The Caregiver... How are YOU doing today?

Tatoochick, I'm sorry this is going on, and this is my fear also, for when my FIL goes into AL next spring. Will he be able to manage on his own, will he socialize, even if it's only to go to the dining hall? I'll be very interested in hearing how she adjusts, and you too, how you cope with worrying about her, and getting her to participate! My FIL is a type 2 diabetic, mild, but he still needs to eat! I would recommend that you keep a good tally, on the food and snacks that you do leave for her, then you will really know if she eating anything or not. Good luck with her, I hope she settles in! And fast!

@staceyb - Thanks. Hoping for the best, just not hopefull right now. Great idea about tracking the groceries i leave there. Will let you know.

Book, how is your dad doing? Thinking of you.

How am I doing today? Not very well. I spent 2 days in the hospital last week after abdominal abscess surgery. I now have an open wound in my belly and insurance that doesn't cover wound vac or home health care. I gave up my job, my life, my wonderful health insurance, to move in almost a year ago to care for my 88 year old father. I know he wants to help but doesn't know how and doesn't really understand what happened anyway. I'm frustrated and short-tempered but it doesn't do any good to be that with Dad, as he doesn't understand why I'm frustrated. So today, I'm not doing well. Maybe tomorrow will be better.

So things did not go well with me not visiting mom at the ALF, mulpti phone calls from them saying she will eat and then flipping out on Friday evening, where I just said send her to the hospital. She was admitted, sugar is back in control but not sure what to do. I am struggling a lot. I wish that it was just a matter of comforting Mom and instead of fighting. It just seems to me that she wants me to give up my life, let her go live at her house with me their 24 / 7 to only take care of her. Since I honestly know I can not physically or mentally do that she will not allow anyone to help in her care or care for herself. It is literally a fight to get her to eat, bath or move. I can not get an official diagnosis of dementia, or any to really consider that it is not just depression. It is difficult to comfort some one who is so difficult. (Then add in her Brittle Diabetes) I really need some days to care for myself, but feel stuck and on call for her because she does not want to speak or communicate with anyone except me or her one friend. I mean she really will not speak, very shift change I gets asked can she talk. So she will not even help herself that way. I have to work, not because of employer giving me a hard time but i am now months behind on some bills as a result of leaving early, calling out to deal with her outburts and not eating. Sigh, another day another panic and crying for me.

We can certainly get trapped by behavior. I never know what to do, either. It seems like taking life one day at a time is the only way, and that gets old when each day is like that. My mother has also pushed everyone away except my two brothers and me. And my brothers aren't available. With my mother, I often think if she would only be more sociable or go into assisted living, then everything would be better for both of us. But she dreads people. She says she likes people, but her actions speak louder than her words. I think maybe she is afraid of people. It puts a huge responsibility is a caregiving child's lap.

I wonder if your mother has metabolic dementia that can go with diabetes. Your mother is a lot more difficult than mine. Mine at least will eat and interact with others. Still, I have to pull back in myself to keep my sanity, since she doesn't have any concern for my boundaries. I imagine that you have to do the same thing, but it is more difficult.

Dad doesn't remember he just finished eating. Gets angry because we're not feeding him. Demanding. I've tried other snacks. He'll eat it. Then it starts all over again.

He's also telling us to feed those people. You know, the Invisibles, the ones he can only see but we don't. I try to go with the flow but...he forgets. And it's back to repeats.

Nurse didn't come back with urine results. Just texted me to give him more water. Water. My dad says he's been drinking water for Three Years and he almost drowned from it. He refuses to drink more.

Book, good to hear from you. Get assertive with nurse, find out about dad's UA. Thia sounds like a major, sudden change. I know how difficult it is to get dad anywhere. Did anybody suggest the ER for testing?

K: I'm sorry that you feel you got "beaten up". Have you seen YOUR doctor recently? Have you talked to your health care provider about your feelings of hopelessness? Are you taking, or would you consider taking antidepressants?

I know another poster, sensing your frustration, suggested that it might be time for your mom to be taken care of in a facility. Is that something that you would consider?

Kukile, I have found it safer to discuss stuff within these kinds of threads/discussions. When you post your own question, you're opening yourself to everyone - both the good and the bad, the trolls, etc...

I have to change dad's pamper first, give him a late night Ensure drink mixed with soy milk (ahem... never again will I give him cow's milk - major diarrhea for 2 days!!!), etc... before i can come back and catch up.

I will say that oldest sis changed his poopy diarrhea mess on Monday. She was NOT a happy camper when I came home at 630pm. I walked into the livingroom and it stunk awful. He must have made some major mess.... He tried several times to reach inside and I stopped him with a 'Uh-Uh! No touching inside! Take your hand out of the pamper!'.... And that is why I face the laptop towards him. Dad will sneak a look at me to see if I'm watching. When he sees that I'm busy typing and not watching him, he sneaks into the pamper. When I stop him, he literally jumps with guilt and quickly withdraws his hand. That's how I know he's up to no good - he looks at me to see if I'm watching....

I had to move my mother in with us after my father passed away. She was already getting sick but my dad was a man with a huge heart, volunteered everywhere, taught Sunday school to the littlest ones that no one else had the patience for and in our small town- he was a loved man. He was a veteran and retired police officer. So while he was sick and then under hospice the last few weeks, I had so many who wanted to help him I had to make schedules- and I literally had at least two people 24/7 at their house- and out of their love for him, they also helped my mom. When he passed, so did the help, as she was not so endearing. I also had no idea what a buffer he was my whole life between my mother and I. She recently had to go to the nursing home- within last 30 days. I feel like the demands and guilt are actually worse. I've got my own children and I've already missed so much of their lives taking care of her, but she still depends or demands everything of me. I just have to drive now at every call. Exhausted.

John's girl, I was once called by my mom because she was out of diapers at her assisted living - but she was 15 hours away form where I was working, on rounds, and I did manage to redirect her to the nursing aide/staff who would more properly help her. I admit my first impulse was I'll need to go buy her some nd mail them, I'm covering at the hospital this week! then I realized no, I could not and should not have mom used to calling me for everything - and just because you are close, you can ask that mom learn to get help from people who are supposed to give it to her. You absolutely should NOT drive at every call and become exhausted. It is not reasonable, and you risk falling asleep at the wheel! Mom is, not surprisingly, not being reasonable in her requests. YOU however CAN be reasonable about whether it is a legitimate request , whether anyone else should be doing that instead, and how quickly it REALLY had to be done. And it is easier to be reasonable if you are not too tired to think straight.

John's girl, set boundaries/limits. Maybe for a week or two, write down every call she made, time and request. Make a chart. Look at it and determine what could've been done by staff vs you. Errands needed for you- is it something you can set a scheduled time weekly, bi-weekly or monthly? Do you really have to go to her daily? If not, maybe You set Your visiting days with mom and let her know. Explain that on these days, you will handle her requests only. Set limits.

I took care of both parents dad passed. Mom 91 dementia,,i have Myasthenia Gravis and Leukemia, my doctor told me i had to stop, the stress is killing me. I wanted my mom to move into memory care for her safety and my health. She is refusing to move, she doesnt seem concered about my health,,and no one is either. Its all about her. I had to walk away for me my health. Now she wants to disown me. I feel like im on an island all by myself.

@CindyCBlair stay strong. I am also in the process of trying to get Mom in memory care and my pain attacks are increasing. The guilt of not provding care can be overwheleming but if your health sufers you can not care for anyone.

my bf's sister has been caring for their mom for years by herself and today I find out that it is worse than i can imagine... the woman is in pain and bodily falling apart!
I emailed her saying the hardest phone call I ever made was for the ambulance to take mom to the hospital. They live in another country and some dumba$ "dr" has been making housecalls and told her not to send her to hospital! the woman has seeping legs and cannot toilet herself or get out of bed! omg i am so angry, such a backward dr. This poor daughter.... ok and i am angry for the bf for not getting on a plane and helping - grr.

ok, her mother is in hospital... they are telling her they are going to send her home (soon?) I hope she gets help from social worker if they have them there and not just send home to same situation. i find it hard to believe the place is that backward in this day and age.

Back from 2 weeks away,, at a conference for one week then vacay with hubs and mom and aunt for a week. I can only say we are the Griswolds... After scotland and then this.. my mom can drive me crazy!

Yesterday, pregnant fave niece babysat her grandfather as usual. Just before I came home at 3pm, I called the house to ask if she wanted anything. She answered to me quite abruptly. I knew something was wrong. It seems grandpa touched his poop. I told her to hold off, that I'm on my way.... As I was cleaning him up, niece helped me with him. She told me that changing his pamper is a 2-person job. (Actually, he's still capable to hold himself to the railings. So, he's still a 1-person job. Obviously, my dad was 'uncooperative' enough to make it difficult for niece to change his pamper.)... While changing him, she was struggling with the smell. She asked me how I can handle it. Even pouring his pee into the toilet bowl was soooo awful a smell. I calmly told her that I've learned that holding my breathe makes it easier. She said that I must very good at holding my breath for so long. I said no, I'm awful at it. What I do is that when my face is away from him - I breathe in. When I turn back to him to clean him, I hold my breathe. Breathe in when I look away, hold breath when facing him. Same applies when I'm emptying his urine catheter. Turn my head away and breathe. Hold my breathe when I have to shut it off. Etc... Niece said that she never thought of doing that.

She says that grandpa touches his poop when she watches him. But not to her sister. My youngest sister in the mainland said that dad is doing it on purpose. When I told niece this, she said that she figured that, too. Grandpa doesn't like her , gets mad at her and tries to hit her.

My oldest brother said that his daughter-in-law doesn't want to watch dad anymore. She told them that he says nasty, sexual stuff to her. She doesn't want to watch. Yet, this same brother doesn't want me to hire just any stranger to watch dad on Saturdays. He 'found' a caregiver who will charge $15/hour. I am only willing to pay $10/hour. He refuses to pay the difference. And I refuse to hire her if he won't cover the difference. I really need to find someone soon. Niece will be leaving island in roughly 6 months from now.

I asked fave niece if grandpa ever tried to talk dirty to her. She said that he did, but she set him straight. And he stopped. I said that sooner or later, he won't be able to control it - because all his good behavior synapses/brain cells will die. And all that's left is the dirty, cussing, etc.. person. She said she knows.

Regarding accusing people: currently he's accusing the bank of stealing his money. I've shown him his bank statement and the balance. He looked at the paper with this blank look. He doesn't understand what he's looking at.

I'm on the computer reading.
My dad, "K?"
I replied, "Yes."
He asked, "Are you awake?"
I replied, "No." Silence....
Dad, "Okay."

Seemeride, dealing with end stade renal desease snitch and a father in law with a perment open hole above his anus since a surgery over 10 years ago and that now is often incontinent from end stage dementia I feel I am an expert on smells and how to deal with them. First i always have at least 5 gallons of vinegar in the house. Dads wash always goes in for 2 wash and soak cycles and 1 to 2 cups of vinegar for every wash. Works beautifully. Next, my carpet shampooer I use in the water tank half water and half vinegar and I dont suck up the extra. The longer vinegar stays the more germs and oder it kills. In the bathrooms and kitchen I have a plastic condiment bottles full of straight vinegar that I spray on anything dirty or that may stink. I used to use spray bottles, but my hands would get sore from so much pumping. These are $1 at Walmart. If you hate the smell of vinegar you can add a sent. I use peppermint oil. Next when cleaning I wipe one drop of peppermint oil to a medical face mask that I buy at my local pharmacy. I cant smell or taste anything with that peppermint in there. Years ago when I worked in Labor and Delivery we always kept that on the floor for women who were nauseated and I found it has many functions. I hope this helps.

I have been reading so many more comments than ever before. Mostly because I fall under the care giver burn out of having no interest in talking with anyone or doing anything fun, blah blah blah.......but I am dieing a slow death since becoming a full time 24/7 care giver for my father in law 9 years ago. I am hospitalized every year for something different. I have had pneumonia 4 times in 2 years. A pulmonary embolism, hepatitis, chronic headaches and migraines, gallbladder was removed, had back surgery in March and facing another October 3rd all while my husband works 7 days/14 hours to make up for 6 months unemployment. We care for his dad alone in our home and have for 9 years since his first stroke when he lost the use of one hand. He is an insulin dependant diabetic, he goes to dialysis 3 times a week, he has COPD, vascular dementia, periodic inconvenience, gout, heart disease, high blood pressure, etc... I am 46 going on 70. I have been up all night in server pain knowing I need a hysterectomy, but keep putting it off because I dont have enough money to cover all my co pays for all my medical conditions and I just dont care anymore. I stop caring about myself years ago because I think deep inside I know I would only be keeping myself alive to care for my father in law. I often feel I have nothing else to live for. I have grandchildren, but have to schedule everything I do around my father in law's care. I feel guilty all the time like I dont do enough for him, but at the same time wonder why I care so much. He has never said good morning to me, talked to me or anything except to tell me he doesnt like something I cooked, or make him something sweet or peel him an apple or take him to see his grandchildren or or or or or and and and....in addition to all his doctors appointments, insurance calls, pharmacy calls, laundry, meals, shopping, etc..... I am so so so tired. By the time he passes my father may need me. I am so lost, so lonely, but dont want to talk to my friends or my family. I make sure I give him his medicine, but I never ever remember mine. I cook him healthy meals and dont care what I eat. I dont understand what is wrong with my thinking. I dont like my brothers in law and sisters in law, but my husband still loves his brother so much. I can't, because his baby brother is my age. Always refused to help and my husband forgave him just because he said sorry. I feel, maybe I have forgiven, but I cant forget until I have a life. Until his brothet helps, but so long as they do nothing and thank me only through my husband I have nothing for any of them. So long as I have nothing left for me then I have nothing, or wish I had nothing for them. My brother in law cries on my husbands shoulder all the time so I have to act like I care, but inside my heart I am sick of his complaints. I have no life because he has refused to take any responsibility for his dad and because I am either a nice person or have no self esteem or self worth I go on and on listening and helping. I am depressed, often resentful, I am an actress in my personal life. I dont enjoy anything that I use to and I spend most of my days wondering if I can get up the courage to become healthy and pull myself out of this care giver burn out. I dont even know why I am posting here. I feel selfish sayiny all this garage when many others have it so much worse than me all over the world, but I am lost so I am here.

Excellent advice Candi

Candi you have it as bad as anyone else and deserve any support we are able to give you. Caregiving is not for sissies and you are a very strong woman and deserve more. All of your feelings are understandable and to be expected in a responsible caregiver which you clearly are. It is especially hard when everyone else ignores your efforts and refuses to help. They probably feel with your profession you have nothing better to do.
Now the difficult part of being a responsible caregiver is to take care of yourself because bad things happen when you don't help yourself as you have already found out.
Think of it in terms of what would happen if you become incapacitated. Hubby can't step up to the plate BIL certainly won't, he will whine and find a way out.
So what are you going to do?
Yeah, pull yourself up by your bootstraps and carry on because you have no choice.
Too late for that the cat ate your bootstraps. There has to be a way to walk away from FIL because in your current state you are too sick to continue so the cycle has to be broken
Now I am not suggesting pack a bag and run away. You don't have the energy for that. So do something before they have to call an ambulance and you don't have the money for the co-pays. As you have no money I assume FIL has none either except SSI, is that correct?
Start by contacting yours and FILs Drs and ask for help. Call Social services and see if they can help, same with your local Area on Aging and Health department.
Can you apply for Medicaid? Are you old enough for Medicare and could find enough money for supplementary insurance. If you can find a reason to take FIL to the ER maybe for that hole above his anus. Insist they admit him and take care of that and when that is done insist on rehab whether he likes it or not. He will probably refuse in which case you refuse to take him home until your personal health is addressed.
Who has POA medical for FIL?
Would FIL qualify for Hospice? Contact them anyway if not Hospice palliative care may be the option.
If you are in such severe pain you certainly need that hysterectomy and possibly rehab for yourself if there is no one home to care for you. Contact any local charities and ask for help. This is no time for pride. Try Catholic Charities. They at least have social workers who can support you and point you towards any help available.
Does hubby have health insurance through his job for you?
Now relax and take some deep breaths, I am not suggesting you pick up the phone first thing in the morning and make all those calls at once. Pick one like the area on aging where they can help you find help.
It is important to start somewhere even if you can't face it. If you really can't face anything go to the ER yourself and tell them you are facing a complete breakdown and feel suicidal. Go to a decent hospital ER that has inpatient psychiatric dept. tell them you have left FIL alone and he can't care for himself and is in danger. You are an actress, this must be one of the greatest roles you will ever play. Insist, insist on help bring on the drama and desperation if you have to but do it in despair not anger.
I am sure many others will have suggestions and support love and prayer for you so don't give up and keep in touch, we do care.

Book!! I just asked Send if you were still around! I was away for 2 weeks, and couldn't find you when I got back! Good luck with your dad!

Veronica you brought me to tears. Thanks so much. I have The best medicare plan through humana, but copays are $45 each visit. Thats not high for most, but my husband was unemployed for a while. I have on my list my PCP to call tomorrow and see if these specialist I need will see me now, but accept payment by November. God willing we will be on our feet by then. Finally my husband said we may have to do a nursing home if I cant continue. I told him I have a little more left. This site has actually given me some renewed drive. Your comments gave me untold measure of drive. I told my daughter today, "I have no choice, but to put myself first or I will put her in my shoes caring for me." I stop caring if he liked the food. Its healthy. I look down when I serve him now because I am going to make myself not care if he enjoys the flavor. Its 1000 times better than hospital food. I went off my anti depression medicine for about a week so I will tell my doctor that. The ER thing is perfect. I always wondered how I would reach the end. An ambulance for myself? No, I will take him in and say he is acting strange which he is every single day. He eats every 2 hours and says I didnt feed him, but the dialysis center sent a note home Friday that he gained over 10 pounds. Veronica you gave me a way out when I had none. My currents goals are to see my doctor this week and send my husband anf my father in law home for my fathrr in laws last visit with his grandchildren. I feel he wont be in amy condition to glt again. I know I can use the flight money for doctors, but I want to give him one last visit with him before the dementia takes ovet completely which I believe will happen before years end. I know him better thsn me and every thought I ever had about his health has been right. So in my heart I would want that for myself, so I wsnt it for him. Then when they return it is my health and my appointments where the extra cash will go. Veronica you gave me a plan. Thanks So So Much and may God Bless You.

Wah! I wish my mom could talk....
Last week they found her on the floor early morning.
I saw her today and the bruise on her cheek is about gone, but there are two dark bruises on her neck- ya... right where someones fingers would go, same size and shape.
I am aware I could be completely out of line, but god i wish she could talk :(
Yes, I took photos and emailed them to the appropriate people who said they will "look into it fully"... .. so upsetting...

Mica is your mom in a care facility or at home? I am so sorry

Oh Mica, thats awful! I hope you get to the bottom of this! Hope your Mom is feeling better!

Mica, I wish that every facility had security cams that they could review. I can imagine an abusive staff member, though it might only be my imagination. Neck bruises are difficult to explain unless someone was grabbed inappropriately or got something caught around their neck. I've seen videos of angry and frustrated caregivers that made me want to cringe. I don't know how someone mistreats an elderly person or a child, but the world has a lot of mean people.