I am tired, even when I'm when wide awake. It's the kind of tired that seeps into your bones. I am not in physical pain but I feel like everywhere I turn, I am disappointing someone. My mother lives with me and is somewhat independent but not very. I feel like her personality is changing and she doesn't see it. She is in a lot of physical pain, diabetic, arthritic, and early stage dementia. I feel like she is extremely critical and constantly focusing on things I 'do wrong' or could do better but doesn't see any of her own issues. If I bring them up, she says blames her physical problems. I get that she is in pain and it's hard to know that you may be losing your control of your mind. I do not think she gets the responsibility she places on my shoulders every single day.
She can walk extremely short distances and occasionally does dishes, a light cooking of a meal, or folds laundry, everything else I do. I schedule her doctor appts and make she sure gets to them, I drop her off at the door of the clinic and push her in a wheelchair all the hospital, I do the majority of the talking to her doctors, I park her at the door of the clinic and go get the car. I carry her purse when she walks in and out of the house to the car, I back into the driveway so that she can get out on her side. I go to the store and get all the food, I make sure she takes her insulin, I pull her pants up after she goes bathroom because she can't reach behind her. I do all the laundry, I carry everything, I make sure her meds are filled and picked up. I make numerous phone calls on her behalf every week. I do all the shopping. I make sure all the bills are paid.
I listen to her cry when she is in pain. I listen to the same stories over and over and over til I can repeat them by heart. When she is searching for a word to say, I help her figure out what it is. I answer the same questions over and over. I remind her where she is, who is with her and what is actually going on. I calm her down if she has a bad dream. I make sure she wears her seatbelt in the car and I make sure the doors are locked because she occasionally tries to open the door when driving, I watch where she puts her hands in the car because she will occasionally grab the gear shift and yank it, I make sure she turns the car light off when she gets out because she always turns it on and forgets to shut off and it will wear down the battery.
I try to be sensitive to her feelings and not make her feel guilty or that she is limited or that I don't trust her. I try not to burden her and handle things myself. I listen to her talk for hours when I just want some silence. I am sitting here crying silently because she is asleep on the couch and I don't want her to wake and ask why I'm crying. I feel like i am watching someone I love die slowly and I feel guilty because I just want some peace.
I feel like all I do is listen to her talk about her feelings and I have to stuff mine in. If I ever complain about her she will say something like 'well maybe I'll be dead soon and you won't have to deal with it anymore'. I told her I thought she needed a friend or some other than me to talk to occasionally, one of her sisters or someone who is also old and in pain or dealing with the same health problems. Someone to complain about me to or just share with, I feel like she is lonely and putting all of her needs on me. Even all her conversation needs!
There is a tone of implied criticism in many things she says, maybe she doesn't mean it to come out that way but it does. Like yesterday, I was worried about something and it was like she was angry that I'd be worried and she wished I knew 'my rights' and didn't get upset. It was like she was implying it was a failing on my part to be worried, even though I have been through similar things before. Then there is the outright criticism of all the things I don't do or how I don't understand what her life is like. I know almost every facet of this person's life, I can almost tell you what she is going to say before she says it.
I do zone out when she's talking, I completely admit that. I do put off some things or not fill her in all my plans. I do this because she won't remember them or get them mixed anyways. It's a complete waste of time to give her more than small bits of information or to inform her of more than the next day's activities. I don't do everything she asks the minute she asks for it, because I have my own sh!t to do too.
She's so negative, and seems to look for the 'bad' thing to always happen or all bad possible consequences. It's frustrating and exhausting to listen too. I don't think I can express frustration because it's 'not fair' that she is the way she is. I just have to accept and work around it because there is no other option. Right?
Call your local Area of Aging ..
See what you can do to level the playing field somewhat by sharing the physical and emotional exhaustion. Make a Mom's Chart with 3 columns: WHAT SHE CAN'T DO; WHAT SHE CAN DO WITH HELP; and WHAT SHE CAN DO INDEPENDENTLY. You'll notice most things fall under the last 2 categories.
She can, for example, do dishes more often and carry her own purse. If she has the vocabulary and the energy to find fault in everything you do, then she can talk with her doctors herself instead of using you as a mouthpiece.
You've chosen to operate beyond burnout. And now that guilt-ridden, 24/7 sense of obligation has you running on fumes. As long as you keep catering to her every need and whim -- whether real or imaginary -- she's not going to be inclined to do much on her own.
I wish I had understood the boundary setting early on along with the guts to act on it then. It took me a while to get there, but I'm well on my way. We've started the year with my mom having two health crises and she's in rehab now near me. Dad is 45 min away in a house practically falling down around them. Even the house is saying please leave, get out and never come back! My wonderful hub has been caring for him. So we're getting dad moved in the next week or so to a really nice AL about 8 minutes from us. If mom survives then she'll move in with him.
We just told them both we're done! No ifs ands or buts you have to move for your safety and health as well as our sanity and health. Or I'll call social services and APS and let them guide what happens. So, they chose AL. The next will be to tackle the doctors. I'm sick of them, sick of hospitals, etc. The AL has doctors so I'll be looking into that after we get them settled.
We have to muster the courage to say when OUR time is up and follow through on getting them good care and get our lives back and peace of mind. I'm there now. I'm done running on fumes, just done.
Your Mom doesn't sound as disabled as my Mom but with your Mom still able to get around, she must be watched even more carefully so may be harder in a way. I recently lost my husband to RA and I am learned to forgive my Mom for outliving my so very sweet friend of a husband. I guess that sounds strange but my Mom was always here always demanding attention and left little time for my sick husband. We rarely got out together alone! My Mom has chronic pain as well and all the problems that goes along with the pain meds. and the classic symptoms of a drama queen. I have also gone through burn out and am up many times at night being buzzed by her for needs caused by sun downers. She just doesn't sleep at night.
I also know that this will not last forever and figure I am working off some sort of bad karma I've incurred from a past life (it must have been a bad deed, indeed :-).
Some times a sense of humor helps to lighten the mood and make everyone laugh. We also have several little dogs that distract her attention and they are comical, too. On a good day, I plan on keeping her as long as I can lift and work but other days I'm ready to chuck it and run off to a distant land. I think the key is to do the best you can for your person, rest when you can, and take breaks as possible until something changes. I also know that when it gets tough, hang on a little while and my Mom will get distracted and forget what made her upset or play my kindle solitaire with an ear to her stories since I know them so well.
So if you haven't already read the book mentioned above, I highly recommend it. It is updated every so often, too. May God bless you both.
Anyway, the thing that struck me the most is that, according to your letter, she seems to still be driving. I think that's really dangerous. I admit that for some people it's a real struggle taking the car keys away, but I think that there are previous posts that discuss the driving issue and ways to get the car keys away. Good luck.
I bought the book 36 Hour Day. It is on my shelf now. I started reading it. The more I read, the more I dreaded. I didn't want to work that hard! I set the book down and never picked it back up. The writer was such a better caregiver than I am. I have to admit I take things an hour at a time and try to keep things normal as possible. When it gets too hard for me it will be time to find a facility where she can get better care.
I might should try to read some more of the book again or at least donate it to the library for someone who can use it.
1. Support groups, at least one
2. Home Health Aids
3. Time out for a coffee, a walk, whatever suits you
4. Meals on wheels (unless you are like me, organic. I am not sure if they do kosher or halal)
Some religious groups have volunteers who will keep your mother company. Some adult day care places are mefical model and can take people with great health needs - medicaid will pay for this, medicare as well I think.
We spent Saturday afternoon here at Urgent Care and getting antibiotics for a UTI. The doctor said that there might be the start of a UTI, so gave a shot and a prescription. After we got back from the doctor, there were no more signs of a UTI -- no frequent urination and all focus was on going to church the next morning. I knew that there was no UTI. It was just a revival of the old days of wanting to go to a doctor. She has no conscience left about wasting time and money. She has no concept of me. She is always telling me that I don't do anything all day long, even on long days filled with chores.
I read the other day that complaining too much can make us ill. I guess I should quit complaining and just buck up under it. Really I wonder if having too much to complain about is what makes us sick.
I took my nieces and nephews bowling the other night and I invited one of my mom's sisters to come with us. My aunt came and sat with my mom talking the whole time, which was nice, but a couple times I had to police what my mom was saying to her. This aunt spent her whole life taking care of their mom and she passed away last year. My aunt and my grandma were extremely close, my mom and my grandma were not. My mom has a lot of resentment toward my grandma and when grandma was on hospice we visited a few times and my mom is convinced grandma was pretending to be asleep while she was there. Anyway, she started to ask my aunt if grandma was pretending to be asleep and I had to interrupt and steer the conversations to something else. I've tried explaining to her multiple times that I don't think grandma would do that or was even with it enough to fake sleep at that point. Also, I dont think it's fair for her to try to trashtalk grandma to my aunt, who gave her whole life to grandma. Is this obsessing normal? Why would she even ask that?
So how do we dispel it without doing harm? And really, is it healthy for us to keep doing it? We all like the idea of helping our elders, but some of them are very difficult. What do we do when there is no one to help and we can't get the person to think about AL or respite? How do we deal with the anger and resentment in a good way that clears the bad effects from our bodies? If someone were to measure my cortisol level, they would probably find it through the roof.
How do we keep from getting so emotionally exhausted working with a difficult parent?
My therapist says that we need for our wellbeing a social/emotional and spiritual outlet. My emotional- is here on AC. I can vent my frustrations here because I Know that you all have an idea of what I'm going through. I have learned that it's best not to vent too much detail, repeatedly, because it causes others here on AC to be frustrated on me for not being proactive with my vents. My social partner is my sister - where we can go out shopping, eating, or just lazing around at her house. I'm lacking the spiritual one.
Jessiebelle - I'm terrible at preventing emotional drain. I do believe that I need to work on - Emotionally Detaching. I haven't googled to find out How to do that.