My husband and I are two months from moving back to our home town to be closer to his parents. So we are grateful to read comments here. I now see that I need to begin preparing now and reading others stories has made that first step happen. Thank you! I'll be in touch.

My husband and I are two months from moving back to our home town to be closer to his parents. So we are grateful to read comments here. I now see that I need to begin preparing now and reading others stories has made that first step happen. Thank you! I'll be in touch.

Wow! I read some of the comments... We are all in the same boat. but some are worse off than others.
Its tough being a caregiver and tougher when no one is available to help you.
Its like being in a maze trying to find the way out and every exit is locked.
I have been caring for my sister-in-law. She was diagnoised with Stage 4 lung cancer. We have been through the Chemo and Radiation. Now she is living the rest of the days, one day at a time.
Things that I am thankful for are:
My church is very supportive. They have cleaned my yard, repaired things around the house, visited her. They also support us in prayer.
She is starting to lose her memory and doing some basic things.
I have realized that I need my time also. Last month I was in the hospital for four days.
I think we as caregivers have to take charge of our own time.
Carve out some time on a regular basis. Free time, your time come hell or high water.
This takes prioritizing, using your resources at hand.
What do I like to do that takes 15-20 min breaks. Mindless. Playing games on computer, reading a good book, sitting outside, putting a puzzle together, give yourself a facial (or go and get one if you can afford it), pedicure, nail care.
Things that relax you,
I enjoy praying for others, especially caregivers.
Make a list of things you need to do and do the least favorite one first.
Don't even try to win an argument. Remember it takes two to argue.
Reply to the negative with a positive remark, a touch, a hug. Remember touch can be a wonderful thing. Find time to treat yourself, do not feel guilty about it
Keep a journal, nothing lasts forever.

My stepdad passed away in Jaunuary...I brought mom home with me..as she can't drive and is easily overwhelmed with even the smallest things and very negative. Sadly...she was a very domineering mom..with zero patience..with me as a child..constantly telling I was ..in other word..stupid...I find as she lives with me..until I find her senior housing...she pretty much treats me the same way..most of the time...she pushes me over a cliff ..I find myself yelling at her...just stop it! It's hard for me to show her much empathy..I'm shocked at myself...I'm not like this...feeling so not myself

I agree with your article here entirely. SO...where does the therapy-respite-relief come from without the funding? Even when Mom did qualify for respite...we were told the agency had cutbacks and there were no funds. Ridiculous ! I AM an empowered caregiver- so I see what most people do not: that you can investigate/apply/seek resources and still come up empty. It's one thing to understand you need help- emotional or physical- it's another to seek it and still come up empty. Now what?

All this is logical and true. Where the dilemma lies is when there is no funding for the respite, the therapeutic needs of the caregiver, the volunteer friends and or family members to see the NEEDS OF THE CAREGIVER. It stinks when you ask for help, apply for help, call, write, seek, question, etc. etc. etc. and all you get back is a sales pitch with a price tag you cannot afford. In a perfect world this might work. In a world where the drunk drug user who almost killed the family of five via motorcycle gets TWO FREE wheelchairs, and you cannot afford ONE... there's a bigger problem that these blogs are not addressing here. (That comment is from personal knowledge of a local family. Free free free. Medications, doctors, 20+ hours a week housecleaning services, respite, etc. The idiot who caused the accident has never even paid into the system.) How are we supposed to be optimistic? Taxpayers are the new minority. Caregivers are the new underclass. That is not being negative, that is being observant.

very grateful

I think this is great advice. I do think readers should understand this article is not just for caregivers of aging parents. I'm a aging parent caring for my 33 yo quadraplegic son who will probably live 3 times longer than i will. What does a parent do then? Feeling overwhelmed, used, depressed, and too tired to take care of my personal health by tge time his needs are met. If i dont keep doing it he will be in a nursing home and i will have to feel the guilt. Aging parents will inevitably meet their maker. So will I, then what will happen to my son. I would live to be able to rest eithout guilt. Could never catch up on rest in one day if i had one day to rest. Im trapped.

I really liked the it's ok section and not ok section.

I'm 57 (a only child), my dad passed away last Jan. 22, before that he was the caregiver. He was very proud and he never let on that Mom was going down so fast. So now myself and my Mom's baby sister take care of my 81 year old Mom. She is in stage 5/6 of Alzheimer's. I have 3 1/2 more years till I can retire and my aunt takes care of Mom in her home. I live there now too and I am with her on evenings and weekends. I sometimes get these questions that are in the article in my mind. So it was good to see that I am good with where they fall in either the OK or Not OK area. My opinion as a Caregiver is this...
Yes it's hard and you have to build a shell around your heart so you can deal with the changes. I would not be here in this world if not for my parents having me and giving me the love they did over the years. So it is my turn to repay them, now Mom for all she has done for me and the love she gave me. This is my duty as a daughter and my desire to take care of her as long as I can. Yes my personal life has changed, but I feel like when her time is up and she is in a better place, then I can return to or build my life back and I will then do all the things I still want to do. I am a widow myself of 9 years, my kids are grown now (24 and 21) and I have a grandbaby that I don't get so see as often as I used too. It's what you make of it that matters. I am grateful for everyday I get to be with her, even though she doesn't know who I am most of the time. I guess I live by the golden rule. Treat others as you would want them to treat you.

What a worthless article!! When you come up with a valid and viable solution to all your "not ok" comments let us know. Just asking for "help" is not the solution. For many, the hard cold fact is that help, even if asked for is not available. As far as asking for a professionals permission so I might feel ok to ask for help: kiss my ----. Unless they can give me some valid solutions they are worthless.

My domestic partners mother is going to be coming to live with us, and I am terrified. He seems to think it's going to be easy, he's even told me that she wasn't a bad roommate. I don't think he realizes what being a caregiver entails, and I'm scared that the burden is going to fall on my shoulders. I have a full time job, and I do all the cooking and cleaning, and that's just with the two of us at home right now. Now we're talking about adding another person to the mix, who cannot help cook, clean or do household chores. I plan on starting therapy next month, hopefully that will be enough. Thank you for letting me know that it's ok to be scared, and that there isn't anything I should innately know.

Bless your heart nit4sho! Those other family members or friends need to step in and help you. That's way too much work for 1 person to take on. You need to tell them that you can no longer continue taking care of everyone by yourself and that you need to take care of yourself or you are not going to be there to help anyone. I had to finally tell my parents that I was physically unable to continue on as I was due to my health declining. Had to say it a couple of times to be heard but finally got thru and got some rest and relief. Are there any facilities near you that offer respite care? This lets you put your relative into the facility for a decreased fee and they will care for them. This is so you can get a break from caregiving and take care of yourself. I will be praying for you.

Adding to what I say ^^^ up there. My dad just pass away almost 4 years ago. N my mom just recently pass away. I don't know what to do anymore now. I smoke more now. Gain weight. Forgetting stuff.

Omg. I cry just reading this. I want to give up being a caregiver but I can't stand the fact that no one is willing to give me an extra hand on taking care for my father in law. I am afraid that if one day he pass away. All of them will blame me for not doing my job better. But I try my best. I stop doing stuff. Stay home 24-7 just so I can take care of my father n law. I cook n feed the whole family including my father n law. I don't even attend family events. I can't even visit my own family. I'm afraid, stress, and lost.

I started caring for my mom who has Parkinson's several months ago when she became confused and started to hallucinate. I was trying to care for her at her home and at the same time my dad had to be admitted to the hospital with severe CHF. He then went to rehab and I was trying to run between him and my mom. I also suffer from chronic severe back and leg pain for 14 yrs now and have fibromyalgia among other things such as arthritis. It was killing me to keep running between the 2 ,carrying mom to Dr. and taking myself to Dr. Then mom became so confused the Dr.diagnosed her with dementia and she couldn't be left at home alone. She had to be hospitalized and then we sent her to a memory care unit and my dad followed because neither can care for self. My dad has hard time walking even with walker but doesn't want to be in assisted living. Both are in memory care unit and mom is even worse and unable to do even basic self care now. My dad says he hates it there and is mad at me for putting them there. He can't deal with my mother and constantly scolds her for her behavior. He calls me all the time to come over " to help find your mom's glasses now, we need you over here now to look at your mom,etc".
It's all I can do, with my chronic pain,most days just t get out of bed, do a few things around house then I have to lie down again for a couple hrs, etc. I can't standor walk or sit for more than a few minutes yet he's constantly demanding things like push him in a wheelchair. I'm so overwhelmed, so depressed over mom's condition that I've been crying off and on, trying to deal with their bills, etc even though I don't have the POA yet. I can't handle all of this and my only brother lives several states away. I can't do all of this. I identify with many of the feelings above and don't know how I can keep going on like this. I try to take time for myself but I cringe every time the phone rings and feel like I'm drowning. Help!!!!!

This article has told me things that I have heard from a lot of caregivers I am having a hard time because I hate conflict so I try to do it whatever it may be to save peace I just moved my mom in yesterday and LST night she has already started trying to tell me what and how to do things. Needless to say I had to take off work again to get some sleep (if possible) and to get organized (if that's possible) she's capable of many things. In pretty good health for 77 and she could pick up the phone and change telephones and satellites etc. But seems like I am having to do it if its gotta be done. I could go on but enough for now. I'm wearing out my welcome. Lol. God bless me and all the caregivers out there and thank god for good meds. Lol

I think the problem with caregiver is no matter how much you give or try to do your best of those who needs caring is never enough, it’s a learning process, and a tough one too.

I am relieved to find I'm not the only one who has literally found no help, no resources and a system that is so dysfunctional it's sick. All the 'programs' that can be found on the web are a joke. I have even called the gov advocate and was told that yes in fact there is nothing that can help in our case. The programs have very strict rules and qualifications. Sr & disabled services is a joke and have only done the very minimal at my urging which they don't like. My mom is 69 with psychosis symptoms and mental illness does not run in the family and has been labeled with Alzheimer's dementia type nos. She is not admitting anything is wrong and has voices now directing her daily. Everyday in the beginning she has her stuff packed and she's waiting for her husband to take her home. Both of which are not reality. She's divorced and Lost her home. Wow didn't know so many were in the same place I am. No resources from the state or any 'programs' offered. Literally nothing. Mom is 69 and no family history of mental illness. In nov 2012 she was told to leave her home she's owned for over 20yrs by the city who then boarded it up and gave her a laundry list of code violations that they knew on a fixed income couldn't be fixed, her house is over a 100 yrs old. They came in with false pretenses to fix her wiring with a grant for low income people. The 'appt' was set for two days after she was discharged from surgery. While still in hospital she had a drug induced psychosis episode. She didn't have time to fully recover then bam out in the pouring rain and left with no help. They gave her no anything to help. She spent all of 2013 trying every single thing she could to get help. Nothing. I have found all her notes and numbers of literally every supposed resource wa had to offer. I went up total over the year atleast 4 mnths to help save her belongings. Not only did they board her home up they 'the city code inspectors' then shut her power off but not her water. Well a freeze happened in feb and the pipes burst thru the ceiling, causing over 40 grand in damage and she lost more than half her stuff. So with a whole year of stress, homelessness - she slept between her car, in laws and friends, losing all her belongings she worked so hard for as an RN for over 30 yrs, and finding NO resources to help, she has slipped into a psychosis state with delusions and mild hallucinations (auditory she converses about 5 people with and smells), and a complete avoidance of anything stressful, bad or unhappy. She was hospitalized from 2/27/14-3/21/14 between 2 mental health facilities and 3 medical hospitals that treated her like a crazy old lady, doped her up on anti psychs and only the first hospital got bloodwork and a ct and found a raging UTI that has cleared, and the last mental hospital that did another ct and bloodwork. She refused to cooperate most of the time. The last mental place tried to commit her by giving her a vague diagnosis of Alzheimer's dementia type nos with psychosis symptoms. They lost the case and I brought her to my home. My home is to small 3 bdrms. So 2 kids me my husband and my mom now. My mom is in my sons room I'm on the couch. I quit my new job to care for someone that doesn't think anythkng is wrong and doesn't want help. Stressed to the max with no family willing to help no resources. They denied her for Medicaid and they only gave her $15 in food stamps. It's a joke. We are living off my husbands income and every day is agony. The financial strain alone is unbearable but adding the fact the govt has no intention on actually providing family caregivers any resources is criminal. I am not
Giving up on my mom but the system is causing so much stress by not helping is unfair to my mom and needs a huge makeover.

Thank you for letting me know I am not alone and most certainly not abnormal! I have felt all these things, plus a fear that when my Dad dies, it will be my fault because I didn't "get it right". Definitely printing out this article and laminating it!

I don't have any thoughts to share but I want to thank you for this article. I am so stressed this past few days but I won't go into details. I need inspiration these days..as I'm thinking of quitting this job.

I agree that it is NOT okay to feel like you have to do everything yourself. I have been taking care of my boyfriends grandmother with early dementia for almost 2 years now, but I HAVE to do it on my own. He helps when he is home from work, and on the weekends, but his mother (grandma's daughter) is of NO help to me. I was diagnosed with an Ulcer about a month ago, and asked her to take grandma overnight for me (I was planning on getting rid of the baby to my mothers for the night also) so I could rest and not worry. She REFUSED to help me, after weeks of stating she would help if I needed it. Well, I needed it (this was the first time since my son was born I asked her for help) and was refused. Grandma's other son lives in TN (we are in MI) so is no help, and her other son has medical issues of his own, and has not seen his family in years due to it. She literally has NO family willing to help. In addition to being a caretaker for her, I am raising a toddler. She isnt to the point of needing to go to a home yet, but my mental health is starting to suffer having no relief from her family. (And on the rare occasion she does go to her daughters house it causes more problems than if she just would have stayed home).

Desiree

Orangeblossom5: I understand! I am in a similar situation and all I can say is hang in there. What else is there to do? I have no answers, every day I feel like I can't go on and then I do. I keep saying to myself, someday this will be over and I need to look back and feel that I did my best. I know that includes taking care of myself and not feeling guilty all the time, but I haven't figured that part out yet. Let me know if you do!!

What a wonderful site to go to for caregivers!!! We all seem to have the same problems. I get no help from my two sisters and three brothers so my husband and I decided to move her to Texas and live with us!!!! She is a sweet lovable person with moderate dementia and doing great.She has no physical health problems but had to communicate with her because of her memory. She walks slow also. I sure miss my old mom!!!! I am overwhelmed caring for her 24/7 and seem to have no time for myself. I feel guilty doing things for myself when I am alone but I know I shouldn't. Any comments appreciated on how I can overcome this.

My husband has Parkinson's Disease for 10 yrs now, and my son has Asperger's Syndrome, I think it time to get help. I already see myself being put on the back burner and that makes me sad, frustrated, and brings me to tears sometimes.

Dear mgarcia: Sounds like you need your own lawyer to represent you in this situation. The fact that your Mother is mentally sharp but cannot hear is significant, and she should have some quality representation so she can exercise her right to present a clear description of the situation to back you up. Perhaps you should take legal action against the miserable aide who apparently mis-represented the adverse situation you were dealing with during the crises you described. Sometimes the 'system' can scramble the facts to your disadvantage, and it's up to you to get the assistance you need to make it right. It might cost you finaciallly, but it's worth it to keep your Mom out of an institution, and happy and well-cared for in your home. Stay strong - I hope you succeed.

Dear Baumgark, You need to get out of this situation now. Your sudden extreme weight loss is serious, which you must recognize, being a nurse. Your own family needs you too, and what good will you be to anyone should you collapse. A friend of mine was in a similar situation regarding the aides being unwilling to continue serving alone in the house due to the patient's abusive behavior. The service agency then initiated having the patient put into a nursing home. I would suggest you get the agency's supervising nurse to come in to the home to do a re-evaluation of your grandmother's mental physical condition as well as what the physical/emotional burden has done to you as the primary/sole caregiver. I think they will end up recommending she be institutionalized, as no one can be expected to put up with the level of mental abuse and physical strain you are dealing with. That would take it out of your hands and you will then be free of the responsibility, which should have been your mother's to begin with. From what you said about your mother's attitude, I bet she wouldn't hesitate to have your Grandma committed. Another alternative would be to call the rescue squad the next time she becomes physically abusive. The will get her into the hospital, and then you can utilize the attending physician, case manager and their social services rep to evaluate her and the home situation you are dealing with, and they can assist you in the steps needed to get her permanently out of the house. While she is in the hospital, don't relent until they have done a complete evaluation and keep insisting that you and your family are not physically safe with her and she cannot be left alone. If that does not work, seek legal advice, see if you can become her legal guardian, and start proceedings to have her committed. Surely her doctor will be able to back you up with a statement of her mental condition, and that she physically needs 24/7 professional care, and that you are no longer able to provide care for her due to the deterioration of your own health caused by her. Get to your own doctor for a physical exam so he can document what this situation has done to your health. You took on the responsiblity of caring for your Grandma out of love, and have turned yourself into a martyr. You need to emotionally divorce yourself from your feelings for her in order to do what you logically need to accomplish for both her, you, and your family's benefit. Good luck, God bless you, and don't allow yourself to feel guilty for a minute.

I am 35 caregiving 24/7 to my 83 yr old gma. Her doc told me she will outlive me. She has had 2 strokes,diabetic, chf and morbidly obese. She is mean, overweight, and has a little slave girl to whom she abuses. I no longer have any type of life, my young children are miserable. I can no longer attend church, I cannot afford respite care because my grandmother has to much money. My mother will not visit or pay her bills but she will buy a vacation for herself and her current boyfriend. I am the only person who has ever cared for my grandmother as long as I have known her. I have always written off her hateful attitude off as mental illness. I am a nurse, I have seen a lot and normally I can handle most anything. This is truly killing me and she loves it. I look haggard, I have lost 42 pounds in less than two months, it has been eight months since I have had a haircut. Yes, I have made appointments but the aide either doesn't show or is so late that I cancel. I cannot find anyone who will put up with her crap on the select times I have tried to leave. I no longer have friends, yes theycall to say hi. But we no longer have anything in common. No friends, miserably unhappy family, +guilt for doing this to them.

I'm going through a very painful experience caring my 86 yr old disabled mother, a 10 year old and attempting to earn a living as a realtor. My mother lives with us and shares in all household expenses and has a strong and secure place in our family and in the life of my daughter. Recently. however as series of crisis including an extensive poweroutage and storm damage, an acute urinary tract infection and viral diarrhea made managing her care very difficult. I sought support from the Visiting Nurse Association, her physician and the local hospital but instead of acknowledging the temporary nature of the crisis a spiteful home health aid involved protective services.

Within days a psychiatrist was ordered to evaluate my mother and deemed her, on the spot incompetent to make any decisions for herself, despite her very astute mind and highly regarded intellect, an elevated estimation of her income and assets were submitted (she owns nothing, has a fixed income of $2600 and contributes approximately $1400 of that to her private area with living room, bedroom handicapped bathroom and kitchen + 24 care by me for everything) and a review by a conservator was order to investigate charges against me for exploitation and to remove my durable power of attorney. She was ordered to appear in court, with a court appointed atty. who had met her for 5 minutes, ignored the fact that my mother could not hear and refused to present financials or statements or hear testimonies by 10 people present who know my mother and our family well. The judge has ordered now an assessment by a Geriatric Care manager that will cost my mother in excess of $1200 and when added to legal fees will nearly consume her entire months income.
I, in turn have multiple allegations to defend regarding neglect, abuse and exploitation when for over a decade, I have cared, nurtured and provided for my mother, out of love and a deep commitment to have her share in our lives, at my own dire financial and physical expense.

It is heartbreaking the way in which a system which greatly percieves institutionalizing of the elderly as the most effective and profitable way to manage them, can come into a home such as ours and rather than recognize the warm, safe and commited environment that my mother is being provided and perhaps support us when crisises occur or added services are needed, they forcibly subject us all to this horrible anxiety, paralyzing expense and stress!!
Just terrified that we will not have the financial resources to prevent them from removing my mother against her will and subjecting her to a life in an institution!!

I feel sorry for you but I do feel unappeciated and it is not right and I am going to make them all understand one day and when I do they are all going to stand there with their jaws on the floor. I Have Had Enough!!!!