i just feel lost. I don't know what is wrong with me, but I know something is wrong. I feel guilty, lost, weird... Most of the time I feel pressure, anxious, depressed, sad, I cry for no reason...I know I need help, but I just don't know how to get it.

nocontrol,

Your crisis is among the worst that I have ever read on this site. Would it be possible to invite Hospice into your home? Do ya'll have any resources to pay for some help to come in once in a while to give you a much needed break? Would he possibly qualify for medicaid that I think will provide some help for care at home?

Sorry, but I have not magic bullet to solve this situation. You have my love and prayers. Keep in touch.

What can you do when you are disabled and my husband always took care of me, now he is terminal ,dying from cancer and I'm the only caregiver there is, I feel like I'm going right with him and there are no choices, since he knows what is going on, I can't put him somewhere else, he wants to be at home to die, But being disabled and caregiver ..not good! But he is my love,until death do us part, I wished I could sleep one whole night, how can you complain when each day may be their last??? I don't know if you can be taken off disability for trying to care for someone who has no one, hard yes horribly hard to try to do, almost like the blind leading the blind but someone has to try and do, night time is the worst time, well maybe mornings are :)

I just wanted to say thank you for the article. It helps.

Sunkist, I agree with you wholeheartedly! As I set here in the ER here in Massachusetts as the staff searches for additional possible problems effecting my dad, your post touched me so much. You are not alone . Know that there are so many of us who do what we MUST because we realize no one will extend as much as we do because of love. It's not easy but we must do the best we can because knowing that we have done the best we can will give us an incredible spirtual peace when it is all said and done , my heart goes out to you especially since I have no idea what the health care system is like in Canada, but it appears from what you have shared with us, things sound pretty similar. Please continue to advocate for your parents because if you don't who will? My thoughts and prayers are with you. Sometimes the emotional support can be very uplifting and also can help to give you the rejuvenation needed to get you through yet another day. Hugs!

I suddenly became a caregiver 2 years and 2 months ago. I don't feel anger, guilt, sadness, lonely - I am just numb. It is better this way. In Sept 2012, my mother who lives with me had a compression fracture in her back. She was taking care of my father who is blind and uses a walker, and cracked her back (vertebra just dissolved) while washing his feet. I was working 50 hours a week at a bank trying to earn a living to support all of us.

I am unmarried, no siblings, no kids. I was in shock - I had no one to care for my dad and mom could not cope going to hospital by herself. We live in Canada with "free health care" and wait times in ER are longer than 5.5 hours even in emergencies. My aunt who lives 2 hours away came to "watch" dad - that's all she did, she didn't feed him, clean him or put him to bed. I came home to find him sitting on the sofa full of pee and poo and starving.

So the community care found him a nursing home bed for a temporary stay. When I could get out after mom went to sleep (thought she would be paralysed for life) to visit dad, he had been assaulted violently by his mentally deranged room-mate and was whimpering "why do they have to hit me?". Yes in Canada they put sane patients in the same room as mad clients.

2 and a half weeks later, I checked mom out from hospital and she uses a walker and can no longer care for herself and dad. Dad was drugged stupid in the nursing home and was a zombie (yes they drug them when they ask for help too often which he couldn't help since he was blind). The caregiver I hired at $25/hr to look after him at the nursing home (the nurses were not doing their job) left him peeing in the chair and searching for a cookie he had dropped on to the floor. The wheelchair was in front of him without brakes while she went out for several hours lunch. I could have strangled her, but they are protected because our country is "full of old people needing help" and there's no defined standard of qualification for PSWs.

I hired 2 caregivers to look after them while I tried to keep my job but it was in vain. They sat around ignoring cries for help, calling their friends and reading Facebook if not eating breakfast or lunch or tea. At 25/hr for 24 hours around the clock for a month, I spent the equivalent of a year's salary with a health agency. Immigrants from Africa, China, Philippines who could not speak English came and had their vacation in our home.

Now I work 3.5 days a week, have a private caregiver 3.5 days a week from 8am to 6pm and do everything else myself, and I am exhausted and numb. My parents are not picky, are trying their hardest to be self-sufficient. But the quality of care in Canada is expensive, low quality and not free at all. It is the broken healthcare system that is killing us.

Go for a tour at the nursing homes and everything is orderly and pristine and everyone is working fast and smiling. Drop in at night after dinner and the nurses are hanging around chatting, while the residents are neglected, crying, dirty and smelly and neglected. If I die looking after my parents, I will not put them in a nursing home - with abusive room-mates and nurses. Hey, I live in poor suburb in Toronto, what can one expect?

We tried to get home health but we could only get 4 wks, twice a week. That was it. We could have someone to come in and give bath but the price was 25.00 per bath. Any thing we needed help with came with an itemized price list. We have some long term care but it will only cover licensed personnel. The people who make the worst comments to you are probably the ones who have no idea. You are trying to balance your life and provide care for your loved one. I have tried everything for seven years but I still feel guilty because I placed him in nursing home when I could no longer do it physically. They do not offer help when you need at home but they sure can offer comments after the decision has been made to do something else.

I had no idea! I"m not the only one falling apart, depressed, hiding in my bed, avoiding my friends and family! I feel totally unprepared for this. So far, my solution to my mom not cooking and not letting me cook for them is to "invite" she and my dad over for dinner. Now, how do I get their messy house clean? Ninjas? Hello everyone, I'm new here-in case you haven"t guessed.

Thanks for this article. So "dead on". :-)

Llamalover47, I can certainly relate except I left Massachusetts to live with my parents and was told by my mom that I did not have to do it because she did not want to disrupt my life. But I knew it was imperative to make the move. Mom passed 7years ago but I am soo at peace about what I did for love. So kudos to you for not listening to your relatives. It's not worth it in the long run!

This article was so reassuring and timely it has only been a month since my mom moved in and I feel like I'm spinning out of control. I've lost my independence, freedom, self- esteem and my social network in one month! My mother does not like to be alone so leaving the house is always an emotional battle of wills...to say nothing of the guilt that I feel.

If your parents should live long enough, we will all be caregivers at some point. For my mother who lived several states away from me, I became proactive. By that I mean that I tried to get her into an AL in my state (Maryland), where another extended family member resided. I knew that they would become friends quickly because they were similar in nature. My mother who was living alone in Massachusetts in her own home dug her heals in big time and said no it. She even said no that she didn't need any help, while her blood pressure was running 60/40, until I arrived at her doorstep to live with her for 6 months, culminating in her death from a stroke. No, caregiving is NOT easy, but you do it out of love. Many of my extended family members said some things that were incredulous to me,i.e. "just trick her," "just move her into your home or an AL," "you CANNOT live with her," and on it went.

In Georgia you can forget any assistance. There are no longer any programs for caregivers. I can't even get home health any more!

Thank you, Cindy, for the insight and good advice. I would add emphasis to the "isn't easy" part. It's hard to stay focused on these basics when constantly having to react to the ever-changing needs of the elderly person. Discipline and creativity are required and there may be setbacks. But as long as we never give up, it is possible to protect our own wellbeing while giving loving care. God bless us every one!

My husband is in nursing home and while this takes care of bathing, lifting, etc. I am there everyday. I feel I have to do this and he gets very tearful every time I leave. The nursing home where he is has a top rating but I have had to be on top of his care. It all depends on his CNA for the shift. I come home and so tired emotionally. I have refused several offers to meet and have lunch. Very depressed especially after the holidays. I have considered counseling but that is another cost. I have to be so careful with finances. Sometimes I just spend my precious time at home crying and wondering - why us. This is the hardest thing I have ever done.

This is avery goof picture of the caregiver.

Wow, I know these comments are a year old but how apropos are they now ! Caregiving has it's own continuity of perceptions. It is so helpful to see the full range of caregivers and their honesty thoughts about themselves while you more through the various realities that accompanies caregiving. Thank you all for always adding wisdom and much needed perspectives to my own journey of love,

Oops. Forgive me. I should have written " I agree with what Cindy has to say in this article about empowering yourself in this role".

Hi everyone. I am not sure if I should be on this forum as my caregiving has been for my son and not a parent. I feel for you all so deeply and just want to send everyone a hug!
My caregiving journey is different in that it began 33 years ago and has continued since then like a rising and falling wave of hope and despair. My son has multiple phobias - the worst of which has been agoraphobia but he also has severe body dysmorphic disorder and social phobia, as well as others. These have been crippling to him at times and caused him to become depressed and turn to substance abuse which he thought would solve his problem. It's a very very long story and I can't possibly tell it all here. I just want to say that because of the little selfcare plan I adopted 20 years ago I have thrived against all odds, despite being his sole support for much of that time. I agree with what Carla has to say in this article about empowering yourself in this role. I have done that over many years and I know it works. My heart has been broken and my hopes dashed countless times yet I still smile and reward myself by finding the beauty in every single day, even when things are in crisis - ESPECIALLY when things are in crisis! I am not religious but have a personal spiritual faith which has really helped sustain me as well.
I do hope it is okay for me to post here. Bless you all. You are heroines in my eyes!

Enufcraziness, you have backbone. So many are caring for elderly parents that do not want to and resent the very people they love. I feel the same way as you. I help my mother when I can, but refuse to alter my life to make her life the way she wants it. As her POA, I will ensure her assets are for her care, but not as her caregiver. I admire those that are caring for those parents, but also respect those who chose not to.

whew! there is so much sacrifice going on I almost feel guilty for not doing more! But I do not have the strength all these caregivers have. I've quit the caregiver-of-mother job and letting the chips fall where they may. Fortunately she's not in my home and still in her own and some other siblings are picking up some of the pieces (see how long that lasts!). Feeling selfish and loving it!

Wow, I wish I had seen this when I first started on this journey. It would have given me a back bone against the "guilt" that parents can impose on you as a caregiver. Not all parents are good people at the end, and you can become their target to release their pain and frustrations. Just a little compassion for the caregiver can go a long way in your psychological handling of overwhelming stress and burdens. Just reading everyone's stories, and realizing that we are not alone, and that others stories can speak to us in some strange directions. This article gives us rights, as human beings (not machines) to have time off for our own lives, the ones that existed before caregiving took over all of our time, and our minds. I found this very beneficial, even for a reminder. Thank you, Carla

WOW... HUGS TO ALL... Week 10 of caring for my mother..
Mother and I took off to have a change of Space. Place and Pace..for 3 Nights..during Christmas..Back home we go in the AM...We both enjoyed it.. What she can and IF she can remember ....My siblings stayed clear of her during the Holidays.. When they do visit.. Sister ONCE in 10 weeks..Brother every other week... Not one of them offer a Overnighter.. YES I have asked.. Its more about How am I spending the ALLOWANCE Hmmmm... Instead of Enjoying time with Mom making Memories to me is KEY
I have had my ups and downs for sure....I try to regroup .After a GOOD CRY... stay calm.. IT is Hard.. when Mom has her days she is so confused and says unkind things..
Being a Former Pre K Teacher.. I Thank God for that Spiritual Gift..And for this Place to VENT...
To Be Continued..

I read this article with my husband and it became apparent that I'm having a life crisis. I get scared thinking about how long this is going to go on, and how will my health and life be affected. I can see from the responses of those further along on this care giving journey, it really takes a toll on you. I've been very curious to know how caregivers take care of themselves at the same time. Everyone always gives me that advice but no concrete solutions.

I need to find a way out of this..!!! I am not a nurse..I hate dementia..and what it is doing !!! CRISIS...yes..we are past that..he is tearing up the truck tailgate and tail light by having something wedged in it..jacked it up..when we were raking leaves..he killed all the fish in the fish tank spraying wasp killer all over the tank and food and then saying he did not do it...He dumped coffee on the drivers seat of my new car cause he was mad that he could not drive my new car..I paid for myself with no help from him....I just cannot be a caregiver...I feel like I am GETTING DEMENTIA myself..from having to deal with all this...I HATE MY LIFE!

"Understand that you must be at the top of the pyramid". I guess this is the direction I've taken in order to recover from my knee surgery. My husband tried the "poor me" routine several times. It's poor me not because of me, but because it's all about him Dementia has compromised his ability to reason or carry through on tasks. He is still able to function marginally as long as I'm nearby. I'm in my 3rd week post-surgery and as of week 2, I just decided to eat breakfast alone, grab only the few pieces of laundry I absolutely have to have. This forces him to do a few things for himself. As someone develops dementia, there is little consideration of others. My compromising my recovery at this point will not bring back his clear mind, his love or consideration for me. Therefore, I've made peace with this and concluded I must make it about me for awhile. So, yes I try to remain on the top of the pyramid. There is no one to boost me if I fall, so I've had to let him just do some less than desireable or healthy things for our household.

You are describing my life.

You are describing my life.

i like all of you are taking care of an elder. My mother in law is and has been diagnosed as, bi polar, with bouts of schizophrena and depression , and early onset of dementia and altzhimers. whew i got it all out. she had been with my sister in law for 6 weeks last year and was in and out of the hosptial in ny when she was there. then she went home to florida and we got another call . come to florida and get her. well she has been here since january and in the hospital twice so far . inbetween we had to fly to NY for my fathers death, airports ! that was fun. nothing like having a grouchy hubby cuz he hates to fly and a 66 year old toddler running around wanting to smoke. yeah she smokes, alot. my house now smells like smoke , my new car smells like smoke, i smell like smoke . I hate the smell of smoke. And while all this is going on we are trying to sell the house ! i will say things have gotten alot better with the last time in the hospital . new meds are working wonders. Now for the problem, her only insurance right now is medicare . she did not sign up for part D . so no perscription coverage. Last round of medications were 1459.99 just for ONE !!! i found cupons on line that got it down to 685.00 for a 1 month supply , and that was after i spent 4 hours on line . I feel guilty because i actually enjoyed the last two weeks she was in the hospital it gave me a reprive. my sister in law can not keep her because she has teenagers with thier own issues, and my brother in law well hes just a jerk. he cant handle seeing mommy like that . Really ? jerk. so since i am the only one home and my kids are all grown and i just got the last one to move out with her two kids i am now the proud caregiver of a 66 yr old toddler !! yeah me :)~

Oh, I so can relate! I never expected the rest of the family to turn out to be so selfish, with their time, nor did I expect that I would be so totally tired and drained, both emotionally and physically. At this point, I'm looking for alternatives, to allow me desperately needed down time. Sadly, it certainly won't come through family. The sad reality is that if I want resprite, I must seek and find it,,myself.