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.


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.

Avatar of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

10 thoughts on “Goldilocks

  1. Unit Known as Shandi

    Wow. I can totally relate. I’ve had Mom in two adult family homes and two nursing homes since September. None have been “just right”, or even close. I brought her home last week after 3 skin tears, dehydration and a bad rash were not being addressed. I don’t feel like even her basic needs have been met in any of those environments, let alone “extras” like friendships or activities to keep her sharp mentally. Are Robert’s needs beyond the adult family home level? I know there are several in our area that take only adult men, as I’ve been keeping an eye open for a friend who needs to find one for her son. I hope your search goes well, and you find as close to perfect as possible!

    • Trish

      There are different classifications for the homes. Robert needs one with nursing staff available but not 24/7 (called an ICF — Intermediate Care Facility). It will probably take a few months to find one that is suitable and has availability. I just don’t want to wait until I get so fed up that I’m in a rush so am starting the search now. It’s a gamble though; sometimes you don’t know what it’s like until you get in there. Is your friend in CA? I can send you some links to look up homes. If not, your state should have a “Health & Human Services” department and they will have a link to look up all homes and their various citations, etc. It doesn’t give the full picture, but it helps.

  2. Avatar of DeniseDenise

    Hi–I think you are wise to search other options. I love how you sum up the situation: “These are not reasons to keep him in a home that has clearly contributed to his mental and physical decline.” I think we often settle for what we have because we worry about the toll of the transition into what we really want. I hope you will take us along with you as you search for the right fit. I know we’ll learn a great deal from you. I also know that you will find the fit!!

    • Trish

      Thank you for your confidence in me, Denise. That means so much to me. I don’t want to settle and that’s what was simmering after the meeting. I want to give people second chances but I’m not seeing it and the more I hear about this company (from people that work there or used to work there), the more convinced I am moving him is the right decision. I will definitely bring everyone along for the ride! :-)

  3. G-J

    Hi, Trish! The good news is, look how much you’ve learned from these two experiences! I’m sure you have a better idea what to look for and what to ask as you start to interview new places to find the best fit for Robert. Good luck!

    • Trish

      Yes, you’re right, G-J. I have learned so much in the last couple of years. I thought I had asked all the right questions before moving him to this home but found out later they actually lied to me! (I asked about staff turnover, visitation, doctor visits, etc. — she answered with what she knew I wanted to hear and not what was the truth!). It’s hard for me to believe that someone in a helping profession would do that, but she did. Argh! I’ll keep you posted on the search.

  4. Bette

    Hi Trish,
    You know what is right for Robert and I so admire you pressing forward to find that. As Robert gets older, his needs change (like all of us). I think it’s wonderful that he will have those needs met – because of you.

    I look forward in hearing how it all unfolds. I look forward to hearing about the blessings along the way.

    You are such a blessing to Robert! He is so fortunate to have you.

    • Trish

      Bette, You are so right! Robert’s needs have changed dramatically in the last few years (he was living with a companion in their own home up until 2008 with just some oversight & financial assistance!). The decline is scary and I can’t have New Home speeding that up unnecessarily.

  5. Avatar of KathyKathy


    Is Robert excited?! I know I am!
    Stupid new home!
    I never did like them much you know >:-|

    I am happy day program will keep him. Something constant and familiar helps with transitions.

    You are absolutely doing the right thing. Don’t second guess that for a moment. You ROCK!

    • Trish

      Kathy, Thank you for pre-empting my second guessing. You know me too well!! Robert doesn’t get too excited about things but did say, “That would be nice” when I asked him about it. That’s as excited as he’ll get! :-) I asked what he wanted in a new home and he said, “people that are nice” and “people who will talk to me.” Isn’t that what we all want?


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