Hi! I am new here...I am the caregiver of my mother and father who are 80 and 82 years old. They still live at home but for how long?? It's that moment of crisis...It has been years of frustrating family dynamics...My parents are German. Dad is stubborn, rude, self-centered, & oppressive. I am sure there are good qualities there too, but these negative ones always seem to overshadow any of the good. He has had a couple of strokes years ago, and now any talking (word finding etc. ) is a huge struggle, not that he ever communicated or ever carried on social conversations or needed discussions about anything before his strokes. He also can't hear much of anything. My Mom is sweet, Christian, loving, but totally dependent and oppressed by my Dad. She never learned to drive, and is afraid to talk to him or ask questions. My Mom does everything for my dad, has to wait on him hand and foot since forever. She has Parkinson's and now can barely stand up right now or use her walker. She is so bad off I don't even know how she will get to the DR. tomorrow. I just missed two days of work being out with a bad stomach flu and can't miss Monday. I have two brothers, both married and younger than me. One brother has two children. Me I have a 12 year old adopted daughter, 2 stepchildren from a previous marriage ( 1 son turned out to have Aspergers which was diagnosed when he was a senior in college, the other son, severe bipolar when a freshman in college) I remarried three years ago, and now have another stepson 17 years old and my husbands daughter is 22 and is still unwed and pregnant with second child... she may also it turns out have bipolar Who knew? My plate feels pretty full right now. My brothers help some, each does what they can..that's a another topic of discussion. So right now......I just need to talk ...it's how I process and move on. My husband unfortunately needs to have everything fit into a 30 second sound byte,, and then tells me "not to go there" , "don't put energy there" and my favorite "let it go". So here I am ....you guys..Bobcat, moms Buddy and John were awesomely compassionate and welcoming as I tried to figure out why the chat room thing wasn't working last night. Thank you so much. Looking forward to getting to know you all.

DD57, My husband had parkinsons with Lewey Body Dementia.Very common with the disease.
If given tests by a good neurologist they can prescribe meds that will help.My hubby began with eye hallucinations.What that was is things took forms of people .Hubby was still able to be reasoned with and the psychiatrist worked with him to understand what he was seeing was not what it was.That was dealt with no problems.
They put him on Aricept to slow down the dementia.It worked for over 2 years.Then the paranoud psychosis began to show ..That was not as easy to control but we found a happy medium.The real problem began when he began having continuous UTI.Many times it was the achiness all over.I would reconize the signs and get antibiotics immediately, once the urine was checked to see what form of bacteria was causing such.Other times he showed sever symptoms of paranoid psychosis.The symptoms were so severe and he always viewd me as the bad got who was out to hurt him in every way thinkable.Until I learned the cause of these behaviors I was at the point of hating this person for his awful treatment toward me.
Later After each time he was good but the paranoi advanced so quickley.
One time I had to take drastic measures because of his dangerous behavior.
Once he was placed on meds he was better, not cured but betterHe had severe physical symptoms.The severe stoop , the shuffling of feet and the trembling.Meds stopped the trembling.Only time they were visable is when he became upset with me.
It was so sad to see this happen.He had so little physical illness.Mostly UTI.No colds, no flu, more bacteria infections caused by germs, etc.
His worst symptoms was her felt he was being harmed or cheated by everyone.
Interestinng , he has nightmares from the time we got married and they were about him being a victim and trying to fight back.Never could find a reason for the nightmares.
He continued to be as physically active as possible.He took long walks , using a walker.He walked the tread mill and also lifted hand weights.He was a very determined person .He was going to do what was necessary to maintain his ability to walk and go out.He became bedridden over 2 years ago.He had a uti, I called the doctor and the doctor prescribed a meds that I told him did not work.After 10 days the infection was worse.The doctor put him on the correct antibiotic but the damage had been done.He was never able to walk again .Had physical therapy at home but it was not able to change the condition.
If they do the proper tests and give the proper meds she will do good.There are meds that do so much for the symptoms of parkinsons.Do some research and look into the meds.It will give you a step ahead in dealing with it.
Swallowing could become a problem.We had therapy after hubby came home .Even with dementia he never forgot what he was taught.
I give you this information to enlighten you.Not all afflicted have such problems.Look up LBD with Parkinsons .
Also my husbands long term memory remained good.It was his ability to absorb new information that was his problem.
A good doctor, who knows Parkinsons will know what meds are needed at the right time

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Originally posted by dorisday57:
THe nurse tonight thought my Mom had dementia, and I said no, she only had Parkinsons. She said something about dementia often being a part of Parkinsons. I guess I wasn't aware of that.

dorisday57,
There is a neuropsychological exam that can measure your mother's cognitive abilities. It may be something you can talk to her DR about at a later date.

Thanks Anna! I just finished your "i am new here" thread. Wow! THe nurse tonight thought my Mom had dementia, and I said no, she only had Parkinsons. She said something about dementia often being a part of Parkinsons. I guess I wasn't aware of that. THat must be really tough! I agree with one of the replies, even if you had known more people or had many more friends....that doesn't mean that it necessarily would have prevented you from being isolated now. it sounds like you have no sibs...I guess then there are no disagreements there. But it is a big burden when you are doing everything yourself. But I bet the friends you make here provide tremendous support you may not find anywhere else....since we walk in similar shoes and are in a great position to know how to help each other. Have a great Tuesday!

Wow, I can hear the relief in your voice! It feels good doesn't it when things start to move forward. Now, your Mom will get the help she needs, she shouldn't have to live with that kind of pain. I'm happy for you....

Just got home 9;30 PM ...I took my mom to the emergency room at 12:00 noon and Hooray they admitted her!!!! I am so relieved. THe first thing I asked for was a social worker. Mom of course was in more pain today than yesterday, barely able to get out of bed much less make an attempt to go to the Dr.appoint she had this morning. She canceled and the neurologist called her back and told her to get herself to an emergency room so they could do an evaluation. It was actually a good thing she didn't make it to the dr.s. ..everything started to unfold. Since we were going to the hospital, I now didn't need to find a wheelchair because as long as I could get her in the car, they would have a wheelchair for us there. The admitting Dr. felt it was pretty clear her back pain along with knee/ foot pain was not related to the Parkinsons. It seems to me that there are many layers of things causing the pain problems and her final inability to walk right now. THey are even looking at a sleep study tonight to check out the sleep apnea. This is so great. This will be really hard on my Dad..but this is just what he needs right now (a big dose of reality)This is the window we need to open up communication about their living arrangements and now I will have outside help (social worker) to hopefully cut down on some of the confusion and legwork. At least get us goin in the right direction!

DD, I take it that your parents are still living independently (or at least propping one another up)? That is real tough when they do not want to or ask for assistance from us. Some folks will stay by themselves waaaaay past what is safe and healthy for them, preferring to stay in the place where they feel most comfortable and secure. While we respect their sovreignity and position as our parents, we have to do something if they are needing services ot help them through.

Nice to meet ya Bunnys_grl. Love the animated pic!
yeah, I think we need to formally organize the delegation of tasks. We have talked about meeting together but of course we have all been too busy, so it hadn't happened. I guess sometimes crisis forces certain actions to happen. It just may not be johhny on the spot! If my mom gets to the point this week where she can't get herself out of bed with my Dad's help so she can go to the bathroom...it could be a little messy....but then that moment will force change. Pretty immediately I am guessing! BTW I love your sign off saying.

Hi Merrwid, you all are great, just what I needed to lift my spirits and pull my self together for the week. I like that about the swan, I'll keep that image in mind. I think what got me about the sibs and spouses is that everyone thinks they are doing the most or have the most upset going on in their own lives compared to the next one. All it took to ruffle my feathers is to hear a little of that coming from my sister in law, so that I ended up saying but don't forget I've been taking her to PT. this summer, Dr. appointments, chirop. 2X week now, plus grocery shopping. Then when I finally inquire of my younger brother if he could pitch in a little this week , he wants to push it back on my other bro and his wife because his kitchen is totally torn apart (it's been that way for the past year) but this week is the deadline for the floor being put in. Which is why I haven't really gone out of my way to ask for any of his help till now. But it really is my first sis in law that started the aggravating comparisons which sensitive me was set off by. THen when I try to express my feelings to my hubby, he accuses ME of making comparisons and i should "just not go there" He got mad when I tried to clarify that was what is bothering me is my sister in law is making those comparisons. So that is what led me to this place. I thought...I need to vent, share, learn, listen, seek advice from others who "know, been there" and "done that!" I know my husband loves me and will hold me, but he has a really hard time listening without just giving the 30 sec sound byte "fix it" routine. Anyway, thanks for your reply!

Howdy and welcome in DD57
Well ya found the front door here without stumblin so thats a good sign may get a little bruised up every now an then but hey we'll show you our war wounds if you show us yours
Set a spell take yer shoes off and breath deep feel it in your soul...Now exhale
Now remember they (family) only bug you if you let them the trick you have to learn here (and were mighty good at teaching it) is to Detach.
As much as our LO's irritate us with the incessant questions and quirks they have if you allow it they rule you and your emotions.
Its time to let go and focus on whats most important at the moment and thats getting you back on your feet and letting the rest take care of itself.
Another word here since you have some help...DELEGATE (if not hunt them down list in hand knock them off their feet and hold that ole to do list to their face ) WHAT?!

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You'll find many wonderful people on this forum, and sometimes you'll wonder how they can be so calm when your world is unraveling right in front of you.
(Actually, we're swans. Calm and unruffled on the surface, but paddling like the devil to stay afloat.)

Man! Now THAT was a mouthful right there Baby! LMAO!
That describes us to a Tee!

Nice to meet you Moms_Buddy! I loved your post, some of it made me truly laugh out loud which is not something I do often unless it's really funny!I will also print the list about forgiveness..I think that will be coming in very handy on a frequent basis!. Now to your questions..John A. sent me an E-mail through this site and said he used to be one of the moderators of the chat room I think. So he was explaining why it is now gone. So , no he didn't publicly post his response. Looking for any John is what made me first and then more when I read the part about working the Germain traits!! Still

Hi Doris!
It sounds to me like it's time for an 'original family' reunion - Mom, Dad, your 2 brothers and you, and husbands and wives.
You said your brothers help out when they can - find out What they can/want to do, and When they can do it. You might have to shout at Dad, but you all need to find out what plans they have in place. What are their wishes?
Have they given any thought to what might happen to one when the other is no longer there?
You do have a very full plate; maybe it's time to get "the talk" started.
You'll find many wonderful people on this forum, and sometimes you'll wonder how they can be so calm when your world is unraveling right in front of you.
(Actually, we're swans. Calm and unruffled on the surface, but paddling like the devil to stay afloat.)
Truth is, we're all in this together. Some of us have been there, done that many times. Some are just like you - at wit's end and just beginning the journey. We offer back pats, sympathy, and the (very) occasional slap upside the head. And advice. Got a question? Someone here knows the answer, or knows where to send you to get it.
Hope to see you here as often as you can make it.

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Bobcat, moms Buddy and John

Who's John, DD57? I didn't see no John... 'Course after I eat some nachos with jalapenos on 'em, I'll be LOOKING for ANY john...

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My parents are German

SUPER!! That means YOU ARE TOO!! Work that German stubborness, discipline and resourcefulness to your best advantage.

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My husband unfortunately needs to have everything fit into a 30 second sound byte

It's HARD to be the spouse of a caregiver. Sometimes our spouses who DO love us just don't know WHAT to do with us... they don't realize the need to simply LISTEN and maybe even hold us or bring home dinner unexpectedly every now and again. If EVER there was a time in life that little kindnesses REALLY matter, it's this one! Most of us have had the experience of someone doing some little unexpected nice thing for us and nearly bawling because we felt so grateful, starved and downright IN NEED... and embarrassed that we are wiping away tears just because someone was NICE to us!!

Forgiveness is a skill best learned quickly by caregivers...
Forgiveness of:

people who do not "talk the talk and walk the walk"

relatives with opinions but no assistance

loved ones and friends who "don't wanna hear it" when you need to talk

vanishing friends

People who tell you you are being foolish to "waste your life this way"

our loved one for all the annoying things that they know not that they do

ourselves, for not being "enough" often enough in nearly any given situation

I know there is more on the list, but other members'll help me out with what I have forgotten that we need to be able to forgive...

Caregiving has taught me to have a much thicker skin than I thought I could;

It's taught me patience I never thought I'd have (with nearly EVERYTHING);

I've learned indelibly WHO my friends are and who they are not;

I've learned to put blinders on and cotton in my ears and do what I think is best EVEN if I feel clueless or shaky;

I've learned that I CAN handle a LOT more stuff than I ever imagined that I could;

I've learned that pity parties are inevitable, so when they occur, get 'em over with ASAP - they are usually unproductive and can be very destructive to me and to my relationships;

I've learned to "see" my surroundings and events with a different eye toward safety, piecing together the method to the madness.

I use my energy more efficiently than I did before caregiving;

I've learned that I AM NOT ALONE!

Reaching out to the right people can be such a godsend and reaching out to the wrong ones can cause me to tailspin. I try to walk on the LIGHT side of the street and stay away from the shadows...

I've learned that I CAN laugh and even have fun at the most awkward of times...

I've learned to treasure small gifts from anywhere.

And I am STILL learning and feeling my way down the path...

PS. I am going to play a game with my daughter and when I get back online, I'll have to look at your posts, AnnaS, so I can meet you and your mom; and find out your stories. Looking forward to it.

Nice to meet you AnnaS! Just got off the phone with my mom and she said the Ibuprofens I brought for her to help ease her back pain made her dizzy. I swear every medicine known to man makes her dizzy. This is also why she is not on the right dosage for her Parkinsons meds..they make her dizzy. You know, maybe I should just chill a little. She probably won't make it to the DR.'s tomorrow, besides she only gets to see her PA not the neurologist....and maybe that's OK. Then her and Dad can stew in reality a little bit. Maybe that is exactly what is needed and I just need to calm down and let it all unfold. My need to be proactive will just need to take the back seat to a little reactiveness therapy. Sometimes there is a fine line between hope and denial. I don't want to take my Mom's hope away, but her denial is going to soon get a slam in the face. I can tell my frustrations with everything are coming out as a little angry when I talk to my mom. I need to exercise patience, let it unfold a little.

I feel for all you are going through right now. It must be especially difficult to be worried about not only your folks but also your children. It sounds like you are especially worried about your mom. My mom has PD and I can’t imagine her waiting on anybody. How does your mom do it? I think you are right that now may be the time for you and your siblings to begin looking at long-term care options for your parents.

I’m new to this forum too and have found such great folks here. Here you will find such a well of experience and knowledge to tap into that it will make your journey a little more bearable. Look forward to hearing from you.