but it's been a catalyst back into the normal of sorts... (especially, during the nice warm days). All this can distract me from the hardships that surround us.

Thank you Erinm60. I am very desperate and depressed by this situation. I appreciate your comments and will continue to read and utilize this site. I does help with the isolation and loneliness.

But you are right. It is h*ll. Heart to heart

Lol heart to heart. No seriously. Typo