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?
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.
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.
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.
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.
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.
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.
Call your local Area of Aging ..
Talk with your mom, ask her to help you, let her know how much you need her help, it may just be what she and you both need. Take a walk if you can leave her alone or better yet take her with you.
I can tell you are tired, but you're a loving daughter who needs some rest and a good laugh. I wish you the best. Take care
Still, I try to make some time for myself, take walks, watch escapist TV shows that I like. I'm still tired most of the time but am starting to see a glimmer of hope. I hope you will too. What I'm trying to do is simply accept the idea that I've changed forever and am trying to see where that takes me.
I feel for all of you know how this goes. It really helped me to know that there are others feeling as I do. I got some really good views from posting on this site. I thank all of you for that. Hang in there, hopefully there is a light at the end of the tunnel.
This is the situation many caregivers find themselves in, however it can get better. You can have a better more relaxed life with your mother by changing a few simple things. It sounds to me like a good self-care program is just what you need. Many caregivers by nature get into this rut because they are very caring people.
Good self-care is the backbone of caregiving for people. This is true of family, professional caregivers, clergy and in many instances medical professionals. So how do we fix it and how can we have a life that is not only good for us but good for the patient as well.
1. Self-care is the cornerstone of this business.
Good self-care is not a luxury when caring for a loved one. Self-care is necessary to help caregivers be available both physically and emotionally. Begin with setting aside time for you. I suggest 30 minutes in the morning and in the again in the evening. For this time you will need to determine the activities that are relaxing for you (reading, watching TV, a loved hobby and so forth). Once the activity is in place ask another family member or friend to be there for your Mom. They can take her out or stay with her. The idea is that you do not need to think about her care for the time you have set aside. I would not suggest you take a nap as if you have clinically depression "napping" can create another problem of it's own. I would suggest going for a walk get fresh air and exercise at your pace will help you more than taking a nap as by doing this or other outside activities will help you getting a good night's sleep. You will find, as this becomes a constant in your life, you sleep better and wake more refreshed.
2. Look for friends and neighbors that can help.
Many people would love to help (I am sure). They simply do not know what to do or when to do it. Ask them to help by staying with Mom while you shop or go to your appointments. Begin now setting up a 'help list'. Many a times a list is great for idea stimulus just jot down some things you would enjoy. Simply make a list of what you need help with and have a good location to post the list ask so people can look at the list for something they can help with. Examples would be picking up five or six things from the grocery store or empty the cat litter something that will only cost some time.
3. County or local assistance.
Look to your county assistance office (Senior Information and Assistance) and ask them for volunteer Respite Care. There is frequently an organization that will provide Respite for a few days so you can get some rest. Many organizations offer Adult Day Health and it may or may not be free, rather on a sliding scale. Please have your time planned for the Respite and again not staying at home or in bed.
Most important is to do something which is totally different than what you do daily for your Mom. Do not spend this time cleaning the house or sleeping. You do need and deserve a break. So take one, this may seem like more work however it is truly not.
Take care of yourself as you are the person that will need to be there for the declining years And please know you are not alone and if possible join a support group for caregivers (you can find through your Mom's doctor office or churches or county agencies).
Above all you are the best service your Mom has.
So much of what we can do easily depends on if they realize something is wrong with them or not. If they do not accept that they have problems with their thinking, then all the things that go wrong are someone else's fault. If they can't figure out the coffee, then someone bought the wrong pot. If they can't find something, then someone took it. Basically, if something bad is happening, it is someone else's fault. If the only person there is the caregiving child, then everything is their fault. Staying with someone who does not accept the dementia is more difficult than most people can imagine. It also makes the caregiving child start feeling like they are a really bad person.
The easy solution would be to place the parent or to go on long respite. But there the problem of them not admitting a problem comes in again. Nothing is wrong with them and they can take care of themselves. So if the caregiving child wants to go on vacation, then they can go. And NO, the parent won't go for respite care and won't let someone come in. In their mind they can take care of themselves just fine. And NO, they don't want to go to AL, since they want to die in their homes and can take care of themselves just fine.
There was a thread on AC about people who don't know (or accept) something is wrong with them. I can't remember the name of the condition. In my mother's case she will sometimes say that her memory isn't any good anymore, but she won't blame that if she loses something or forgets how to do something. I hear many snide remarks and live with criticism. It is very disheartening. I know it would be easier if I could just say that it was the dementia causing the problem, but to her she doesn't have dementia. Any hint that something is wrong with her starts WWIII.
I wish I had an easy answer. I get out almost every day to go for a long walk or to the gym. My mother doesn't want to go anywhere, so I leave for a while when I can. I am glad that I can do that. I do wish she would go to AL. I do wish my brothers would come get her sometimes. I do wish she were nicer. But it is what it is and I just do what I can. I don't know how much longer I'll be able to do it, because I am so beaten down. Then I'll have to make decisions for myself and let someone else handle the things here. There's no telling how much longer it will be -- tomorrow or 10 years.
It would all be so easy if they were pleasant.
Even if you're right, it's true that she is deteriorating, and you may realize it before she does. I've found that it is exhaustion that taught me how to set my boundaries and limits, for I also felt that it matters that love is included in my effort to care. If genuine love or respect is lost because I'm tired, afraid or resentful, it is in the interests of the whole relationship, which does not heal, I believe, unless love is there - but love is not just a lovely feeling of accommodating someone else all the time - it's only the result of making a decision at SOME times to accommodate and try, and otherwise to separate.
I'd suggest, that if you find yourself zoning out as she talks, try to end the talks then, rather than pretend and resent. Tell her, "sorry, I'd like to understand but I can't follow right now, I'm tired or thinking of something else. I'll leave for a while, see you in a couple of hours.
Take time to experiment with what time do you want and need, instead of focusing on how she should behave, or imagining how you should. Yes, she should behave more nicely, but if you managed the contact explicitly, made a minute or two to listen - but stopped her when she began to elaborate on negatives or give too many requests or complaints in a row - I used to tell the old lady, that I'm glad to be there and care about her and am trying to help as best I can, and it's also not my job to listen her criticize me, so I'll leave now, and come and check on her later (and take a break. Sometimes even 10 min apart was enough for her to collect herself and be nicer. then do one or two more tasks, and plan breaks, and enough days for yourself also.) Focusing on creating positive additions to the home, rather than on interpreting what's wrong, can maybe help - and if LOTS more break time is needs, start making lists of locations, people to talk with, about getting that!