Goldilocks

Jun 13 2011 in by Trish

It’s been a while since I posted but I was letting The Meeting simmer for a while. (These feelings probably also contributed to being a bit too harsh on my wayward son). After a week of reflection, I have decided it is in Robert’s best interest to move him.

Again.

You might be thinking there is just no pleasing me (which, if you ask New Home – or Old Home for that matter – that might be their answer). Personally, I think I’m pretty easily pleased as long as my brother is well cared for and thrives in his environment (and I don’t think that’s too much to ask).

Since 2009, Robert has lived in three facilities. The first was a Skilled Nursing Facility because he had a raging staph infection and needed intravenous antibiotics for six weeks. This SNF had caring staff, knowledgeable medical personnel as well as physical and occupational therapists who helped Robert with exercises and provided him the medical equipment and devices he needed.

The most useful of these devices? Shoelaces that cannot untie! For something so simple, these magical shoelaces have contributed to maintaining Robert’s independence more than anything else I can think of at the moment. (Robert likes regular lace up shoes instead of Velcro and should be able to have that option wear them if possible.)

(See? I was pleased with this facility!)

Robert’s infection finally cleared up and he had to be moved since he didn’t need constant nursing care any longer (although he really did miss being served meals in bed).

In a very short amount of time, I became educated on the different kinds of care facilities, social security benefits and any other type of assistance available for Robert.

After getting my advocacy training wheels on, Robert was accepted into the Assisted Living Waiver Pilot Program (through Medi-Cal) which led us to Old Home. It was really a home for the elderly but there are state regulations that allow a certain percentage of the population of these RCFEs to be under 55 years old. At 43, Robert was the whippersnapper of the bunch.

Old Home provided Robert with a private room and bathroom, filled his days with activities (bingo!) and fed him well (a bit too well, actually, causing me to invest heavily in Levi’s stock). At first, they were quick to dial 911 after a seizure but I educated them about seizures and eventually spent less unnecessary time in the ER.

Don’t get me wrong, there were hiccups. Plenty of them, including a nurse who regularly showed up to work intoxicated, a change in administrators as well as an eventual change in nursing staff. Robert only had one friend and couldn’t talk to many of the residents because as he told me, “they can’t hear me.” New Administrator didn’t particularly like having a client who had seizures. Within a few months, Robert had been reported for pushing his walker into an aide and after meetings with the Administrator and Ombudsman (who confirmed my suspicion they were overreacting), I received an eviction notice for Robert (it didn’t help that it came a few short days after our father passed away and on the actual day that I had been at a funeral home planning the funeral).

Fine. I’ll move him.

I knew the real reason Administrator wanted Robert moved was because he was afraid of law suits from families of little old ladies who may become injured if Robert fell on them.

Which is a lot different than actually being concerned about little old ladies being injured.

I knew they couldn’t kick Robert out for these reasons but didn’t want him to be at a place that didn’t want him there. I agreed to move him and they backed off until I could find a new home.

After several months, Robert was accepted into the local Regional Center which provides services, including housing referrals, for disabled individuals. My hope was he could be placed in an environment where he could make friends in his peer group and find a girlfriend (something he said he would like to do).

Since it took months to just get him into this system, I have to admit that I chose New Home in a rush. I was new to this system and I let myself get steamrolled into choosing the first home I visited.

Being steamrolled is not usually something that I let happen to me but I needed to get Robert out of Old Home and let myself be told (by the owners of New Home so I should have known better) there weren’t other homes available and this was it. (I have later found out there were several things I was told by this company that were not true).

After four months of communication issues with New Home management, I have decided Robert deserves better. This is his home, after all. He has to be able to thrive and look forward to spending time there.

It may take a long while to find a suitable home run by a different company (which apparently owns several homes in the area) and I have my worries about moving him since change in routine takes its toll on Robert, but these are not reasons to keep him in a home that has clearly contributed to his mental and physical decline. The Day Program staff has reassured me their program will be a constant in Robert’s life and being there will ease the transition to New Home 2.0.

So, go ahead and call me Goldilocks because my goal now is to find a home that is “just right.”

Robert deserves to have a home and not just a place where he’s filling up a bed.

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