Diving into 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.