Thank you for this article. I have been 24/7 with my mom for 5 months. I received a respite care grant from Alzheimers association for private home care. Now my mom is going to adult day care 2 times a week. We are on a routine now. It's not the beach but at least I can breath a little. We all need to find a way to get a break. How can we help others if we don't first but the oxygen mask on ourselves. Love to all. I will say a prayer if all of us doing This painstaking and backbreaking work.
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I am struggling with all of these symptoms, and feel most days that thee is no end in sight but my demise. I pray all day for the strength to keep going, but, still can't shake this devil from my back.
I have forgone most of my relationships, and have incredible resentment towards my siblings for leaving this for me to deal with on my own.
I feel gutted and emptied. I feel hopeless.
Never suffered with anxiety attacks before and now they are a regular and daily occurrence.
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I'm so stress, I'm taking care of my father in law. And I have 1 support. And it's from my husband. But he tend to work all the time. And it's seem like the sister in law (husband's sisters) are stressing me out even more. All they do is tell me to do this and do that. As if I'm not doing a good job. Makes me feel low about myself. I gain weight. I don't go to family events anymore. I'm always home. No one is willing to watch my father in law just for a while so I can visit my own family. I have back pain. My wrist hurts. I'm more emotional now.
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I got pain by carrying my grandmom. I become to forget I love her . I dun know where my patient go. I become to shout a lot these days. I give up my plans and dreams. Dun know what else.
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Things have been getting worse. Sibling problems. Mother who is constantly expecting me to help her, making excuses for why she can't ask 2 other siblings (the goldens) to help her. Constant stress coming from mother and siblings not listening to me, completely disregarding my schedule and family obligations, which I've told them repeatedly months in advance, and waiting until the last minute expecting me to take care of things. Why aren't they listening to me? Siblings who live at a distance and live a nice easy life away from all of this, aren't expected to do much, if anything, but who criticize and make nasty comments. While I'm burned out. We don't live around the corner from my mother, but she acts like it -- we're an hour away, a two hour round trip drive. I can't handle all this driving. I have fibromyalgia, I'm exhausted. In-laws who expect my husband to spend a lot of time every week helping them. (my mother and siblings know this, but disregard it) I feel like I'm surrounded by people expecting us to help them. How problems in your marriage as sign of caregiver stress? I don't get understanding from my husband, I tell him I can't take it anymore, I'm exhausted. How many times do I have to say this?
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I definitely have caregivers stress! 3 siblings, no help. 2 don't even bother to visit. One visits a few times a year, and they are all within an hour. My Mom CAN do things for herself but doesn't want to. She fired hired help because it was a waste of money when she can do it all herself. I said but you don't! But she can! But you DON'T! But I can so no help! She won't use life alert button or keep her cell phone charged and close. She doesn't even know where button is. She has fallen a few times but this is her way of keeping me from going anywhere. If I knew she had help within reach if needed, she thinks I would go out. I am disabled myself. Rods in back and Fibromyalgia. She is so much healthier than me but treats me like the help. She excuses me from cooking when she doesn't want something. There is NO talking to her about doing for herself. She makes up wild excuses for not taking responsibility for anything. She says she doesn't need my permission to go anywhere ( but wants me to ask hers) but expects me to just drop whatever I'm doing and go driving all over. She refuses to pre-order her meds, giving us a day or 2 to pick it up? She just rushes out and says "I'm out, go get it!" When I say, every time, Mom why do you wait to order? Its the pharmacy's fault, they don't stock it, have to order it. I said MORE of a reason to order ahead! She gets mad and yells at me that THIS way is easier for HER! She has no care for anyone else's time. She has nothing to do or worry about so she thinks everyone in my house is the same and just waiting for her to need something. Its not a treat to help her. If we do one thing to be nice, its forever my job! And she blabs all our personal info that she can find out to anyone that will listen. Then she wonders why we don't tell her much. As soon as she hears anything she will RUN to phone to make calls. I sit here 24/7 and she tells people I leave her alone all the time because I'm not sitting there in the same room. 6 years I have tried to get a little of my life back and every conversation ends the same....she cries, yells, threatens, brings up how SHE was raised and says she's moving out! She can't move out. She gave a few hundred thousand away to kids so she doesn't have enough money ( and they still try for more but do nothing ). I was actually told by one siblings that if I need help then MY husband should pay for it because it would only benefit ME not them! The money they got was supposed to be early payment to HELP me, now I do it all and they want us to pay too?? Mom lays on guilt that we don't do for others! She thinks if we do for her that we should pay or physically help them. No!!!! These people have already been given houses, cars, large sums of money and have 2 incomes. We were given nothing but the responsibility and STRESS and we only have ONE income so I can babysit her! I guess I am beyond stressed!!! Sorry for the book but thank you, thank you for giving me a place to vent! This is only tip of the iceberg!
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Well this article really helps. In other words, it is not as stressful as I percieve it to be, it is just in my genes. I have all those symptoms you have mentioned. I have no support. I guess if I had better genes I wouldnt be going through this and I might be able to handle and not be so weak.
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Check out to see if y'all have a local support group n in addition check to see if their is a alzheimer's association in your area. here is their webpage. also, their # 1-800-272-3900 You should be able to call anytime n please vent, vent, vent for it does help to get it out of your system when you get frustrated from caregiving. Not everyone is cut out to be a caregiver n as y'all can see it takes a lot on a person. Their is also a Agency on Aging if you let you mouse hover over "Caregiver Support", look for "Find Agencies on Aging," n they should be able to help some too. Every little bit counts n remember to take time to breathe for yourself. I hope everyone here is able to have a good day. ; )
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I pray for all of us. This has been the most eye-opening 2 years of my life. I am glad we were able to care for Mother but would I do it again...not in a heart beat!

The stress from outside (siblings) has been something I never imagined.
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I am so burned out I just want to sob... Eighteen years ago my husband and I sold our house and my parents sold theirs because we knew my fathers health was bad and that my mom would need care. Dad died (in a hospital bed we had put in our living room so that he could look out on the beautiful trees) 2 years later as I held his hand. Mom was able to remain fairly independent for a long time but now she is 91 with significant dementia which has gotten worse over the last 6 years. Much of the time she doesn't know I'm her daughter. We've put baby gates to the family room because she fell twice on the step down. All the doorknobs have protectors so she can't open them. She packs up a few of her things off and on throughout the day. I keep unpacking and putting things away. She keeps waiting for my dad to come home. (died 16 yrs ago)Looks for 2 of her siblings who died in 1926 and 1937. Keeps asking where her mother is....... I bath her, assist her with dressing, spend every day with her trying to keep her safe and contented, making sure she eats and drinks, do her wash ... One of my brothers died a year ago, the other is in prison. I feel so stuck, and so guilty for feeling stuck... My husband helps in the evening and my adult children help when the can but their lives are busy. One daughter comes for a few hours one day a week so that I can help in my other daughters office. I just feel so helpless...
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I am experiencing 9/10 of these....so, now what?
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I am glad I saw the idea of a camera in the room for that will help us down the road. I also heard someone mention on another place that she uses a baby monitor so that you can hear from the other room something is wrong. to hear and take care of love ones. I especially like to take the person up on the beach and dophine for that really sounds good. I can hear the sound of the ocean waves.
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Is there state funding to help us pay our bills when we give up our jobs to move a disabled person in our home that requires 24/7 care?
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Sherrie1238, it sounds like your Dad is lonely. Hard on you, of course. Are there any volunteer groups that have visiting volunteers in your area? These are usually independent elders so at least there's an age in common. I am thinking of looking into that for my mom though she has Alzheimers and I don't know if they'd want to visit with her. She's a very social person and thrives when others interact with her. Maybe that's what your father is missing.
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LOL.. I gave my Dad a BELL! What was I thinking??? argh... somedays I just wanna stick that bell where the sun don't shine... of course I come running to his room, with my usual smile, Hi ya Dad, whatchya need? sometimes it is something ridiculous, like...can you loosen my socks for me? or I can't find my favorite tv channel... seems right when I am in the middle of getting something accomplished around the house... Ring Ring!!!! My husband just Laughs....I'll say a few things under my breath, before I enter the room, to get it out of my system, before I open my mouth and hurt dad's feelings, but Sheesh!!!! I really hate that Bell! LOL
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These comments have really helped me, even more than the original article. I think I will see if there are support groups locally that I can attend. I care for my 86 year old father who has Cerebral Palsy. I gave up my job. I have been doing it 24/7 for about a year and a half. I am depressed and ill.
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lizard: I was just thinking about what you said above about "finding our way back to ourselves." It seems as though I have been living in a bubble for the last 3 years. When you care for an elder...no matter what their condition...it takes its toll on you. There is never an end to the things that need to be done. You are their lifeline until they pass. Then, just to add to the drama, you have ungrateful family who swoop down for anything they can get from the will. It never seems to end. There has been so much going on this last year, that I do not think I will EVER find myself again...I used to be fun, now all I feel is grim. I have no help from the sib and my extended family are putting their parents in facilities as fast as the can.
At least I am doing the humane and, I think, right thing for my Mom. As far as it being rewarding....not feeling it yet....
Lilli
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My husband's 93-year-old mother has been living with us for the past three years. She has congestive heart failure. She is now bedridden, unable to care for herself. We have hospice coming in twice a week. She is now sleeping for long periods of time, having hallunications some of her awake time. We are "lucky" as my husband is retired, and our 38-year-old daughter lives with us. My daughter and I both work. We're at the stage where we check on her to make sure she hasn't died. Stressful? Beyond stressful at times. Family members live close by and come for short visits. However, after having over 30 people for Thanksgiving dinner and wanting to pretty much kill myself afterwards, I finally said NO to Christmas dinner at our house. Too much work, too much visiting for Mom. She is a great trouper and knows her time is near. I hope I can be strong enough for that time and that we can all find our own paths back to "ourselves" once Mom has passed away.
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RachelD, you need help!!! WHY are you looking after your grandson as well as your parents? Too much is being expected of you!!! Can your parents afford for your father to be placed in a care centre? Do you have a husband in all this or are you on your own with all these dependents leaning on you and sapping you to depletion? I imagine you are SO tired that you feel you haven't the energy to make changes but you are going to have to or before long you won't be around to look after anyone. Imagine this WAS the case. Where would these three dependents go then? Would they survive? And how? If so, you must find the energy to move them towards this new scenario so that they and YOU can continue to live. If you continue on as you are, you will soon be too sick to look after anyone for ANY period of time and then changes WILL happen anyway. So please work towards making the changes happen BEFORE you absolutely fall to pieces. You sound like you are so close to the brink now that I feel you MUST demand changes immediately. I hope for your sake that such changes are possible. Please let all of us know if any changes can be made. I know that some caregivers are in situations that seem impossible to change so I hope that this is not so in your case. WHY do you NEED to do all this? With concern, lcs
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Maureen....I just had a dream last week about ...trying to hang abstract art, and it was SO important this task that I work up like it was a nightmare I had to stop. I knew even in the dream that I'd had the dream before and didn't complete the task, so when I work up this time, I didn't let it slip away. OK, what is this about. It is about EMPTY SPACE. For abstract art, you need space around the piece to appreciate it. Only rich people have that kind of nothingness....we poor folks are space deprived. This society says MORE MORE, but More of LESS IS WHAT we need.

The physical aspect of this dream is too obvious, my house is messy, Ok, what it REALLY meant was that my brain is so FULL of battles I cannot win (deadbeat siblings, lack of privacy, doctor/med establishment immunity/impunity, knowing mom is on the road to death in spite of my efforts, legal system impunity, not afford lawyer to fight "them"...so many issues.) I CAN NOT WIN, but part of me keeps fighting. I WANT JUSTICE, JUSTICE. This is not FAIR. (And it does not help me to know this is the situation for millions of cornered family caregivers.) It has helped me to recognize these immovable boulders in my mind and to try to step around them instead of just pushing. Perhaps one day something will change outside to make these issues winable, but not now.

Perhaps compare to my situation. NO CNAs for over 7 years of sole caregiving. Three sisters who refuse to help, and often fight me, sometimes via legal system. Going through a whole AGENCY of respite caregivers, and not one understood "keeping your word...or calling if you are going to be late," and also putting up with passive aggressive behavior. Six teeth rotted out, two in front. No real income and not one doctor or dentist visit.

I have done this alone for 8.5 years, and now discover that probably most of Mom's dementia was caused by drug side effects. I finally took her off her last Rx a month ago, and with each one I got more Mom back. Three months ago, I had called for hospice assessement she was that bad. PLEASE, everyone, check out Beers Criteria and discuss trying drug removal trials, at safe pace. Some drugs need weaning slowly, some like insulin, you don't want to remove. If your doctor does not know Beers Criteria, then you have the wrong doctor. Mom is now reading National Enquirer and talking again, real requests and queries. Reading captions on CNN. (Before we were watching baby programs like Classical Baby DVDS.)

What to do about this stress. Best thing I have found is Tonglen meditation. Look up Pema Chodron on YouTube...she has some lectures about it.Very simple, can be fast...and is OPPOSITE of what you might think. google Pema Chodron Quotes With Tonglen, you can customize the visualization to accommodate your own religion or secular slant. It's quite remarkable in that way.

for help in the "this saved my life, you don't know..." compartment, you might want to check out author Clarissa Pinkola Estes Facebook page. She wrote "Women Who Run with the Wolves," 3 years on NYT bestseller list in 1990s. When I joined (LIKE button) her FB area, I commented "Remember me, I am still her caring for my 90 year old mother..." (We knew each other when I was a managing editor of a magazine)

She immediately shot back a comment. "Been thinking so much about you. Where you been? Caregiving is the most noble kind of fatigue..." NOBLE? N O B L E? It almost made me faint to hear that word...nobody calls what we do NOBLE.

The poems, essays and daily commentary on her page are like nothing I've ever experienced. Know that not only was this poet/storyteller/therapist an orphan (worse, a "foundling"), she was brought up in family/community of survivors from Hungary/WWII. She is a trauma therapist who has helped with refugees in Hungary, Columbine, 9/11 post-trauma, and teaches interns at hospital in how to relate to patients/hospice. She has cared for and "end of lifed" numerous friends and relatives, and not just courtesy visits either...down in the muck of it all. Hey, maybe she could be an EXPERT on this site.

Suggest all caregivers listen to her audio titled "Warming the Stone Child" about the orphan and abandoned child archetype. (Listen through earphones, her voice is so .. primal...soothing...wise.) She got me to writing a book about Mercy for our elders...and occasionally she'd email me a poem from her upcoming book on this topic. Wow, how appropriate about orphans,but now our elders are orphaned by deadbeat kids and society...and caregivers are orphaned by everyone except the saintly stalwart. You can download the audio program for less than ten bucks on the Sounds True site.

I found that this material, and her other audio programs and live webscasts (appropriately about Crones the next few weeks), give me a lot of solid ground to stand on these days.

So, this that I have written is not only from frontline caregiver, but from "managing editor," who had nice career once specializing in sorting out the real deal from the phoney baloney.

So, are we on topic...ways to manage stress..yes. bet I wrote about tonglen previously. oh well...
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I know what you mean about anger at siblings. I'm waiting for my brother to pay his bi yearly visit and make suggestions as to what I am doing wrong. I hope I'm wrong and he's at least supportive. Hang in there! Your Mom is lucky to have you to take care of her, and I hope you can get some relief for the stress you are under. I also get stressed with the CNA's in the house. It's difficult being on this end of the health care "scene".
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my stress has been manifesting itself in heart palpitations. I have been to the er 5 times in the last 2 months and all the docs say there is nothing physically wrong. I have had ekgs and echocardiograms. all come out normal. It is hard for me to accept bec I was a cardiac nurse for 20 years and it scares the heck out of me when i feel that fluttering in my chest. my 86 year old mom has severe alzheimers and is living with me. I have help from cna s but even that is difficult having someone in your house all the time.. My family of 6 doesnt help at all. but i must say 2 of my sibs help as much as they can. the other 3 sisters live 3 mins away and do nothing, maybe visit 20 m ins a week. I feel I could get a handle on this if my heart would stop skipping.. Stress is what they say is the problem. How do youget rid of the stress when you have such anger at your sibs, and inner turmoil from their lack of care. Also seeing my mom like this everyday is heartbreaking. Thanks for listening friends.
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This is mostly to address your own feeling of stress, helplessness, etc. However with a little ingenuity, you can inhale the stubbornness of others, their insensitivity....or handle our judgments of and agner with those who won't help. It is a very versatile technique, that you can actually do on the run. Mostly I just get aware of the situation and think 'Tong..." and I start to transform.

Hey, it's one tool, one that fits any religion, or no religion. Also, if you are trying the "breathe IN the light" techniques, there is usually no inner room in your thoughts for light to enter. It's like trying to drill down a mile to get to those trapped miners..

Google "Pema Chodron Quotes" and read a few of the "good read" page quotes. You may see how she approaches things.

Getting actual HELP. Oh, this will make you sick. Do you know why family caregivers do not get any direct financial aid? Cause somewhere way back we were defined by the term "informal Support," which by their definition means unpaid... So Help for Caregivers goes not to us, but to some paid licensed caregiver, some day care center, nursing homes, etc. Help goes right over our heads. Seen it for years. Finally discovered this when I read the Alz. Report from recent celebration week...oh, there was the term "family Caregiver" = informal support. I looked up term, and indeed it is the term used throughout the studies, theses, etc. and these studies are used to bolster rationale for legislation. Please everyone, challenge term whenever you find it.

The moniker that did recently change that has had a difference is "illegal alien" to "undocumented immigrant." We all know they are still ILLEGAL...but there they are by the tens of thousands demanding rights for some reason. And there would not be this public demonstration if the moniker did not first change. Waahh...we are just "undocumented," give us a break. In California gov's debate with Jerry Brown, Meg Whitman was made to look like an evil ogre cause she said "they are not undocumented...they are here illegally."

That's just to show the power of a defining term, the moniker for us is Informal Support. Kiss that government funding adios. Right over our heads. to the REAL caregivers, the "undocumented ..." lol... Really...Make sense?
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Apparently, AlzCaregiver, your technique is assimilating the reality one cannot change and transforming one's own stress-reaction to it into empowerment. Note I don't use the word "accept." This is because to me that word has a sort of hopelessness attached to it.

On the one hand, this might be worth looking into. On the other hand, sometimes a more action oriented response is necessary. For me, I need more help. Any kind of help and not just the words and offers with "oh I'm sorry I can't because..." when I actually do request specific assistance.
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I was reviewer of new age books and videos for many years. Interviewed many of those enlightenment dudes you see on PBS programs. One often hears advice to take up meditation or yoga to help deal with stress. Ok, but what kind? And is it against my religion perhaps, no time to take classes.

There is one simple method that takes advantage of the stress or difficulty and uses IT (the distress, bad sensation) as the springboard for transformation and release. As I described the process to my friends, all experienced in meditation techniques of the "breathe IN the good and breathe OUT the bad" variety, or visualize a balmy beach...they gasped when they GOT IT.

This visualization technique, called Tonglen, is backwards in approach. You breathe IN the bad sensations, even make it hotter and stickier and ickier, then breathe OUT cool airy and light sensation.

Here are the simple steps, and at some point if you want to wrap imagery in Christian or other spiritual slant, it's pretty easy to do so. Origin is Tibetan Buddhism and Pema Chodron is the primary teacher of it. Find her on YouTube, Shambhala books and videos, etc.

OK, first realize that you are NOT ALONE in feeling these stresses or pain. Your problem is not that special, and not so over powering that you cannot help yourself. So you have company, at that very moment, somewhere in the world.

Close eyes and then take a breath. Get centered a bit. Imagine, sense, feel, smell...visualize the bad stresses and problems, sensation, pain of your own problem. You can also do this on behalf of someone else. Ok, as bad as it is, put a little oomph behind it and make it even more icky. Usually adding hot and sticky sensation. At this point, you are saying, Is AlzCaregiver NUTS or what? Make it worse. Yes, and in addition, Breathe this IN...not spew it out. Breathe in the BAD. ick.

okay, now on the OUTbreath, visualize blue skies, airy feeling, cooling, freedom, light light light. Then IN breath with the same icky sensations as above, Out breath with the blue airy light. IIN breath with the icky stuff, out with the light and airy.

After doing this in and out breathing for awhile, you might just have the AH HA of your life. YOU, inside you, yourself...YOU are the transformer. Within, YOU are choosing to generate the cool transforming light. You are not begging for mercy from the outside, you can now dispense it.

As you do this, you may find the sensations of ICK change, just keep rewrapping the new version with a little more ick on the inbreath.

Ok, so it didn't work the first time, not for you. Regardless, you say, " I do this on behalf of everyone in the same boat at this time." Then at the very least you have done a benevolent act on behalf of humanity. Even stressed and miserable as you might feel, you have done a benevolent act.

At a caregiver conference, that I had to bolt from cause the respite caregiver was next to my mother at home vomiting...as I left the room, the speaker had a quote from Pema Chodon on the overhead projector. The quote was about leaning INTO the discomfort. Check her out. She has a Facebook page with some neat quotes, also.
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When I get overly stressed these days, my chest gets tight and stays that way. That's the warning sign to me that I need to back off. (I had an ultrasound done at a heart specialist, and it showed my heart was perfectly fine.) I've had to do that twice this year, once by leaving a part-time job that was too many hours, the second time, by cancelling three commitments, and finally by recently taking the first vacation I've taken in 4 years (a 3-day camping trip). It's tough, cause I don't have much money coming in these days, and besides helping my parents I'm also attending a community college and running a part-time biz of my own.

But I think my priorities are straight. My elderly parents (age 85) come first. They continue to need more help, and I want to be there for them. If I don't take care of myself, then I'm not putting them first, I'm putting all of us at risk.

Years ago, I had TMJ problems. Though one superclinic recommended surgery, I was fortunate to seek another opinion and get sent to a doc who used a neuromuscular palpatory approach to free up my 'locked up' jaw muscles once a week (then every two weeks), for about 6-months, till my muscles stayed freed up on their own. Years later, I developed repetitive stress symptoms and occasional back pain. Again, I got rid of my symptoms without surgery or cortizone shots or anti-inflammatory drugs like others around me were having.

I have since learned that when I get stressed, I tend to tense up and stay tensed up, which reduces my circulation and oxygenation to the affected tissues. In other words, ouch! A good book I read a few years ago was TheMindBody Prescription by Dr. John Sarno. It showed me why I was doing that and how to stop it before I start having pain and my muscles get 'locked up'. It worked, and I stopped having those problems.
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This article on stress hit home with me. I'm glad to have this online support group because it is hard to find friends these days. I've been caring for my Mom for 5 yrs now and looking back, I have been stressed the entire time, although it is actually easier with Mom now because she is sleeping more and is in good spirits when awake. She's a fall risk though and I have to hold her hand when she is walking.
I thilnk I may be a "people pleaser" and try to go along with what the other person wants, keep my feelings inside, then "blow up" and yell at them. I have been through about 5 CNA's whom I hired to help me a few hrs a day. It's hard having someone else in the house , but I plan on getting another one asap cuz I can't do it alone. I felt a lot better when I was getting out to take a walk or other exercise regularly.
I have rambed enough! good luck to all!
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I feel for all of you. I have been having trouble sleeping, cry easily and have been in the er for palpitations. All because of stress. My mom has moderate to severe alzheimers and i receive very little help from siblings. I do have help from nra's but even that can be a stress having people in your home all the time. I know that we are all doing the right thing, caring for our loved ones as they have cared for us. I pray for all of you.
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You were very wise to realize that no one can do it all and make changes before it impacted on your health it is a good lesson for all caregivers to heed sometimes it is easier to see how it affects others than ourselves I was able to tell a friend she needs to get help and was able to help her find agency and how to avoid problems I encountered when I was in her place in time.
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I was well on my way to many of these signs. I have gain about10 pounds since I became a caregiver for my god-sister. I was unable to sleep well and always tired. Fortunately I realized what was happening and made some changes that made life easier for me.

Some things I did included family help and friends who offered to take a couple of hours. I installed a camera in my god-sisters room so I was not constantly running downstairs. I also pull up the rails on her hospital bed so she can't get up at night.
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