What is the one thing that bothers you the most about caregiving?

Today it's the drama and the negativity. I’m an only child (practically speaking, my half sib is mentally ill/not able to help), and have a mental disorder myself that makes me prone to depression. I'm really struggling to find a way to be there for my (79, widowed) mom and my (81, widowed, childless) aunt without letting them pull me under. They both had cancer this past year, aunt now has heart failure. They have several elderly siblings in similar circumstances, and since they’re all relatively housebound, lonely and bored they call each other a lot to vent and complain about their health problems and how insensitive and selfish their caretakers (myself, my cousins) are. One of their siblings was put in assisted living by her children, it’s a very nice (and expensive!) facility in my opinion, but they’re all acting like she’s been put in prison. Shut out of sight and of mind by her loved ones, who put her there to get her out of the way, even though the kids live within 5 miles and visit often. It’s exhausting.

Both mom and aunt will also happily vent to me for as long as I will allow it about how awful they feel and how horrible everything is and how they're surely going to (have a stroke, develop more cancer, have a heart attack) any minute. It’s really hard - I do care that they’re sick and that they’re (angry, sad, resentful) they no longer have their health and can’t do the things they used to do. But it seems to me that by having such a negative attitude they’re making things worse than they even have to be. Both of them had nearly eight decades of relatively good health, despite my aunt smoking cigarettes for five of those decades - where’s the gratitude for that? No way I could ever say that, though, without an emotional outburst about my being, again, insensitive and selfish.

My aunt lives with my cousin, who I suspect would like to bring up the subject of assisted living but there isn’t any money for it short of qualifying aunt for Medicaid, and aunt will fight cousin tooth and nail due to the “prison” attitude. It’s cousin's choice to let aunt guilt her into taking care of her without any help, maybe I should take a step back and take a look at that for a minute. It would be a lot easier on us both if aunt had more people around and trained medical care. My own mom is not so subtly hinting she wants me to start staying at her house more often to take care of her (I live about 10 mi away and go over there a couple of times a week), even though I have a spouse who’d like me to be home/at work taking care of my other responsibilities as well. I’m not prepared to spend as much time at mom's as she'd like, and she has a controlling personality that means I’m not prepared to move her into our house, either, unless there’s absolutely no other option.  Despite having an advanced professional degree she retired at 55, failed to save any money to speak of, and spent lavishly. Now her venting also pretty frequently includes scenarios where she loses her house.  (Yes, spouse and I and cousin and even mom and aunt have discussed moving mom and aunt in together, but there are issues.  They adamantly don't want to live together, for starters - controlling personalities which actually they both have, aunt not wanting to give up her pets which mom would demand, cousin doesn't want to give up her second home in which aunt lives.  I have no idea if it's a tax thing or an insecurity with her partner thing or what.  Even if I were to threaten something dire if they didn't do it, there are also practical concerns - the city we live in has developed extremely expensive real estate/horrendous traffic the last few years, so it'd be hard to afford anything near where cousin and spouse and I live that wouldn't involve a hellish commute.  Spouse and I don't want to move since we'd never be able to afford anything like we have now, which we bought before the real estate boom.) 

I’m not prepared to exhaust our retirement account for mom's benefit especially since spouse and I are childfree ourselves and won’t have anyone to take care of us sans expense when the time comes. I really don’t know what we’re going to do, but one of my New Years resolutions is going to be a meeting with my local council on aging to take a look at the options.

Everything is made out to be much much worse than it is. If one of them has a sore foot then surely cancer has spread into it. If one of them is dizzy, it must be a stroke. I know it sounds almost funny when I type it out like this, but it is absolutely exhausting to be expected to stay ready for a crisis with someone needing emergency care virtually all of the time. There’s most especially no escape since part of the dynamic is mom calling to tell me she’s “so terrified about aunt who is surely going to go into the hospital any minute” because of (sore foot, dizziness, etc.) So I either hear about aunt’s problems from aunt herself or from mom or most often from them both. I’ve started avoiding their calls.

Worst part is, both mom and aunt have real issues - and I'm sure one of these days something serious really will happen, and I'll blow it off because they've cried 'wolf' so many times. I guess I’ll just have to deal with the guilt at that point. However, I’m slowly learning that too much time listening to either of them means I start really struggling. It drives me crazy that I can’t make them tone down the drama or be less negative or help me make practical plans or even acknowledge that any of this is happening. It’s looking like the only way I’m going to be able to preserve my sanity is keeping my distance… will that mean I have to put mom into a Medicaid nursing home eventually? Maybe so.

Thankful for this resource and for all of you who are suffering through similar circumstances, although I’m so sorry this is so hard for us all.  💗

@Rosemary44 - I am not laughing AT you, but WITH YOU, but THANK YOU SO MUCH FOR THE FOLLOWING!! I laughed so hard that my SIDE SPLIT!! I have had a migraine for a week because of the weather and the stress of caregiving, (98 yr old Grandma had a REALLY bad UTI last week and was looking for 'Mother', who died 42 years ago last week, and it went to hell from there!)...anyway, I saw your post about 'HHMMM, how did we get to this terrible place, and I read it as 'HMMMM how did those turds get there?' and I just could not stop laughing!! She always says, "Stacy, stop asking me questions you know I can't answer!" I say, "Well, there are only me and you in this house, unless you're thinking one of the cats left them in the bathroom - why they would do that, IDK, when they have a perfectly good litter box of their own???"

'I thought he was safe in bed. I went in to check on him and there was two gigantic turds on the bathroom floor right in front of the bowl. Hmmm, How did we all get into this terrible place? How do we get out of it and go on with our lives? Right this minute, if someone came in this house and said we’ll take him away, I’d say bye, bye and would you mind cleaning up the bathroom too?"

Now off to finish the last half hour of my 'day' job, and then off to sell some CBD OIL (my small business I'm trying to start), all while wiping poo from her butt because she consistently has e-coli uti's because she doesn't wipe it well enough for herself (and let me just say, I did not have kids, so WIPING A$$e$ is NOT SOMETHING I WAS LOOKING FORWARD TO at this stage of my life - 48 and single!)

Now that I've had some time to read some more of your posts, talk about being TRAPPED!!! I'm here with my 98 year old grandmother, and I work from home so I can be here with her because she's got mid-stage dementia, and she can't stay by herself. But we live in this God-forsaken small town that she has lived in her whole life and I ABSOLUTELY HATE!!! I tried getting involved with her church (I'm officially a member there, but it's so fake and just plain screwed up, it makes me physically ILL to think about setting foot in the doors...which, of course, she doesn't understand), but they were so cliquish that I couldn't break in. If you are not from this town, or marry someone from here, you don't exist. I've lived here for 6 years now - and I'm a VERY OUTGOING SALES-type person - and I have 0 FRIENDS HERE!! I DREAM of the day that she's no longer with us (not that I want her dead, but I can't wait to have my life back), and I'm selling my sedan car, moving to the beach, and buying a convertible. And I happened to walk in on a Joel Osteen show she was watching one day, and he said TO ME, because I KNOW HE WAS SPEAKING TO ME THAT DAY, that God's got a whole new life waiting for me, a new relationship, a new job, new friends, etc. I prayed that day and said, I HEARD YOU and I am just biding my time here...doing what I have to do for the most ungrateful person that ever walked the face of the earth, and one day, I will have a whole new life at the beach!! But for now, I'm trapped. She, makes too much on SS benefits to qualify for Medicaid (I need it for my own needs, but with the 2 of us, it's just out of the question) and there are no other benefits out there. We do have home health that comes out, and I pay the CNA who does the bathing extra to help with her laundry...but other than that, it's all me. I am blessed in that she does not have physical needs, other than just being onery, and she can be so hateful, and I already mentioned that she's the most UNGRATEFUL PERSON TO WALK THE PLANET!!! And I have a brother who is THE FAVORED ONE, but he's never around and doesn't help one bit...and no that misery loves company, but it's so good to know that I'm not the only one out there that has the same feelings about what I'm doing and why I'm doing it. I guess we do what we can, for as long as we can, and then we decide what's next. I haven't hit my tipping point yet - because for me to put her in a memory care facility, we would have to move out of the house that we live in together and we split the bills on, and I would be responsible for paying ALL the bills for a house in a town that I CAN'T STAND. I WON'T DO IT. So, I'm just not miserable enough yet, I guess. But, she's 98 - realistically, how much longer can this last??? I hate to sound cold, but CRAP! I've been doing this for 6 years...my entire 40's...how much more should I be expected to give up??? I'm just biding my time until I get to move to the beach, and I'll maybe get to have one of those hot-bodies as my view for the rest of my life (or the life that I can remember, lol! I hope and pray that I don't have her longevity genes because I don't have kids, and it scares me to death that I will grow old and be by myself and have no one to care for me like I am her...my ex was a P.O.S. and luckily for the child, we didn't ever have one, but not so good for my old-age outlook...but then I think, if HE has my whole NEW life planned out, then I'm guessing HE's got that part planned out, too, and I guess worrying about that right now is just adding stress when I don't need it, so I put it away in the box in my heart where feelings I don't have time to deal with go!)

Is it wrong to give up on trying to protect your parent from doing dangerous or irrational things? I think I have had it with my laundry lists of telling her what she should or should not be doing for her own safety and well being. She ignores me and "sneaks" behind my back when I am not looking so, she isn't completely clueless. She admitted to me yesterday that she "waits till I leave" to do certain things. That was it for me. I decided screw it, you want to behave like a rebellious teenager, go ahead. I don't give a damn anymore. If she gets up on a chair with her bad leg to "dust something" and falls, so be it. If she decides to use a knife instead of her pruners in the yard and cuts herself, so be it. I am tired of trying my best to keep her safe only to have her snub her nose at me and totally ignore my repeated requests. I have saved her life at least 5 times already (mostly because of her own stupid behavior) stuff that could have so easily been avoided, so that set me on a course of trying to instill safety in her but what do you do with a Mother who's been in denial her whole life? About herself, her children, etc. She is the great pretender, pretending everything is fine and nothing is wrong with her. She doesn't need to wear a safety device around her neck, that's for old people, and really not fashionable to go with her carefully thought out ensembles. She should be alright climbing up on things with her bad lymphatic leg, no problem! She refuses anyone coming into clean for her so she would not feel inclined to do these things, but she would be fine with me doing all of it for her. Heck, I do everything else for her, why not maid service as well? Her obsession with her own vanity is mind numbing. I am giving up. I will be the clean up crew so to speak, meaning, I will deal with the fall out of her idiotic behavior, and when she seriously hurts herself, I will shrug my shoulders and say, "I have honestly done everything I could, she chose to ignore me." You cannot watch them 24/7 and she does not need that at this point. I am steps away should she need me but I am not going to bother telling her what she should or shouldn't be doing anymore. God I want my life back. Please keep in mind, this is just venting, I am not asking for advise, I am trapped in my situation and cannot afford to put her somewhere or hire outside help. Thanks for listening to my rant. Oh, and I am tired of the guilt trips and the crocodile tears that come when I get upset that she is doing something she should not be doing. She "knows" because she admits she does things when I am not looking. I feel manipulated and taken for a sucker.

Hang in there Rainey69.....cuz only the "best" is yet to come. So glad that you have reached the point that you have in trying to get your Mom to "do the safe thing" only to have her not do it. Most of us have reached that point. When your Mom (or my Mom) get stubborn and flaunts their stubbornness in our faces by doing exactly what they know shouldn't be done...then...and only then...is it time to let the chips fall where they may. I know you didn't ask for advice, and I'm not giving it to you. But I am patting you on the back for being so intuitive as to what most of us have already been faced with and done what you have done. Let the chips fall where they may. Kudos!

Nebbish,
Thanks! That really helped me to see it isn't just my Mom ignoring my pleas for safety and such, it is hard to see that when you grew up with a Mom that layed guilt trips to manipulate you into doing what she wanted. Also, add the Queen of Denial to that and you have why I question her sincerity in what she does and does not remember or chooses to ignore.
The "best" is yet to come?!?!? I cringe seeing that because I am afraid that statement is dripping with sarcasm. LOL!!!! Is it???? Oh please, even if I dread hearing it, please warn me of what that means! I would like to be mentally prepared! What is next????? 😳

Rainey69....
By saying that the best is yet to come, I'm referring to the emergency room calls; the broken bones; the "why is God doing this to me", and the falls that, of course, are not her fault. The excuses for why she fell; the reasoning that seems to explain it all and yet is so irrational. So many arguments that my Mom and I have had just because it was an accident and not a fall. Huh? Even when you have the proof of hospital bills and her scars,....that's not enough and it didn't really happen. Take pictures, if you can, in the ER. I've, also gotten use to using the sentence....just because you can't remember, Mom, doesn't mean it didn't happen". It's a long, irrational journey....but you can do it. We all get to the point where it really doesn't matter whether they believe you or not.....it is what it is. And, if Mom starts to lay a guilt trip you, Chicky, you just pull up your big girl panties and go home. Hang in there....you can do this.

LOL!!!! Nebbish, thanks for the great laugh! Truth is, lots of that stuff has already occured. At one point, I was starting to recognize the doc's and nurses in the ER because of Mom's "accidents" and I told her they were going to think I was abusing her! LOL! I figured out why she was falling however and corrected the problem. Not to say it won't ever happen again but she has seriously low blood pressure and a bad habit of not being hydrated so when she was getting up too quickly, she was passing out and inevitably, on the tile floor. Yeah I took pictures and everything. I even keep a notepad for any significant stuff,I write it down. Well, I suppose I am relieved that it isn't anything new that is "to come" unless she gets to the point where she can't dress, feed, shower, etc. I am really dreading that one. And yeah, when she tries to guilt me now, I do leave! 😉 Thanks again for a great laugh, sometimes that is just what we need!

Hi Marialake, my feeling is isolation, my 94 year old father still is trying to control me. The area neighbors are doing what they can to include me when they go out and attend functions. I am not allowed so it is just me and him. There is an issue if I even go to the store. He told me the other day that I thought he was losing it. I just couldn't respond, it makes matter's so much worse

Lara, just because your dad "wants" to tell you not to go out does not mean that you "can't" go out, right?

You're an adult. He's not allowed to "not allow" anything that you do on your own behalf.

Can you see your way clear to getting out for an hour a day, just time for you? To go for a walk?

That is a tough one. I am probably just as frustrated by all of the advice about what to do from outsiders who don't see the whole picture. Of course, a lot of people think that I should just put my 89-year old father in a facility...if it were that easy, don't they think that I would have already done that?! He would be difficult to place because of his social behavior- he has nearly gotten us kicked out of restaurants by rudely interfering with the other diners' meals because he can't restrain himself from telling every joke that comes into his head, some of which are in very poor taste. If he were in assisted living I don't think that they would tolerate his behavior. His issues are mostly mental, not physical. He would probably be in very good shape for his age had it not been for a couple of decades of heavy drinking which led to a fall and head injury.

Outsiders don't seem to have any concept about the costs and legalities that can come into play. I have heard that it can easily cost between $90,000.00-$100,000.00 per year to be in a facility. And many people say that the levels of care are very poor, not enough staff. My impression is that putting the elderly in facilities isn't being done as much as it once was. The main nursing home in our town, where I had been employed back in the 1980s, ended up closing earlier this year due to low occupancy. I was disappointed because I had been considering the possibility of working there again after retiring from my regular job this year.

You Should feel guilty. Take some time and learn about her disease. Learn how to communicate with her. Get some help. Let her know you love her (You do, don't you? Appreciate the times when she smiles. Go to the website for Rick Law at Law Elder Law. He has a whole library of free information. And remember, she is not the battleax. Her disease is.

Genesis1,
Who should feel guilty?

I think he's referring to the OP Rainey. And it would probably be best if we all just bite our tongues and move on without comments.

Cwillie,
👍
Your Charlie Brown tree is great! Just finished putting Mom's tree up and decorating it and the rest of her place with all her cherished Christmas treasures she has collected over the years. 🎄

I hate that attitude too, my mother never showed me sympathy at any time in my life, I was a sickly young person and in pain a lot. Mother was annoyed by it more than any other discernible emotion. Daddy is none too soft hearted but was/is a lot kinder than mom. They are in their 80s now with many ailments. I do what’s right and see about their physical and mental needs but I admit I don’t have much feeling to offer them.

The loneliness is dreadful. Knowing out side the boundary walls of Your Home the World no longer exists, simply because Your Love One Who You Care 24/7 X 365 has become Your World. Nothing else matters. Some times You Cry quietly and wonder WILL I EVER GET MY LIFE BACK TO LIVE IT FOR ME, oh but You will Crater much sooner than You may think because Death will come like a thief in the night, and then You try to deal with the grief, the emptiness and that loan some void which seems like it lasts forever. At night You feel afraid because this is the first time in Your Life that You are alone, and Youl notice the deafening and horrid sound of silence. I have asked myself that Question, Knowing how demanding and tough being a full time Carer is " Would I do it again ? Yes I definitely would, because when You really love the Person Who You Care it isn't a sacrifice but rather an honour and a privilege to share in that journey, and to ease the suffering. I know that I have an Angel in Heaven now Praying for me, and guiding me and I believe that I will be with Mom again. Rest In Peace xx

6k, that is enough money to hire someone to care for them. You need to get back to work for your own future. Your SS will depend on your earnings. This would give you the opportunity to set boarders with parents. Explain you will be working full-time. If they need help during the day then they will have to hire someone. This includes meals. It they have appts, they will have to find ways to get to them. Being a new job, you won't be able to take time off. They will need to pick a day for shopping and that is the day you will do it so they need to make lists. If they complain about what u do for them, tell them to find someone who can do it. You are not their slave. Research all the services in ur area. Start with Office of the Aging. Give them a list. Don't give them the new works phone no. Call them on breaks or lunch to make sure all is OK. If they start on u, tell them goodbye. You deserve respect. Remind them they have other children that can and should help.

Are you all blind to the abuse and destruction being heaped on you. When people act this way, remove them from your life. Put them somewhere safe where they will be cared for so you can live a peaceful, normal life. Don't give them to destroy you by doing nothing. The past is gone. What they may have once been is gone. They have turned into monsters and I don't think you want monsters around you.

@Riley - thank you for your comment, but you are totally discounting what we are all doing here! I have said this before, if you don't have something nice and supportive for those us who are going through what we're going through, it would probably be good for you to keep your opinion to yourself. Most of us would not have CHOSEN to be where we are, or the folks we are caretaking for, but that is just the way things have shaken out. Please don't make it any worse for us by leaving comments that don't help anything.

True Love Endures All~

Riley has been advising us to "save ourselves" from our unpleasant loved ones for a long time now and isn't likely to change her tune. There is really nothing wrong with the message to place someone into a facility, it is the way it is delivered that is so offensive. It seem that regardless of who they once were or how close we might have been in the past "What they may have once been is gone. They have turned into monsters....." And it seems at least 4 people agree with that.

My parents are both in a memory care... and I still don't agree with Riley.

I cared for them for over 5 years before that time...and even now.. I didn't just stick them in memory care and walk away.. The caregiving for me is different.. but I still care for them and still consider myself a "caregiver". I still love them even though they are no longer who they used to be... I still visit them, see to it they have everything they need, do all their financial stuff, will still have to step in when things change for them and they end up in a hospital or rehab. I am still responsible for them.

I wouldn't say my life is now "peaceful" or "normal" .. unfortunately. Maybe less stressed then before ..

Dear KatieKay,

You are such a good person for caring for your parents and being their advocate even in memory care.

I know its a deeply personal decision how we manage our parent's care in their golden years. We all have such different relationships, personalities and personal tolerances.

In my culture there is an expectation that adult children care for their elderly parents and grandparents. Its a tough road and I'm not saying its easy for any of us. I'm only human and I had anger and resentment about my daily routine. But like Johnjoe said, I failed to realize how horrible I would feel in the face of grief. I didn't realize how much I had invested and now I feel so empty. Trying to go forward the best I can.

@cwillie - thanks for the clarification. The "message" is what offends me. I don't understand why Riley is here if he can't say something supportive, but I guess each is to his own. I just really enjoy being here to read stories and questions by people who are in the same situations that I am, and I get more out of it than I do someone telling me I'm stupid or calling my decisions wrong, or my family member a monster. It's not who she is, it's her disease. It's hard to remember that when I'm in the throws of an arument with her over why she didn't eat her supper, but it helps to know that somewhere, out there, there is someone on here, going through the same situation as I am. That somewhere out there, on this blog, there is someone else wiping their family member's butt trying to keep them clean and healthy (something I never had to do bc I wa not a parent, so IT IS REALLY FREAKING and GROSSING ME OUT)...

Every situation is different. Everyone is different. Every caregiver has a breaking point. 

I wouldn't put mom in a facility now, though my life is constrained. Her issues are severe mobility problems and vascular dementia, but I'm fortunate in that she's finally agreed to hire help. 
She is fading, and very emotionally needy, but she is still herself, and I will keep her at home as long as I am emotionally and physically capable of it, along with hiring more help.  Basically, she is in a nursing home and I and the wonderful aide I hire are it.

It was very different  when my aunt's husband's Alzheimer's progressed rapidly. He became violent, combative, hit her, and tried to sexually assault her. She cared for him as long as she could, but when her life was literally in danger, he had to go to memory care. He was no longer himself, and though I wouldn't call him a monster, but the victim of a horrible brain disease, the behavior was monstrous. In his case, a facility was the only possible choice, actually not even a choice.

It sounds like your mother is a narcissist. That is maybe just about the highest caregiving challenge. Maintain your boundaries. Take very good care of yourself. Do not let her get to you. It can be done. Don't even try to get her to care about you. She will not do it. I offer you hugs and all the support I can. This is tough. Hang in there. Hugs..

(posted in wrong thread - sorry y'all!!  XOXO)

Not being appreciated and listening to complaints. Unfortunately I feel resentful towards my Mom & disabled brother. I am doing this alone. I packed them & moved them to Assisted Living, then unpacked them. Now I'm dealing with multiple doctor appointments. I put 94 miles on my car yesterday taking brother to appointments. Mom tends to be hypochondriac so it's difficult to sift through what is real & what is just her way of getting attention.

I also had a situation where I punctured my forearm with cut glass while packing for them. I was holding my bleeding arm with gauze & I asked her to get the ace wrap - which I had packed into a container in her bedroom. She stood there & argued with me that the ace wraps weren't in her bedroom while blood is dripping off my elbow. I lost it & yelled at her.

Sometimes I just loose my patience because I am taking care of 2 disabled people without alot of thank yous until I remind them that maybe they should appreciate all I'm doing for them.

That's my confession.

My Mom's stool comes out big and round. It clogs the toilet and won't flush. I have to put on a plastic glove and pull it out by hand so the toilet will flush. It is those times when I feel closest to my Mom.