I'm so tired of my Mom saying, "I don't feel good." Anyone else?

I too am having the same experiences with my 86 year old mother that lives with me. Every singleday she has what she calls a tummy ache, nauseated, etc. We have gone to her primary dr. so many times that the last time he said Medicare doesn't pay for extended visits soif youhave anything more to discuss make an appt.with the front desk. I wanted to tell the dr. off as he's been her physician for over 20 years. He lacks compasion and I am the caregiver trying to deal with this as best as possible. This weekend for mom was a pimple on her scalp. All weekend it drove her nuts. Now I'll see if she remembers that this morning.

Well I think I need to take a chill pill. I am outraged by some comments not so much by others and supportive of many.

While I understand that some of you may have had the sweetest natured Mum and that Alzheimers did not change that others on here have not had sweet Mums - they have had Mums who allowed them to be abused as children and stood by and did nothing - then when situations do rear their ugly ugly heads 'oh it's too late now forget it'. FORGET IT? OK!!!! NOT

So then this same woman gets sick with Dementia and you are EXPECTED (and let's face we ARE expected) to drop everything to go and care for her?

Now I will care for my Mum but please don't expect me to like her because I don't. That undoubtedly makes it more difficult to put up with her narcissicistic ways (THAT SHE HAS ALWAYS HAD) My mother was never sweet - behind her sweet smile stood a heart of steel. I can't count the number of times she has told me that when my other brother died she wished it had been me not so often before the dementia kicked in but a hell of a lot now. Just as well I didn't eh mum because I am the ONLY one who does the care now. My daughter supports me my son doesn't.

Oh and just to add to the mix - I have now got chest pains and am I going t the docs ? H*ll no I just hope it takes me quickly! And before you all slag me off - I actually don't give a d*mn that you don't like my attitude - walk a mile in my shoes first.

If you are actually having chest pains now please call for help now, don't wait for a md appointment, please!

To JUDE and OTHERS: NO, we do not need to take a chill pill. Perhaps others have been blessed with perfect parents and perhaps others have been blessed with the financial means or the patience of a saint...allowing them to stand and cast judgment over those of us who do have valid reasons to be worn out, tired, bitter, exhausted, sick ourselves, impatient, etc. Others have ALZ parents or spouses who are perfectly behaved and are little trouble to care for. Some of us, MOST of us, DO NOT. My sister and I were sexually abused from an early age with a mother who looked the other way coz it meant that my dad wouldn't leave the house for his sexual thrills so she had him home. My sister overdosed at age 13 because she couldn't deal with it. She lived and was punished in a cruel sexual way to 'teach her a lesson'. We grew up making drinks at age 5 and getting hit with a rope if we didn't make that drink right, lighting their cigarettes and being where you were told to be. I grew up being tossed in the car by my mom at a very young age, driving to wherever he ended up after a night's partying, watching from the car as he kissed whoever he met at the bar the night before, on some strange woman's porch, kissing her goodbye in front of his wife (waiting patiently for him behind the steering wheel) and his own children. He did not CARE. It was his way only. I had to give away my junior high school jacket to some woman's child because he was dating her and her son wanted it. You learn that he comes first always, no school clothes because he needs clothes to go out in. There were no overnight sleepovers because you were afraid your own father would molest your friends. You grew up watching and hearing your parents have sex anywhere at anytime and learned to just not listen or walk into that room, or how to discreetly and quickly leave the living room as he was taking off your mom's clothes on the couch under a blanket. You and your sister are woken up at 3 am after he's home from a good drunk because he wanted to sit on the couch and watch you and your sister dirty dog dance. Sometimes he would bring his friends to watch. You learned to never tell, never ever tell. We have parent patients who are demanding 24/7. We have narcissistic parents who refuse to take others into consideration, BEFORE the disease hit them, and the disease has only amplified their personality. And we may well indeed be the only person left to care for them. Some may have that parent who is content to sit and watch TV or do a puzzle or help fold laundry or content to sit by a window and watch the birds around the feeder. Others, like us, are laying on the couch for 15 minutes, praying our heart medicine kicks in fast while the ALZ parent patient is bumping us over and over with the wheelchair wheels screaming "Get UP! I want to go to the store!" even tho the cupboards and fridge are full. Some care givers have a patient who is happy to be pushed thru the house looking at pictures on the wall, happy as happy can be Some of US, the horrible beings that we are, have to dodge his hands because if we lean over to adjust his feet to the wheelchair foot rests, the hands come up between our legs. Your husband may be allowed over sometimes, then your dad may suggest you two take a nap in his bedroom, with your own dad saying "then I can sit on the other side of the door and listen to your panting" as he makes disgusting sex noises. GAG. These judgmental caregivers who cast doubt on our skills and our humanity may have a parent who is happy to help set the table and wait patiently for their meal. Some of US, The Bad Caregivers....we cringe as we don't refill the coffee cup is filled quickly enuf and the cup is slammed to the table top, cup and coffee spilling everywhere and then told 'your fault, now clean it up, be faster next time, it is your fault that I got mad and slammed my cup'. Parent spitting at the table onto the floor, then you are screamed at to get your butt down there now and clean it up, it is your JOB to do it. Being told at 10 pm that you WILL do the laundry because 3 towels and 1 change of clothes are in the hamper. Some of US will never have 5 seconds of peace until the patient is asleep, we are kept busy and moving otherwise. Some of US will not be allowed to take a phone call, watch TV, read a book, because that narcissistic parent feels attention is being taken away from THEM. If the phone rings, answer it, then hang up. Our spouse may not be allowed in the house because the parent is jealous of our conversations or that they are not getting their attention fully. Others may have occasional bad days with their patient, some of us live it 24/7 for many years (I did it for 21 years). Some of us having multiple health problems because we have neglected our own health. I have IBS, heart problems (4 surgeries to date), asthma, arthritis, pain from broken bones (in hands and feet) not healing properly, high cholesterol, high blood pressure, dropped bladder, migraines, gastro reflux, and more....yet His Majesty took 2 pills a day and never suffered a moment's ill health, because all of my time (and my husband's time) was spent taking care of him. Because he came first, always. Like Jude, I understand the sibling privilege; my dad lost 2 sons, leaving 2 daughters alive. His comment on the 2d son dying?....why did it have to be my sons and not my daughters? A son would carry on my name. Yes, and I am the stupid girl who lived and scrubbed his toilet and bought his food and took him everywhere.
As an adult, the only surviving child, you also know you are the only one who can take care of him now that he needs 24/7 care. You don't have to like it, but you will do your very best to provide that care, be respectful, keep your mouth shut, do your JOB. You will excel at being the best caregiver you can be. You will be so good that others will be envious and often ask 'how to you do it all and keep up the homes and still do everything else'. LOL, sometimes I think that most of US (the titled BAD caregivers, lol) do a wonderful job of taking care of our patients...maybe cause we have a point to prove, that we CAN and DO rise above being just an abused child, ignored child, belittled child and adult....we do GREAT at our job. For whatever reason, our patients are kept clean, tidy, entertained, excellent medical care, everything. We get it done! Being lied to your entire life, having things left to you from your dead mother taken by him (deceit). And having to live a life of lies as an adult. Yes, others may want to point fingers and criticize and blame us for our attitudes, but until you have walked a mile in those shoes....So JUDE and OTHERS...this is a public forum and we are allowed to vent, explain, state how we feel...others may not like how we feel, being honest in our emotions, and we may not like how they feel or we may not understand how they feel, but we're okay with that, it's all good. :)

I am so glad I found this site a few years ago. As I know I am not on this journey alone. Love my parents but it is very hard. My dad past this year. My mother who is in ALF since last July always has the "all over feeling". The year before she went into ALF between my brother and I from August to February took her at least 12 times to her doctor. She gets mad when they don't find anything wrong with her. I always felt bad for her doctor. She was on Lorzapam for over 30 years and had no problem taking that but won't take an ibprofin for a headache. She went off of the Lorzapam cold turkey and none of us knew which was an interesting time. Reading every ones post it does make sense they are lonely and can only thing of themselves sometimes. She doesn't feel good when it suits her but if there is something going on she wants to go to she is fine. Went with my cousin for a full day and had no complaints but she was being catered to. This road is extremely hard and I thank all of you for posting so I feel like I am not alone.

The Parkinson's alone will cause depression and tiredness. Try to give easy to eat small meals. Play soothing music, & let this person rest! I agree with all the above. Lots of TLC is in order! My husband is suffering from long term heart disease. He's always telling me he's exhausted. He worked so hard for so many years! I often tell him that he's earned the right to rest and relax!

My husband loves polka's and that almost always makes him smile and get in a better mood. He wears head phones so I don't have to listen. I like polka's too but not always, like him! Redirect her with flowers, music and any thing else she might like. SO hard to deal with negativity every day. We also have a sweet dog, that he never wanted, but now loves and pets her.
She's my lifesaver. She takes me for daily walks and I teach her tricks.
Remember that old song, "Sunny side of the street"? Sing it or get her to sing it!
Good Luck!

My Mom does the same thing. She complains about something and once that is fixed, she finds something else to compain about. Once we get an answer to her complaint from one doc or another she finds something else and only occassionally going back to an earlier complaint to which I say, the doc said that was due to this... and then she is satisfied. It is so frustrating because like Rosanna Rosanna Danna would say " It is always somethin!"

kalaFW, why do you feel obligated to care for this person? I certainly couldn't/wouldn't do it. Surely there are other options. Check out other places or just plain leave. Leave them to what they have brought upon themselves. Care for yourself. You will be a better person for making the effort to leave. You deserve happiness and not more hate from someone that has only dropped his seed to make a child and not provide love and a safe home. God Bless You.
Make a plan to leave and follow through. Best of luck.

OMG!! KaylaFW...why are you taking care of your parents?? Your story is a horror of the utmost degree!! I would dump them off in a care center and NEVER

s/b NEVER SEE THEM AGAIN! Why are you still there????

@Lovinggramma -- I could not agree with you more. I also have a friend with chronic, undiagnosed pain and it's misery for her.

That said, I still stand by my decision never to tell my son about my health woes. It's become a cultural issue / a way we live in society today. To let one's children or younger family members know of one's health needs is to immediately, any more, transfer responsibility for your well-being into their care, it seems, and to incite in them anger or discontent at having to be imposed upon.

I prefer to experience my health needs without the added burden of having to deal with the angst created by family.

I have given this considerable thought. And my read of these boards has further persuaded me to stay stiff in the upper lip and to not speak a word about my needs or problems. All you have to do is look here to see the results -- and that's enough for me.

So yes, I understand your worries and your very real pain. But we all have the ability to pull our shoulders back and just buck up. Our generation knows how to do that.

The price that one pays for sharing is far too high for me. And I say that as a woman who lives alone -- very, very alone -- in rural America, on top of it.

lovinggramma, You do have a point but I do have chronic pain in several places. and one of the most annoying things is that yes my Ma has and most of it HAD.. for years back when she was in her late 60s Id suggest she go dairy and gluten free.. Oh yes, she went a meal with no bread, and no the pain didn't go away. She was an apostle of the blasted Readers Digest home manual on health........... IF it wasn't in there then she might not have it but she had everything else from A -Z. I tried again in her 80s but by then the dictator of my father had totally focussed on ruling her life. He didn't need to go on any funny diet so neither was she. So the moment he died, I did, I declared in a big voice she was going both dairy and gluten and the change was amazing, yes she has some arthritis as a 90+ yr old but not that bad and she is getting better by the month [HE has been dead for over 2 yrs now]
What I do think is happening as the dementia comes, so they are back to being the 20 yr olds and noting that they cant do things, so that is pain, they cannot define the pain, its not sharp its not dull its not colicky, its pain. so more of a barrier than PAIN
And yes forgotten as soon as a bit of gossip comes on the TV.[ talk about needing the net curtain to hide behind to watch the neighbour, now its a screen of many colours[.
There is of course no easy answer and every Muvver or Pappy has their own set of old age/dementia stresses and problems.
What will happen to us ?? Yes I fear that but my hope and instructions are if Im not going to be over something in 2wks then I am to be refused treatment and allowed to snuff it.
Meanwhile my oil pressure is OK, and my gluten free diet is fine, and I fight for independence every day and attend a load of demanding cats n dogs and other furries instead.

@JudeAH53 and others: What I do not understand is why those of you who are having such a terrible time don't walk away? Just stop. There is no law forcing you to provide care. And expectations are invisible. They don't really exist except in your mind.

If you were dead, what would she/he do? Allow that to happen. Yes. Simple... allow it to happen. It's really no good when two human beings come together in a place where the end result for both is discomfort, dislike, internalized anger, and more.

If you want her or him to be brave and without complaint, you will find it impossible to change them. But you can be brave and without complaint, right? Instead of expecting in others -- expect it of yourself. Imagine that you have died...and that now that parent will need to be cared for. That's the care that your biological ancestor (parent seems a little too much here) needs to be given.

Walk away. For yourself. For their sake.

And if you cannot, how can you possibly expect the other person to change when you cannot do it yourself?

Leave...

KaylaFW and Jude - I don't understand why either one of you are still there. Please, both of you, leave. Neither one of you owes anything to your parents. Get out while you still can.

I think Kayla, at least, answered that question herself - she said she has a point to prove

Point to prove???? Hope Kayla responds...and God Bless that woman!!

Starshine, lifeexperiences, others: I finally got POA and health care POA and took him to the doctor and had an FL2 form filled out to have him admitted for nursing home care about 20 months ago (other than a brief stay at home between nursing homes) and I've never looked back. I now only visit when I need to be there like if Hospice or the care center calls and wants me to be available for questions or to talk about his care plan. I don't visit on Father's Day or because it is Christmas. His room is not cheerily decorated with family pictures or keepsakes. He is in a double-room and his side looks like it did the day he moved in, like no one cares (hmmmmm). The only reason I took care of him for so long was to protect my children and my sister's (she passed away) children from having to care for him, to distance them from him, to keep them safe. I didn't want any of them busting their butts to care for him. He is a psychopath, narcissist, sexual deviant, and adept at lying, the doctors caught that immediately. I did my JOB, I did what was expected of me. I was beat down and was still in the mind set that I did what he wanted. Never mind that I was married, had a secure job, financially stable...he always had a grip on my mind that could not be broken, regardless of how long I stayed in counseling with psychiatrists and psychologists. That grip is now broken...shattered...and his power over me is now gone completely. BTW he still tells me that he won't die until after I do because he has outlived his wife of 50 years, his girlfriend of 14 years, all of his other children except me. I now just smile and walk away. I am no longer his little door mat. Trust me, what I wrote was just the tip of the iceberg, I could write a book. But for some reason, once I started writing my previous post, I couldn't get my fingers to stop, I couldn't get my mind to stop, I just started pouring it all out and I do apologize to those who I may have offended. I know this group isn't my personal counseling session (smiles here), but I felt this need to just unburden to show why some of us just can't keep doing it and why some of us shouldn't be treated with scorn or derision because we are tired or frustrated from care giving. I envy those who do and who can and who have better parents. When we are told 'shame on you, this is your mom or dad, I would do it all over again', I envy that person for the love they had while growing up and their devotion to the parent. But I don't "owe" any parent anything, not anymore. I would never expect my own children to stop their lives to take care of me, ever. It is not their job. I didn't have a child to assure my well being should I ever become incapacitated. And I now I have my life back and I refuse to feel guilty. Thanks for all the support, and thank you for understanding.

@sunshiney and others
I am predicating this with I don't expect you to understand this and I dont mean that rudely I just need you to accept that this is how I feel......

I made a promise to my Dad on his death bed that I would look after Mum and not put her in a home. Now while I don't much care for Mum that promise is the last promise of honour that I made to my Dad.

Oh I know .... and you can all scream from the rooftops that I have done that and then some but - for me to walk away and leave her, having promised my father I wouldn't, is something I cannot live with. That promise is sacrosanct.

If you actually gave me the choice (not that anyone would) of walking away and leaving her - ie breaking my promise or dying I would choose the latter every time.

That's how much Dad meant to me and that's the value I put on keeping that promise. So I guess I had best not come on here and b*tch and moan but you see I know that Kala and I arent the only ones on here who are going through this for whatever reason and some have had it much worse than I.

If they KNOW that there other survivors of abuse out there doing the same thing they are and putting relatives into care as Kala has, or not as I have, then they perhaps will come to understand that while for most it is about freedom of choice for some it isn't quite so simple and that we as a cohesive group can try to help them reach the decisions that are right for them.

Sadly while my brain says one thing my heart says something far far stronger. but your comments will show people they DO have decisions to make - I am not so sure that they are always decisions based on free choice

KaylaFW love built by the years and not granted. Your parents did not provide love and care when you were child. They were evils. I take care of my mother because I love her very much. mom gained my love through the years . if my parents did not take care of me when I was a child and abused and tutored me , there will be no love. I will hate them. if I were you I will leave them and will not risk my health and happiness for them. they do not deserve any love or care from you. KaylaFW allow me to cap the words for you I am not shouting at you. I want you to have life without these evils. KaylaFW ( iam not shouting at you I am emphasize) LEAVE and TAKE CARE OF YOURSELF NOW PLEASE NOW.

Jude, I understand. Even if there are not promises, there is also this invisible force that keeps us on course. Sometimes I wonder what is going to be left of me at the end of this, but when someone says that I can leave, I know it is not the right thing for me right now. Only when my mother gets too bad to live in her home will it be the right thing. Most of us sense what is the right path for us and if we head off down the wrong path, there will be discontent and regrets.

And heck, what else do I have to do? Go sit at the lake and chase after silly old men. :-D That might be fun for a day or two.

I know I'm doing what I need to be doing. Maybe the reason why will be clear in the future.

The best of the private medical community is beginning to catch up with the best of the non-private. I would look up EVERYTHING on the systemic spread of mycoplasma fermentans (incognitus strain). The tests to find this and the co-infections are cutting edge PCR DNA tests, and mainstream physicians will be very resistant to run any these tests or do the proper protocol. Medical doctors are not taught about mycoplasmas in American medical schools. If money is an issue, try to get her primary physician to order the tests, then find an infectious disease specialist to implement the Rx portion of the protocol (that can't be denied based on the tests). This organism is triggered by age plus co-infection.
Best of luck, she should be better within a year!

Jude--I admire you for honoring your father's request. That is one I will NEVER make of my children, because of exactly what you are going through. I DO NOT feel that my kids owe me anything but respect (and love, if they feel like it).
The woman I worked for--her husband had extracted the same promise from their children: never let Mother go to a nursing home. Wellllll.......she had Parkinson's and despite the best in-home care that could be bought, and the fact that one of her daughters BOUGHT the enormous house she lived in and tried to care for her mother---2 years after daughter moved in, my sweet client was so much work, it was destroying this little family. I worked up to 32 hours a week for her, but not allowed to do more because of my status as a PT worker--so I did what I could but ..long story short, When Mother became incontinent, and was having bowel problems and refused to wear depends...refusing to shower (that was a huge hassle, I know) was gagging on food and throwing up at the dinner table, scaring the smaller kids to death...the family decided that they had honored dad's request as best they could. They did find the poshest, most expensive facility very near them and booked the BEST room available (a gorgeous private apartment, really) and then slowly began the transition. I helped her pick out furniture (which was all returned as she ended up taking furniture from her old home--) but we were busy shopping and planning for her "new life". We actually went to lunch at her "new home" several times before she moved in. (I have to say here that an unlimited amount of money could and was available to her, which I know is NOT possible in most cases).....she lived in this facility until she passed, just shy of the 4 year mark. The kids did beat themselves up over the fact that they felt they had NOT honored their father.....but they DID. Dad could not have foreseen the amount of energy and stress it would cause his family. I think you are doing an amazing thing. I couldn't do it--and I think most people couldn't. Sounds like you really honored and loved your FATHER. What a blessing to your mother that you do/did. Just take care of yourself as well as you take care of Mom. And should some day, you have no choice but to move Mom to a NH, do NOT beat yourself up over it. I don't think anybody would think you didn't honor your dad.

Arrgh--this went to the wrong place--it's supposed to be a response to Jude...hope she finds it!

Wow, KalaFW, I did not know the backstory. I'm glad you wrote what you did. It should be a book. I've contemplated a lot over the past few years the awful sense of abandonment one feels when a loving parent turns into something else entirely as mine did. But for you ... having endured so much ... I can understand why you would have walked away after getting your dad the best care possible given the circumstances. Even that was probably more than he deserved from you.

My mom has had 5 cat scans and they never could find out what is wrong. She has dementia and rubs the front of her head constantly. I feel sorry for her, she said she would be fine if it would go away.

Mids I did pick it up hun and it was worth sharing so I amglad you did hun. Someone mention Normal Pressure Hydroencephalus the other day - the doctor came out again today - and said even if it was she would be way back on the list at 92 - fair comment although a little bit of me says otherwise. But ony a little bit.

He is more concerned that it is temporal arthritis which I have never heard of whichi is not surprising because it is temporal arteritis (stupid woman that I am)
Symptoms:

disturbances in vision (blurred vision, double vision, reduced vision) check
throbbing headache (usually in the temples) check
fatigue and weakness check
general ill feeling check
loss of appetite check
muscle aches check
transient jaw pain (this sometimes, but does not always, occur with chewing)
fever check
facial pain check
hearing loss check
drooping eyelid check
joint pain and stiffness check
shoulder and hip pain and stiffness check
depression check
tenderness in the scalp and temple areas check

Plus about 6 others she doesnt have so we are off for a biopsy tomorrow oh deep joy and I have the purchasers coming to look at the house and I am supposed to be on training and the nurse is supposed to be visiting - quiet day for me then. Oh I have now decided on the epitaph I will need for my mum CM will understand when I say it is a Spike Milligan one - he was a very clever comic - he wanted on it - I told you I was ill!

Hugs and squishes to you all xxxx

Jude--
Glad you have gotten some answers...or at least maybe the beginnings!! That Spike Milligan quip was one my grandmother use to quote us...that woman was a pip! I am glad my response found its way over here.
I also have never heard of the "disease" you're describing and I have 2 kids who are drs...in helping them study for various tests, I did learn a LOT, but frankly, geriatrics was the LEAST favorite round for both of them.

Good Luck tomorrow!! Sounds like a great day will be had by all!

Kala--
I read your entire post--you poor kid! And you did the right thing to put that excuse for a father in a home. As an abuse survivor myself, some of the things you said just hit too close to home....I hope you get to take care of yourself and try to deal with YOU now. Amazing to me, how many people come out later in life with accusations of abuse--in my case, I never told, and then found out my abuser (older brother, now dead and completely unmissed by all) had molested scores of other kids. I am sick sometimes at the thought, however impossible it sounds, that by not speaking out 50 years ago I might have made a difference. Probably not, as even when I did tell my mother, she said I was lying..then more and more people began to come forward....so sad. It's bad enough being the abused---try being the mother of such a character!
Good luck to you as you begin, I hope. a chapter of healing. What you went through is NOT normal and NOT OK. But you can be OK.
Bless you!!

To KalaFW
With all sincerity and sympathy, you need to seek help the ravages of your trauma. You are no longer a little girl victim of a more powerful parent. That you choose to subjugate yourself to perpetual victimization is something that you are doing to yourself as a way of recreating your past helplessness. At this time, it is your responsibility to take care of yourself appropriately. I am fully aware of the conflict that must exist in you but YOU are the one who needs to change. Were you to abandon your parents, state social services would be required to assume responsibility. If you insist on fulfilling "Expectations," you need to realize that they are yur expectations and no one else's. Seek help, and end this terrible cycle.