The Caregiver & Dysfunctional Families: How are you doing?

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

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.

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...

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

Allison, will try tomorrow;-)

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.

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!!

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)))))

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.

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.

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.

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

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.

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 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

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......

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

Sharynmarie,

I don't have any kind of experience regarding realty.
But my gut instinct is that this realtor is pressuring you.
How opportune for him, he caught wind of the situation w/your mother's
neighbor's house.

Stick to your guns.

Much Love & Light! Margeaux

Alison,

Just from witnessing the recent developments regarding my mom's situation, my sister.....who thought somehow she was going to be able to do just everything for mom, well guess what....she can't! The last stsy mom had in the hospital last week, their doctors asked her why mom wasn't enrolled in Hospice. Through these inquiries.....of course she had to become in contact with Social Services.

Right now,I'm hearing nothing but....how difficult it is, etc. She holds a 40 hr. week job, too. But here comes the but....she's chosen to do this too. So when you get your strength back you'll probably have to take some drastic measures to create your own life outside of your father's home. Even then, I'd be very weary of participating in the same manner that you have been doing so up to now.

If he behaves the way he does now, you can imagine that his demands will only escalate. Besides unfortunately, his house on account of the mold isn't doing anything for your health. Maybe if you start to take yourself into consideration, you will look at this in the bigger picture.

You're in my thoughts,
Much Love & Light! Margeaux

When Luise's husband died in 2002 (of prostate cancer, at home with no hospice care, caregiver Luise and son Sig) wasn't given one shot of morphine, by the golden children, but was allowed to suffer, until a half hour before he died.

When Luise was taken to the hospital for dehydration and starvation, lost 18 lbs (took her to their house too many times, in a short amount of time and left her home alone and went to work, the golden girl who by then had POA of finances and golden boy who had POA of medical pulled her out before treatment and against medical advice, those golden children said they did it because, it was keeping her alive by artificial means and they did not want "their mother" used by the medical system as a human guinea pig (golden children one daughter and one son) did not see it as refusing medical treatment.

I don't know how, but golden boy came off sounding like one of those religious people (who do not do blood transfusions) who do not want doctor interference... and all of us were there shaking our heads but at that time powerless to do anything about it, because of POA.

All I know is dealing with dysfunctional people isn't very easy and I hope your Mom
continues to get Good Care according to her needs.

Margeaux,

That is my gut feeling too. I talked with my brother today and he said the same thing. He said that since we have no financial urgency to sell right away, just ride it out.

Just for a laugh at myself, I let Midget go too long between grooming because her regular shop is closed as the woman broke her knee cap. I finally got in another place yesterday. Because she was matted, they shaved to down completely, even her ears. My poodle now looks like a chihuahua!! My mom is going to be so angry with me. Does anyone know, can I get extensions for my dogs ears, mom won't notice how short her cut is as long as her ears look normal?

Sharyn, a beautiful poodle won Crufts this year, Best In Show. Could you get away with claiming it's a new trend and Midget is leading the crowd..?!

Cm-I love It...she is a trend setter,LOL!

Sharyn-
Have you heard of doggie wigs? That could be the solution. LOL!

Glad~I may have to, mom may think I am her cousin today, but Midget is a whole other subject, LOL!!

Iwentanon,

Thank you so much. I realize that each and every person has their own take as to why they would not want an elder's life prolonged via artificial means. The thing is though, I'm sure there's a balance even within all of this.

That must have been terrible to watch Luise's husband suffer unnecessarily.
I think many people get carried away with their outlooks about drugs, because as the nurse from Hospice indicated.....a drug like morphine has a bad rap. Sure, probably any of these kinds of drugs do, when used for recreational purposes/misused. But they do work, for unbearable pain, too. That's why they're also called controlled substances.

Oh, and the whole DNR issue. Well, my sister and me are definitely are in agreement that mom wouldn't want to be sustained by any radical artificial means. I'm not sure what poor Luise's condition may have been, and if you're talking about the fact that say, a feeding tube would assist her in getting her strength back, or something of the sort, in essence giving her some measure of sustenance, or comfort. Even in a situation as such, I think other factors would have to be weighed in, like the rest of a person's health, before a determination should be made as classifying that as radical artificial means. Yes, and I couldn't agree more, that when there's dysfunction going on, and these are the people who either are in charge, or highly opinionated,
this makes the going tough.

Thank you so much,
I really appreciate it.

Hugs,
Much Love & Light! Margeaux

Allison-
Have you checked the website healthgrades? In Chicago, there are about 200 geriatricians listed, and they are not all there, I'm sure. Finding new doctors is very difficult, I know, been through it for myself. Your dad needs to have a geriatric assessment done to determine if he may be developing dementia. And if he is you need to get his living situation, if it is going to change, taken care of before he gets too confused. Is he paying his own bills and on time? That is one of the first signs of dementia, as well as depression. They know something is happening, but do not understand and cannot express it. And particularly in the case of some that are too proud and do not want to admit there is a problem.

You might want to look up geriatric case managers in your area. They will also do an assessment in the home, you don't have to take him anywhere. GCM's are normally social workers and may be less intimidating for your dad.

Sis and I talked at great length this morning as she literary pooped out on me and bro for lunch with mom...she had the big "D" all night, so very understandable. I told her to tell the realtor she would give them an answer the following day so she and I can discuss the issue in the morning before we both go to work. I also told her that if she really feels she has to accept an offer before talking with me, to use her best judgement, I may not be happy with it, but I will not lord it over her for the next 20 years, LOL!! We agreed on that issue.

My visit with my brother was over all good. However, he did tell me that his step daughter, my niece, will most likely not survive this cancer. The dr's have already informed her that the even if they are able to remove all the tumor, it will come back. The reason is...it has spread into her uterus and vaginal wall. The test are showing strongly that the lymph nodes in her groin area are affected. If it turns out that is the case, they may not do any type surgery. If surgery is an option, they will do a complete hysterectomy, remove the vaginal wall and she will have a colostomy bag...they will try to reattach things later but the the chances of there being enough tissue to do that is slim. In other words..she is terminal.

I can't believe my sister! It was mom's birthday yesterday. After mom was recently released from the hospital, she had my brothers and their clans over today for a birthday celebration for mother. Apparently this amounted to about 18 people.

Next weekend is her daughter's 8th month old's Baptismal. Guess where the reception is going to be? Mother's house. They've invited about 25 people to that.

I didn't go today. I'm really annoyed by this. I mean I know my sister lives there, but should she be having all these kinds of festivities in mom's home, under the current situation going on w/our mom.. But of course, here's where I have to bite my tongue.

Margeaux