Monday, June 13, 2011


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.


Louise Edington said...

I am full of admiration for you being such a consistent and powerful advocate for your brother. I do hope you find him the right place soon.
Louise Edington

Fiona Stolze said...

I really love your commitment and love for your brother. And I so agree that it has to be just right. Compromises just don't feel right. I would hold out until you find what you are looking for.

Fiona Stolze

Heidi Alberti & Atticus Uncensored said...

I can't imagine the stress and toll this make take on you... but you are absolutely right Not to comprise on Robert's care!

It's a very sad state of affairs that these homes are more concerned about being sued than the actual well-being of residents.. but certainly doesn't surprise me. Sadly, profits before people seems to be the trend...

I wish you luck finding Robert a new home where he can thrive (and where the admins can communicate properly with you!)

Heidi & Atticus
"commentary to give you paws..."

Trish Hughes Kreis said...

Thank you, Louise. I can't imagine not being a strong advocate for Robert and often worry about the countless people who do not have an advocate (either because they aren't around or are afraid to do so). My goal is to help others, too, so they know they don't have to settle (or take for granted that these places will do what they are supposed to do).

Trish Hughes Kreis said...

Fiona, I love your comment that "compromises just don't feel right." I have never put it that way but it is such an apt description (at least in situations such as these)! I always appreciate your insight. Thank you.

Trish Hughes Kreis said...

Heidi, You are so right that it is stressful. (I think that's why I "go dark" sometimes and just need to let things simmer). It's very aggravating when it's clear with these homes that it's all about the profits instead of the people. The hands on workers are (usually) great -- the management not so much. And that's coming from me who is a manager and knows the business perspective! I get it but you can't put profits before people. Not okay. Thanks for commenting!

June Sockol said...

As the mother of an autistic child, I can totally understand wanting your brother to have the best. He should be happy in his home as well as being taken care of.

I hope you find a home that will provide the care your brother deserves. You're a wonderful sister to be looking out Robert the way you do.

Trish Hughes Kreis said...

Thank you, June. You would think it would be easy to find a home that is well run and encourages family involvement. I'll keep you posted on the search!

Laine D said...

What an amazing advocate you have become for your brother! You're not being picky and although I love the Goldilocks sobriquet I don't think its the case.

If you were buying a car you would weigh the pros and cons of each make and model - if you had a good car but the service was terrible next time you would look for a different option, and that's just a piece of equipment!

Everyone, no matter their challenges deserves to be in an environment where they receive love, appreciation, support, kindness and encouragement to grow (that's why I love the Circulation Desk! each member challenges me to grow with their point of view and support).

Robert deserves a place where he can enjoy interaction and feel safe and appreciated and you deserve him to be in a place that loves and cares for him just as you obviously do!

Thank you for fighting for Robert ~ what you are doing is not only making the world better for your brother but for every other person in a similar situation ~ You are making the so called "Care" facilities accountable!

True inspiration!

Laine D.

Trish Hughes Kreis said...

Oh my gosh, Laine, you're making me cry here. I really appreciate the support and definitely want to help Robert and others in a similar situation. These facilities do need to be held accountable and I'm finding they are not yet used to that and, in fact, count on people not knowing their rights (or counting on no family involvement). Thank you so much for your support here and on the Circulation Desk (love that group!).

Laine D said...

Me too! :D but with righteous indignation.

"Aspire to Inspire"

Joan Oliver Emmer said...

Eventually, you will find a place that feels "just right." And you will know it because you will feel at peace when you go home from visiting him at night, and when, during the day, your thoughts drift to him, you will picture him happy and well cared for.

Trish Hughes Kreis said...

Tahnks, Joan. That is exactly what I'm looking for. Lingering questions about his care after I leave his current home drive me crazy. I know he has the basics but I want him to be at a home and not warehoused. We'll get there!