The Caregiver & Dysfunctional Families: How are you doing?

Austin,

You are right! I do have to say, "No," to her.
She's such a piece of work, next to golden boy.
Thank you so much,

Much Love & Light! Margeaux

Allison, I totally agree with you he needs an evaluation. I would try and start with a neuro/ psych evaluation. I don't think you need a referral from pcp if he is medicare, but not positive. There seems to be a lot going on but also some sort of deterioration. There may be even some increased depression. It makes sense you want to try and get this resolved so you can get on with your life. Also, since you have had issues with environmental mold, and your health is still suffering, is it time to see a pulmonologist? Concerned you could get permanent lung damage if this persists. Take care of yourself......

I am sorry Alison. I know the word out there is that help is available, but many like yourself seem to hit one road block after another. It isnt right or humane when our elderly suffer like this and the family caregivers hands are tied behind your back. You are dojngeverything right but no help from services or family. Unfortunately it becomes a waiting game until your father declines to a point that he meets the needs of the services available. I do hope someone or others can help you find solutions/answers. (((Hugs)))!!
Y

I have tried before to get my father to geriatric specialist outside of VA. My father gets Medicare, and I contacted Medicare and got three pages of supposed Geriatrics Physicians that accept Medicare. I called all of them, spent days play phone tag with answering services and waiting for call backs, and in the end 80% of those listed weren't even Geriatrics physicians (other specialties or wrong numbers, it was ridiculous). I found one who was semi close to our far south Chicago neighborhood, made the appointment for a month out, showed up on time with my dad, waited for 2 hours, asked receptionist when my dad would likely be seen, she said likely be another 1 -1 1/2 hours… I said no way I'm making this guy my dad's new geriatrician! And left. And lost momentum on that project. So, I have put in effort to get him a geriatrician outside VA, but Medicare system was yet another crazy experience. I do need to try again, do something different… maybe calling social worker at Catholic Charities Elder Services who has been helpful to me in the past, when I first came here, and getting her input. I am writing note to call her on my to-do list now. :-) Feels good to have any concrete next step to take.

I understand much more Alison...a boarder audience can give you info. Can you make make appointment with a geritratic specialist if his insurance will cover. I didn't know he had a bad car accident..you are so young and should be able to get on with your life. Being a compassionate person, it is very hard for you to. Much love and his to you.

ABB, when I first found this site, there was this thread that had sooo many people's opinions. I just wish I knew which thread it was. Unfortunately, when I found this site, I was jumping all over the place, reading everything, answering, etc... But, I read over and over how helpless they felt because relatives (siblings, hubby's children, etc...) would not help. How the parents were found in their home, prone, and close to starvation. Only then, did APS finally step in despite the long distance daughter's frequent request for their help. I read sooo many threads, I just cannot go thru it all trying to find it.

Here are 2 that had long discussions. Hopefully someone in there would have something that would help.

Does the Negativity and Emotional Abuse Ever get easier to live with?
https://www.agingcare.com/questions/living-with-negativity-and-emotional-abuse-from-parents-151695.htm?cpage=1

How to keep from going crazy while caring for your mother & not having a life?
https://www.agingcare.com/questions/caring-for-your-mother-not-having-a-life-151998.htm?cpage=1

Sharyn, its so hard to tell with my father what state his mental faculties are. He was always odd and extremely introverted, given to fits of blind rage at times, and extremely naive about how to interact with other people appropriately. He never held a steady job, has addiction issues, and generally has lived off the grid. His mother realized, I think, his limitations, and so he lived with her for many years before she began decline into dementia. And he very well may have mild form of autism/aspergers's that wasn't diagnosed as he grew up in 40s. Or perhaps brain damage from bad car accident that left him in coma for 6 weeks when he was in his twenties. He's difficult to judge by any "normal" standard… this makes it more difficult for me to really figure out whats going on.

With regard to getting him evaluated, his PCP actually cancelled my father's last appt, saying VA was moving towards "phone consultations" if actual visits weren't deemed necessary. I can call the PCP and speak to him about these issues of slipping ADLs and see what he says. I've been trying to get him evaluated for what seems like years. There's been a lot of obstacles. But looks like this is still a step I need to get done re his overall health.

Many topics are discussed here just like on the You thread or Grossed out thread, a boarder audience may be more ideal so you get different people to answer.

Regarding your father Alison, I do agree with Book, as long as you are living in the same house as your father, he will depend on you to do what you have been doing up until just recently. I don't remember what your father's ailments are such as dementia/alz being part of it. It is also possible that he has noticed you not taking care of the things you were taking care of before...maybe depression or he may be trying to call your bluff. I may get called out for saying this, but I really think men in particular, will expect a female to do the grocery shopping, cooking of meals, trash, and any cleaning. You might want to take him grocery shopping with you, tell him he has to pick out what he wants because you are not going to be here much longer. another option is if you can arrange a respite time for yourself...say 2 weeks and see how he handles it. Much love and hugs to you as you journey through this part of getting your much needed life back.

Thanks, everyone. I should've put this issue out as Question for entire AC forum, but I'm comfy inside the DYS thread, of course. I'll edit it down and put out as question tomorrow, as I'd really appreciate a lot of input. You guys are the best, but there's no reason I have to make this little thread solely responsible for assistance here. :-) This is truly a caregiving issue, not just typical sharing amongst thread group. (((((hugs)))))

I agree with Austin. I am doing just what she suggested because my sis is used to everyone doing what she wants....my parents basically set it up that way as sis has a history of being temperamental since she had a lot of attention placed on her as a child for one thing or another. My daughter was somewhat similar to my sister with her eating habits as a child, but I refused to cater to her like my mother did with my sis. As a result, my daughter will now eat veggies she hated, she eats more home cooked meat/chicken/fish.

My point is that my parents allowed my sister to call the shots even in her adult life...when we could get together as a family...it had to be either at her home or a place she approved of....she complained about picnics I planned because it was either too far for her to drive or it was too primitive. Setting boundaries with her regarding our mother has become so necessary...tonight was the first night at work I did not get a call from her. It was so nice not having to deal with her.

Hugs to all!!

ABB, you are enabling him. Just as my sister enables my father. And I do it, too (but not to the extent as sis.) There will be NO way your father will be helped by outsiders as long as you live with him. As long as you reside there, you are his caregiver. Period. If you want out, then you must pack up and leave. Live at the nearest apartment. Your father will then prove that he can live independently without your help.

If you have hopped around on this site, and read the various threads, you will find over and over, that APS, social workers will not step in as long as he's Not declared Incompetent. He will not be declared incompetent because most GP (general practitioners) will Not make that diagnosis (even if they see the signs.)

Some people, out of frustration, request to be seen by a neurologist or a geriatrician (doctor specializing with elderlies.) Even then, you may need to slip them a note on what you have observed at home (vs. what they see on the visit.) Again, if your father passes and is NOT declared incompetent, then he has a right to go home with no interference.

Then, you have the option to step back and NOT do anything. When he gets hurt (or almost starves to death), then, and only then, it seems the gov't will step in.

It's really up to you, ABB. The longer you live with your father, the more Everyone will assume you are his caregiver. Your family treats you as if you're abusing your father's income, etc... This will never go away. Be careful and protect yourself in the eventual end. Because I can see them saying that because you took $$, you don't deserve anything (even though you were there caring for your father... because in Their eyes - you were Free-loading on his money and home.) You need to figure out what you want in life. You know that I've been doing this for 23 years with mom. Now, I have father. Which makes it a total of 25 years. If your conscience requires that you stay with your father because he might get hurt, then you need to hunker down, and settle there with him for the next 15-20 years, knowing how the end will be with your family (and mother included.)

Another option... do a search on the top right. And start reading the different threads. So you have an idea of what others have gone through. And maybe this will help you in making decisions.

Allison, will try tomorrow;-)

Wow, thats a long and wordy post. ^^^ If you can possibly get through the reading of it, and care to opine, I appreciate it. :-)

I've got a caregiving issue I would like some advice on, please.

Since I was not feeling well this past week, I was in bed quite a bit, and my dad was kind of left to himself. Now he typically stays in his bedroom, door shut, listening to radio shows and doing crossword puzzles, and it wouldn't matter if I were up, and bubbly, and trying to interact with him, working around the house, he would still prefer to be in the room, in the bed, door closed… its what he does and I've just come to accept it.

The issue is - in past week, food in house really dwindled down. I usually do almost all the shopping, and in the past that's been completely ok with me. But I'm at a crossroads of sort with my father. He wants to keep living independently. I also want to begin to disengage from caregiving to him, so I'm trying to step back and allow him to live a more "independent life" while I'm here so I can try to gauge if he really can do this. (He's already shown complete disregard for continuing his medications… which I used to keep track of, but he told me he could do it on his own. Well, he ran out, didn't notify me, and stopped taking everything.)

I used to keep supply of easy to make frozen dinners, lunchmeat and bread, and other things he likes and can make on his own and used to make box dinners and store in fridge for him, but have already cut down on that because, again, I'm really trying to gauge whether or not he can care for himself if left to his own devices. I've stopped asking for his grocery list when I would go to store. The past month or two, I just bought things when I saw he was completely out. So I've stepped it down over past few months, with goal in mind that he needs to get used to idea that I won't be here forever.

So, he's eaten up all refrigerated foods, all frozen foods. We live one block (literally, its very close) from grocery store, weather has been nicer, if he wanted to take a walk and get groceries he could easily do so. He also knows I would take him up there if he wanted me to drive him.

I see his (lack of) trash in kitchen trash container and I'm at a loss right now for what he is eating for the past several days. I asked him about it, he says he's fine and going to go to grocery "soon." He said this to me about 2 weeks ago, too, and still hasn't been to store. We were driving home several weeks ago from med appointment and I asked him did he want me to stop at store with him, he said no.

I kind of figure that there is SOME food here, he will not starve, right? I mean, if one gets hungry enough they will eat the jar of peanut butter, the can of beans, cook some eggs, etc… the basics or things that have been in the cupboard for awhile…

I don't know what to do. I don't want to be cruel and I worry he is going hungry, but he takes for granted that I will keep filling fridge with food for him. And again, I have asked does he need me to get him food, he says no. (I think he's in denial that he isn't caring for himself, or needs help.) But I've stopped just filling the fridge. He wants to be independent but he isn't taking care of himself at all. How do I handle this? And how do I get message across to his doctors, and my family, Loud and Clear that he isn't showing signs of being capable of remaining independent? Because he puts on a good show at times and no one seems to get it that he isn't showering, and now apparently, isn't eating much… I am first and foremost concerned about his health, of course. I could go get groceries for him but I've been doing that, and thats not a good solution long term.

Any opinions, input, advice is welcome. And I won't take it personally. Perhaps I'm just being "bad caregiver" here? I really don't know. He respects nothing I say or suggest, and I wish like heck the home nurse would get started again already because at least one day a week he listens to them telling him the same things I'm trying to - and that is, he has to keep his ADLs up! He quite honestly seems lazy and stubborn to me, more than anything.

Btw, when I first came here in July 2011, my father did a lot of walking up to store to get groceries. I think I may have enabled him a bit too much...

Marge call her bluff and do not let her call the shots-she is so use to people doing what she wants-learn to say no to her it will be hard at is but as you do it more you will get your power back-why should she think her way is the only way.

Book,

You can sweeten or mix up the green smoothies with different kinds of fruit.
Banana is good for that. But I realize that banana can be high glycemic.
I've included things such as papaya, apples.

I have a Magic Bullet. They're great! I've had mine for about 7 yrs., now.
I really have to get into some juicing, and right now may be the proper time.
Happy juicing.
Much Love & Light! Margeaux

Sorry everyone,
I need to proof read better.
Margeaux

This a.m. I called my sister to see how mom had slept. She said, that yesterday afternoon, she and her youngest daughter smelled something. They discovered mom had pooped in her diaper. So mom was taken for a shower. Mom is still able to walk herself to the bathroom. However, as I wrote before, my sister yesterday had so much chaos going on in the house......apparently some time had possibly passed where she could have checked this.

Today's mothers 93'd birthday. So I'd told my sister that I would not be going there today. Besides, I really don't feel that after mom was in the hospital this last week she's in any condition to have people over in a festive environment.
Well, my sister was telling me this morning, of course in a whiney way, of her plans to call our brothers, and tell them to come down this afternoon. Of course because she always ends up making it a product of food, and a cake, this was all in order for the day, according to her.

I then told her that I'd just found out that I didn't have to show up to do Jury Duty, since I called the jurorserve hotline. Hence I was going to see mom on Monday, during the day. My sister started to hem and haw w/me, and I couldn't quite figure out what this was about. Finally, she mentioned the fact that if could come later on in the week, then this way she would not call a caregiver for the time I'd come. I so don't like it, when my sister feels as if she's going to call the shots when I visit. I told her I wanted to go on Mon., since I'm not there today for her "B," day. Anyway, we hung up. I got a call 5 mins. later. She was now asking me
whether I'd be willing to be there several hours, then she wouldn't get a CG, for that time. I said, "Fine, no problem." She so gets under my skin, the fact that she just can't be uncomplicated, and direct. She just plays so many games, and doesn't realize how many times she's put out the message, that she wants people their for their use. O.K., I'm just venting now.

I'd better see if I have those bath salts.

Much Love & Light! Margeaux

Well, there are a lot of other components going on at mom's right now.
That household is soooooo chaotic. Now you all know that I've written how my sister is a great administrator/caregiver. She's also the ultimate control freak, and a very possesive personality.

When she moved into mom's seven years ago, her oldest daughter was there w/her then boyfriend. Then she has her youngest daughter, 24 yrs. old.
Since then the daughter w/boyfriend married, moved out and now has two babies. Both parents work, and they've had a baby sitting situation going on in that household during the day. The 24 yr. old is helping in this area as well as the caregiver's for mom. So yesterday after I'd spent the night, her daughter showed up w/the little ones. It was so chaotic the 2 yr. old baby boy was in the living room with a train set. It was adorable, and I enjoyed seeing all of them.
However, my sister between tending to mom.....stops continuously to pay all the grandmother attentions to her grandkids. I was describing this scene to my cousin, and she raised the point, that possibly mom needs some quiet time.
I agree. My nerves were so frazzled when I left, for the first few miles of my drive home. WOW!! Anyway, there's more and will write again!

Hope everyone's having a great Saturday!
Much Love & Light! Margeaux

Book,

Oh.....did I have to bite my tongue, and I did leave the room 3 times.
Right now.....I'm having to pick and choose my battles. I learned a long time ago,
that it's best not to get into an opposing view with someone who is drinking. That is rarely productive..

Truth be told.....my sister is the main caregiver w/in the family, so she I guess be the one to tell him a thing or two. Actually I was there of course to get my own gauge about mom, and be supportive of my sister. Mom was asleep throughout the whole experience. So this meant that my brother really didn't see her awake.
Later when he was leaving.....he made some comment to my sister, can't remember. But I think it was regarding, mom being asleep. So my sister answered to him, "Well, you're always welcome to come back at 3:00 a.m., when she wakes up." Yes, my sister has her own ways of getting the message out.
Actually in this case, I was glad she said it this way to him. He totally deserved it.

So no matter what, mother w/be comfortable.

Thank you, and really I was fighting w/myself from going there, but my gut was there, Book. I never judge a caregiver in this circumstance too, for speaking up for themselves. Good for you!

Big Hugs,
Much Love & Light! Margeaux

Norestforweary,

Yes, you know.....I've always thought that the fact that society seems to be o.k., w/alcohol. In other words we live in a culture encouraging people that it's fine,
that gin and tonic, or a beer. Honestly, if people would just have the sense to not take it w/them when they're dealing with serious circumstances. After this happened, and golden boy left....I tried bringing up this topic to my sister. She acknowledges it, but in a very, very passive way. This too, gets on my nerves, because I'd sometimes like to say something, but I don't feel as if I have her back. For now, I've decided I'm going to bite my tongue, because it just takes too much energy to deal w/the then b.s., it could become. Anyway, for now it's Hospice, and he's just going to have to deal w/that!

Oh, if you're MIL looks as if she needs it, do some searches. There's plenty of information. Hopefully, you'll have everyone in your family onboard w/this decision.

Thank you so much1
Hugs,
Much Love & Light! Margeaux

Glad,

You hit the nail on the head about denial. Here we have golden boy, who once had POA's of both mother and the narcissistic sister of mother's. So years ago
he was in charge, but mismanaged, got the narcissistic sister (w/intermingled assets), pissed off, so she re-assigned POA to my sister and the youngest sibling. So, my brother had to bite the bullet w/his ego, and nowadays it's really bruised.

He's in denial for sure about losing mother. Then he's in total denial about the impact beers have upon his life. He's also had health issues the last two years which required surgery. So I'd kind of been told by my sister that he was cleaning up his act. But what I'm witnessing, "I don't think so." But you know the typical other deniars like my sister in this picture would rather give credit before it's due.
We all also know that denying oneself the drinking is a day to day situation.

Your FIL's attitude is exactly some of the things my brother was implying.
Yes, well that's too bad for him, because there's something called the controlled use of controlled substances too. When these are used in the proper manner,
at least what I understand about morphine, it's a benefit to the patient.
He also has been enjoying playing the victim, for a long time. That's how he wants to view it, "Well, grow up." The dysfunction!

Thank you so much!
Big Hugs, and I'm taking measures to hang in there.
A salt bath is in order for me, before the day is over.

Much Love & Light! Margeaux

Book-you are right...the agent calls sis in the evenings because of showing the house during the day. I don't think sis has to give him an answer right then and there...she can stall until after we talk the next morning. I think she is over reacting.

My dad got a goiter from not having iodine.

If you sprinkle any salt on a raw potato slice, and you see dark blue/grey dots, the salt has iodine in it. A friend of mine could not figure out why her hash browns always looked grey. She was using sea salt which was not "iodized" but contained naturally occurring minerals, including iodine. If you cook pasta, always use plain salt, or you will get that funny grey tinge.

Sea salt has no iodine in it.

If she's like my family and determined to talk to you, she will call repeatedly as if there's a real emergency (couldn't answer it since a client was sitting in front of me.) If she gets nowhere by cell phone, she will then call you at your work's phone. Happened to me. My boss answered the phone and told her that I was busy with a client. Best to just let her know up front how upset you are, how you can lose your job, etc...

Austin, when I look at the calorie info for the different smoothies, some have zero cholesterol. The ones with honey have a small amount of cholesterol. Truly doesn't seem bad to me except what if I drink this daily, then it is counteracting with the oatmeal.

Sea salt is... not really good for you. Your body needs iodine...just as your body also needs some fat. My family likes to throw that to me when I refuse to eat the fats on meat. I avoid fats the majority of time. But when I find myself craving fatty meat, I eat it.

Our body needs iodine. Because of the sea salt craze, people are switching to sea salt. In the medical community, they are seeing an increase of patience suffering with some kind of health problem (sorry, in bed, at 415am). Oh, you will get your salt from other salty food? But what if that food doesn't have iodine? So, once in a while, eat food with iodize salt. Or sprinkle dry seaweed in your food. Seaweed is also a good natural source for iodine salt.

Sharyn, and didn't you say you work part time? There are plenty of hours left in a week for her to call when you are not at work. Let her know your schedule including your travel time. Do not talk on the phone when you are making the 30 minute (?) drive. And it also seems you are working nights, closing etc. Lots of day hours to chat with sis about issues.

Sis doesn't have a cell. The only reason I have answered the calls is to help her with the decisions but she is getting to demanding wanting to talk at length even when I tell her I have to go help a customer...she just keeps talking,LOL! I just won't answer and let it go to voice mail.

Turn the phone off! She will still be there.