What exactly are we caregivers supposed to do when we can?t manage a situation any longer and have to virtually stand on our heads and spit nickels to get any help at all in the community.
I used to post several years ago and 2 weeks ago was ready to turn to you folks for help with obsessive compulsive symptoms in my daughter that have been escalating over the past 6 months. It started out as pepper being on her things, then it was this and that, then salt from a short weekend stay at the shore. Everything has to be cleaned, cleaned, cleaned, steamed, scrubbed, washed, including pocketbook and wallet and sneakers. Bed is stripped completely. Brand new storage containers are cleaned. She smoked a cigarette in the vicinity of the garage and thought that oil and gasoline was all over her. She stripped, showered then proceeded to say she could not sleep in her bed because she would contaminate it and she had just stripped it earlier that day. She was up that entire night. I called the crisis hotline at our hospital, crisis workers came to the home and agreed she needed go to the ER. Also, according to the local HD clinic she was having a psychotic episode and I should bring her to the ER.

We are then faced with stonewalling by the ER Psych Dr, she does not meet the criteria to be admitted, she does not meet the criteria for just about any kind of ongoing care, and who, after speaking with my daughter, told her that the psych unit was not there to treat allergies. Can you believe it? Also, there might be a problem with the insurance and we might get a bill if they would not cover it.
I finally get her admitted when I refused to bring her home. Once admitted they let her sign a 3-day release form and don?t tell us, we don?t get our calls returned by her doctor, then I get phone call from the social worker saying the pHD is now stable, she is able to take care of herself and is being released the next day. What time will you pick her up? Zero discussion with the family about why she was brought there in the first place.

While this was going on, I brought my other daughter to the clinic for a regular visit, and her ongoing verbal abuse of me in the car just put me over the edge. I had a mini breakdown, told the clinic I could not bring her home, that I needed help. Well, I brought her home, because the alternative was a shelter. They could not admit her to their psych unit because, blah, blah, blah. No respite care. Nothing. They did however manage to get her to agree to stop the verbal abuse so that was something.

I told the hospital social worker I was not going to pick up my daughter because she had no place to go. That even if she was stable now she needed to be monitored for a week or two. The family she was living with could not manage the symptoms and her sister already lives with me and my husband, and there are no other family members able to take her. She is in the middle of a divorce, her husband and home environment are completely unstable for a pHD. Again, more stonewalling, they are not a housing service, blah, blah, blah. I said again I was not picking her up. 2 minutes later, the doctor who had never returned my calls, called me to reiterate what the social worker had just said. I asked why he had not returned my calls. His answer was ?I don?t work enough hours at the hospital to meet with you.? Direct quote! Can you believe that. I finally said she has no place to go. He then replied ?Yes she has.? I said ?Where?? His reply ?The shelter.? Again direct quote.
The final outcome was that my daughter made the decision to go back to her marital home until the divorce becomes final. This was all done with the help of the social worker without consulting our family. A very bad choice. But according to the experts at hospital she is able to make her own decisions. Again, they stated it is almost impossible to get a judge to declare a person incompetent.
I was simply looking for short term respite for her until her meds could be monitored over a period longer than a few days.
Oh, and the local mental health organization told the social worker that HD did not meet their criteria for treatment under their umbrella. Her immediate situation was not chronic.
It seems that the word criteria must be a part and parcel of every health workers final exam.
There is so much more to these events but these are just the bare bones.
About 4 years ago I wrote a letter to Charles Dimmler, then Chairman of the Board at HDSA about care facilities for HD. It was an excellent letter and I fully expected to get a reply. I remember Fred saying Good Luck with that. He was right, I never heard a word, although Marsha mentioned to me that she thought he had passed the letter to Barbara Boyle. Anyway, the status quo is still the same. America might be made for you and for me, but it is not made for the person who has Huntington?s Disease.

Why is Huntington?s Disease discriminated against in this way? Why are there placements for rehab for just about any other type of disease or illness (substance abuse, broken bones, you name it) but not for HD. It?s an outrage. HDSA should put together a mass mailing to all hospitals and insurance providers, and provision should be included for the care of pHDs. Why does HD not meet the criteria for mental health care?

But you know what, I meet the criteria for caregivers. I am going to fight for the rights of my girls. I am not giving up.

Aud

bless you aud.

many social workers dont even know what hd is or how it might apply to their criteria.

i am a mental health nurse and i nearly had a full blown argument with a colleague friend of mine who refused to section someone with hd, as she believed it was a physical illness and the thought that she was depressed was "normal within the context of having such an illness".

She was gassing on about hd being a physical illness and her own personal hatred of "the medical model" and how "terrible" the hd services were for trying to get this poor woman who CHOSE to live in her own excriment sectioned.

i told her she was wrong, it wasnt just a physical illness and the hd services had asked for this woman to be sectioned for a reason, as had the persons nearest relative!!! but these are the ill informed people in england who make the decision that people may or may not be compulory detained!!

We argued because she maintained her stance: asked me how many hd patient i had come across.

i chose not to tell her: several actually. Thats not counting my father in law, (deceased hd) husband (at the time 50% at risk) and 3 at risk kids.

its frighteningly scary and very very wrong.

apparently their role is to "protect the rights and freedom" of these people from abuse of the mental health act (in england), when in fact, their actions prevent access to healthcare for those who are unable to access it and ultimately increase risk and segregate the hd community as the forgotten minority.

i feel there needs to be a legal responsibility to consider hd individually within mental health legislation and the LACK of use of such acts in relation to HD: due to LACK OF PROFESSIONAL KNOWLEDGE should have clear consequences for considerations of CLINICAL NEGLECT.

Terms such as "we are not a housing project" ect are usually reserved for the actue inpatient services who are dealing with the homeless persons without serious problems.

i think its appauling that noone is taking any long term responsibility for addressing your problem; the short term acute psychiatric services will just look at moving your daughter on when they have contained any immediate risk

you are right, rehab, treatment and long term provision needs identifying.

i feel so very much for you and i am disgusted and appauled for you.

Shame on those people saying this to you. Whatever thier service provision and inadequacies, you have a right to be treated with dignity and respect.

their service is failing in that respect.

THey are failing themselves, perhaps not in what they are legally provided to provide, but in their ethical commitment to treat patients with dignity.

When it occurs again, emphasise risk to self and others at all times: i know it sounds terrible, but this is what they are looking for. they wont detain and will allow people to go if there is not a perceived risk element.

i can only send you my wishes and say i am thinking of you and feel so angry for you.

im sorry i dont know much about american healthcare, i hope someone can advise you. x x

i dont know how it is in america, but in england, there is such specialist services for "minority groups"; howevver, this is NOTHING TO DO WITH ILLNESS

Its all to do with ethnicity or meeting the needs of ethnic minority groups.

there is specific funding, jobs and services for these "disadvantaged" groups.

perhaps the hd community need to be recognised as at least equally discriminated against and excluded from/denied access to services as these groups??????????????????????????????????

Or is that too much to ask??????????

HD is not, apparently part of PC????!!!!

Welcome back, Aud. I have thinking about how and wondering how you were doing.

Phds are left out of services all the time, in every state. We try to access services for brain damaged and are denied because it's a psychiatric disease. We're told to try the mental health department but the mental health department says they it's an organic disease, they can't help, try to get services for the brain damaged. We get sent everywhere and no one helps. HD families are spinning like rotisserie chickens.

This is because there is nothing rationale about how medical and social services are put together, it's all piecemeal. Certain diseases or problems are dealt with because 1) a powerful legislator has the problem in his own family or 2) people get together and raise holy hell and keep at it.

If you deny services for a child with Down's Syndrome for example in my state, organizations will come down on the state like a ton of bricks. Deny services to a child with JHD and even the legal organization with a federal contract to handle appeals doesn't show up because they are too busy. (true story).

It's very hard for people who are caregivers to multiple family memvbers to take the time to go to the media and lobby the legislators. There IS no time. Those of us who having a break in caregiving need to recharge our batteries. But if we don't do it, no one will do this for us.

I believe it's a new day at the HDSA. Email Louise Vetter, the new CEO, Aud. I promise she'll read it. But she's going to need our help to change things.



Edited 1 time(s). Last edit at 06/25/2009 03:29PM by Marsha.

That is terrible times three or four. I sort of lost count. I am not sure what psych wards are for anymore. The amount of beds is way too low and they want people in and out of there. A requirement in the psych ward here is the person be able to do laundry, shower and toilet themselves.. I had a fight on that one later on. Doesn't seem to be a requirement for anyone else in the hospital. I too had insurance trouble on that front. Once we went the medicaid route we didn't. I argued and won on the fact that the underlieing cause is a physical illness with a psychological component.. they weren't treating psychiatric illness but a neurological one that is well documented with these issues. The insurance company doctor did agree and my appeal and was accepted. I did start by asking if he really wanted to speak to me or the lawyer I have under retainer specifically for HD problems I encounter. (That was a lie) But there is no easy route when you need an emergency hospitalization. Even when you get them in.. they don't know what to do. The first time with my wife she came out on high dose Haldol which did knock out the psychosis.. and about everything else too.

There may be in your state such a thing as temporary guardianship. There is here. Of course that is costly.. but then she can't sign herself out of places in emergency situations. I got temporary guardianship until I could complete full guardianship. It's much easier to get. I am almost thinking that finding a lawyer to retain for HD issues is a good idea. Problem with hospital.. lawyer calls.. trouble with insurance..lawyer calls. At least that way you know how much someone really doesn't want to deal with HD. I bet policies they quote half the time aren't policies at all or have legal ambiguity. It would be interesting to see how willing they would be to dump someone in a shelter with a mental incapacity with regards to their sureness that they treated the patient well, And they are competent and now able to function in society..and that no harm will come to the patient based on their treatment of the issue that brought them there in the first place. Bet a lawyer calling would make them think twice anyway. Then they aren't dealing with crazy mom or husband or whomever the caregiver is, but someone who can bite back a little bit. Trouble with that is $$$$$. As always for most HD families.

I am sorry I don't have more than empathy. The clinic should have been on the phone to the hospital. Other than a personal lawyer, and our own big mouth, our personal doctors are our only advocates in individual circumstances. If they don't step up we are kinda screwed. I will say I was lucky on that front.

Look, there isn't much you can do for her until she becomes physically disabled. Simple as that.

Eric is dead on. In the past 30 years psych care has been reduced to nill in the west. Unless you have millions and can afford a spa setting, or your daughter is wielding a gun to her head, the facility just doesn't exist.

You cannot simply say that someone is crazy and have them hosipitalized. If we could do that, we could put good people away who were simply "eccentric", and take over their assets. Happened all the time, still does to some extent where there is a LOT of money involved (ie Britney Spears).

In the case of the suicidial tendencies, they will only keep her for a couple of days until the meds kick in, and they call you to pick her up. In the case of her wanting to be clean, she's just "eccentric". She's not crazy, just highly neurotic.

The government won't help you. They can't help you. They don't have a clue as to how to help you. Anybody that thinks the goverment is a cure is at best misguided. [www.realclearpolitics.com] Besides they have very limited resources and civil servants are not the highest on the educational food train if you know what I mean.

The private sector won't help you unless you can pay for 3 full time stafters for the entire stay at full price. If you don't have any cash to feed a lawyer, you have no leverage. You have to have 2 lawyers and two doctors and about 2 months to get a legal motion if at all. She is still somewhat lucid, so again, "good luck with that".

You can't get any help from the healthcare industry either. Simply stating it, there isn't much they can do. This is how your daughter is reacting to the disease. They don't have a hospital to suit her specialize needs.

I tried in vain to find a solution. I finally did, but I had to wait until my wife's physical conditon started to decline. At that point, I could and did take her to the hospital. At first, they did the same thing you experienced. They decided she was okay to make a decision, and they let her decide when to come home. They called me to pick me up, and told me it would cost me $1500 a day for the time she stayed, and there was nothing further their doctors could do.

Why? Because there isn't. All they did in the early days was dope her up with so many meds I had to have a schedule for the 3-hour dosings.

When she started to decline to the point she had trouble eating and couldn't wash herself, I was her only caregiver. After that, I had some hope of getting her into a care setting.

I'd arrange to have the neuro admit her to the hospital. She would stay and the neuro would put her into the NH for "phycial therapy". I'd get 2-3 weeks of respite.

Once she started to meet that "criteria" you mentioned, I could put her in for a while. Then I started having trouble with the NH's because they were ill suited to dealing with a younger patient with violent tendencies and verbal abuse. They were more suited for geriatric care.

It took a while, 5 NH's, 3 trips to the state mental institution, and 2 years I finally found an NH (from the mental hospital) that could deal with patients with HD.

That was the only way I found to solve the problem.



Edited 1 time(s). Last edit at 07/01/2009 11:26AM by Fred.

I encountered the same problems with my daughter dealing with the system in Georgia. I was told that it was a physical illness and that the mental health system could not help. The hospitals claimed it was psychological and limited their intervention to three day stays at best when they didn't outright refuse her. I lobbied all the "big shot caring politicians" who if they did respond gave their sympathies and nothing else. I fought so intensely that I heard directly from the governor who admitted that the state could not afford to help my daughter. Realizing that two lives were at stake (hers and mine) I turned to Jim Pollard and Sarah Miller from Laurel Lake for help. I soon learned that New York was just about the only state that might help. Having just bought my home in Georgia (moved there from RI to be near relatives) and investing $40,000 into home improvements, the choices were not good. I quickly sold my home at a $36K loss and bought a home in New York. Money aside, someone was watching over me as I moved to New York on a wing and a prayer. The system and the folks in New York could not have been more helpful. My daughter soon moved into Laurel Lake and could not be happier. She continues to do fairly well and I find the serenity of rural Rensselaer County to be what I needed. Our three year anniversary of moving to New York is this week. I don't know if with today's fiscal climate New York is still so HD friendly (not sure why they ever were, maybe Marsha knows), but things are still going fine for us. I realize that my move was extreme and that most folks are not in a position to do the same, but I am forever grateful for the help I got here.

My heart goes out to you. I have no advice to offer. We were very lucky in my brother's situation. When my 70 year old mother was unable to manage some of his behaviors at home, we were able to move fairly smoothly from a brief hospitalization to nursing home care. His doctor met us at the emergency room of the hospital and had him admitted for observation for a few days. From the hospital he was transferred to a nursing home. I'm sure part of why it went so smoothly was because my brother did not have severe behavioral problems or severe psychiatric issues.

Fred said: "The government won't help you. They can't help you. They don't have a clue as to how to help you. Anybody that thinks the goverment is a cure is at best misguided."


And I think that anyone who thinks that the "private sector" is the solution to health care is "at best misguided"

And invariably someone who can GET private health coverage!

Many cannot...

jl

Doesn't matter who covers the cost if there is no place to go for treatment or to live.

Obviously, it matters a great deal, if people DO have treatment/housing available - but not to THEM.

Because they are not accepted. Or because they can't afford it.

Either way - they don't get the care they need........

jl



Edited 1 time(s). Last edit at 07/01/2009 11:15PM by jl.

Coverage isn't the issue. It doesn't matter in this case, and in MOST HD cases because pHD's don't have a lot of money in MOST cases. They lose it due to bad choices or the inability to control their assets.

Medicade will kick in eventually. OUR FAMILY USES MEDICADE. No private health insurance in the world covers this! Never has! Never will! Maybe LTC insurance would. Our Private health insurance covers meds and doctors, and that's not the issue at all!

It's not a matter of "discrimination". The healthcare system isn't "discrimnating". The system has been changed to protect people from being locked up for long periods of time since abuses to the older mental health system from the 30's-70's. The psych units are for people that the doctors think they can actually HELP. HD is something that can't be cured and there is no real "treatment" plan.

The issues is that there is NO place to take the PHD. Hospitals won't take them long. Mental Hospitals that are staffed to deal with behavioral problems won't take them very long either. NH's are sadly not equipped for younger patients with violient behavior.

Howard had to uproot his family and move to NY to get to the one or two faclities in the US that is actually staffed for these patients.

I've banged this drum over and over in about every advocacy thread I could find: PHD families need facilties! There is no two ways about it.

As a group we need to either copy the design of laural lakes or create a better plan. Define the needs of the patient, and advocate for the creation of similar facilities across the US.

BTW JL, Laural lakes isn't a government agency.



Edited 2 time(s). Last edit at 07/02/2009 10:37AM by Fred.

What is Laurel Lakes?

Fred, I didn't think Laurel Lakes is a governmental agency.

How much does it COST?

JL

For medicaid, one's assets have to be no more than $2000 (for the person receiving medicaid).

That does NOT apply to a spouse of someone on Medicaid in a Nursing Home. It can vary slightly from state to state but a spouse can have much, much, much more in liquid assets (depending on the total resources of the household- and if a couple did a resource assessment when the person applied with medicaid for nursing home, which say for example, a couple had a $100,000.00, $50,000 or 1/2 would be set aside for the spouse to keep and then a person in the facility would private pay with their $50,000 and the spouse gets to keep all theirs up to well over $100,000.00.

If a couple only has $20,000 total liquid resources, then 1/2 would be $10,000, but that is below the standard for a spouse so the person in the facility would be allowed to "sign over" their portion of resources to the community spouse up to about (depending on the state)
$21,900 (in other words the community spouse gets to keep all of the $21,900 and medicaid does not take it from either of them).

Many may not also know that Medicaid has programs that pays people's medicare premiums for them (currently $96.40/mnth). income and resource limits vary by state but call your local Medicaid office and they'll let you know if you're within the resource/income limits.

Also, there are legal ways to make your resources not count. Such as doing a prearranged/prepaid burial fund for you and your spouse. (again...in most states) you can do one for each of you up to $10,000 each and that not be counted as a resource.

Medicaid is a program that families should be aware of and maybe take some of the fear out of the unknown. Plan ahead!



Edited 1 time(s). Last edit at 07/02/2009 04:36PM by LizzieAnn.

I do agree with Fred on the fact that wheather you have LTC insurance , Medicaid or can private pay....it's not really going to matter if there isn't a decent facility that will take you.



Edited 1 time(s). Last edit at 07/02/2009 03:37PM by LizzieAnn.

JL, If you don't know exactly HOW I qualified my wife for medicade then you just don't understand the system. Plus, you haven't read the multiple posts were I explain how this is done and how to check into it.

Besides, were were not talking about YOU were we? Do you always have to make this about YOU?

Health insurance didn't really pay for any of the specialized care my wife had. It paid for the Neuro visits, that were actually less cost than a regular doctor's visit. It paid in part for the meds she took, which varied in cost. Some were high, some were Walmart $4 scripts.

The insurance would partially pay for 25 days of therapy in a one year.

It would pay for a hospital stay or two, after the deductable was met, and at 80/20.

It did NOT pay for LTC in any way. Only Medicade will pay for that. That was really the only specialized payments I needed. That bill is around $50,000 a year.

As far as the discrimination issue, it is a service issue. There are NO facilities suitable for HD patients given the particular symptoms. HD stands alone, and is fairly rare.

The best comparison I can make is to ask if your kid has 3 arms and legs and the store doesn't have a complete line of clothing apparel, is it discrimination?

The problems my family faced wasn't ACCESS to health services, it was the sheer VOID of services available.

NEURO PSYCH facilities capable of handling violent patients with dementia don't exist. There is not drive to make such facilities because they are a lawsuit waiting to happen for both the state govenments and private providers.

Does that sound delusional to you JL?

Aud,
The advice I got from one hospital social worker after a similar appeal was "quit your job and put your child in foster care, it's what families do".

Actual quote.

It was at that point I realized that there is no care facilities for pHDs. I spent several years finding just one, and they have only 10 patients, and say they cannot handle any more.



Edited 2 time(s). Last edit at 07/02/2009 04:33PM by Fred.

Teresa isn't married to an asshole JL nor are her children little assholes. The reason the laws are this way is that people were divorcing to keep assets protected for the rest of the family. Kids and spouses need a place to live so they get to keep some to do that with, without a divorce. That's a good thing. If it comes down to someone needing expensive care in a NH it's fair that the family absorb a reasonable cost of that care without leaving four people destitute. Had you owned a house JL you could have kept it also and a car. If you ever need a NH, at that point with you being single.. your house would be sold as you wouldn't be returning to it and you have no immediate family that needs that asset. A home doesn't do a single person any good sitting there empty. It does do a family good.. it's a family asset. And yes JL my wife spent me into oblivion.. money management can absolutely be a problem with a pHD. It part of impulse control and rational decision making that fails. Fred stated the absolute truth about that. He said MOST in big letters. Not EVERY.

There is nothing meaningful to argue about here. We all agree that services and placements for people with HD are lacking. We are not going to argue over who is and who isn't an asshole.

Anyone else tired of this crap ruining our forum???