Diving in to the Deep End

No sense burying the lead:  We have decided to move Robert into our house.  (Shh! It’s a secret right now so don’t tell New Home or Robert).

Ack! Phew! Goodness Gracious! Wow! What am I doing?? Sigh . . .

Moving Robert into our house has created a mini-explosion of emotion inside of my head and heart.  This was not a decision made lightly but I know this is the right decision. (I’m not telling Robert just yet because he has no concept of time and he’ll think he’s moving in tomorrow).

I have been on this path of caregiving with Robert for a few years now (he was able to live fairly independently before 2008).  Moving him in with me and my family seems to be the culmination of a natural progression of me caring for him but the decision was not taken lightly.

A while back, I decided to move Robert out of New Home and began searching for another home for him.  I wanted to take my time to find the best place for him and got a couple of referrals from people who are familiar with clients at these homes.  I researched the homes and checked on any citations and fines they may have had.  I “Googled” them to see if they had been in the news for any problems at their facility.  I checked the ownership of the homes to be sure the corporation that runs Robert’s New Home wasn’t involved in these homes.

I just couldn’t bring myself to see the homes.

Maybe it was because the most positive thing said about these new possibilities was that “the clients don’t smell and they always have a nice lunch packed.”  Wow, that’s really quite an endorsement.

Maybe it was because I dreaded dealing with yet another obstinate nurse or untrustworthy facility director (I don’t mean to generalize. I’m sure there are good ones out there.  Somewhere.).

I started to wonder what it would be like to have Robert live with us.

The housing logistics:  Not easy but not impossible.  We have a two story house with no bedroom or shower on the first floor which makes it impossible to move Robert into our home immediately (stairs are not something Robert can manage).  When he stays with us on the weekends, he sleeps downstairs on the sofa sleeper and goes through a “sink bath” in the mornings.  Having Robert here long-term means we either buy a new house or turn our garage into a bedroom with a shower.  I’m not independently wealthy so buying a new house is out of the question right now.  Converting our garage seems to be a reasonable option and we have contacted a contractor to help us out.  (Keep your fingers crossed the expense is not prohibitive!).

Social Services logistics:  I had a lot of questions about the services Robert currently has and if they could continue.  He is a client of the local Regional Center so I wondered if that would change.  It won’t. Will he still be able to go to his beloved Day Program?  Yes (yay!).  Will transportation still be provided?  We don’t know the answer to that yet.  Well, we can work that out if needed.

Health Benefits: Will these change?  He can keep the same neurologist.  I will have to get his medications from a pharmacy that accepts Medi-Cal (Robert did it on his own a few years ago so I’m sure I can manage this).  I will need to get him signed up with a new Primary Care Physician and will try to get one at the same hospital as his neurologist. (I have to let go of my new favorite emergency room since the neurologist is based elsewhere!).  Dental benefits will change.  Medi-Cal pays for four cleanings a year if he lives in a care facility but pays for none if he lives at with me.  I’ve long since given up trying to understand the logic of these government rules. . .

A huge question for me: How will this affect my family?  The decision to move Robert into our home affects not only me but my husband and our kids.  The “kids” are actually in college (or recently graduated from high school with as-yet-uncertain plans for the future – don’t get me started), but will be affected too since they live here.

Because I have a fantastic family, they were supportive but very concerned about this being too much work for me.  Figuring out basic things like how to go out to dinner with just my husband or on vacation without Robert will take some extra planning and help.  The amount of time I spend caring for Robert at my home will probably be more than I currently spend driving to visit him, arguing with New Home, or worrying whether or not he’s cared for at his New Home but not by much.

Having Robert live with us, especially while he keeps his Day Program, will actually be a relief.  My worry lines may go away and my grey hairs may stop trying so hard to peek through my most fabulous “brown sugar” color I’ve chosen for my head this summer.

I have comforted myself every time I’ve made a decision about where Robert should live by saying that the decision doesn’t have to be permanent.  If he doesn’t like it, we can make a change.  This is no different.  If Robert continues to decline in his physical and mental abilities and I am no longer able to care for him, I can find him a home that will care for him.  If this gets to be too much and I can’t care for him, I can find him another home.  (To those who know and love me, yes, yes, yes, this will be hard for me to admit and it will take me a long time to admit when I’m in over my head but I will – eventually – admit it).

For now (barring any problems with the garage conversion), I am excited about the decision to have Robert live with us at our home.

I am relieved Robert will be living with us, with family who loves him and animals around to amuse him instead of living in a facility with people who couldn’t possibly care for him as much as we do.

Robert will be home.

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!)

11 thoughts on “Diving in to the Deep End

  1. Unit Known as Shandi

    I’ve wondered if this might be the direction you were heading. As you know, I can relate to everything you’ve experienced. Been there, tried that. Had those frustrations. Mom is home, and I know she’s getting the care she needs. There are times I feel I’m in over my head, especially in the past two weeks with Mom having one foot on earth and one in heaven. As she’s nearing the end, I’ve taken great comfort in knowing that she’s where she wanted to be. Home is good!
    I’ll be thinking of you, and praying that it all goes smoothly.

    • Trish

      Thank you, Shandi. Everyone here who cares for their loved one at home is an inspiration to me and I hope to be able to live up to your great example of a caregiver. A facility may again be in Robert’s future but I know I have to give this a go right now. Thank you for taking the time (especially now) to read and lend your support.

  2. Jane


    I for one, think that you are making the right decision. I know you said that his health has declined and maybe this will be good for him and he will improve or at least stay stable.

    If you know that you are doing the right thing than don’t second guess yourself. Robert is so lucky to have such an awesome sister as yourself.

    Keep us updated on the progress. I’m sure Robert will be so excited.

    Jane ~ mom to Nicole, 16 yo. VSD, PAH, Eisenmengers, EDS
    Troubles are often the tools by which God fashions us for better things.

    • Trish

      Jane, I have this nagging feeling in the back of my mind that his decline is partly due to being in New Home. Having him home will allow me to truly assess his needs and condition and maybe regain some of the footing we’ve lost. You know I’ll update you! I need everyone here. :-)

  3. Avatar of KathyKathy

    Oh Trish!!

    Trish is so exciting! And I’m sure a little nerve wracking.
    When your heart says it’s a good thing, don’t second guess it.
    And if the time for change should come you will know that too.

    What a blessing you are in Roberts life.
    And what a blessing, and a challenge at times, he will be to you and your family.

    I can speak this just from my own experience of having my brother in law 4 months of every year and the positive impact he has had on our own family.

    And just perhaps, you may get an opportunity to win a card game or 2 ;-)

    • Trish

      Love how you always look at the bright side, Kathy!! I didn’t even think of the opportunity for wins. :-) I’ll be looking to you for guidance and support so I hope you’re ready!

  4. G-J

    Good for you, Trish! I heard you talk about this on Saturday’s show. Although it will come with challenges, I think this arrangement will make you feel much more comfortable. It sounds like a good arrangement for everyone.

  5. Sharon

    Good for you, Trish. I admire your dedication to your brother. I hope this arrangement works really well for your family and Robert. I bet Robert will be excited!

  6. Avatar of JenniferJennifer

    Sometimes the dawning realization of what changes may bring actually does reveal the “dawn” of a brighter period, doesn’t it?
    Good luck with the garage conversion plan – I’ve seen this work wonderfully well for others!

  7. Avatar of DeniseDenise

    Hi–Hurray! I can hear the comfort and peace in your words with this decision. And, your last sentence says it all. So glad for all of you!!

  8. Bette

    Hi Trish,

    This sounds like a good decision for each of you. It also sounds like your family is behind you which will definitely be a comfort and support to you later on. Keep involving them (over and over) I’ve learned (through Denise’s coaching) that this is very important for everyone in the house.

    As you know, we’ve had some bumps on our trip – last night, Abrah came over to me after I had got off the phone with our friend in PA – she gave me a hug and said, “mom, you’re doing a good job”–meant the world to me and makes the “team” we each have feel more real.

    Thinking of you with the transition. We converted our garage in our last house, into a LR, bedroom, kitchenette and bathroom for my mother. A hallway created as entering my mother’s LR, created a bit of privacy needed at that time…just a thought – Take Care Trish.


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