Hospice. My dad was just diagnosed with stage 4 non small cell adenocarcinoma that has spread.

[Harriet Vane]

:grouphug:

[FaithManor]

I wish I knew how the "taking care of yourself" thing is supposed to work. If I can't afford to hire help, and medicare doesn't provide it, then I am kind of hosed. There are a few friends that can come occasionally, but I do not think it would amount to more than four or five hours once per week.

 

I probably would not feel so overwhelmed if my own hemoglobin was something besides a paltry 8.5 which makes me feel fuzzy and exhausted.

 

Thank you so much everyone for your information, support, and kind words. I need to see if I can sleep for a little bit.

[Tsuga]

 

 

 He is also an Air Force veteran who was profoundly injured while serving his country - jet fuel explosion that burned him on 40% of his body and was considered a miracle that he survived - but has been denied all benefits every time he has applied despite being honorably discharged. She is working on that aspect to see if there is something she can force the VA to do for him.

 

"The MVAA has since set up a 24-hour hotline, (800) MICH-VET, in partnership with Michigan's 211 network and used the website michiganveterans.com to aggregate information about everything from emergency housing resources to "veteran-friendly" colleges in Michigan."

 

Please pass this on to the social worker in case she doesn't have it.

 

This is from the following article which details a culture of denying vets in Detroit in particular, with more resources:

 

http://www.detroitnews.com/story/news/politics/2015/03/31/thousands-michigan-veterans-miss-benefits/70752468/

 

He may have a chance to get at least the medical benefits he needs. Fight for this. If you get him in, he may have access to far more (including back benefits to help pay for other things he needs such as medical costs not covered to aide in his comfort).

 

I am sorry your dad was denied. That makes me so furious.

[mamiof5]

I don't have any answers, but just wanted to let you know I am so sorry you are dealing with all this! Prayers for you and your family!

[Liz CA]

Faith,

 

My mom's hospice care involved regular visits from aides who assisted her with bathing and basic household tasks so that my dad could get out. How overwhelming though. You will need help. Please ask for it.

 

Hugs,

Jane

 

This was our experience when my aunt became ill. I don't know if hospice services vary from state to state but here they step up care if needed. Also if your father could become a danger to self or others, they will take steps to transition him into a care facility that can handle it.

I would research hospice in your area and make a phone call to a supervisor, take notes and work off a sheet of questions / concerns so you get complete and clear answers.

 

:grouphug:

[Hikin' Mama]

I am so sorry to hear this, Faith. Your family is in my prayers.

[Hikin' Mama]

I am so sorry to hear this, Faith. Your family is in my prayers.

[creekland]

Oh Faith... you have so many  :grouphug: and prayers coming from here.  I wish I were close enough to do more.  Is there a church in your area that would help out?  Some will even if you aren't members.  Otherwise, I hope the avenues being pursued come through with great help for you (and him).

 

:grouphug:  :grouphug:  :grouphug:

 

I really wish we had a limit of one serious issue per family max.  You're having way more than your share.  Way, way more.

[mumto2]

Faith :grouphug:

 

I know you live in a rural area but see what services the Commission on Aging offers. I think they are organized by county in Michigan but I can't tell if it is active in every county.

[catz]

You can very aggressively let the hospital/social workers know that no one is capable of caring for him when he gets home. In most cases you are not liable for your parents bills, medical or otherwise. Medicaid could be a very important piece of the puzzle. The VA could be too. You CAN say no to helping physically while being present emotionally. It truly sounds like it could be dangerous taking this on. Medical staff sometimes try to bully families without holding to the law.

[Katy]

Yes, hospice can give quite a bit of help, but in your case I might try and get him into an inpatient hospice, so you can visit and grieve rather than caregive.  You have enough on your plate.  I'm so sorry you're going through this.  What a blessing that you are available to help.

[JonesinIndiana]

I'm so sorry you're going thru this.

 

Just a few thoughts...

Depending on what Hospice says, you might have to have your father in a nursing home to keep him, your mom and you safe if he does become combative. Just visiting a loved one in a nursing home daily and over seeing care is a lot of work. Ask me and my 3 siblings. :(

Medicaid paperwork is a nightmare.

Look into nursing homes before you are in a position where it needs to be done YESTERDAY. Factor in location of the nursing home besides ratings on various websites. Your Father may need a locked facility eventually.

 

There are no easy answers as parents age and we, as family members, try to care for them.

 

I hope you are able to keep your dad at home and care for him as your mom wishes. Whatever decision you make I hope you have peace with it.

[texasmama]

Regarding cost, I will say that it was less expensive to have dh's grandmother in a lockdown memory care unit of a nursing home than to hire help (7 days a week overnight, plus 16 hours a week during the day) and keep her at our home.

 

What I hear in your posts are that you have no choice but to care for your parents.  I want to encourage you that you do have a choice, and that it does not make you a bad daughter to exercise it.  Fairly evaluate what you can manage.  Get outside help to do so.  (Meaning, get experienced, good advice from hospice or from a counselor in order to make this evaluation.)  I did everything I could to make things easier on myself when dh's grandmother lived with us, but it was so much harder to care for her than I had anticipated, mostly carrying the burden of her care and feeling like I was primarily responsible for her because she was unable to make her own decisions.  There have been negative impacts to me and my family.  Also, it was an opportunity for dh's family to lose their minds and be unsupportive. :confused1:   It changed extended family relationships permanently.

 

You do not sound like you are able to take on the care of two dependent elderly people at this point given your own health and family commitments.  Those come first.  As I said to the hospice nurse when I was balancing taking care of Nan with taking care of myself and my kids, "Nan is in the process of dying.  We are in the process of living."  

[FaithManor]

Thank you so much for the VA numbers!! I am going to give those to the social worker. Maybe we can shake something loose with them. He is owed about $100,000.00 in back pay from his Air Force days and has never been able to get a dime of it. That money would be such a godsend right now.

 

Creekland, I have a very few irl Christian friends who I think will help me some here and there. They are all working and raising families too so I will certainly ask for what they can do, but it is going to be limited. As for church, we just left our church and have yet to find a new one. My parents attend a church that is, well, scary at least we think so. The pastor does not believe in mental illness, dementia, or brain/physical causes for any behavior or thinking. He believes and preaches that all such things are always sin. We had to throw him out of the hospital because when he found out that the paraneoplastic syndrome had caused dad's erratic behavior, the loss of driving control, followed by the confusion in which when dad regained consciousness he wandered off from the scene into a corn field - EMS/Fire/Police searched for two hours before finding him - and then the despondency when he realized how badly injured mom was, that horrible excuse of "clergy" (don't even want to legitimately call him that) used clergy privilege to get access to dad in the ER and told him that it was nothing more than un-confessed sin, and that he'd lost his salvation and was headed to hell and there was nothing he could do about it because God had judged him for eternity for his lack of faith. He then proceeded to tell him not to listen to the neurologist or the psychiatrist because "it's all bunk to make sinners think nothing is their fault". Dad became suicidal because of these man's words and instead of being on the oncology ward was sent to the psyche ward. He has been banned from ever coming near my parents again.

 

I do have friends from the Lutheran school where I used to be a faculty member, and they do not believe this kind of cuckoo stuff at all. I think I will call them and see if someone could maybe give me a couple of hours of rest per week. If I could get three or four people to just give me two hours at a time, it would give me some breaks that I could count on having.

 

I just got a phone call from the hospital. Mom is being discharged tomorrow. So we get dad settled tonight, and then I go get her around noon tomorrow.

 

I have no appetite and a hemoglobin count that is abysmal. I probably need some sort of phone app with an alarm that screams "Eat now! Eat!"

 

The hardest thing is that my sister does need to come home from France to say goodbye to dad. But, of course these kinds of things are so hard to predict, and she has that horrible auto-immune thing. She is sick right now...so sick that he doctor is making house calls (this is apparently common in France which makes me want to move there!!!!), but is so afraid he will die before she gets well enough to come home. I am hoping for a much clearer picture next week when he sees the new oncologist. I am feeling really selfish right now because I find myself wanting to hear the words "six months or less" because I know that the cancer is not only incurable, but virtually untreatable so everything that is done is palliative anyway. I don't want him to suffer for a long period of time. Really. I don't need more time in order to be at peace. I'd rather he go quickly and be spared a long, drawn out, painful death. And then too, I'd like to have hospice to help me as soon as possible which makes me feel extra selfish.

 

GAH! I'm rambling! I need to stop whining. This isn't going to make the situation change.

[MBM]

I'm so sorry, Faith. What a tough situation. I hope everything goes your way in finding the right care for your parents. You've had enough this past year.

 

Take care of yourself.

 

:grouphug:

[Lady Florida.]

I have no experience so I can't give you advice. Just wanted to offer hugs.  :grouphug:

[ScoutTN]

:grouphug:  :grouphug:  :grouphug:  :grouphug:

 

I am so sorry. Praying for you and all your family.

 

[Kim in Appalachia]

crap, I'm so sorry.  That's really awful.  :grouphug:

 

You must get hospice care.  It doesn't even seem that home hospice will be enough.   :grouphug: I hope you are able to get some help quickly.  

[PrincessMommy]

Ramble away if you need to.  I have tried to read most of the  replies, but probably skimmed, so if I'm repeating what others have advised I'm sorry.

 

Sounds like both parents need care. Talk with social services at the hospital and explain about your father's recent diagnosis and that you cannot do any physical work, and that you've got a full-time job (educating your children).  Insurance and/or medicare/caid might step in to provide in-home care for your mom - or send her to a rehab center until she is able to care for herself.   Then call hospice and ask the social workers there what kind of help they can provide.  Explain the whole situation about both parents.  They may know of some avenues. 

 

Every hospice is different but most offer some level of help and care for the patient and their families.

 

This is so much for one person.  Many hugs and prayers for you. :grouphug:

[brehon]

Faith, honey, I'm so very sorry. This is so incredibly difficult. Let me echo and strongly reiterate other posters who are saying that you really should tell the social worker in the stringest possible terms that you will NOT be able to care for your parents at home - yours OR theirs. Especially your dad. Please don't underestimate how difficult and potentially dangerous it could be to you and your mom to have him at home.

 

If you don't take care of yourself - meaning put your health first - you will collapse. That won't help anyone - you, your dh, your kids, or your parents. Push the social worker to do whatever needs to be done to get your father into residential hospice.

 

I wish I were closer to help you.

[Joules]

My parents are going bankrupt due to this. So hiring people to help is not an option since dh and I would have to pay for it, and we are paying for some classes for dd before she and her hubby welcome their first child, and we just paid part of eldest boys'college tuition. But while I was talking, a couple of friends called to ask if they could give us three hours off on Sunday. That was very nice of them, and I think I had better take them up on their generous offer.

 

[ETA: Should have read the whole thread first...Do check this program, too.] Do either of your parents have any military background?   There is a program called Aid and Attendance that helps with hospice type care.  It's separate from the VA and some people qualify for it that don't qualify for VA benefits.  My dad was reserve and was only called up for service state-side for three months, but because that three months was in war time, he will qualify.  Spouses also get the benefit.

 

My mom was in home hospice here the last few months of her life.  Hospice was wonderful, but I should have asked for more.  I constantly told people I was doing fine.  I should have asked for more help from friends, and I should have asked for more and more frequent visits from hospice (they probably would have found a way to get them approved.)  

 

My advice: Ask for help and take every bit that is offered.  You'll be in my thoughts; I know how hard it is.

[FaithManor]

Faith, honey, I'm so very sorry. This is so incredibly difficult. Let me echo and strongly reiterate other posters who are saying that you really should tell the social worker in the stringest possible terms that you will NOT be able to care for your parents at home - yours OR theirs. Especially your dad. Please don't underestimate how difficult and potentially dangerous it could be to you and your mom to have him at home.

 

If you don't take care of yourself - meaning put your health first - you will collapse. That won't help anyone - you, your dh, your kids, or your parents. Push the social worker to do whatever needs to be done to get your father into residential hospice.

 

I wish I were closer to help you.

Thank you, Brehon! I really appreciate it. I am going to talk to my brother. He was told this morning, under no uncertain terms by the psychiatrist, that if we don't take him home and care for him, she will turn us both in to the state for elder abuse/neglect. Can she do that? Is there a law that says relatives must provide nursing care? I am not trying to shirk my moral responsibility at all, but I really worry about safety with him because I am not convinced that he is mentally stable at this point, and we have been given no idea if the paraneoplastic syndrome is a one time thing or if it could happen again.

 

I guess my only saving grace at this point is he is currently weak as a cotton ball. Then again, I know you have said that during hallucinations patients can become very strong, and my daughter, also a medic, said the adrenaline rush could make him temporarily startlingly powerful as she has witnessed and dealt with this too. The last time it happened on a call, she said it took two police officers, a fireman, and her EMT to hold the person down while she injected meds, and then a wrestling match to get the patient on a gurney and into restraints. That scares me. But maybe Michigan can force us to take care of him. It wouldn't surprise me. Most of the laws these days do not seem to favor the safety of victims and family in most situations. It is also very hard for me to think of my dad as a threat to my personal safety or mom's for that matter. It is just an emotionally raw place to go mentally, and it's not his fault.

 

Cancer. Damn Cancer. I hate it.

[prairiewindmomma]

Order some floradix and get some pumpkin seeds and orange juice to snack on. Your hemoglobin issue is likely the easiest to fix right now.

 

(((Hugs)))

[AimeeM]

I am so sorry. My FIL's home health agency (which medicare paid for almost entirely) offered home-hospice if he decided to go without treatment (at 84, he decided to forego even further diagnostics, even though certain labs indicated some DXs were almost definite). 

 

[itsheresomewhere]

Thank you, Brehon! I really appreciate it. I am going to talk to my brother. He was told this morning, under no uncertain terms by the psychiatrist, that if we don't take him home and care for him, she will turn us both in to the state for elder abuse/neglect. Can she do that? Is there a law that says relatives must provide nursing care? I am not trying to shirk my moral responsibility at all, but I really worry about safety with him because I am not convinced that he is mentally stable at this point, and we have been given no idea if the paraneoplastic syndrome is a one time thing or if it could happen again.

 

I guess my only saving grace at this point is he is currently weak as a cotton ball. Then again, I know you have said that during hallucinations patients can become very strong, and my daughter, also a medic, said the adrenaline rush could make him temporarily startlingly powerful as she has witnessed and dealt with this too. The last time it happened on a call, she said it took two police officers, a fireman, and her EMT to hold the person down while she injected meds, and then a wrestling match to get the patient on a gurney and into restraints. That scares me. But maybe Michigan can force us to take care of him. It wouldn't surprise me. Most of the laws these days do not seem to favor the safety of victims and family in most situations. It is also very hard for me to think of my dad as a threat to my personal safety or mom's for that matter. It is just an emotionally raw place to go mentally, and it's not his fault.

 

Cancer. Damn Cancer. I hate it.

Research that "law". I don't know of any currently in the States. She may be doing a scare tactic to avoid more paperwork or just clueless. I have known a few who tried this tactic and were called on it.

 

As for the VA- get to calling your congressman everyday. A very good friend who is taking care of her dad has been doing this and magically the VA have them help when they had been denied.

[J-rap]

I'm so sorry your family is going through all of that!  Do you or your parents have a church family that could send someone over from time to time in an afternoon?  In our community, we have an agency which is staffed by volunteers who go to homes and give caregivers a break.  Also, Meals on Wheels or something like that is a great idea.

 

My youngest two were in 10th and 11th grades when we went through our family upheaval, which really lasted the entire year.  We changed things around a bit since I was not able to be very involved in their studies that year.  For example, our science had to consist of online labs (which we could often find on YouTube);  both girls signed up for two classes online (I wonder if it's still early enough in the school year for you to do that?);  I had them check and correct their own math homework from the answer book every day, so I only had to step in and help them when they got one wrong);  for history, I simply had them write up a summary + two especially interesting things they learned from their reading, daily.  And, we watched a ton of historical documentaries based on what they were reading.  We did that together as a family nearly every night, and it turned out to be a highlight in the day for our family -- always an interesting distraction.  My 11th grade daughter ended up doing most of the dinner-cooking that year, but she loved cooking so it worked out well.  Perhaps your two can make dinner together once or twice/week?  It's nice that your two kids have each other.

 

My FIL had in-home hospice care, but he also had a lot of children who could step in and help and who all lived in the area.  If your mother is not even mobile, I'm not sure how you can handle everything!  Would your parents move in with you?  I'm sure hospice groups have suggestions and can help you think this all through.  They probably have ideas that you haven't even thought of yet.

 

Take care and best wishes to all of you!

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[FaithManor]

J-Rap, I'd love to adjust their studies. Really. But P is a senior, and we can't adjust much of anything as he is involved in some scholarship competitions and such that require he continue with his current path which includes DE calculus 1, rocket team participation and 4-H, finishing the project that a professor at MTU is mentoring him through, etc. If I change this stuff to make it easier on me, I very, very negatively impact his future. I could probably definitely adjust some things for the sophomore since we would have two more years to get our ducks in a row once dad passes. I may change him from chemistry - which I intensively teach - to conceptual, algebra based physics which he will not need my help with at all. English is a huge weak spot, but I figure that I can teach that down at mom and dad's house while they are napping or something. Literature discussions are going to be a toughy. Dad just talks a lot of nonsense and is easily upset so I could see how listening to us discuss Shakespeare or Poe could be a real problem and set him off. Maybe dh could take that over in the evenings, or come spell me so I could come home and have these discussions with the boys away from dad.

 

The hardest thing of all, and I know this is going to sound weird, is that I have always been "rocket mom" to these teens on the rocket team, a role I have cherished for five years. This is the last year we are going to participate in TARC, and I have to give the team over to dh and another mother who has agreed to become an official 4-H volunteer so she can take over transportation and scheduling. I am really grieving over it...crying while I type. This is the last year for my boys in this very meaningful competition, and I am going to miss it. Crazy, I know...in the grand scheme of things. But I can't help it.

[texasmama]

No one is obligated to care for an elderly parent or face neglect charges. The hospital must make a discharge plan. Ask to speak to the hospital social worker, explain your situation and they should help you find a facility for your father while a long term plan can be made. Don't be bullied into taking on more than you can. They will not discharge your father into the street.

[Mom25girls]

I'm so sorry.  :grouphug:

[bluemongoose]

:grouphug:  :grouphug:

[stephanier.1765]

I am so sorry.  :grouphug:

[Anne]

Quote from Texasmama:   No one is obligated to care for an elderly parent or face neglect charges. The hospital must make a discharge plan. Ask to speak to the hospital social worker, explain your situation and they should help you find a facility for your father while a long term plan can be made. Don't be bullied into taking on more than you can. They will not discharge your father into the street. 

 

 

THIS EXACTLY!!!!

 

Praying for you, Faith!!!

 

Anne

[MooCow]

No one is obligated to care for an elderly parent or face neglect charges. The hospital must make a discharge plan. Ask to speak to the hospital social worker, explain your situation and they should help you find a facility for your father while a long term plan can be made. Don't be bullied into taking on more than you can. They will not discharge your father into the street.

Yes, this. I learned very quickly not to buy into the hospital bs. I would just repeat I can't take care of her over and over again. They can not force you to take your parent.

 

Also, do not sign anything. Even when my mom was really sick and out of it, I never did. She made me promise that.

 

Praying for you all.

[FaithManor]

Yes, this. I learned very quickly not to buy into the hospital bs. I would just repeat I can't take care of her over and over again. They can not force you to take your parent.

 

Also, do not sign anything. Even when my mom was really sick and out of it, I never did. She made me promise that.

 

Praying for you all.

Oooo good advice. I never thought about that, but I could just see some billing person or social worker trying to slip me paperwork that makes me legally responsible for something. I can't put my family in that kind of jeopardy. Don't sign anything. Gotcha! Thanks.

[trulycrabby]

I am so sorry. :grouphug:

[Wildcat]

Oooo good advice. I never thought about that, but I could just see some billing person or social worker trying to slip me paperwork that makes me legally responsible for something. I can't put my family in that kind of jeopardy. Don't sign anything. Gotcha! Thanks.

 

I am so sorry to hear about your dad. You have so much going on. I wish I could help. :grouphug: :grouphug:

 

Regarding the hospital forcing you to take your dad home, I remember reading something a few years ago (not here-- it might have been an article about elder care) that said hospitals want to move people out so they have available beds for others and they will try everything to discharge a patient who basically just needs hospice-type care. Also, that way, the patient is no longer their responsibility. It was something about the patient not being able to recover and the hospital not being 'needed' anymore so they wanted to move the patient out. It shocked me to the point that it stayed with me.

 

The not signing anything is great advice (and a bit that I'm filing away for the future). I'll take that a step farther, though, and tell you to make d@mn sure they don't manage to corner your mom and have her sign something saying she'll accept responsibility for him. If she goes to visit him with you or if a worker comes to the house, don't leave her alone for a second, just in case.

 

I sure hope you get help through the VA. I am beyond angry on your dad's behalf that he is being treated like this. Not that you need any more stress, but would an attorney be of help there? Especially with the back pay. Oy! 

 

Come here to vent, whine, and gripe. It will be better for your health.

 

Some more hugs because that's all I can do for you. :grouphug: :grouphug: :grouphug:

[Jane in NC]

J-Rap, I'd love to adjust their studies. Really. But P is a senior, and we can't adjust much of anything as he is involved in some scholarship competitions and such that require he continue with his current path which includes DE calculus 1, rocket team participation and 4-H, finishing the project that a professor at MTU is mentoring him through, etc. If I change this stuff to make it easier on me, I very, very negatively impact his future. I could probably definitely adjust some things for the sophomore since we would have two more years to get our ducks in a row once dad passes. I may change him from chemistry - which I intensively teach - to conceptual, algebra based physics which he will not need my help with at all. English is a huge weak spot, but I figure that I can teach that down at mom and dad's house while they are napping or something. Literature discussions are going to be a toughy. Dad just talks a lot of nonsense and is easily upset so I could see how listening to us discuss Shakespeare or Poe could be a real problem and set him off. Maybe dh could take that over in the evenings, or come spell me so I could come home and have these discussions with the boys away from dad.

 

Faith dear,

 

I have never gotten rid of the Conceptual Physics set (text, teacher's book, lab manual, multiple choice tests).  Apparently I was saving it for you.  Send me a PM if you want it for your Rocket Boy.

[MooCow]

Oops double post

[Reefgazer]

I'm so sorry for your dad's diagnosis..  A relative of mine recently entered a nursing home because he was housebound and using a wheelchair for knee pain (94 years old), and because hallucinations caused him to physically lash out at his 89 pound wife (he is 200+ pounds) and everyone was afraid for her safety.  At the nursing home, they weaned him from *all* meds.  He has not had a hallucination since.  Check his meds first of all.  Hopefully, that will lead you in a direction that is more manageable.  Sorry I can't write more now, but best of luck....it's so difficult and complicated. 

He also had an immune reaction - long word I can not spell - that involved his body reacting wildly to the cancer and attacking the healthy cells in his brain causing him to halluconate, become delusional,and was labeled altered mental status.

He sees another oncologist next week but given how weak he is, I do not think they will attempt any treatment.

My mom, currently needing my full time care because she is non weight bearing until November due to the ankle injuries from the car accident expects me to care for him as well so he does not have to go to a nursing home. I feel entirely overwhelmed. My dh is working 70 hours per week as.his project deadlines loom in November, my brother is working similar hours, his wife works full time too, and my sister lives in France and has an autoimmune disorder and is sick again. I have very few options for assistance, and since our local ps does not accept high school credits from home schoolers, I must continue educating my senior and sophomore or it will very negatively impact them.

How much help does hospice give in home? Can I get respite care, help with bathing, meds, any meals? I am really upset about trying to care for both of them and very concerned about handling him when he is hallucinating. If he gets wild again and hurts mom, I don't know what I will do.

 

[Innisfree]

I am so sorry for what you are facing, and like others I am outraged that the VA has not been more helpful and that you were pressured to assume your father's care by the psychiatrist.

 

Last year I went through variations on this scenario with my parents. Delusions or hallucinations can be incredibly hard to deal with, and I would not attempt to manage that in my home. The emotional exhaustion of terminal illness is enough, more than enough, without trying to live full-time with someone you love who is experiencing delusions.

 

My mother thought, at one point, that she was several stories underground in a building that was about to collapse. She sometimes thought she was being held prisoner. She was sometimes physically aggressive.

 

The pain and anguish you are facing is hard enough. Trying to manage delusions yourself is too much, I think, for almost anyone. They can be emotionally overwhelming to witness as well as physically dangerous.

 

At a nursing home or hospital caregivers can go home at the end of their shift. They can be better caregivers because they have time off. Trying to cope at home means you have no time off. It also means your whole family is subjected to the constant emotional strain.

 

I hope someone, maybe the hospital social workers, can help you get your father the care he needs. (((((((((Hugs))))))))

[Anne in CA]

I have no advice, I just wanted to say that I am very deeply sorry.

[katilac]

Thank you, Brehon! I really appreciate it. I am going to talk to my brother. He was told this morning, under no uncertain terms by the psychiatrist, that if we don't take him home and care for him, she will turn us both in to the state for elder abuse/neglect. Can she do that? Is there a law that says relatives must provide nursing care? I 

 

You need to call the hospital ombudsman right away and document! This will likely lead to a meeting with this person to clarify, or simply documentation in writing that he did not say or mean that (whether he actually did or not). 

 

I would approach it as - we are very concerned, I think he may have misunderstood, we need help and clarity. 

[brehon]

Thank you, Brehon! I really appreciate it. I am going to talk to my brother. He was told this morning, under no uncertain terms by the psychiatrist, that if we don't take him home and care for him, she will turn us both in to the state for elder abuse/neglect. Can she do that? Is there a law that says relatives must provide nursing care? I am not trying to shirk my moral responsibility at all, but I really worry about safety with him because I am not convinced that he is mentally stable at this point, and we have been given no idea if the paraneoplastic syndrome is a one time thing or if it could happen again.

 

I would first of all get all my legal ducks in a row. POAs, MPOAs, etc. I would consult an elder attorney and check the hospital psychiatrist's understanding of the law. These things are very state specific and you are correct that state law tends to favor mental competence over anything else. I would NOT rely on the hospital's interpretation of relevant state statutes because they have a vested interest in turfing your father out to someone else's care. Medicare payment systems are really screwed up and they probably won't get paid to keep him in the hospital beyond the point that he's been "cleared" to discharge. If he isn't on any medications to help stabilize his mental condition, I have no doubt that it will occur again. Don't let the hospital frighten you into accepting care of your father. You cannot do it. And Wildcat is correct, too. Your mom may be intentionally frightened into signing papers which will release your father into her care...and out of the hospital's. I actually would be very surprised if the hospital could force you to accept care of your father. Hospitals must have a discharge plan that someone (the patient or the pt's representative) signs off. Don't sign anything that doesn't have your dad going into residential hospice. 

 

 

I guess my only saving grace at this point is he is currently weak as a cotton ball. Then again, I know you have said that during hallucinations patients can become very strong, and my daughter, also a medic, said the adrenaline rush could make him temporarily startlingly powerful as she has witnessed and dealt with this too. The last time it happened on a call, she said it took two police officers, a fireman, and her EMT to hold the person down while she injected meds, and then a wrestling match to get the patient on a gurney and into restraints. That scares me. But maybe Michigan can force us to take care of him. It wouldn't surprise me. Most of the laws these days do not seem to favor the safety of victims and family in most situations. It is also very hard for me to think of my dad as a threat to my personal safety or mom's for that matter. It is just an emotionally raw place to go mentally, and it's not his fault.

 

​Those who have not dealt with people having hallucinations, paranoia, delusions, etc have no idea how strong these people can be regardless of their "normal" strength. Your dd's experiences completely track with my experiences. Your mother being temporarily disabled is also a very strong factor in seeking residential hospice care for your father. Frankly, I'd also look into in-house rehabilitation care for your mother; but, I recognize that might be difficult to arrange, though Medicare does pay for at least some of that. Work on getting whatever paperwork is necessary to have your father directly admitted into residential hospice care. It will be much easier in the long run. If that doesn't happen, work with elder care specialists to have your dad admitted from in-home hospice to residential hospice ASAP. Your dad's mental condition sounds very unstable and, especially because your mom is disabled, he is a physical threat to her AND any caregivers right now. 

 

 

Cancer. Damn Cancer. I hate it.

I know the above is hard to deal with. My maternal grandmother - the sweetest, most genteel lady one could ever hope to meet - became physically abusive toward my grandfather because of her dementia. It was incredibly hard for my mom to handle. Please stand strong for your parents. Don't sign anything without either taking the time to fully read and understand it or (and this is the best bet) running it by an attorney. I know attorneys cost money; not having one in this most crucial time could cost you and your family so much more financially, emotionally, and physically. 

 

((((FaithManor))))

[HRAAB]

I'm so sorry to hear this, Faith. You're in my thoughts.

[JoJosMom]

You need to call the hospital ombudsman right away and document! This will likely lead to a meeting with this person to clarify, or simply documentation in writing that he did not say or mean that (whether he actually did or not). 

 

I would approach it as - we are very concerned, I think he may have misunderstood, we need help and clarity. 

 

I agree with the above WRT to the threatening psychiatrist.  Although personally my goal would be to file a complaint for the threatening behavior. 

 

:grouphug: :grouphug: :grouphug:

[idnib]

I probably would not feel so overwhelmed if my own hemoglobin was something besides a paltry 8.5 which makes me feel fuzzy and exhausted.

 

Often when it gets that low the doctor can order a blood transfusion for you. Try checking.

 

Order some floradix and get some pumpkin seeds and orange juice to snack on. Your hemoglobin issue is likely the easiest to fix right now.

 

(((Hugs)))

 

It depends on the reason for low hemoglobin. For example, people with thalassemia trait shouldn't take supplemental iron.

 

As for the VA- get to calling your congressman everyday. A very good friend who is taking care of her dad has been doing this and magically the VA have them help when they had been denied.

 

Yes, call the congressman everyday and make them help with the VA situation.

 

:grouphug:  :grouphug:  :grouphug:

[lauraw4321]

I have read/skimmed this post, and here are my many thoughts:

 

1) Do you have power of attorney for either of your parents?  Do you have access to their financial information?  They should be paying for services.  If you have POA, you do have an increased duty of care for him, so that would alter my response below:

 

2) I would contact an attorney (I'm not kidding) who specializes in elder care, explain your situation, especially how you were threatened, to make sure you fully understand your legal responsibilities.  I'm a non-practicing lawyer in Alabama, so I can't speak to  Michigan laws, but it does sound to me like a threat.  It would be elder abuse if you take him home and do not care for him.  However, it is not elder abuse to refuse to take him home.  That's my gut reaction, but YMMV, based upon the law in your state.

 

3)  You can tell the hospital, point blank, I CANNOT CARE FOR HIM.  When they ask about whether he will have a safe environment, say no.  When they ask whether he will have someone to watch him 24/7, say no.  Explain your mother's health. 

 

4)  Regarding hospice:  They will pay for medical supplies (medications, oxygen, hospital bed) and even non-medical supplies (adult diapers), but they will only come by maybe 2-3 times a week.  Everything else will fall on you if you do not have help.  Home health for someone with your father's level of service would run you (in Alabama) $18/hour, minimum.  

 

5)  Ask to speak to your father's social worker - they sometimes have a surprising amount of power.

 

6)  I'm so sorry you are going through this, and I will pray for you and your family.  

[Greta]

Oh, Faith, I am so sorry. I have no wisdom to offer (I'm glad others are taking care of that) but just wanted you to know that you are in my thoughts. :grouphug:

[VANURSEPRAC]

If your father has Medicare it will pay for 100% of Hospice and no cost to the family.

 

 I am praying for you and your family. I do believe Hospice is the way to go and Haldol can help with your father's mental status changes. Also if the lung CA has spread to his brain. Palliative radiation can help greatly also.

 

My heart is breaking right now for you!!!!

 

Hugs!!!!