Thursday, July 14, 2011

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.


Franziska San Pedro said...

You are one strong and determined woman! I admire your strength, love and dedication to you your brother. I am wishing you all the best with your plans. It is amazing how you see the benefits of having him living with you and how your sense of humor doesn't let you down.
I raise my hat to you. Thank you for sharing with us and having us with you on your journey,

Franziska San Pedro
The Abstract Impressionist Artress

Louise Edington said...

You are SUCH an amazing woman and I am so full of admiration for your devotion to your brother. He is a very lucky guy to have you! I'm sure it won't be an easy path but far less heart breaking than dealing with below par services in the other homes. And holidays? Do some places just do respite care?
Louise Edington
Fabulous and Fearless

June Sockol said...

It can be hard to move in a family member with issues. I'm glad your family is being so supportive. Like you said, it doesn't have to be permanent if it doesn't work out for everyone.

You mentioned that Robert is a client of the Regional Center? My 9yr son is autistic and had services early on with the Regional Center. They offered to pay for a sitter if I found someone who was not a family member. I know my son is still a child but it may be worth talking to them and seeing if they can help either pay for someone to help you out or if they can offer referrals.

Are you or your husband handy around the house? If you convert the garage, can you do some of the work, painting, etc. Also, can you barter with a contractor to lower the cost? I had a neighbor who installed carpets. He got a van for his family in exchange for a carpet job (instead of getting paid).

Trish Hughes Kreis said...

June, I really appreciate your perspective and suggestions. My parents didn't take advantage of the Regional Center so Robert didn't get involved with them until just late last year! It's not easy to get an adult approved (getting middle school and high school records after 30 yrs? Fun!). Anyway, I'm still figuring out the services they provide and will ask them about respite care or a "sitter." My hubby and his brothers are handy so that should help with the conversion. The shower/toilet install will be the challenge. Thanks again for commenting. I'll keep you updated on our progress.

Trish Hughes Kreis said...

Louise, I appreciate your kind comments. I'm now familiar with a lot of caregivers and these (mostly) women do so much for their spouse/parent/child and they are all amazing (much more than I feel about what I do). I definitely need to find a person or two to rely on when we need a break. The regional center will probably be a resource as June suggested as well as a home health agency (although that gets expensive). A lot of this is a bunch of planning and a lot of hope & faith that things will work out. You're so busy right now so you reading & commenting means a lot to me. Thanks, Louise.

Trish Hughes Kreis said...

Franziska, The support from our group (this is for Louise and June and everyone else too) means so much to me and gives me strength. I'm happy we're all on this journey together!

Heidi Alberti & Atticus Uncensored said...

Wow, Trish --- this is a big undertaking! But I know you will rise to the challenge, and Robert will be better for it. As others have said, you are such an amazing and admirable woman!! I know this decision wasn't easy, but now that you've made it I Know you will serve brilliantly as Robert's "home mother" --- so much better than those cranky nurse Ratchet's you've had to deal with.
I love June's suggestions about cutting costs with doing some of the work yourselves. I (seriously) enjoy interior painting (probably the only home improvement skill I have) so if you need help, I'm here for you. Heck, you treated me to lunch a few weeks ago --- I owe you something!!
one question.... "brown sugar" -- really? your hair is Gorgeous but I detected red tones & I didn't know brown sugar could be red!! lol :)
Heidi & Atticus
"commentary to give you paws..."

Judy Stone-Goldman said...

Trish, Having done some out-of-home caretaking myself - although not on the order of what you do - I am aware of what a monumental undertaking this is for you. I also understand it, the desire to provide a really loving environment and to be free of hassles associated with care in facilities. I am in awe of your love and determination, and your capacity and willingness to develop your relationship with Robert over the years.

Needless to say, I will be among those eager to follow the story and keeping my fingers crossed that each obstacle that arises will be met with a solution.

I also plan to nag you (lovingly, of course) and make sure you are taking care of yourself, too!

Judy Stone-Goldman
The Reflective Writer
Personal-Professional Balance Through Writing

Fiona Stolze said...

Trish, what an amazing turn of events. But I know these decisions come from the heart, so you know completely that this is the right thing no matter how things may look. When you are in the flow, everything just naturally resolves itself. I can really sense your excitement at this decision and that alone is a sign that you are doing the right thing for everyone.

What a beautiful gift you are sharing with Robert. What an act of love. Bless you. x

Fiona Stolze
Inspired Art and Living

Trish Hughes Kreis said...

Fiona, You are so right about the "flow." I don't have all the logistics worked out but I have complete faith that I am on the right path and doors will open as I move along it (even it may seem they won't right now). I have to tell you that the guidance you give through your blog, tweets, etc. seems to speak directly to me and more than one "tweet" has motivated me to action in this matter and others. I can't thank you enough for being on the path with me.

Trish Hughes Kreis said...

Judy, I hope you do make me accountable for taking care of myself! I have gotten much better about that over the years (although I still need to exercise and eat better) but I don't want the things I do to mentally recharge to disappear. That may seem selfish but I believe caregivers have to take care of themselves or we are not going to do anyone any good. I appreciate you being here for me!

Trish Hughes Kreis said...

Heidi, "Home mother" -- Love it!! I definitely feel that way sometimes when I have to remind Robert to listen when he gets stubborn or tell him to eat in smaller bites. :-) I will not turn down help so I will let you know if painting help is needed (although I would owe you several more lunches. I know you loved that restaurant -- is that what you're angling for? LOL!). As far as my hair color . . . it's one thing I tend to change so think I'm a little darker than the last time we met. Keep your paintbrush handy -- I'll talk to you soon.

bccmee said...

Congratulations on your big decision. It definitely sounds like the right choice for the time being, and as you said, this need not be permanent. Robert's quality of life will most certainly improve.

Have fun with all the logistics! I'm only guessing, but you seem the type who has mad organizational abilities. Keep us posted!

Julie Labes said...

My mom has to have caregivers in the Uk as she is unable to take care of herself, this was the only option for us as she was determined to stay in her own home. She stayed with us for a while in Florida but she wants to be in her own town in her own home. and luckily we were able to do that. it is a wonderful thing you are dong for your bother.

Laine D said...

Crying tears of pride Trish! I know that you have wrestled with this situation not whether you want to take of Robert but whether you can give him the necessary level of care.

Perhaps if you make him a ward of the court you would still be able to get the Medi-Cal benefits?

I think its the difference between a life and an existence for Robert and hopefully will reduce your stress level at the same time.

Wow you inspire me every time!
Beautiful! You and your decision.

Laine D.
"Aspire to Inspire"

Trish Hughes Kreis said...

Beautifully put, Laine! "the difference between a life and an existence." That is exactly why I want to do this. Robert is "housed" right now and I want him to feel as if he lives at home. I want to put the "care" back in "board and care!" :-)

Trish Hughes Kreis said...

Julie, Thanks so much for sharing your experience. Caregiving comes in all different shapes & sizes and it sounds like you did exactly the right thing - following your mom's wishes. As you found, caregiving needs & situations change which I expect to happen with Robert, too. We just have to take each situation as they come and do the best we can!

Trish Hughes Kreis said...

BccMee, You should play the lotto because you are a very good guesser! LOL. Yes, I am a bit on the organized side. :-) I appreciate your comments and we are just going to do the best we can until it no longer works for Robert. I think he'll be pretty happy, though!

Joan Oliver Emmer said...

I LOVE the fact that you have such a supportive family, worrying about how this is going to affect YOU, not just them. I truly admire you for your the selflessness you display towards your brother. You will be paid back in spades. Keep us informed how it all goes!

Trish Hughes Kreis said...

Thank you so much, Joan! You know I'll be visiting for some comic relief when things get tough. :-)