Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
I have been ill for almost half of my life, geez I don't even know how to start. The last year has been a blur. It started off with a chronic sore throat, followed by a kidney stone, then pneumonia, acid reflux, barrett's disease, a double positve DNA for gluten, blood test IgE allergic to corn and wheat, post menopausal bleeding, I am not producing stomach acid, my liver is not filtering properly, calcium is off putting me at risk of breast cancer too. So to sum it up I am allergic to beef, pork, wheat, corn, oats, barley, and rye. Add to that 22 years of fibro pain and a stomach that has a mind of it's own. It sucks, but I have a great DR. who practices functional medicine. I have been off of all the pain meds for almost 4 years as well as any anti-depressants. I am just coming off my last script which is for anxiety.
The really cool part is I am healing. It seems slow but here is what research shows: the fibromyalgia is a result of chronic imflamation due to 54 years of poisoning myself with wheat-gluten---it (the damage) is reversable. I also tested positive for 2 potential pathogens and will know a couple weeks if 3 months of natural antibiotics killed the little buggers.
What follows is one of many reason's I belong on this site: In one of her more sane moments mom told me we were both diagnosed allergic to all those grains when I was 8!! I remember the Dr. telling me, but in my 8 year old mind I thought "allergic to wheat...better stay away from the fields during haying season" I could only relate allergy with sneezing. But mom knew and understood. She CHOSE not to follow the Dr.'s orders. And so here I am.
Just as a side note: In my research I watched a video my doctor loaned me Unlocking the Mystery of Wheat & Gluten Sensitivity by Thomas O'Bryan DC, CCN, DABCN this is what I found...1 out of 5 brain disorders including Alz. is directly due to gluten sensitivity.
So both my parents had G/S and I have a double whammy. The father I never knew died from MS (auto-immune disorder like fibro) and mom with dementia. If you think this might apply to you; contact enterolab online and for $180.00 the red cross will send you a simple mouth swab kit and decipher the results. Insc.
will not pay for this.
Add to this that 3 of my 5 kitties died last year (relax) they were 18, 17, & 18 years old and all are disabled. This week we almost lost Baby, she has been at the vet's all week but is back home with a feeding tube and her future looks brighter than it did last week. Life...it happens if we are ready for it or not...it is how we deal with life that makes all the difference.
That being said, I am open to hear any advice or your story or even a joke.
I usually go by myself to mom's, since it usually ends up being me staying the night. But my husband goes w/me. Yes, if you read some of what I wrote to 195Austin and a visit just days ago, I'm definitely going to try to schedule the visits when both my sister and niece are not there. The main goal for me is to see mom, doesn't mean I have to see the rest of those people, and their fake egos, nor bad attitudes. Thank you so much for the suggestions, hugs, Margeaux
Thank you, for your suggestion, especially about maybe not going into that household. Yes, really I've done this at different times throughout especially what I call, "the reign of terror," while my aunt was still alive. Boy, somehow I was with some kind of wishful thinking fed by my sister's constant need for moral support, which I totally was and continue to be whenever my aunt was giving her and the caregivers a real hard time. I naively thought that now my aunt's passing was going to flow into a happy family, cooperating while still caring for mom and the ALZ. But, I forgot about or probably my denial about the dynamics w/sister-POA, and her daughter, who only seems to be a taker. My sister enlisted me about a week ago to go w/mom to doc's appointment on March 1st, to check her pacemaker. I said, O.K. My sister works 40 hr. job. So recently, she's drawn to my attn, that especially the main caregiver she's had for the last three years, she feels sometimes oversteps boundaries in terms of talking to the doctor's, making appointments, etc. I think this caregiver is great also, she is very affectionate w/mom, and put up w/loads, while auntie was still alive. But my sister seems to view this caregiver as wanting to make extra unnecessary appointments as my sister feels that this caregiver likes to get out of the house w/mom, because then they go out to eat later, and it's an easy day for the caregiver. I don't know about this. I however feel that at some point my sister allowed this caregiver to become too in charge of this aspect of the caregiving, because while my aunt was alive, my sister pretty much was not talking w/my aunt. Although, my aunt's behavior warranted some of this, sometimes I would for example try to suggest to my sister after she'd told me some horrendous story about auntie's rages, "has she ever been checked for Dementia, or ALZ?" My sis's response would be, "Who knows, she's always been a difficult person." So you see, any of my suggestions about complaints my sister makes to me, are many times dissed. I did go visit just the other day, w/my husband. He's great! That day also, I brought to sis's attn., that someone (her daughter, the taker) again left some article of clothing and a hair ornament on the stairs going up to second floor. She's doAne this before, and for safety's sake, I've suggested that this isn't a good idea. Someone could trip, and at bottom of stairs is a marble floor. My sis's response to this was,
"Oh, I always leave things there, that way it saves me having to keep going up and down the stairs, so many times." Now, I again here feel that my sister is trying to always draw attention to the fact, kind of like she's a martyr. But anyway, 195Austin, thank you for your suggestion, and honestly, I'll keep that doc visit, but I think I'm going to start becoming unavailable to my sister. I'm tired of this not being appreciated, somehow being still recruited at some level. Maybe I'll even suggest to her next time, "maybe you should call our brothers." Yes I do work, but it's been a bit slow at the moment. I like Yoga, and actually I'm driven to writing. Thanks for the hug, and hugs to you also, Margeaux
Oh I so identified with the things going on in your family. I certainly related especially to your take about what you said re: not owing to parents the caregiving out of guilt. It's quite interesting, in my family this issue. I am from a family of four siblings. I'm the eldest. We are pretty much like a step ladder in terms of age, one year apart and the last one, 2 years. This made it very tough on me, being the eldest. My parents worked full-time since we were very young.
Grandma was in the picture at first, but very soon....I became mommy. This is why I never had my own kids. I loved my parents, for what they provided, but somehow the nurturing, emotional part lacked greatly! So now as an adult in a caregiving situation, that I do at a distance, since my sister (considered the capable one) in our family-oh those roles, yes...they never die! is POA, in charge. She lives w/mom who has ALZ. Mom's sis was also living there w/congestive heart failure, and just passed away 3 wks. ago. But I've done my share of caregiver back up, relief, and visits. Our aunt who just passed, may she rest in peace, but really gave everyone a hard time throughout her entire life. Mom never stood up to her, and enabled abuse by my aunt. So in essence I've gone back & forth between feeling sometimes guilty, maybe that I don't do enough. But of course, while auntie was living there w/mom, it was so hard to go into the zone of battle, because this is what it was. Then my sister, who is great at running the show, but truth be told she, & my brothers, who never get their hands dirty in any caregiving work, totally hide the ball from me in terms of whats going on especially w/inheritance issues. By saying this, I don't mean to imply that this is a big motivator in my life as to my participation w/mom's health. But w/ the power holders, especially my sister (total control freak), it makes it very difficult for me on a spiritual level. Well, and I've heard way more often than not, that somehow the brothers in the family seem to not get too involved when there are sisters in the family. Do you have contact with the one brother that might be able to help? Anyway, I use some meditation to help me, lot's of deep breathing.
This seems to help me. But anyway, I just want to offer some moral support and share. You're not alone, my dear, Hugs! Margeaux
Margeaux
And I am in a situation of working with people who are not my parents, and it makes me feel so bad for thier children.... wondering how they became so successful and level headed after the things they have endured for a lifetime.....
And then there is my Sonny Man, one of 9 children, very poor as a child and young man, I have seen pics of his parents, and mom looks very stern... of course he only remembers things like when being called to dinner, you had better get in there while there was food on the table......and he is a sweetheart... always smiling, always saying thank you, laughing, making jokes, and tell him often how much I appreciate him.... will not say anything about his wife, as I am trying to not let her trigger me in regard to my dad.... and she is just like him...
So I know being with a parent is harder because of the memories, and the irony is, my dad passed away years ago, yet those feelings are still there... she can trigger me into a downward spiral sometimes.... especially the feelings of being made to feel small and stupid.....the constant work on reminding myself that these are just feelings, that I have lived thru it all as a child, that I am more loving and compassionate because of being treated that way.....
So just letting you know I value each and every one of you, learn from your stories and how you cope....am encourged and uplifted... thank you all for sharing such painful things about your lives.... you are helping many... thanks, hugs and angels....
Tilda, you wrote earlier and I am glad you shared.Please so stay and share more. Is isn't all over when it is over.
burned, I am glad u r better and your friend is moving near
thinking of jessie, Izabella, naheaton, cmag and other who have posted and wondering how you are. I was mia for a little while and got behind. I will catch up on my wall posts
My faith is very strong too.
Thank you all for your kind comments. Losing my son has been life changing experience - some things have become more important, and some much less so. The pain of loss lessens over time, though will never go away completely. The "missing" stays.
The only way you will know if there are enough participants is to try - nothing ventured, nothing gained. A few others have mentioned signs before and after a loved one passes. The whole experience of the two days when my son was in hospital was extraordinary in some ways, and I am so thankful we had that time with him, Even though he was in a coma, we had signs from him then.
hugs to all
jo
Banshee, Thank your husband for believing! As I just said to emjo, if I would've been alone, I would've thought I was going crazy! However, when 2 people witness it, well, you just gotta' believe! I'm a product of parochial (SP?) school, so my Faith is very strong! I was thinking the VERY SAME THING...about starting a thread about the "Signs"! Do you think there would be enough participants? :-)
EMJO- I did not know that you had suffered the death of your child. If I could bring him back to you I would. I am so glad he came to you in your dream...and the bird...you KNOW it when they "visit". You are amazing!
Hey, maybe next week we could start a new thread about all the signs we get to help us find our way?
but after this happened aunt had this "she was holding everyone hostage to her will," attitude. Her behavior w/my sister, myself, caregivers was so divisive, and has created disention w/in our family. You name it, from hiding what's going on with money, to bad mouthing my sister to caregivers, sabotaging caregivers.
Remember the movie "Baby Jane" with Bette Davis? Our aunt made her look like an amateur. Anyway, in peace may she rest. But after she died of course there's been all of the readjustments that come after the loss of someone. Mom is well taken care of. My sister is still living there, but now only w/her 22 yr. old daughter, who is not very helpful, and acts like a primadona. Just before our aunt died, this niece went into a tirade w/my sister. It was all about her, and she was trying to imply my sister doesn't pay enough attention to her. Now this girl just really lives there. My sister pays her car payment, and she's enrolled in college,
but recently there's been some doubt about whether she is actually attending school, in a serious way. Well during this discussion she and my sister got into, got really heated and niece became verbally abusive. My sister who at that moment had her hands full, called and told me all about this. This was back in December. Well, this incident created some real havoc for my sister, and of course I was very angry w/niece, that she'd behave like this, especially under the circumstances. My sister divorced niece's dad years ago. But then, my sister did tell her daughter she was going to have to go live w/her dad, which my niece of course didn't like. My sister says, she probably didn't want to do this since the dad doesn't provide any kind of a nurturing environment for her. Anyway, I'm just wondering. I honestly had to always psyche myself up to go visit that household while my aunt was still living there. I somehow thought that once she died some of the tension was going to disappear! But now I'm having to deal with both my sister's controlling aspect of situations, and this niece. Again, it makes visits to mothers not feel very warm and fuzzy. Oh, and just so that people can get a picture here, my sister, nor her daughter are the types that don't like to be told anything. So, sometimes I'm at a loss as to how I'm suppose to feel about all of this. I spent a night there last week when one caregiver had the flu. But by the time I left, I just felt totally drained by the energy in that household. Any way, any advice is appreciated.
Changing the subject, I went to see my sleep apnea doctor and she said my machine needed to be reset in light of what I told her I'm experiencing with my current machine. Instead of getting another sleep study, she gave me the option of borrowing a CPAP that automatically senses what you need to keep breathing while you are sleeping. I'm using this for two weeks and then we should know what my machine needs to be set to.
Jo
I have been MIA for a few days, but have been reading and thinking of you all.
This is a heavy load we carry, but lighter for being shared.
Live hugs and prayers ♥♥♥
Joan
The next Dr. she was seen by was the psych. Not that she didn't try, she had become suspicious of her primary care, so she went to a Dr. she had seen for several years before. Are you ready??? He specialized in geriatric care, and Mom was escorted out of his office by security...she had an appt. but was told he was not her Dr. anymore. I called her primary but it had little effect as I was not on any HIPPA forms...so she went without vital care for 3 months. Yes, both of her Doctor's work out of the same hospital the MRI was done at. All parties knew she had a brain-stem stroke in 1988. Anyway at this point all I wanted were copies of those test results! They were to play a vital role in her treatment and diagnosis. I told her psych about them, the hospitals are 3 miles apart but they could not seem to be able to transfer data rapidly. So, in my 5 hours of visit time I had to get her to sign 2 HIPPA forms (wrong form 1st time) so I could get her medical records so we would all finally know what was wrong with her. Seriously...I have a LOT OF RAGE towards our medical system. Fast forward through the packing, cancel of services, etc... The moving truck arrives and I had 5 mins of hugs and the phone rang, it was Mom, her DR. released her!!! I had spoken with him the day before, had told him we would be ready by Friday and could he arrange a medical transport as I was afraid to travel with her not only because of her mental state, but her blood pressure was through the roof and I was afraid of more strokes. Instead of communicating with me he dismissed her! There she was sitting in a chair, her clothes in a plastic bag, waiting for me. I grabbed a taxi (I was unable to drive for several years) and the MRI report and left the guys to load the truck. I actually had to explain to the Dr.'s assistant that A)Mom has more going on than crazy B)Would they like to call an ambulance to transport her to another hospital C)Here is the number of the patient's advocate that is helping me Are you willing to keep her for 48 hours until I can get the apt. clean and do a walk thru? Can you believe it? Who moves that fast? They re-admitted her, (we did not have a bed or any furniture in the apt., it was all on the truck to AR!!) and we were to pick her up Friday. We arrived, and waited almost 2 hours, her BP spiked so they gave me a handful of scripts to be filled and I waited while my husband went to her pharmacy $500.00 later...(and they couldn't use the medicine in AR). I went to the ladies room after telling the receptionist, as I exit I see Mom's walker OUTSIDE! Thank God my husband pulled up just as I was running to the door! We had to convince her to go with us which is where I will tye all of this together. Remember when I said EVERYTHING in my life changed? Well my first night in TX I kept waking up...this continued...finally I just set out my glasses, pen and paper and each night; I went to bed not knowing how or what to do about the next day. EVERY night, GOD gave me the answers. All I had to do was write, sometimes I would wake up to a list of cycles maybe 20 or 30 long. I listened and I heard! I faced so many fears that week and I felt protected and loved.This was the beginning of a whole new life, one free of wondering if GOD really exists, if HE does why am I in so much pain? Those and a lot of other questions are being answered one by one. I found this site by accident (or was it?) while researching Mom's nursing home stats. You have all helped me already, I hope I can help too! I am almost to the end of the TX adventure but there were a couple more nasty surprises to come in the next 48 hours.
My wish is for all of you to really feel loved this weekend!!! We may have crappy families, but that does not mean we can't love and laugh with each other. Thank you for letting me be a part of this stellar group(: