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Old 12-14-2013, 12:20 PM   #61
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I am the primary health advocate for my Pops.

We spent several years playing tug-o-war with one another about his health. Him refusing to get treatment and me getting angry, sad, resentful, hurt, anguished, and every manner of feeling in between. He agreed to get treatment back in August and we have spent the last few months going through various VA programs, getting him registered, getting his diagnosis, and rebuilding the tiny part of our relationship that suffered for the last few years.

This might be unfair but my stress level dropped 100 points when he walked in to the VA for the first time. Just knowing that he was willing to try. Willing to hope. Willing to take value of his life. Willing to WANT to be around for me, my Sister, his grandchildren.

It's still hard. Re-arranging my schedule at work has been blessedly easy due to having an amazingly good unit administrator but the VA is 35 miles each direction and it's a lot of driving.

He has 6 appointments scheduled so far for January and more will be coming.

The bright spot with all of that driving is that we get 2 hours of time with one another to chit-chat and shoot the shit, catch up on family business, and basically just love on one another.

I am getting to be the parent right now. Instead of it being really stressful anymore, I have found it joyous and such a deep blessing that I probably will label this past year with my Pops as some of the sweetest time we have ever spent with one another. I know it won't always be this easy and that it will be harder as we go on but right now, I'm just grateful for the tiny little miracles.

Peace and blessings to everyone in this thread going through the hard stuff with parents. Hug them hard and remember to be kind to yourself as well. <3
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Old 12-14-2013, 01:36 PM   #62
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Medusa, great post by the way. I'm so glad your dad has you to help take care of him and that he is making the true effort to take better care of his health. I hope it all gets better for his health from today on. Good to see you posting here. Keep coming back.
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Old 12-14-2013, 09:25 PM   #63
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Originally Posted by JustLovelyJenn View Post
I have never really thought about the fact that I act as a caregiver until recently, when a specialist we were seeing suggested I might look into getting a caregiver to help give me a break.... I have a 9 year old son with high functioning Autism Spectrum Disorder, ADHD, and an impulse control disorder.

Its a lot of work, and a whole lot of stress... I am just going to follow along for now.
i was hoping some that are taking care of young folks would chime in. Sometimes i don't think those who do give themselves credit. It's stressful caring for a healthy child, it must be completely overwhelming (however rewarding) taking care of a high needs child.

you get to feel tired and stressed out when it happens!
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Old 12-14-2013, 09:26 PM   #64
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I just had some ideas Dee:
what if you talked with your mom and designated certain days she can come over and you two can play board games or card games together or regular dominoes? Maybe you can set up a few days a week that you can get your mom to start playing those games with you and in time, if she enjoys it, then you can ease her into going out to the local community center to play them with others her age group?

Or get her to volunteer with meals on wheels. If she doesn't drive she might be able to get someone in the area that does this, to pick her up and she can help prepare meals or even deliver food with someone, for those that need it.??
Just a couple Ideas that I hope might work for ya.
Thank you for the suggestions. i'm working on getting some sort of pattern going with her.
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Old 12-14-2013, 09:34 PM   #65
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tonite my mom and i were invited to a friends birthday party. She really likes this lady and wanted to go. it was for 6:30.

At 3:30 she started stressing about when we were leaving. Then it started raining so she was stressing about that. Frantic even. My mother has been deathly afraid of bad weather since i was a kid, (like hide in the bathroom with a flashlight and a radio until it stops raining) .... we finally left and she was chattering about how bad things are, and the rain OMG if it doesn't stop raining and why did we go out and the restaraunt had nothing she wanted so she didn't eat, she wouldn't touch the napkin because she may get a rash, sooooo she just sat there not eating... and it was too cold and the people were too loud and the little kids were being mean to each other (being normal) and and and...

Then when we left she wanted to stop and get something to eat.

my poor mom just cannot relax, she jumps out of her skin for just about everything and at times she feels like a complete stranger.

i was a bit stressed out when we got there after all that but then i just let it go and said screw it and had a great time.

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Old 12-15-2013, 05:53 AM   #66
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i was a bit stressed out when we got there after all that but then i just let it go and said screw it and had a great time.

Well done for getting through all the stress stuff and managing to have a good time anyway, it's much easier said than done.
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Old 12-15-2013, 02:48 PM   #67
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Has anyone every had to fight to get proper care for their loved one... whether in a home or a school? I fear this is the path I am headed down right now, and I am not sure how much of a fight its worth... Or how much of a fight I can handle.

My son is in 4th grade... he has severe behavior needs due to autism, adhd, and an impulse disorder... and I found out this last week that they are restraining him unneccessarily, and doing it improperly at that. I don't know how much of a fight this is going to be... and I am wondering if it will even be worth it, or if I should just find somewhere else for him to go to school...
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Old 12-15-2013, 03:53 PM   #68
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Has anyone every had to fight to get proper care for their loved one... whether in a home or a school? I fear this is the path I am headed down right now, and I am not sure how much of a fight its worth... Or how much of a fight I can handle.

My son is in 4th grade... he has severe behavior needs due to autism, adhd, and an impulse disorder... and I found out this last week that they are restraining him unneccessarily, and doing it improperly at that. I don't know how much of a fight this is going to be... and I am wondering if it will even be worth it, or if I should just find somewhere else for him to go to school...
Hi there JustLovelyJenn

So sorry to hear you're having a difficult time with your son's school. How difficult for you, and him. I'm not sure how much help I can be; I live in Britain and I'm guessing you're in the states. However, if you lived here, this is what would happen.

An educational psychologist would be involved who has a good understanding of the educational needs of children with adhd, asd and associated behavioural difficulties. They would co-ordinate a consistent approach, in consultation with yourself, and follow this up throughout your child's schooling. Does his school have one of those?

Failing that, you could go back to the psychologist that diagnosed him. If he's on meds you may have contact with that person anyway, and ask them to help by contacting the school.

If it's all too much and nobody is listening, in Britain you could contact a social worker to fight those battles for you.

It's all so stressful but will be so worth it once your son is more settled. Best of luck with it and let me know how you get on.

Rxx
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Old 12-15-2013, 06:12 PM   #69
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I'm sorry about all that Jenn. I wish I had answers for you. I would contact maybe someone with the Disabilities dept in your state , maybe they can steer you in the right direction?
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Old 12-16-2013, 07:53 AM   #70
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Searching for a Medicaid bed in a facility that is rated at least above average to well above average for the HL's dad. It also has to be relatively close to where we live so it makes our daily trips easier.

Who would have thought finding a bed in a facility with the combination of moderately close by, quality care that takes Medicaid would be so difficult in a metropolitan area of 5.6 million people.

The clock is ticking on the rehab center. In 3 days his Medicare will be up for the short term rehab facility. They told us we had 60 more days on Monday then on Friday after 5pm told us he had to be out Wednesday or we have to pay $142.00 a day. (We can't afford that).

Considering how hard it is to find the elusive Medicaid bed, we should have started sooner, immediately even. Now we know I guess.
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Old 12-16-2013, 10:40 PM   #71
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Sorry to hear of the troubles with finding a facility that works for your family, venus. I hope you find one.
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Old 12-21-2013, 06:46 PM   #72
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Being a caregiver to my mom is stressful. Now my birth father is not in so hot a shape. He's got diabetes and he's got blood in his urine, an open sore on his foot he's got meds for thank goodness, and a 30% usage of only the upper part of his heart, and he's not been feeling well and is anemic. I worry about him, he lives with my 93 yr old grandmother...his mom. She gets around really well, but I just hope I'm not in for some more bad news about my dad. We've been trying to have a relationship the past 2.5 yrs now since I honestly didn't know much about him when I was a kid and only visited him for short time when I turned 21. I don't wanna lose my dad anytime soon and I hope the tests my dad is taking will give reassurance that what he is going through is nothing serious. He lives 5 hrs from me just south of Austin. I don't have funds to take a trip to go see him but I do call him often. Keep him in your prayers please. Thanks.
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Old 12-21-2013, 06:53 PM   #73
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Hugs to you Tru, I'll be keeping you and your dad in my thoughts.

Rxx
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Old 12-23-2013, 06:13 PM   #74
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Mom is having carpal tunnel surgery on her left hand in Jan. 2014. She's been complaining for years about her left hand and wrist bothering her now it's gotten bad enough to do the surgery because it's bothering her in her sleep now. When she wakes up it's hurting and feeling numb and she can barely move it. So, the doc recommend surgery to stop the pain and hopefully with this new type surgery they do now, it will stop not only the pain but allow the nerve not to get pinched and cut off circulation. We also found out she's got rheumatoid arthritis in both hands now, they just aren't bad enough to take any meds for unless it's tylenol.
I myself need to go in a see someone about my left hand/wrist, it's been hurting me more since I injured it back in 04. Time to see the doctor and see if I need surgery done or if it's arthritis or both. It goes to tingles and hurts all the time and I lose circulation in it so time to go now. Maybe I too can get some relief from the pain.

Dad has been going to see his doctors for his issues. His foot is healing up nicely now since the doc grew a culture and was able to determine precisely which antibiotic to give him to heal him up. His kidney doctor is running tests on him now and we'll see what that entails at a later date. He's still due to see his cardiac doc. to run doppler tests on his legs to check for blockages. And still due to get his colonoscopy done. Not much I can do but wait for him to tell me what's going on.

I hope all the other caregivers and their family are doing well lately.
Merry Christmas to you all and Happy New Year!
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Old 01-10-2014, 08:41 PM   #75
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Well today was mom's surgery for carpal tunnel, later today that is. I just got home and am now trying to relax. She is doing alright but we'll see tonight and tomorrow after the lidocaine wears off her hand. she's allergic to codeine so doc prescribed tramadol. I hope it helps her with the pain she may have. I"ve never had this surgery, although I probably need it done as well. She's out of commission using her left hand until stitches come out in 2 wks from now. Then we'll see what's going on with it. I don't know if she'll need hand therapy for strengthening. I just am glad it's over with and she's back home. She was so afraid today and I know it was hard on her emotionally because everytime she's had heart or artery surgery it's scared the babyjesus outta her. The doctor and I both reassured her it was a minor surgery using a twilight like drug called versed to put her to sleep. When he told her that the surgery was only 20 mins long and about the light anesthesia, she was at ease then. She woke up 30 mins later and was just fine, smiling and being all sentimental with me. Man, that just made her feel better. I"m glad she didn't wait to have the surgery, she needed it and I hope it works for her.

Dad is still seeing his doctors, his foot is finally on the mend. He fainted at the podiatrists office last week so they rushed him to the hospital and kept him for couple days doing tests trying to figure out why he fainted. They thought something was wrong with his kidneys but he says he's fine now.
He's home now, but I worry about him. He doesn't always tell me when things are bad for him, he thinks because I live 5 hrs away that he shouldn't tell me because there's nothing I can do for him. He has so many issues going on with his heart and arteries and his diabetes. I told him next time something is going on, he better tell me so I know and can at least talk to him on the phone before something really bad happens and I can't . My grandmother was the one that told me he was in the hospital so I just played it off and called his cell phone to see what he was up to, he finally told me after being there 2 days. SMH, and I'm just as stubborn as my old man is, and I wasn't even raised by him. LOL

I hope all the other caregivers out there are doing well and that their caregivees are also doing well. Have a great weekend one and all.
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Old 03-17-2014, 10:06 PM   #76
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How are all of you caregivers doing lately? I haven't posted in a while either.
I'm dealing with things that are happening here with an old woman that is 86 and and has dementia or something going on, she's delusional and accusatory of me. I have become a target for her yelling and screaming at me for no reason, she thinks I"m doing all sorts of things. It's gotten worse in the last year. I have been dealing with this neighbor like this for 2 years now and finally the new manager that's been here since last year is trying to get the woman's family to do something about it. She's about to get evicted because she's harrassing me and I feel bad about it but I have to take care of my own sanity. She's affecting my ptsd, anxiety goes through the roof and I end up taking full dosings of my anxiety meds just to calm down some. I lose sleep over all this and it's just getting worse for her and for me. I told my apt. manager today either something is done to stop her or I"m moving out. I don't know what else to do. I"ve been asked to give my manager 2 months so I agreed to it. I told her I have no place to move to but if I have to, I WILL MOVE OUT because I can't live like this anymore. I just feel like calling my younger sister and telling her I need to move on with my life and for her to come talk mom into moving where she is so I can move on. I feel bad about all this but it's just getting to me. The stress and the worries and the bullshit dealing with this neighbor. I"m in therapy and dealing with some issues I need to deal with but this stuff with this lady is interfering with my life. I feel like putting my head in a wall or pulling my hair out....I won't do that,I'm just venting. Adult protective services was called about her last year and they say they cannot make her go to a nursing home to get the help she needs, that they can't intervene because she's not harming herself or in harms way.
I just wish her family would get off their asses and take care of her better and move her to a nursing home where she needs to be. It's ripping me up emotionally and mentally to deal with her almost everyday she sees me outside, and I feel trapped here, stuck in my apt so I don't have to deal with her. I just wanna scream my head off !
Sorry for the vent, but I just needed to. thanks .
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Old 05-12-2014, 07:14 PM   #77
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Default My Dad

My father lives 5 hrs away with my grandmother just outside of Austin and hour. He's not in the best of health and has been battling a foot infection. So far, his toe got infected and wouldn't heal, then they tried the chamber to flood him with oxygen to stop the infection, that didn't work, and they used a vacuum on his foot to draw it out and use honey to try and get the bacteria to go to the honey and come out of his toe so the vacuum could suck it out. That didn't work. He got 3 more places on his toe that were more infected so they did surgery on it and removed his big toe all the way down to the large toe knuckle.
The surgery was Friday, on Sat the wound care nurse said it looked good, on Sunday dad started running a fever and the toe didnt' look like it was healing and was warm to touch. On Monday, today, he saw the podiatrist and he was running a fever the surgery site was healing and had an infection in it again. They admitted him to the hospital there in Austin. He isn't in pain or anything, he's diabetic and has severe neuropathy in his feet so he doesn't feel pain. I'm worried the will cut of part of his foot, then that will get infected and then they will go all the way up to just below his knee. I sure hope what they are doing will heal his infection . I would hate for my dad to lose his leg from all this. It's really weighing hard on my mind. I'm concerned for him. His diabetes is stopping him from healing and I don't think the first surgery got all of the infection because it was in his bones in his toe. Worry worry worry is all I can do. This is a procedure that can change my dad's life forever and put him in a wheel chair. If he loses part of his leg, I hope medicare will pay for a prostetic leg for him to use to walk with so he has he ability to walk again. UGH so frustrated and so frustrating for him I'm sure. Please keep James in your prayers that he heals quickly and doesn't lose a limb from all this. Thanks.
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Old 08-07-2014, 10:18 AM   #78
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On July 20th just after midnight,my father lost his battle with diabetes and congestive heart failure. I was with him by his side on the evening shift in hospice care. He passed peacefully and I know he is in a much better place.
He decided long ago that he wanted to donate his body the the UT Medical Science Center in Houston which will return his ashes in a couple years. His memorial was on Aug. 2nd, where beloved church members, close friends and family members attended.

After having endured the stress of losing my father, I was able to return home 3wks later only to find my mother has been having irregular rapid heart palpitations and rapid increases in blood pressure. She was taken to the hospital and given a chemical stress test to look for more blockages as she is prone to atherosclerosis ...aka hardening of the arteries. They couldn't find anything that would have caused her symptoms of left shoulder pain, left sided throat pain, and the rapid increases in blood pressure and heart palpitations. This happened while I was gone with my father. A couple days after I returned home, it happened to my mother again. Once again she was taken to a different hospital in Tyler where they still couldn't find anything wrong to cause this to happen. We have urged the heart doctors office to call me as soon as they get a cancellation so my mother can get in to see her cardiologist sooner than Aug. 29th for her yearly appt.
After the stress I endured being with my father , I've come home to more stress about my mother. I don't think I can handle one more ounce of stress at this time. I"ve reached my limit and have begun to shut down emotionally.
I guess I'm trying to protect myself from the fears of losing my mother as well if something happens to her. She lives in a rural county area where the bridge is out that the ambulance drivers have used to get to the county roads. While mom was on the phone with 911. I beat all the drivers to her location and found out that the ambulance had gone to the bridge to get there and couldn't and was re-routed to the county roads back way to her location and became lost. It took over half an hour for them to arrive and finally get there to her. I'm so pissed at the county for letting this bridge issue get put off for replace and rebuild because what would have happened to my mom if this had been a heart attack ? I'm calling my state senators office to try and get something done about the bridge issue, it's not supposed to be rebuilt until sometime in 2017. That's just too long and not only my mother elderly that lives in that area but there was another incident where a 50 ish man was thrown from a horse and needed an ambulance and they couldn't get there in time to treat his head wound which may have saved his life. There are other older folks that live in that area that I am concerned about as well as children. I'm just flat out angry about the bridge issue. I just hope that I can get something done about it. I hear ya.....good luck with that right? ......well a person can try and should try and that I will do.

I hope each of you caregivers' lives has settled down with less stress, but for me, it seems when it rains ....it pours. I need a dry spell for a while.

Justy
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Old 10-28-2014, 07:36 PM   #79
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Lately in the past several months, it's been so stressful just to even be around my mom for me. I just can't handle the amount of yelling, griping, bitching, screaming at me that she does. I lost my control today with her and yelled back to just get her to stop it. This went on for hours today, I couldn't do anything right and she's blaming me for things that she's chosen to do and not allow me to help her with, that's my fault how? OMG I'm so broken inside it hurts me to no end to be screamed blamed and yelled at for things that aren't in my control or for things I don't do for her because she won't let me. My mom is miserable where she lives, she wants things better but she will not do the things necessary to make that happen, like move to my sisters home in TN where she will be well taken care of. Instead she takes her anger out on me and has been for several months now. I know how the old saying that says you hurt the ones you love the most that are closest to you, but that's the shit that has to stop. I can't take anymore, my ptsd is at an all time high, my anxiety is running amock and I'm having to take double the pills for anxiety to keep mine under control. I've talk to my therapist yesterday about all this and about how guilty I feel that I need to distance myself from my mother (she's toxic to me ). I feel that it is my responsibility to help her when she needs help and when I do things for her, all I get is bitched screamed yelled at about doing it the wrong way. I feel so empty inside towards my mom now, I just don't even want to be around her, that's how broken I feel and I feel guilty about it so much that it's causing my depression ptsd and anxiety issues to rear their ugly heads too, along with how my mom talks to me and treats me. I told mom today that I am done, I won't be yelled at anymore, I won't tolerate her behavior towards me and I'm tired of coming over and helping her and all I get is bad attitude towards me, the yelling, screaming blah blah blah BS that i go through that I was done. I can't take anymore. I'm not going to do this with her anymore.
Texted my younger sister in TN and told her whats been going on, she won't get the text until she leaves home for work tomorrow, no reception in her home to get it. She's going to be pissed off at me for sure, but oh fucking well. This is what I have to do for me to take care of me and distance myself from someone who's acting like a mad woman that's losing her mind.
She's like jekyll and hyde, nice one minute then here comes the craziness and drama. UGH I feel so broken and so guilty for needing to just exit this entire life of taking care of my mom. I sure hope therapy will help me feel better about what I need to do for me to take care of my own needs first.
UGH UGH UGH TRILLLION UGHS.
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Old 10-28-2014, 10:08 PM   #80
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Default bump bump bump

Just bumping the thread tonight.
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