You are so correct. I work full time, come home and take over father's care. Although oldest sis stays here, she does not do much. I do the pamper changing, etc... I'm currently starting therapy. The therapist asked me who is my support system. I said, "AC" She asked, "AC?" I replied, "online group - AgingCare." She nods. Then asks, "Who is your support?" I replied "AC." It was getting frustrating because no matter how many times she asked that question, I kept saying "AC." Finally I told her about my 7 siblings and the years of asking for hep. I told my siblings I was researching how to commit suicide - No reaction. In the end, when I finally decided the day, where and how - which was less than a week, I came on AC and asked for help. I got it. Since then, this site and the caring caregivers have been helping a lot...even on my therapy exercises since I seem to have problems Doing it. So, yes, I am willing to stay awake until 1:00am in order to get feedback, encouragement and to help others just as I have been helped.

Thank you, AgingCare. Sincerely, Book

Here! Here! I tip toe around the kitchen at 4-4:30am and listen for my Mom and then breath a sigh of relief that she's still in bed! Aaahh my quiet mornings!!

Ah yes, I know this situation well... When my mom was here 24/7, I'd find myself waking up at 3-4 a.m, even though I might have gone to bed at midnight or 1, and couldn't figure out what was up...then it dawned on me that waking up early, and those few precious hours before 5-6 a.m when mom woke up, was literally the only time of day I had to myself...with, as you said, no demands. No stress. Just peace and quiet. I needed that time like I needed oxygen. My mind needed that time more than my body needed the sleep. That time for me was an absolute necessity, for all the reasons you discussed.

There is no help for the Caregiver who works full time. The Caregiver support groups just add to the stress, one more thing to do in the day. If you're not poor and destitute, there is no help.

dgharris, tell your mom you want to take her to the store, drive to the hearing doctor's office and take her in. That's what I had to do. She moaned and groaned, rolled her eyes the whole time. But she did get one hearing aid, and boy is it ever made a difference! Next trip is for cataract surgery. Who knows, with being able to hear and see, she might gain her independence back and start driving again? At least she'll be able to look in the phone book and call people she knows again. I've been calling her friends for her for the last two years. I didn't realize her sight was so bad, until a couple months ago, I took her to bingo, came back to pick her up, and half the numbers were not marked. Don't forget to hide her vitamins in her food and drinks, makes a big big difference too.

Family doesn't give a crap about their aging parents/sisters/brothers... This society is going to collapse and it's gonna go really really fast. The "ME" generation is going to find out what's it's like to be sick and alone, and the shrills are going to echo from sea to shining sea. Oh yeah, and your boss is going to threaten you that you're going to loose your job if your late one more time. Oh, come on, can't we persecute are caregivers some more, I'm sure the caregivers are really the problem makers here on earth. Sorry folks, but this is my experience and what's happening right now.

Dear dgharris,
Is there a possibility that your mother could go to assisted living or nursing home? It sounds like it is time to consider alternatives for her care. I really feel your frustration and in a way it is similar to mine, but I have figured out ways to cope although at times I still get frustrated.
I also take care of my 91 yr old mother and have had her living with me for two and a half years now. I have a caregiver that comes once a week for 4 hours which allows me time to go grocery shopping and run a few errands. I am considering increasing the time to twice a week so I can do some things for myself. My mother does not have ALZ so we talk and she understands that I need time to myself. That said she still gets jealous at times when I am on the phone for a while.
If you can't afford a caregiver the agency for aging can qualify you for some respite care. They allow so many hours a month for this and it is paid for by medicare or medicaid. Not sure which one, probably the latter.
I hope this information helps and please know that you are not alone. There are a lot of us out here in the trenches and this site is a wonderful source of support and information. Hugs to you and hang in there.

DEAR BYRNEHT,
YES YOU ARE RIGHT THE DEMANDS OFCAREGIVING CAN REALLY STRESS YOU OUT BIG!! ESPECIALLY IF YOU WORK. WE REALLY NEED TO WORK A 4 DAYS WORK WEEK.

Your family needs also to be involved with a support group to understand the issues that are presenting themselves The Alzheimer's Association in your area would be a great place to start. Meet as a family with one of the worker's who will help you with the emotional side of your relationship and what this entails, what to expect and how you as a family can become stronger for it. It is a tremendous journey, one that can make or break relationships and people. Please get help, you can't do it alone. The anger builds and is reflected through your family. Be careful, you and your family are first and foremost. Love Vickie

You really should be making a real life for yourself, your fiancee and 5 year old daughter or else they are going to feel at some point if they are not already feeling it some that they are getting thrown under the bush. At some point your grandfather's dementia is going to get, if it is not already there, beyond your personal and professional ability to care for. Who has durable and medical POA for him? It sounds like your mother, his daughter, might as well be considered no help at all and she needs to be told that she is placing an unreasonable burden upon you, your relationship with your fiancee, and your role as the mother of a 5 year old? What is your mother's excuse for not being willing to help because she is sure is willing to use you to do her job which is not right for your current circumstances in life.

As a type of 'second generation' caregiver....(my fiancee and I are caregivers for my 80 year old grandfather with alzheimers-type dementia) the stress can be somewhat overwhelming. We are both still fairly young (34 & 29) and have a 5 year old daughter as well. Sometimes the hardest part is knowing that your life has been put on hold midstream, indefinitely when you really should be making a real life for yourselves. What helps me get through is knowing that I am in some way repaying my grandfather for all he and my late grandmother have done for me throughout my life, and it leaves me with at least a small sense of pride even in my darkest hour. My grandfather has two daughters, one out of state, and my mother often unwilling to help in the ways I need her to the most, which is by providing respite care for me, my fiancee and daughter. At least we're not alone.

It is a relief to know other people have similar problems and get frustrated under pressure...although I am very grateful and not ashamed of what I do or how I take care of my parents, it is not easy and it hard not to be a b*tch sometimes and the complaints get pretty freakin' old. Thank you for letting me vent. I appreciate it...;-(

We have everything we really need, thanks. If only Mom were nicer. Thank you all for listening!

Do you have an Office on Aging in your county. They seem to have a lot of resources.

If she qualifies for medicaid, it sounds like it is time for her to go to a nursing home. How is her negativity impacting your daughter, her husband, and their three boys? How do ya'll survive financially with that many people in the house and your mother's extra bills? Is your son in law still not working so that he can help you? Your mother sounds too much like my mother in law and I could never live in the same house with her, nor could my wife or children.

There is no money left. My dad spent his last five years in a very good, but expensive nursing home. (He had dementia) Her insurance and Medicare pay for her meds and doctors. We pay everything else. She refuses to go to day care, but she goes three days a week to dialysis. The house is big enough, and if she weren't so stubborn we would be ok. It 's good to be able to say these things. Thanks for listening!

Do your parents have money to spend on themselves, or are you paying for everything. Do they live with you. My parents moved in with us 4 years ago and started giving me $1500 a month for food, gas, and my time, which they said was the most important thing, taking them to doctor appts., etc. Dad died a year ago, but my siblings say I should continue getting the same, since I have to spend more time with Mother who has dementia. In addition to the base amount, I save receipts and charge them for anything I bought for them during the month.

I'm also using an Adult Day Care for Mother so I have time for my own appts without having to get someone to stay with her. There are some people there because their sons or daughters work.

I am new to twitter, a caregiver, wife, mom, grandmother and an artist. I am the main caregiver to my parents, who we have just moved across country. I took a layoff 6 months ago to be with them and take care of their business. My siblings help very moderately. My husband & I are strapped for money, but if I go back to work full time my parents will suffer. Any way, I was so grateful to find this "tweet" (I guess that is right), like I say I am new to this. It is nice to be able to share common struggles and hear words of encouragement. Thank you. Connie

We have my Mom, me, my daughter and her husband, and their three boys (6, 9, 14) all in a three bedroom house. We turned the large dinning room into a dormer for the boys. Mom has been on Hospis, and out, gotten a pacemaker, now goes to dialysis three times a week, and through it all, she hates everyone but me. I eventually stopped having a life of my own. My son-in-law is a CNA and he quit his job for two years to take care of her. We all do what we can to help her have a good life, but she's killing us. I am at my wit's end. Ann

I also find peace in staying up until 1-2am, just reading or taking care of things on the computer. With Mother's dementia (age 96), if I'm not around when she's up, she will continue to go back to bed and wonder why she's in bed and should she be doing something. I take her to an Adult Day Care 2 days a week and try to schedule all my appointments during those hours. I've gotten her a cellphone to carry so she can call me anytime she doesn't know where I am. This is mostly when I go ourside to work in the flower beds (another relaxation for me), but she forgets what I told her. Of course, she may also forget to call me! While she is in a wheelchair, I'm fortunate that she can get up and get dressed, heat water in the microwave for instant coffee, and make toast. With Irritable Bowel Syndrome she has unexpected rushes to the bathroom, or an accident in bed, and even with Depends, there are lots of messes to clean up. Unfortunately the GI doctor just doesn't get it. He's given her medication to put under her tongue everytime she feels she's going to have a bowel movement. She can't remember that. We see him again this week and hope he'll try something else.

It wasn't as bad when Dad was alive. He died in June at age 97 1/2. He was very sharp, and I could leave the 2 of them without worrying.

I'm grateful that Mother has enough money for her expenses, and that my younger sister comes to MD from KY to take over when I want a vacation. Also my younger brother and his wife from Pittsburgh come occasionally, especially for a long weekend when they can take off from work. My older sister is in Hawaii, and my older brother's wife is also suffering from dementia, so I can't expect them to help.

Guess I'd better quit and get back to finishing all the taxes.
Mary Quarrier

Thank all of you.So many times I compose a comment and find myself deleting it.
As most of you I feel the same,no time for me and my prison time goes on. Thank you all for thew brief moments to check the Caregiver Support. Now I have a powerful headache and feel sick to my stomach.

I have a mother who is in her mid to late 70's who still works as a caregiver to artistic men and her 90 year old sister. She does get help from 2 of my cousins from time to time. I also am a care give to my wife and work full time. Plus have our son living with us a college student and our daughter is in college out of state and financing her college tution. The only time I have for myself is when I put my wife to bed around 9 PM. Then I get up between 1 and 3 AM to take her to the restroom and give her meds. Then I get her up between 5-6 AM so I can get her dress, feed here, take her to restroom before some help comes for me 5:30 PM - 9:00 Pm fixing her dinner, restroom and getting her for bed. My sister also is a caregive to her husband's Aunt. Plus she home schools her 4 children at home which help her out. The children are teenagers. We all need to motoviate each other.

All I can say is "Thank you".

I am in the process of moving my mom home from a special needs home. I have a lot of reservations and apprehensions, but my conscience tells me to do the right thing by her and let her live at home. She really hates this care home, even though it seems to be a wonderful environment. Your article is a big help.
Thank you. Joan

This was so real to me. My problem is letting myself go to bed and get some rest. The late evening hours are usually the only time that I can find a bit of 'me' time...and I have a hard time letting go of it. I'll fall asleep sitting at the computer, because this is the only time that is actually mine. But, like all of you out there...I exist on a lesser amount, wake up and start all over again!

I am there with you. Sometimes, I will even sneak out to the garage for TOTAL quiet at that time. It's ok if it is not 30 degrees or below. LOL!

My biggest difficulty is that I am caring for my older sister. She is 13 yrs older than me. She has "multiple health issues" and possibly a brain tumor, however we will never know, as her health is so poor, that she is unable to have an MRI because of her kidney functions. She also suffers from aphasia from her last stroke in Sepetember. That is when we knew she could no longer care for herself. She is so childlike, that sometimes, I have to walk outside and around the house to keep from popping my cork. She wants to stay up late and sleep all day. We live in a very small home, her bedroom is actually my living room, currently. This has become a very stressful situation. I have siblings. One that is only 11 miles away, but never calls or comes by. There is so much to tell you, about my family, that I could never get it all typed. I just want someone to come and give my husband and I a break. Long enough for us to enjoy dinner and a movie without my sister. I know that sounds cruel, but I miss my life. That's why I fiind myself sitting in the garage at 3:30 am just to have total quietness and solitude.

I'M ALSO A CAREGIVER FOR MY PRCIOUS MOTHER WHO IS "91" BEEN CARING FOR HER FOR 11 YEARS NOW.

CAN'T WE LOBBY OUR GOVERNMENT FOR A ONE DAY OFF A WEEK? YOU CAN'T DO EVERYTHING IN 2 DAYS. PRESIDENT THEODORE ROSSEVELT PASSED A LAW GIVING THE WORKING PEOPLE 2 DAYS OFF BACK IN FORTIES BAC IN THE EIGHTIES THEY PASSED A LAW NO MORE SSMOKING IN THE OFFICES.

WHY CAN'T THEY PASS A LAW FOR THE CAREGIVERS?

WELL I HOPE YOU WRITE BACK TO ME. I POSTED SOME COMMENTS IN THE PASS BUT NO ONE EVER GETS BACK TO ME. HAVE GOOD DAY

Don't I well know the feelings discussed.
I am also a recent Cancer survivor and one of seven children.
The help is given when the others have the time not when needed but all is appreciated. The hard part is knowing she is not the same as I remember my Mom being and I so need a strong shoulder sometimes......

Oh my gosh Carol. Thank you for this site!

I'm new to this site. It's wonderful to hear about others and how they handle the stress of caring for an older loved one at home. I care for my 83 yr old Mother in law, who has always been a love. She now has Alzhiemers and dementia. I had trouble getting her to take all of her meds and finally with the input of the Cardiologist and Neurologist, I've been able to cut down her meds to a managable amount. When she doesn't want to help to stand, (or just can't) she's 166.6 lbs of dead weight, and I can't lift her. I've taken to lowering her slowly to the floor when she won't/can't make it to the chair or bed. Unfortunately, I have to wait for
Fortunately, she sleeps all night long so far and can't ambulate alone, so I don't have to worry about wandering. I need so much sleep and don't know how I'd do it without 8 hours. I try to impress upon my children that it's important to take care of your loved ones. I hope they get the message, but I don't want to do this to my children when I'm old. Thank goodness she is the only. one to be around, I couldn't go through this 3 more times. I don't mean to sound horrible, but My own health is taking a toll. The two days that she goes to daycare, I spend it going to PT for my neck and hips, then I just about have enough time to get to the grocery store before the bus drops her off. Kind of feeling like I'm under house arrest.

My father was the same in the beginning of Alzheimer's. His driving became erratic and he blamed the other guy. He seemed angry all the time. We had to trick him to go to the doctor and I asked the doctor to give him a mini mental exam. We also told the family doctor about his anger and his driving skills. We finally had to physically remove the car off the property because we were scared that he would hurt someone else. Please be careful with the driving thing. Encourage him to go for a driving course, tell him that it will help him with his driving. In Canada the doctor's are now sending elderly drivers to a course called Drive-Able, check with your transportation department to see if they have a similar course. You didn't say how old he is? Mom has vascular dementia which is also caused by silent or mini strokes. Watch his daily routine and see if his personality is changing. He will always blame the person closest to him, so try to take in stride and understand that he is not the same person as he was when you first married him. His attacks on you are not personal, he doesn't understand what is happening to him and it is easier to strike out than investigate it. I wish you all the best, and please, please find someone to talk to and point you in the right direction. Good Luck, Vickie

Thank you. It's nice to know that someone else out there gets up around 4 a.m.
I get up early each day to get some "me time" (walking the dogs) before hubby goes to work because Mom can't be left alone. It's nice to hear from others and what they are going through and how they are dealing with it. I wish us all hope, joy, and strength!