Certainly happened to me - because I neglected my own medical check-ups - my neurofibromatosis tumours in my spine have become inoperable and I am permanently on a walking frame - and I am only fifty.
The saddest story I have heard was on talkback radio one night a few years ago - a 77 year old daughter was FORCED to be sole carer to her 97 year old mother with severe dementia. Because the selfish mother wanted help from no one but the daughter, the daughter was legally compelled to care for her mother - in spite of the fact she was disabled - and elderly - herself. The time came when the 77 year old daughter needed life-saving surgery - but she was not allowed to have the surgery as it would have meant her mother would have died because of being unable to look after herself - and unwilling to accept outside help.
I personally know a lady somewhere between 60 and 70 about ten or so years ago who was forced to be sole carer to a very elderly mother who very selfishly refused outside help - so this poor daughter was forced, for ten years, to be sole carer to her severely demented mother who was also extremely violent. Finally, the mother died and the daughter finally had her freedom to have her own life and start seeking employment. She got voluntary work. But alas, she got breast cancer and died. The breast cancer was caused by all those ten years of stress.
BTW, I suffered intense stress and abuse from 2002 to late 2014 --- first abuse from my late father who got severe dementia --- and then my mother who got severe dementia after dad died --- my doctors blame that for my now severe neurofibromatosis and eczema.
I am upset with my brother and cousin. They undermined me at the last facility and it did great harm to Mother. That was the worst. There is other monetary matter which leaves me stressed. Someone said, brother got the money and sister got the work. Brother was last here two years ago when he had a wedding to attend of one of his friends grandchildren. We saw him and his wife at a restaurant for about 45 minutes. Mother never stood up to males but always did a good job asserting herself with me. She has no problem telling me what she thinks and feels. That is a good thing. When she tried to protect me or herself with my cousin and brother as to what she wants it is projected that I am the undo influence and she quiets up. She hasn't been able to counter that. Mother is pleasant and loving and loves peace and that everyone "gets along" . We have our stressors.
My son, his wife and I are blessed with these years with Mother as we have the close loving family situation I have prayed for all my life. I haven't found peace but haven't given up either. It helps to write things out. Will keep all in prayer whose LO antagonizes and is dangerous. Don't give up your health. Fight back for your health a little here and there. What will happen to your loved one if you die. Haven't figured out the rest of it yet.
The constant vigilance and maintaining boundaries and self-care often feels like another joyless task. All too often, this crucial task is the one that gets tossed to the wayside.
Now that I have stated the obvious(!), what next? It's an individual call. Start with something that separates you from The Constant Need. If you have a spouse and kids, factor them in as a priority. Your mileage may vary.
I've ranted and talked tough on this site. And I have failed at most of what I advise for others! Remember, YOU matter. You really do.
The world won't end if you give yourself a calculated break. Your "charge" might become unhappy at the change of routine. Or resist complying with a plan that is not his/her choosing.
And what's the appropriate response to this static? TOUGH SH*T. I'M JUST AS IMPORTANT AS YOU ARE. (Not angry caps. "Attention must be paid" caps!)
It doesn't mean you are selfish and don't care. It simply means you have every right to be a whole person during caregiving. And every right to have something left in the tank when it's over.
Your attitude about self-care and needing breaks/separation will dictate everyone else's attitude about it. You'll still get resistance left and right.....and you'll never experience the miracle of someone else caring about your sanity more than you do.
So yeah, you don't need one more job to do! But this one is extremely important. Shuffle what you need to to make yourself and your spouse/dependents a priority.
We'll, I've stated the obvious enough for one day! Carry on, good folks.
We do tend to neglect our own health at these times. I was diagnosed with stage 2 breast cancer, had a lumpectomy, chemo and radiation while caring for my mom who lived next door. My mom had severe COPD. She never drove or made friends. I had 2 sisters and a brother. One sister would come once in a blue moon and thought she was helping. I begged my siblings to help with my mom especially when I had cancer. I also wound up with a bad back and anxiety. I loved my mom, but she didn't want any outside help either besides family and I couldn't even get that. Only people who are the main caregiver know the experience we endure.
Her advice - realize you are in it for the long run and start at the beginning as you tend to go on and her advice is 1) get in help, spend the money and if the care recipient fusses - too bad 2) take care of your health - physically & mentally (she let stuff go and is now suffering) 3) get respite breaks to do fun stuff - not just grocery shopping (she missed four years of grandkids games, events, and that time is lost) 4) get help in the house - cleaning and yardwork especially 5) place the care recipent sooner - when the doctor recommends - she kept dad home about three years too long
Due to the four years of constant attention on a difficult man without many breaks - she ended up ill herself, exhausted beyond belief, missing valuable time with grand kids that she cannot get back now that they are in college, and she ended up hating my dad for making it so hard to get help and hating herself for giving in to him
Take the advice of those on this site who have gone through care giving
I always though that we had a very close family and I never dreamed that they would actually turn their back on me and Mom. I was fortunate that Mom did have money so I could hire a caregiver to sit with her in the day while I was working. I went through 4 of those over the 4-5 year period it is not easy to find someone to do this job and to be honest I would not want to do it myself.
Mom finally fell and under doctors advise we placed Mom in a home, it was no longer safe for her to be at my home and my stress level was unbelievable. I feel like I use to be a very healthy person but since all of this has happened, No longer can I say that. I have always had issues with my lower back, sciatica nerve and I'm vitamin deficient. I have to take B12 shots and prescription D all the time. I use to be a size 8 about 4 years ago and now I'm down to a size 0. This is very embarrassing to me. My sister broke down last summer and took Mom for about 3 1/2 months which at the time I of course welcomed the help. Now in her mind she feels like she helped all along and everything is good between us.
In all actuality NO, its not but I have just gave up arguing with her and my niece. I now have panic attacks and I have Never had anything like that in my life, I have for 3 weeks now had such bad headaches on a daily basis that I had to go to the doctor. Twice they were so bad I became sick to my stomach. The doctor told me they are stress headaches and they are turning into migraines. Again I have never had situations like this in my life. I LOVE my mother dearly but people have no idea what it does to you to see your loved one in this type of situation. Again, My sister tries to tell me that I am just a nervous person and that I need to calm down. Well that is easy to say when you live 1200 miles away and do nothing. In here mind she thinks that its all good. When you are going through something like this and grieving for your loved one and you have someone look at you and say OH I understand!!! it blows me away, I just want to scream NO YOU DON'T UNDERSTAND!!!! My friends came around for years but its even to hard for them to go see Mom. Most the time she just sits and stairs and when she talks she is making less and less sense.
I am very depressed, I have spoke to a doctor and yes I'm on anti depressants but they don't really seem to work or maybe I'm just to far gone. So I'm sure you can tell from my letter that YES!!! I totally believe this can take your health down. I can't stand to see my Mother like this but I know the only alternative if not something that I want to face either.
People tell me that it does not matter if I go see her once a week or once a day, they say she has no time registering. I can't do that I go every other day and the days that I don't go even if I go out to dinner with my husband or watch a movie I am riddled with guilt that I'm not with My Mom.
So well said. It sucks! It's not fair! I feel for you...-
It is the hardest job you will ever do. Especially if you cannot afford help and assistance. When your patient passes away, you will be at a loss as to what to do with all your time. You will hurt all over from the tension that covers your body. Holding your neck and back stiff by habit. I would say unless you truly wish to be the caregiver, don't do it. The patient did not choose to live this long. The patient did not choose what illness will be their end. I would love to hear more positive thoughts about caring for our loved ones. I could the years when I cared for my husband as a Blessing on him and just saying Thank you as he loved me so much. I cared for my partner for 4 years. That was difficult, but I WANTED to do it. I believe I have fulfilled my caregiving in this life. I also know how hard it will be for my kids and will do everything I can to not make it any harder on them. I pray daily that God would not give me the Memory issues. All I can do is Pray.
I hear you. I think we all start out with good intentions. And for so many of us women, we want to help but then we fail to recognize when we need to step back or make alternate plans when things are escalating.
Like you, I did want to care for my dad. I was still in my 20s when my dad was in his 60s. I managed the household, paid the bills, did the yard work and anything else he asked me too. Then he had a stroke in his 80s and it was hard. For almost three years, I tried to manage his care till his passing. And you are so right, I am still dealing with my grief and the loss of my role as his caregiver. It is hard no matter which way we cut it.
I do sympathize with the others as well. People are angry about the burden and responsibility. Its hard to find the right balance. None of us are perfect, I still have so many regrets. And after all the caregiving, I am struggling with some depression.
Something to consider if you are contemplating taking a loved one into your home.
During the last few months I have commented on various medical conditions and my experience with them. The other day I wondered...everyone on this site must think I am a medical train wreck. That is not the case. 97 percent of my ailments occurred between February 2010-October 2015. That is the time period in which I was caregiver to several family members with short periods of caregiving for more than one person to different degrees.
The ailments that occurred during those years of stress levels that were off the charts included:
Stress related chest pains and shortness of breath that landed me in the hospital overnight for observation, chemical stress tests, and other various tests.
Discoid Lupus which appeared for first time. I was told stress caused the flare.
Upper back spasms that rendered my upper body pretty useless. Dx...stress related.
Hearing loss and low pitched rumbling in one ear. Dx...stress related...was told lady you are gonna have a stoke...
Shingles at age 52 on an area of my body that they certainly would not show on TV...you guessed it stress.
I am sure there are a couple more ailments I am forgetting at the moment...oh yes forgetfulness and trouble concentrating...Dx stress.
I was pushing on, cancelling Drs appts for myself to make sure everyone else was taken care of. I was doing a bang up job as a daughter, stepdaughter and granddaughter and caregiver but at what cost? The cost was to my own health and well being.
The last of my elders to pass away was my Mother in October 2015. Fortunately not one of the above mentioned ailments have reoccurred or flared up. Fortunately I am ALMOST back to my former self. Unfortunately I am not a very good listener. I did not listen to what my body was trying to tell me.
I didn't have to read far before an alarm bell went off making me realize how much you let the situation control you to the point of neglecting your own needs. If you had even underlying problems and other issues, there comes a time to break away from caregiving and just go take care of yourself and everything else can wait. You're a doormat without boundaries and you let others rule over you when really you need to set healthy boundaries. You really need to research how to set healthy boundaries and quit being a doormat with a welcome sign. I don't know the whole situation since I'm not really there to see it but you need to learn how to say no especially since you neglected yourself to the point of disability and it's all your fault for allowing it but thankfully for you since you're still alive, it's not too late to change that. The first step is always the hardest when you must take the initiative and do something different but each step after that gets a bit easier and it continues getting easier later on. Each step you take in the right direction gets easier and easier. You need to take care of yourself now especially if you have any conditions that could end your life. The patient may be barking orders right at the time you need to go do something, but have you ever thought of putting some earbuds in and listening to some Christian music or something like a podcast? Turning it up but not enough to hurt your ears will help to drown out any unhealthy verbal abuse you may be getting.
You don't have to do anything you really don't want to do, you agree to it whether you want to or not. You don't have to do anything you don't want to do, you choose to do it, they taught about this in FYE in my first year of college. You agreed to take care of the aging parent because you chose to cater to those demands and put yourself under that kind of stress. You have free will, you're not a programmable robot. You can say no and actually do the opposite of what you're being told to do, you have a God given free will and you can choose to say no
Here is a sad story
I new a family and their son lived with them but he lived in a camper out in the yard. They had so much stuff piled up in the house that he could not he lived in a camper out in the yard. They had so much stuff piled up in the house that he couldn't even have his bedroom. His parents especially his mom was extremely controlling. These were definitely not the people I once knew, but it seems like either I found out what kind of people they really were or they just changed with the age, I don't know for 100% sure either way. When I saw what she became, I noticed she started barking orders and threatening everyone and even screaming at times. One time she started threatening me and I had just knew I had to take the initiative and quietly walk out, get in my car and get out of there as fast as I can. Now looking back at the situation today I wonder if she may have had some level of dementia or Alzheimer's and I just didn't know how to spot it back then. When I left though, I never returned but I since found out she died shortly after that incident
My father sexually abused me, and his girlfriend died 7 months ago. Since then, he (89) and my mom (87) have started talking on the phone frequently. She giggles and flirts and this hurts deeply. I told her through many tears how this affects me. She just says things like, "You don't kniw how hard it is for me to be put in the middle" and " he doesn't remember- it's been 50 years." and "when I'm nice to him on the phone he sends me more money and I need it."(she doesn't) i am getting so fat and unhealthy from choking down the pain. I can picture me dropping dead from a heart attack or stroke and her continuing on. I am trying to find the strength to care for myself. Thank you for this forum. I feel hope.