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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.

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Wilma: PLEASE do not end your life. If you feel that way, please call 9-1-1.
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In ready to end it all! Just to get out of here.. same crap different day! Only child left home at 17.. back taking care of mother..4 years now.. not a blessing! Disgusted angry and sick of trying everything to help her and she doesn't want to help herself. Content having someone wait on her hand and foot! Sits in her chair all day and night sleeps there eats there chair side commode come wipe my butt on and on! Have in home therapy she won't do what she needs to get better fibs about what she does to the therapists which is NOTHING..73 years old COPD. Recovering from broken hip. No light at end of tunnel here just more crap..
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I developed lichen planus when my mother was hospitalized and it was determined she could no longer live alone and I had to find a facility for her. I had numerous visits to a cancer hospital to rule out mouth cancer. It is autoimmune so it will always be with me but has been mostly in a form of remission even though I am frequently stressed by her new ailments.
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I REALLY CAN'T GIVE ANY ADVICE TO YOU. IT IS MY OPINION THAT MEDICARE SHOULD CONTRIBUTE FUNDS TO HELP YOU TAKE CARE OF YOUR ELDERLY PARENT. PAY FOR SOME OF THE EXPENCES AND PAY FOR SOME HELP FOR YOU..
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What a relief to know I'm not alone. The sadness of realizing my mother, who lives with me, never really loved me in any healthy or normal way is ameliorated by all your comments. So healing.
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.
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I have to stop caring for my dearly loved ex-MIL because the lifting was causing me very serious pain problems from my own scoliosis. I had nursed my own mother at home until she died of cancer at 78, and I promised MIL that I would do the same. I just couldn’t! She went into a good care facility, and lived until nearly 100. For the last 3 years, she couldn’t speak, but I really believed that she resented me leaving her there. Four days before she died, I was talking to a nurse in her presence about my guilt at not being able to keep my promise. She made noises to me for the first time in years. I truly believe that she heard and wanted me to know that she forgave me and understood. It’s a balance. You do the best you can, and hope for a quick and easy death for all of us when the time comes.
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I am not forced to be Caregiver to my Mother. It is a blessing, to have the close loving family we have today, my Mother, son, kitty and myself are at the core that includes 5 generations. The stress I was put through being forced out of Mother's former "rouge Senior Facility" that had the cooperation and encouragement of the dysfunction part of "family" namely brother, his wife and a cousin. It has taken it's toll on me. It was too much stress. I was afraid Mother was going to die due to their bad acts. They dragged me through the mud. Thanks to Aging Care advice, many have advised me as we went through that saga, the doors opened for us to get Mom out of there. She has improved a great deal although the damage to her eyes cannot be undone. We are at a very nice facility for almost a year in a loving community close to my home and church of 35 years. Mom has greatly improved. Today was one of her best days since we moved here. I worry that I will die before my Mother. I promised Mother that I won't leave her. When I came back home in Jan 2015 I was in excellent physical condition. After going through witnessing negligence/ bad acts and criminal behaviors at the former facility, a number of other health issues have popped up. Something had to give way. Taking care of yourself isn't enough when you are totally stressed out for a long period of time. My stress started in March of 2016 or before that and started to end on or about February 2017 when we moved Mother to a better facility. MY Mother wants nothing to do with my cousin. My brother has me worried as there are flare ups when he threatens to interfere. He has nothing to do with Mother personally. He lives in a different part of the USA and doesn't visit or talk to Mom except 1 or 3 times a year. His thoughts and intentions are bad. As a Christian I am to love my brother. It is difficult because he harmed her and myself very badly.  
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Caregiving gave me profound fatigue, not really ill, but just an exhausted feeling much (not all) of the time.   
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I was already disabled before my parents went off the deep end. Between my disability and my independent attitude, I’m not wanted by my parents to caregive because I’m slow and have many difficult days where I stay in bed all day.
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I'm not technically a care giver but I've watched the decline of my parents for half my life and I've experienced stress levels so high in my personal life that I started doing self destructive things. Smoking cigarettes, drinking more, driving faster - I didnt want to die but I didn't care if I lived.
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dlpandjep Aug 2018
You're a beautiful and intelligent young woman. I pray you find the strength to work through this and get on with living.
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I thought it would never happen to me. Not taking care of myself. It creeps up. It is easy to relax on health, others get jealous in a dysfunctional family / offer confrontation instead of support or help when you need it. Mother is a joy. So be grateful for what is working for you instead of focusing on your LO who is difficult. Even if they weren't difficult there are always other things to stress you out.
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Yes, perhaps no one really loves or even likes caregiving, but aren't we better people for it? I'm not implying putting the carer on a higher platform, but don't we want God to say "well done, my faithful child" when it's our turn to depart this world? Yes.
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First, you can't be forced to do nothing, you must agree to it which is why you do it. You may not want to but it's you who makes the decision to make yourself cater to someone else's demands. You can be your own worst enemy by allowing yourself to be a doormat.
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
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Steins, I know your post is two years old and maybe your mother has (hopefully) passed on, but I just want to express my thoughts on your post. My husband and I are 72. His mother is almost 98. She went to assisted living last year, but after two months fell and broke her hip. Would not do rehab, just decided she wanted to die. She has been in a nursing home for a year. Cannot walk. Has dementia. We live 10 miles away. My husband goes to see her every day unless he has a doctors appointment or really needs to do something else. I go along sometimes, but not every day. That is just too much. He had never been sick a day in his life, but now he has high blood pressure. I agree with you completely about people always telling him how "lucky" he is that his mother is still living. He does not agree. They do not have any idea of the stress and anxiety it causes. I feel like screaming every time someone says how wonderful it is for people to live so long. If they believe this, they should go to any nursing home and take a good look around. With her 98th birthday coming up, we will be hearing how wonderful it is and we will be smiling, but wanting to scream, " No, it is not!"
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I was just thinking about this the other day.

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.
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I believe the figure is that one in three caregivers die before the parent they are taking care of.
Something to consider if you are contemplating taking a loved one into your home.
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I am just appalled at how ignorant people in this country are about the challenges that 8 percent or 23 million people have to go through because they have become the caregiver of a parent who usually is ungrateful and makes life almost impossible for the younger and unpaid family caregivers...No one talks about this and no one cares to offer any help when I have explained my situation and have basically lost my own life of enjoying anything as a result of taking care of my 92 year old father who constantly says I cannot do anything right and makes me feel terrible.
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Two years ago since than my mother passed away from medical neglect of the nursing home were she briefly was I am regretting many things as I miss her but I have ended up with bursistis in the left hip and walk with a limp just like my mum did my life is empty without my parents no family support other than get on with it
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Dear Oregongirl,

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.
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First being FORCED would not happen unless the person being asked agreed to care for the person asking for this. There are so many on here that seem to be angry about the caregiving position.

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.
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Personally it is the ATTITUDE about caregiving that in large part leads to stress and injury. Learn to deal with your stress and attitude and you will eliminate the illnesses that come with it. This thread is filled with so much hate. God have mercy on your poor parents that have to deal with this - even with the Alzheimer's. Honestly, it you can not do it then walk away but stop living with hate and blaming it on your parents and this disease.
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BeeBow2:
So well said. It sucks! It's not fair! I feel for you...-
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My definition of family is burden and pain in the butt. There is nothing funny or great about older generations living longer. My aunt finally died at 99 yrs of age in Oct of 2016. I thought I would never see the day. We are still dealing with my overbearing loud rude mother that is going strong at 85yrs of age. Caregivers truly deserve the best of everything in life. Unfortunately we end up dead, sick or too old to care. I am on anti depressants and anxiety medication.
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I have been taking care of my Mom for about 5 years with little to No help from my family. I adore my Mom and want to help her but The frustration alone for the way my family has acted put a lot of stress on me.

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.
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I spoke with my step-mom - who was home 7x24 for four years after my dad's stroke. Initially my dad was still pretty well mentally and physically but he has always been a difficult, stubborn man and wouldn't let her go to bowling or out from the house for a break. Then as he weakened and couldn't be left alone - he raised a stink if she tried to bring someone in, and she usually caved. I came once a month for a weekend so she could get away (not nearly enough time for her - she deserved more time)

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
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Sorry to hear about your health issues.
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.
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And what goes hand-in-hand with being a caregiver or choregiver? Always having to "be the bigger person." It's a recipe for falling apart.....mentally and physically.

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.
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OMG yes!!! I went through the stress effects until I had no body hair. My hair fell out bu the handfuls. Diabetes off the chain. No sleep. Kidneys started failing and both were swollen. Had an ulcer. Vomited for 4 years. Got to the point I couldn't keep water down. Lost down to 83 lbs. Had a stroke. I couldn't even think or remember anything after 10+ years of taking care of mu husband with Parkensons, frontal temporal dementia, vascular dementia and LBD completely by myself. Husband's 2 sons and cousins only showed up tp tell me what I was doing wrong and to torture by way of cruel remarks and gaslighting because they wanted our money and property but would not help at all and NH will not take Parkensons patient because their care is primarily custodal. It is a mess. I was dead on arrival at the hospital but was blessed by a second chance at life. Hubby"s cousin took him. Became is POA and lived nicely off his money while she kept him chemically restrained on ativan and morphine until he was too weak to breathe and too weak for his heart to beat. I am happy to say that today my diabetes is in remission. I am healthy and happy but the cousin is trying to milk me for one half of my widow's SSA. It ain't happening. I have a lawyer. She robbed us blind but I am alive and happy. I am currently taking courses and training to be a Life Coach for Caregivers. I don't believe it is any kind of a blessing to have a body that betrays you and degrades you and one's behavior is animalistic and extremely violent. My hunby was a big man while his lower body was shot out, he had control of his upper body and strength and sent me to the hospital several times from physical abuse. We didn't have the $25.00 an hour for an aide and the pickings were horrible. So there was just me. No dr. or nurse or many social worker was ever forthcoming about what was going to happen with him. I had no idea. My husband had the opportunity to take proper steps because I made the appointments with the elder law attorney and the financial advisor but he would not met with them or complete a will or take money out of the 401k to modify our home for his needs. In the end the SSA is all that his family members didn't take but he was unwilling to put his house in order. I would not ask anyone to give up 10 or 20 years of their life like I did. If a person refuses to take the proper legal steps I can tell you today from experience leave and never come back. It is not worth dying for. I can not get those 20 years back. He wasn't worth it. It is not worth dying for someone else's illness. I endeavor to help others so no one has to suffer as I did. Stress alone does kill. It is not a blessing for anyone to suffer. It is not a blessing to be forced into human slavery because somebody else got sick. Things MUST change. God Bless ALL you amazing caregivers. Peace and Grace.
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Since reading these answers I am reaching out to the family that 30% of caretakers die before their L.O's and also look to myself to change direction as far as taking care of myself, making it a priority. My Mother is a joy. She is a good sport too, she goes that extra mile to go with me to Dr.'s etc so that she and I do not miss appointments. I am with her 24 x 7 except for about 18 hours a week when mostly my son or sometimes daughter-in-law can stay with her. I have given my son more responsibility - when Mother and I come home once or twice a week so that I do not have the burden of cleaning the whole house myself, sharing keeping the house clean like roommates instead of Mother and son. we are both in the home part-time. We alert the staff at Mother's Assisted Living Facility when I leave Mom in her room alone for any amount of time. Things come up. Usually we go out , i.e., to pick up cat liter, come back take care of her needs, she gets in bed and I go to the car to bring bags upstairs. We are working on Mom strengthening her legs by using the walker for 50 or so yards a day. When she goes to home with me and my son, she walks a 1/2 flight of steps with our making sure she doesn't fall but it is on her own volition. She can do it. The nearby supermarket is starting a program where we can order on-line and pick up groceries in a drive thru. Mom could come in the car with me. She likes to go on drives. Before I go out anywhere to shop I look online. The more I can do while I am with her in her AL apartment the better. Also, for myself, keeping an athletes healthy diet and taking the stairs downward, instead of the elevator, 3 flights (have not yet started walking up the stairs but will, 1 floor at a time soon).
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.
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Christine73 my dentist made me a night Gard so I would protect my teeth. Well worth the money.
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