(10) Words of Wisdom

When I made a follow up phone call to the social worker about her visit, she admitted to me that the forced psychological and social evaluation necessary to put Alfred on services which he claims he does not want, would be so stressful for him that it would probably do more harm than good, and she even went so far as to advise against it! So here I am stalled and right back where my folks were after Alfred had been released from the hospital with a diagnosis in 1999 . They could do no more, now in a different time, in a different age, I believe I can do more.

The SW told me that, I am Alfred's social network.  Here in lies Alfred's route home, here in lies the one community in recovery message, how to get that message to Alfred, and I thought one way to build a stronger community support system would be to organize a NAMI family-to-family class so families having a mentally ill family member can more easily talk about the challenges they face with their mentally ill loved ones, learn more about support systems, medications, and the world of the mentally ill.  The SW said I could call her anytime.

Recovery in a changing season is NOT about anonymity and shame anymore as it once was when Alcoholics Anonymous ruled, it is now about compassionate, empathic people helping, pulling through, looking into the others eyes showing them their shining face, giving them hope for healing and acceptance,  a newer, brighter, lighter day, hope right here now in the mountains, calling in the winds right here in our beloved homeland, on this planet, on this earth there must be a way. 

(9) Trust and the Second Big Clean Up, November 2015

It was a heartbreaking time after our mother's passing in 2010, both us siblings feeling deep loss, a combination of endings and beginnings, Alfred responding by throwing much of the contents of his cabin down a ravine out the back of his cabin, and me falling silent taking daily walks in nature meditating on an unknown future.

What would Alfred's reaction be to the loss of his Dad, did I need to take action and what action would that be that I would need to take, a resounding silence answered me back, and I did not know.

Four years later, while Dad lay in his study dyeing, I invited Alfred to come over to the big house to give his condolences, and as expected Alfred refused just as he had done while my mother lay passing, refused, denied, just as he denied his mental illness.

Seasons needed changing, and giving more information to Alfred about his circumstances needed to begin by giving him enough information to digest, sometimes daily, sometimes weekly, or sometimes monthly, but sometimes.

So I reminded him again that he had SSI and Medicaid, and that he could continue to live in the cabin and I would continue to take him into town to get his groceries. As it turned out I was glad I had told him this because not knowing what the future held, he said he'd been saving dollars and had planned to leave for Charlotte, live on the Streets, and would probably die there. News that everything would be the same meant for him that he would have his continued security.

Not long after that I knocked on his door, and to my surprise he opened it saying, you can enter anytime!  This represented a change in Alfred, looking around at the condition of his cabin, and me not being a person that can do lots of stuff all at once, I knew I would have to clean it sometime soon or have someone clean it soon or a combination of both, not however until after I went through my own grieving and not until matters of the estate were settled. Even though I was getting a green light from Alfred things would take time and I would need to have the season to focus on making changes for Alfred.

The right season just came this fall 2015 and when the social worker first visited Alfred I peeked in his pantry and bathroom and was shocked at the filth I witnessed and i knew immediately that the price I would pay to have this grim cleaned up would be whatever it took to make things easier for me to get the job done, it had to be done and I went into semi panic mode. How could this have been left for so long!  Guilt and anger arose in me, and a search for a good cleaner began with introductions to bevy of clueless cleaners as I sifted through their realm of services while struggling to accomplish the task at hand, to find someone who would clean Alfred's cabin.

The first clueless cleaner, here referred to as F1 made up a few excuses and ran from the mess, the second cleaner, F2 never returned my call, number three was so good at what he did he was booked solid for months, the fourth clueless cleaner F4 wanted to remove the toilet, that's correct I said they wanted to remove the toilet and this was based on the pictures I had taken of the bathroom to help them make an estimate of the cost. I said, it needs all surfaces cleaned first, and asked him if he wanted to recommend someone and he did recommend cleaner F5, and they were the final trip.

A man and women showed up with a clip board, they looked around, we talked, and they said to clean the cabin they required a new shower head with a hose, use of my vacuum cleaner and change of vacuum bags, and they would not clean under the kitchen sink where some insulation had pilled up due to some nesting going on there. The man would show up with two girls, get them started, and I was to pay him before he left, and when the girls were finished they would call me twenty minutes before so I could inspect. All for the grand price of $750.00!  It's from these two that I get the above name clueless cleaners and it is also from them that I got over my cleaning trauma real quick!

So I offered to pay someone $100/hr to help me clean knowing that whoever took the job would do a good job and would be smiling from here to Timbuktu when finished. I would supply all clensers. I found the perfect person, the same person who'd helped me clean a few hours this summer,  a new business partner perhaps, Perfect Persons who Clean? And we went at it on Sunday morning, wearing gloves and masks, armed with an arsenal of products, and after two hours I paid my cleaning helper $200, and she was thrilled when she let. I cleaned for and additional hour, and left the cabin looking livable again. The only issue I had with my helper was she seemed to want to slam my quality Hoover vacuum cleaner's head into the wall with the back-and-forth movement,  and after getting Alfred laundry I returned to a jammed vacuum because she did not put the bag in tightly enough when she changed it. At that point I let her go. I was glad to have the help and glad the help was glad upon leaving. I only had to spend an additional hour de-jaming the vacuum.  Alfred's cabin is clean  now so I can run in and swipe once or twice every two months and it will stay clean or I can hire someone for much less than $100/hr now that my emotional guilt had been unpacked and cleaned up or I can re-train Alfred to clean his own cabin perhaps this could be a key component to his recovery?  First I may have to convince him to use soap when washing, there was none in the cabin.

(8) DSS Returned Today

Nov 17, 2015:
They went directly over to Alfred's house this time, and I saw them on Alfred's porch and heard Alfred yelling, so I opened a window in the pantry so I could hear what was being said.  Alfred was yelling at them, he has a master's degree, he is a poet....critiquing the social workers, "wow!" reaction saying what does that mean, that does not compute, and continuing on saying things like there are no police and finally get out of here and so on.

A few yards away from Alfred's house, as they walked away, I approached them, we shook hands. They said that he fits in their category of a person who is not assessing mental health services, and is self-neglecting and refusing medical help. Dawn noticed that one additional tooth was gone from his mouth since her visit last week. They also said that if I wanted to get Alfred an assessment the police would probably have to pick him up to take him to a psychiatrist, after an assessment he would be given a court order and he who would probably be declared incompetent, and then he could be appointed a guardian. My folks did something similar to this in 2000 and had him put in Cannon Memorial Hospital in Linvelle where he got a diagnosis which got him an additional safety net besides the family. I am on the second leg of this journey they could not and would not take, guardianship.

The social worker said that she had seen things get nasty.  They told me I did not have to decide now, it was up to me, and I told her I would call her while thinking there must be another way. After they left I was uncertain as to how guardianship, either mine or and appointed person would actually help Alfred in his recovery.  I think it would be much better to get his cooperation so he would not loss his human rights. But how to accomplish this, how to get him to care about himself.

Since Alfred is sixty-five, has become a hermit and has gone many years without medications, my thoughts of his recovery are waning.  For what end would his recovery be, to return to work odvioulsy not, to become useful to society, probably not he seems to have no vision for himself of usefulness or membership in the human race.  I think he would be recovering to go to an appointment for improved physical health care such as a routine exam, and dental care. The big question is what is the larger goal for him and I am not hearing any answers, not from him, not from anywhere so I am re-thinking the notion of recovery for Alfred. At least at this time he is on DSS radar and there could be strength in this for him. I will have to call Dawn and talk to some NAMI folks.  I said this would not be easy. 

(7) DSS Assessment continued, part 2

Then she asked me about the budget and I was ready. Extra money for Alfred went for his gas to town, heat for his cabin, and occasional meals out. In 1997 mom discovered that she had to give a small inheritance of under 2,000 from Alfred's grandmother to a local funeral home because Alfred was not to have any money in his name otherwise he'd loss Medicaid and his SSI check.  So today the funeral home has this money given to Alfred by his grandmother. As I see it this is part of the governments commitment to keeping the mentally ill poor and incarcerated.

Also, I have been involved with National Alliance on Mental Illness for over ten years, around 2007 I heard about something called a Special Needs Trust. The concept lingered in my mind until 2012 when after my mother's passing, I found an estate attorney to redo the poorly written revocable trust. So my dad at ninety-eight years old of sound mind, and I went in to see an estate attorney and I asked him about a Special Needs Trust for Alfred.  Today, Alfred has a SNT that protects the safety net that his parents gave him. Government can not take away his housing, nor budget away his support system.

The Social Worker and I also discussed guardianship. I learned at the Nami State Conference that there are three types of guardianship: Full, Trust, and health. We discussed the options and I figured maybe it would work best if social services had guardianship of Alfred's health. So I discussed this with the  social worker and she said even DSS does not force people to do things under their guardianship and I said good as I too do not want Alfred forced, I want his agreement. We left it at that.

Before heading over to Alfred's house I told the social worker, Alfred does not have a gun. She said she had been treatened with a knife before and I told her Alfred would not do that. We entered his cabin, introductions were made, she looked Alfred squarely in the eye and her preliminary assessment began.  She disclosed to Alfred that an Adult Protective Services Complaint had been issued and Alfred looked at me. I asked him about his decaying teeth and he told the SW that dentists kill people. She said this would be just and ordinary regular dentist.

Her main concern with the cabin was the inoperable smoke detector and I told her I would put in a new battery. When we left the cabin she said medication could make a big difference for him and she was going to talk to her supervisor, away she drove. I am waiting to hear back from them.  Not sure how long this will will take. Nov 6 Jefferson Post reported the day after the social worker left that the DSS director is retiring and commissioners are considering dissolving the oversight board of DSS and so the future of DSS is under consideration and according to the paper DSS will survive however it's BOD may not. According to one person the purpose of dissolving the board would be to improve it's operating system. 

(6) DSS CAME LAST WEEK, part one

On a sunny day last week I heard a car's engine grinding hard to get up the driveway, looking over the deck and down at the road I saw a four door vehicle backing up to reposition itself for more traction to get up the hill and I knew right away that whoever was in the car was someone experienced at steep driveways on gravel landscapes.

So on a sunny mild November day we sat on the deck,  she pulled up a stool and put down her case and pulled out some forms.  This was the part I feared most, the snoopy questions, her intrusiveness, and where it might lead too. Was Social Services still hostile to the mentally ill, would they bring in the police and harass Alfred as reportedly had happened in the past when people refused to comply with things like letting them enter their house. Would they try to cut off Alfred's safety net created by mom and dad, and leave him without Medicaid and SSI. Cutting mentally ill folks benefits happens still today.  When families pitch-in extra cash toward things like rent, government accounts for that, and deducts that amount from a person's monthly SSI check. Since they get as little as $8,000/yr this leaves people with the same small amount of money they had to begin with, and so families are defeated,  discouraged from helping their loved one, and poverty is strictly adhered too keeping the mentally ill poor and sometimes without services harbored by our countries incarceration system. I knew my folks did not want Alfred criminalized because he had a mental illness, this would be great injustice and I too would not have it.

In 2014 while teaching a Nami class one of my students told the class that SSA reduced her paycheck by the same amount her parents gave them to help her with her rent. He parents had proudly admitted helping her with the rent and all were in effect punished! If family's have extra money often times they want to help their loved one. However if gov takes the money families give to their loved one away then their helping is defeated. Nami, an advocacy organization needs to inform it's members that this can happen, and find new ways to address changes needed in the system.

I answered her questions, no Alfred did not have children, none that I knew of, no he is not diabetic not that I knew of. I repeated to her what I had said over the phone that I was concerned about Alfred's physical health because of the screaming I hear coming form his home about three times/ week on average. I am concerned that he is in great pain about something. Then again it could be his diagnoses. She stopped me there and asked how long ago was it that he was diagnosed? Since it was in around 1997 or so she said they would have to reevaluate hime. I knew once she met Alfred she would know he has a mental illness.

I told her about what happened in 2012 after receiving a letter from NC Dept of Health and Human Services Division of Medical Assistant saying that an annual physical check-up could be scheduled with High Country Family Medicine PA.  So I attempted to schedule an appointment for Alfred, and was told that all the Dr's there refused him an appointment!  I felt I'd made a mistake by mentioning that Alfred had a brain disorder because their refusal must have either been because of stigmatization of Alfred for his brain disorder or distain for the poor because he was on Medicaid. Not sure, however this stopped me in my tracks, left me hanging......  To be continued....

(5) More on The Big Clean Up Then, 2011

In 2011 besides removing debris from the ravine behind Alfred's cabin, the inside of his cabin would need some attention too, however this would have to be done clandestinely so once again I employed Richard and Robert to clean for a day. Richard from my church had some experience with mental illness because his x-wife had a diagnosis, and Robert had actually been in my National Alliance on Mental illness family-to-family class in deep gap ten years earlier so I vaguely remembered he and his wife, and he remembered me, and we all knew families could have problems because our families all had problems.

This had to be an clandestine operation because while Alfred granted only me access to his cabin for things like repairing his TV, he would get very upset and indignant if anyone else were to enter.

So R and R's clandestine operation began when I gave them a spare key and drove Alfred to Boone for the afternoon. Richard reported that the pipe attached to the washing machine had been removed so moist air spewed on top of hot water from the shower to create a black mold carpet which was growing out of Alfred's bathroom, into the pantry and had make it all the way to the living room.

Richard also assessed that the washer and dryer, a high quality Maytag were not working to maximum capacity. So this would have to be dealt and we set up a second clandestine operation for Richard to remove the machines, repair or replace to get them functioning again.

By the last clandestine operation I didn't need to take Alfred to Boone because he would be watching TV at the big house oblivious to whatever we were attempting to accomplish at his house because Alfred only minimally noticed that his house was cleaner, and did not make any significant observations or have an concerns about things in his house being different after it had been cleaned.

And so Richard and Robert had a good time helping me through this, while getting paid.   They had broad smiles when they finished and even joked about Alfred's "cutlery" in his cabin. Yes, mother had fully furnished Alfred's cabin after it was built in 2000 and my folks told Alfred to go live in it, and that's what he did.

Richard and Robert one haul of several

Later I very seldom entered Alfred's cabin after TV's went from annotated to digital because I could not do the upgrade so we had run into a bump in the road, Alfred still would not allow a repair person to enter his cabin so I had to cut off his service. Later I gave Alfred permission to come to the big house when I was away to watch TV. This solution has worked.

After this 2011 Big Clean up I occasionally asked Alfred if he was washing his clothing and I even offered to clean it in the machine at the big house. He always refused. And as time passed, I dropped the ball, hoping that he'd keep his own house clean. It did stay clean for a while.

Today Nov 10, 2015 a second resurgence begins, I must do my part in Alfred's recovery and this time he agreed to having his cabin cleaned. So while Alfred watches TV,  a cleaning lady will be asked to spend several hours scrubbing his bathroom while I dust and vacuum etc. The cleaning lady comes this morning, I hope she doesn't run from the sight. This must be a regular activity. I will supply gloves.

(4) The Big Clean Up Then and Now

Getting Cooperation from Alfred:

Well into the year 2011 over six months after my mother passed, I made a startling discovery as I was taking my daily constitutional hike down and up my long one-mile driveway.  On the way back I spotted something glimmering deep in the forest. It looked like what could only be a shinny white rock, my heart skipped a beat, and first I thought magical, mystical woodlands love it, then I felt a hint of anger welling up in me as I veered off the gravel road, up the steep raven, panting as I climbed deeper into the forest, I slowly made my way toward the NorthWestern crest just yards from Alfred's cabin.  My anger scored as I bent down to look at a chewed up plastic garbage bag and there was not only one of them there were tons of them, and more then just white plastic bags, pots pans, clothing, tables half of Alfred's well supplied cabin all lay rotting and decomposing in the woods, undetected for months, just back of his cabin.

Then it came together, I had been grieving the loss of my mother for months and only peripherally noticed that Alfred had not been bringing his trash to the car for his weekly runs into town. I had asked him about his trash and he had claimed NONE so for months and months there was no trash coming out of his house while I had wondered where on earth it was, I had just discovered where it was in the raven back his house. This would have to wait until I could get him to change his behaviors and clean it up. I felt overwhelmed.

As it turned out the change happened in the opposite manner from which I had anticipated. First came the big clean up, then I was able to oversee a behavioral change in Alfred.

I waited for months to figure out what to do, and finally in church one Sunday, a member announced that he was taking on handy-man jobs. That was it, just he break I needed and so I hired Richard and he brought a friend and they spent half a day cleaning up the raven. They returned some time later as I found an additional stash of Alfred's debris after the first big clean-up.

So while at first I could not get Alfred to bag his trash after he'd gotten used to dumping it out the back, I did finally get him to bring his trash to the car on the trips into town after the raven was cleaned up. I didn't insist any more strenuously then I had prior to clean up, I just did not give up on the trash issue, and so got his agreement and cooperation to bring his trash with him to the car for town runs. More on the specifics of this change in later posts.

According to one friend/psychologist Alfred's trash dumping behaviors could probably be his way of grieving the loss of his mother because grief comes in many forms. So although he is in detail about just about everything, maybe Alfred had also been grieving our mother's loss. Did I need to be concerned about Alfred's grieving ways after our dad passed, probably.  Fortunately that would be some years later.  Next blog posts and update on the Big clean up Today DSS is on it's way. 

(3) They did everything they could for Alfred except.......

As a matter of fact my folks did everything they could for Alfred.  Besides assisting him in getting health care and food they also build him a cabin, fully furnished and heated it, and they provided him with transportation into town for his groceries. Alfred on the other hand would do nothing for his own recovery. He was and has been in complete denial.

So almost fifteen years ago in 2001 my folks begged me to come home from working overseas to live wth them in North Carolina as they would need help with Alfred however also they would need help in their elderly years for they wanted to stay here, live in the mountains, and not in an institution such as assisted living.  I was happy to help. So I became caregiver for three of my family elders.

My folks did everything they could for Alfred except make him recover and that can not be done for cooperation is needed.

Over the last years I have gotten some cooperation from Alfred and in this can be found the source of the strength needed to put forth toward his recovery. More about how I've gotten his cooperation in future blog posts.

My goal is to continue to get Alfred's cooperation in his own recovery. Will DSS help? Following me in this blog and we will find out and I will let you know. 

(2) I called for Adult Protective Services, DHS

I  have been Alfred's caregiver for over ten years so calling the Department of Human Services last week, and making an Adult Protective Services Complaint was not easy for me however I felt it had to be done because Alfred has not been taking care of his hygiene, and occasionally (like three times a week on average) while sitting on the deck outside I hear him screaming in agony either at his other-self (per his diagnosis),  or because he is in great pain perhaps from an an abscesed tooth, I don't know. It is the great pain/infection part of the equation, and the fact that time had moved on and now I am his sole caregiver that nudged me and I had to do something more.

More background:
Now that Dad has passed I no longer need to adhere to his beliefs that Alfred will heal on his own if left alone. I think Dad's beliefs about Alfred's mental health came from a place of great shame, discomfort, combined with an unrealistic assessment of his prodigal son. In my opinion Alfred clearly has what NAMI calls a "brain disorder" and the right medication could help him if I can only get him to work with a health care provider and take his best option.

Alfred got a diagnosis in around 1997 at the age of 47 due to the diligent efforts of my mother who recognized he had problems soon after Alfred arrived in North Carolina from California. Alfred left California because he had been moved by police from him homeless spot under a bridge to a new homeless spot on the beach, and was then assaulted by some men and lost some teeth and maybe this is why Alfred believes he is two years younger then his actual age. Somehow he lost a couple years of his real age between the move and the assault. I may never know.

So in around 1997 due to mom's discussions with New River Behavioral Health and her own hard work petitioning the courts, Alfred was hospitalized for two weeks at Canon, assessed, given a diagnosis, released with Medicaid, SSI, and then refused to take medications. At almost ninety years of age mom could do no more, so today as time keeps ticking, Alfred has not taken any medication for over fifteen years. It is his refusal that makes getting help for him so hard.

I am not giving up.

(1) Alfred's Recovery Begins Now!

Some background: Alfred's Recovery Begins Now!

With the resurgence of the Mental Health Recovery movement in August 2015 exemplified by the recent Inaugural Western Regional Rally for recovery at Lake Junalusha and the acknowledgment by the public that recovery can and does happen, I have recommitted myself to helping my brother Alfred with his recovery.

This will be no easy task, it will be a hard road, and frankly not sure of the outcomes or not even sure at this time if recovery will actually benefit Alfred because he has been in denial for well over twenty years if not all of his life and he is now sixty-five.

I could do nothing (or very little) until now because specifically my father did not want our mental health care system or anyone messing with Alfred's health.  While Dad was not mentally ill himself he had some strange ideas about Alfred. One idea was that Alfred would die before he did and he actually stated this several times. It was such an outlandish idea that my jaw hung open, did dad really believe this, apparently he did. So Alfred's recovery would have to wait, and wait. At one-hundred years of age Dad passed last August 2014, and my grieving and settling matters of estate began, and now a little over one year later my grieving has come full circle,  the estate is sound, and I can have another look at the situation, and go full force as much as I dare, head on facilitating the recovery of my brother Alfred.

This Blog on Alfred's Recovery begins now.