How do I get out of feeling lost and unappreciated by my parents and siblings?

Hi Everyone, and thank you all for your answers and concerns. I've been pretty sick for the past month with some sort of GI Issue. Went for about a week without being able to eat or drink anything. Right now I'm on the mend, and since it's the weekend, my Dad is home so I'm spending the day in bed resting. I'm going to try to get up a little later and get something accomplished. Last evening my Dad was heating leftovers for dinner, I made a suggestion for an addition that usually makes the dish taste much better, went to my room to lay down, and that was the last I remember till about 4 this AM. I took the Dog out, and got back in bed. It's now 2:30 PM and I'm still feeling tired so I'm going back to sleep. The dog is already dreaming laying beside me.

During my illness Mom pretty well left me alone, commanded to do so by my Dad. But she did have her days. Since I have control of her medications, I must get them out twice daily, morning and evening. My Dad and son helped during the worst of what I had. I didn't want to touch anything for fear of contagion, so my son filled her weekly box when my brother didn't show to fill it, and he took care of my Dad's as well. I manage all meds in the house, even the over the counter stuff, buy the Dr's orders, Mom is not to have access to anything. When this happened, she took it a lot better than I thought she would have. But anyway, Joseph, you are very lucky, you FIL responded to your requests. A lot of us here have parents that will not respond to requests. Normally, and this includes my Mother, they are mean, nasty and hateful and will do anything to trip up a care giver. This is so with my mother. She suffers from Dementia and Alzheimers and has good and bad days. On good days I can tell when she is just being mean, and I respond appropriately. On bad days, I try to guide her to a chair to watch TV, and pray she falls asleep. She will follow me around and pick me to tears even though I know she does not understand, nor remember what she is doing the next day. It hurts, it is tiring, and at times almost unbearable.

Most things I can deal with to an extent, but there is one area that I know she is cognizant of but will not change. We have two bathrooms in our house, she has her own in the Master Suite (no we are not in a big house, it's just a little 3/4 BR) but she insists on using the "public" bathroom that my son, myself and the public would use if necessary. She has MAJOR bowel problems, but will stand and watch a TV show until the shit is running down her leg. It STINKS it is NASTY, and the tiny napkin that she wears does not contain the mess, so we are stuck with shitty underwear washed out and hanging over the tub lip, and 100% of the time, I step in shit when I walk in to use the facility myself. The dog just loves to eat the stuff (UGH). But she will not wipe down the potty that she has smeared with crap, and she is fully capable of cleaning it up, she just expects me to. Mostly this is the major thing that causes problems right now. I make a supreme effort (stay in my room) to stay out of her way, and check on her through out the day to make sure she is OK. My dog is a Service Animal that trained herself. And she protects me, so when Mom starts to go overboard, Princess lets her know to stop. Princess will stop me as well by jumping up and diverting my attention. This usually stops the problem.

A while back Mom did a room invasion and would not stop. Princess actually bit her and tore her blouse. She drew blood pretty good but the wounds weren't really bad, but she just would not quit. Throwing my things around, and being as nasty as she was when I was growing up and could not do anything to stop her. I called the police. When they got here,we both got the lecture, I got told to settle down, and she got told that as long as I pay rent, she's to stay out of my space. I also got EMS to deal with the bite (no charges were filed).

Yep, so I'm here pretty much 24-7, and this is the best outlet I have to get rid of the venom that builds over time. I try to read at least once a day, and answer what I think I can based on my experiences thru life so far. I feel for each and every person on this site and pray that we can all get through this and come out at least partly sane on the other side.

My only wish here is if I could find a few locals to physically meet with to make a connection with, and, if necessary run to their aid if necessary.

Well that's enough for now. I've written enough for now, I'm sleepy and need to rest.

Be Well - Sue

jeanne, thank you for your response. I am very grateful to have found this site. I think the hardest thing is not having your own family understand. I am going to try to start getting out more. I do go to a pain management Doctor and am thinking about getting a pain stimulator unit but I have to try to find someone to drive me. I don't think my sisters and brothers will realize how it feels until they go through it. One of my sisters has a daughter with cerebral palsy but she has a husband, son & sitter to help. I even did it for a while until I had to tell her it was too much. I think she was upset because she stopped helping me with our mother. Also when I try to go out without my Mom she accuses me of leaving her behind. But I know things need to change. I know it's hard for my mother to not be able to get around like she used to. And how can she criticize or pick on anyone else when they're not around ??

Sue and emmerance1967, I'm sorry if I sounded insensitive to your pain. It is easy to say "go kayaking" but far less easy to do it if you are in pain! For the last few weeks I've been dealing with sciatica pain. I have the benefit of knowing (hoping!) this can be controlled. I've thought how awful constant pain is when there is no cure on the horizon. I don't mean to compare my temporary leg pain with your long-term overall body pain, but it has given me a glimpse of what it must be like for you.

I hope that you are both doing everything you can to get a break from the pain. Since anxiety apparently is a trigger or a worsening factor, that includes minimizing your caregiving stress as much as possible. I'm really glad you are in therapy, Sue! I hope you both have good doctors who are taking this seriously and doing everything possible to minimize the pain -- and I hope you are following their advice.

Even without being caregivers for difficult women, your own health problems get in the way of "having a life." That is still my wish for you ... that you can grab every chance at a "normal" social life and make friends and have a life. I'm sorry if I sounded unfeeling and unrealistic about your fibromyalgia.

Good luck to you both!

HI SUE.
WOW! DO I FEEL YOUR PAIN.
I HAVE FOR THE LAST 2 WEEKS HAVE BEEN CARE GIVING FOR MY STEP GRANDFATHER. IT HAS BEEN A NIGHTMARE. HE TALKS AT ME. HE DOESN'T TALK TO ME. HE CARES ONLY FOR HIMSELF AND HE NEVER SAYS THANK YOU. THIS IS THE FIRST TIME I HAVE DONE THIS SORT OF THING. I COOK, MAKE SNACKS, CLEAN A LARGE RANCH STYLE HOME. I CLEAN HIS HOME TOP TO BOTTOM. AND I DO HIS LAUNDRY AND FACILITATE HIS MAIL AND MEDS. I HAVE LITTLE TIME FOR MYSELF AND I DON'T GET A BREAK BECAUSE HE TENDS TO LOSE HIS BALANCE AND FALLS SOMETIMES. I CAN'T LEAVE HIM ALONE. HOWEVER, I WOULD LIKE TO SUGGEST THAT I PERSONALLY FOUND A WAY TO COMMUNICATE TO HIM TO REFRAIN FROM TELLING ME TO DO SOMETHING INSTEAD OF ASKING FOR SOMETHING INSTEAD. I SIMPLY READ AND RESEARCHED USING THE INTERNET ON HOW TO BE ASSERTIVE WITHOUT CAUSING RESISTANCE OR CONFLICT BETWEEN THE TWO OF US. I TOLD HIM USING WHAT I READ ABOUT ASSERTIVENESS THAT EVERY TIME HE DEMANDS SOMETHING, I RESPOND BY ASKING HIM TO USE HIS MANNERS WHEN HE NEEDS OR WANTS ME TO DO SOMETHING FOR HIM. IT WORKS! HE EVEN SAYS PLEASE SOMETIMES!!. I THOUGHT I WAS GOING TO FAINT WHEN HE STARTED TO COMPLY AND ASK FOR THINGS IN A RESPECTFUL WAY. TRY SETTING SOME BOUNDARIES FOR YOURSELF AND COMMUNICATE TO YOUR FAMILY WHAT YOUR BOUNDARIES ARE. ASSERTIVENESS AND DIPLOMACY DOES WORK. YOU WILL MOST LIKELY HAVE TO REMIND THEM THAT YOU EXPECT TO BE TREATED RESPECTFULY AND YOU WILL NOT COMPROMISE THOSE BOUNDARIES IN THE SAME WAY THEY EXPECT OTHER PEOPLE TO RESPECT THEIR BOUNDARIES.
I HOPE THIS HELPS.
YOU ARE NOT ALONE.
GOD BLESS YOU AND HANG IN THERE SUE.
IT WILL GET BETTER IF YOU STAY CONSISTENT WITH YOUR EXPECTATIONS.
SINCERELY,
JOSEPH

I am so glad that you have posted this question. I had to cry because it felt like you were writing about me. I also have fibromyalgia & live with my Mom and try to take care of her. What no one understands is that it's hard to find a hobby because the pain consumes your life. And we want so desparately to have a break from the pain, let alone from someone criticizing you. And yes I agree, even as much as I wish my mother would change, she won't. She has always been the type to "tell it like it is". And yes, I always get told my hair is too straight , why can't you curl it, etc,etc. I never feel like I can ever get my mother to love me but I think maybe in some way she is always unhappy and projects it out. I think we have to love our self enough to know we are doing our best under hard circumstances and remember to take time out for us. OMG, I wish I would have been given $50, I would have taken it and ran (well not ran but walked very fast) out the door. :)

Sue, it sounds like you're just TIRED. I know when I get physically tired, everything is out of whack. I either get mad or cry or laugh at the drop of a hat. Nothing is right, everything is wrong and it's because I'm TIRED. Maybe it's time to hire some outside help a few days a week, so you can free yourself up? And speaking as someone who also had hair that long at one time, maybe it's time for a makeover too. I know that when I had long hair, it meant that I hadn't changed anything about my appearance for a LONG time. What I needed to do was to update my looks, and it started with my hair. If you decide to splurge on yourself and change things up, then donate your hair to Locks of Love while you're at it. What I'm saying is, you need some R & R. Get the 'rest' then go for the 'recreation'. But do it soon.

Sue, I am so glad you are seeing a therapist. I hope that will help you through these tough times.

I am not a therapist, but it seems to me you need to get a life. Your parents are in their mid 80s. They may be around another 12 to 15 years. Do not wait that long to begin rebuilding your own life.

Start small. Be mindful of your own health limitations and your caregiving role. But start! Join a book club. Buy a kayak and sign up for local water events. Take square dancing lessons. Be a volunteer teacher's aid and read to young children. Take all the cooking classes offered by Community Ed. Do something you will enjoy and that will put you in contact with other adults. You don't have friends? How sad. But that is not a permanent condition of your life unless you let it be.

Take that $50 and think up something fun to do with it. Get a manicure or a pedicure. Spend the afternoon shopping and splurge on a special summer shirt that will always remind you that your dad cares. Or find a hand-crafted hair ornament for your beautiful long hair. Go to a casino. See a movie -- or better yet, a live play. Do whatever YOU consider fun. And then plan ahead so that future outings are not only fun for you but also put you in touch with other adults.

Isolation -- especially being isolated with a demanding mentally ill parent -- is not good for your mental or emotional health, as I'm sure you know. Get out as often as you can. Hang out with other people. Don't worry that those people are not your "friends" -- that can come in time. For now it is enough to be with other people.

I hate to be one more of those people who tells you to be quiet in the face of your mother's picking on you. Since she has dementia it is probably not realistic to think you can change her or reason with her or teach her new behavior. You might as well save your breath and be quiet. But for heaven's sake, that doesn't mean you have to do what she says, or to take her criticisms personally. Her brain is not functioning in a healthy way. She can't help it, but you can help your reaction. Cut your hair? OMG ... I hope you don't seriously think of trying to placate her this way again! What would happen next week when she starts complaining that you never should have cut your hair? Pleasing your mother is an impossibility. She doesn't understand this, but you can.

And being "quiet" doesn't mean you have to sit there and take whatever she dishes out. "Mother, you seem a little upset with having me with you right now. I'm going to my room and read for a while. I'll check on you later and maybe we'll be able to enjoy each other's company then."

And then there is the ol' try-to-redirect tactic. "I like my hair this way, Mother. I really like your hair, too. Remember that time you let your hairdresser talk you into a perm, and your hair was an awful shade of burnt orange for weeks? I love the soft gray it is now. I think you might look good in pastels now. Should we go shopping for a soft peach or mint colored robe, and see?" (I.e., change the subject. Stop talking about your hair and start talking about housecoat colors!)

It is OK to have a pity party for yourself once in a while. It is even better to take charge of changing one or two of the pitiful aspects that you can do something about.

Keep in touch! Let us know what you did with the $50 from dad. Let us know how your therapy is going. Talk to us about how you are dealing with your mother's dementia. We can't offer you a literal shoulder to cry on, but we care about you!