Hi AC Forum,
I feel like I run the gamut of emotions on a weekly basis. I think that is a difficult side of this caregiving. Not being able to fully satisfy - or not being able to satisfy for what should be a normnal period of time. And on the same token know that each day you go down this path you just running to the finish line.
It's the craziest and horrible life as I am not able to live my life, yet I have a hard time thinking of my mom living with less. Also not being the face of which she says to at first seeing her and asking her how she is, "Better now that I see you!" Knowing that you are the comfort in their sight. Yet what it takes from one feels enormous - emotionally, monetarily, physically.
How are you doing?
LastOne
I can relate to the fatigue and overload feeling. I do not have an outside caregiver, Mom would run out of money quickly and I am far from wealthy enough to afford it. However, I also notice that I am also going through (my pre-change of life) which has greatly affected my energy, mood, occasional hot flashes and lots of other annoying things. I don't know how old you are but if you haven't gone through that lovely stage yet, could be part of what is making you even more miserable than you would be under the already trying circumstances you are in. I am often wiped out with crashing fatigue, my normally clean house gets put on the back burner because my energy literally goes to zero. This has really ramped up in the last few months. My emotions are much higher now, like constant PMS symptoms, crying more, irritated easily, overwhelmed. Sometimes it's hard to figure out because we are living stressful lives with a lot of responsibility so is it caregiver burnout or the change of life or (gulp) both! I know I am dealing with both which makes it so much worse. I remember when my Mom went through it, she was working full time as an RN and raising 4 kids still. She would freak out over the mildest things and us kids would be looking at each other like, "What the ????" Totally over reacting to stuff, crying, etc. We finally figured it out. I cannot take hormonal pills because I get even more unpleasant side effects so I just have to roll with it and pray to God it does not get drawn out over several more years. I loved to garden, now no energy, any chore I must do, I get wiped out afterward and my body hurts for it. I must be careful what I decide to take on now knowing the price I will pay after. Doesn't make the caregiver responsibility any easier and you find yourself wondering how much longer can you keep this up, right? No breaks, no vacations, just a never ending list of "gotta do this and gotta do that." I joked with Mom that I wish I could be on an Ativan drip. Hang in there and if you have already gone through peri or menopause, forgive my long winded guess. I can't think of a more trying time to go through the change than having to be a caregiver to our parent at the same time!
I'm actually on vacation this week. Vacation just means I'm not going to work. I'm at home. I can't afford a vacation nor could I go without having to take my mom since none of her other living children would take her for me. So, I've been sleeping all week, when she sleeps. That's vacation for me.
I never dreamed that my mother's personality and abilities would change so much AND I'd be her lifeline.
Longer ago than I realize(ed), Mom was deliberately covering up and whitewashing her early issues. As mom's undiagnosed disorder progressed, some of her weird accounting was "actually" true in her mind.
I mistakenly thought I was dealing with a competent (albeit quirky and increasing self-centered & difficult) adult. That ship had sailed.
Mom and I were living in 2 different worlds -- in every sense of that phrase -- and it was all on me to adapt to her world. She sure as h*ll wasn't adapting to mine. Couldn't if she wanted to.
We caregivers are constantly playing offense AND defense in someone's else's alternate reality. It creates a stress that we can't "leave at the door."
[And no, I didn't live with Mom. So technically I'm on the wrong thread. But thought I'd chime in.]
Just remember to cut yourself some slack dear, none of us are perfect. I grew up with the Irish Catholic guilt so it's kind of a way of life, LOL! Just a bit of perspective and empathy can get you through rough spots sometimes.
My kindred spirit, you just nail how I feel and say it as if we were experiencing the same life. My Mom can't understand why I hate going shopping, it seems like everytime I leave the house, gotta go to the darn store for something. Food and drugstore for Mom, food and petstore for husband and I, food and drugstore for the little lady I do part time caregiving for, it's never ending! What an exciting life we live, the envy of all our (used to be) friends. They are out going to shows, trips, wine tasting, enjoying their lives, and we are at the grocery store, AGAIN! Woo hoo! Oh, and AMEN about the world going goofy, talk about the constant Twilight Zone seems like the new norm. I feel so old saying that but jeez, it really is getting so looney.
A baby is so much easier than an adult! A baby is free of adult responsibilities, money, property, possesions, they are growing stronger and healthier and learning new things. Your parent has property, money to now watch, protect for them, pay their bills, they are going the other direction. Their bodies and or minds are failing, they are much harder to dress, give baths, transfer on and off toilets, chairs, beds. Makes a baby seem like a cinch! I decided not to have kids, because I did not want the responsibility. Also, I remember clearly the h*ll Mom went through with the 4 of us as teenagers. No thank you!!!! It was mayhem in our house growing up. Now my brothers are M.I.A when it comes to assisting Mom, so it's all me. However, they are sure to paint me out as the bad guy because Mom chose me to be her caregiver, they have no clue what life is like with her now. Guess there is another reason I am glad I did not have kids, I'd be bouncing off the walls in a rubber room now when the men in the white coats came to get me! LOL! I know there are caregivers doing both, God Bless them, I don't know how they manage it all.
Sleep well... 💓
🐠🐠🐠🐠🐠🐠🐠🐠🐠🌴
I think dementia is indiscriminate, kinda like cancer and some other awful diseases. No, we did not give them dementia but I am pretty sure it's nothing they would have signed up for either. Yes, we feel guilty, and I am sure it's partly because we remember all the things they did for us when we kids and even as adults, they make sacrifices when we need them. No, they aren't perfect, they probably made mistakes, just as we do. Now, we care for them, we get frustrated, maybe lose our composure from time to time. We feel guilty. Deep down beyond the frustration, we know they can't help their behavior. We have good days and bad days, just like they do but in different ways. Somedays we don't feel like dealing with helping our parent by repeating things over and over, watching them become more helpless and dissapearing before our eyes......it's painful. Somedays, you are blessed with a little more clarity from them where you catch glimpses of who they were prior to dementia. Good days and bad for both of us.
We feel trapped and unless we are wealthy, we are. We cannot afford to bring in outside help for respite or parent does not want it. We feel robbed of freedom, our careers and many other things. It's easy to feel upset and angry and it is not wrong to have those feelings. I really do understand. I got upset with her today for her stubborn, spoiled bratty behavior because I wanted her to quit relying on pills to go to the bathroom without difficulty, she rebuffed. Just trying to help. Breathe. Tomorrow is another day.
I make most of her doctor appointments, schedule transport for them, pick up her prescriptions, try to take her to stores (when she feels like going, then when she doesn't she gets mad when I can't take her) My brother lives in MA, he is supposed to be driving down her to get her for a couple of months, which is appreciated. But, he doesn't completely understand what I deal with. I have told him but he doesn't seem to believe me. She bad talks his wife (in my opinion, for NO reason, other than she is not happy unless she is miserable) She doesn't like my husband either.
I love my mom but I can't stand how horrible she can be. She has a parrot that is not in good health, she doesn't have the money to take him to the vet so she agreed to let me take him to a parrot rescue. At the last minute she changed her mind. I was very upset over this and she said he would die in her house because only she can take care of him and she didn't care if I never spoke to her again. That was pretty hurtful. I have done nothing but try to help.
I am bitter and angry that I am dealing with this. I work full time, I have a bad back and two years ago my husband hurt his back at work. He is dealing with worker's comp, and she yelled at him and told him he needed to get a job...which he can't of course. She was just recently at the hospital (she was fine, I think she is trying to find excuses for not going to my brother's for the summer) and she called me saying how horrible everyone was to her at the hospital. This is the same no matter where she goes. She makes everyone miserable. I am ashamed that I feel this way about my mother, but I can't keep dealing with it. I can't leave, especially now with my husband not working.
I am so tired of dealing with everything alone. My husband is tired of the way she treats me, plus he has to stay home and listen to her every single day.
If you are all financially independent, why isn't your mother taking care of her own needs and living either by herself with assistance or in a facility?
No, you can't go back, as you write, but why can't you go forward to a different and better way of life?