Advertisement
Don't miss:
Home > Blogs > Caring for Siblings > Burying the Lead

Burying the Lead

Back CameraRobert has lived in New Home for two years.

Before that, beginning in 2009, he lived in an assisted living facility for older adults (he had an exemption since he was under 50 years old) for two years.

In the last part of 2008 and early part of 2009, Robert had a long-term stay in a hospital due to a life-threatening infection which was perilously close to invading his brain. Robert had been in a study at UC San Francisco for the Deep Brain Stimulator and the piece in his chest had become infected. That piece of the device was removed but the leads going deep into the brain remained, in the hopes he could continue in the study. (We later learned Robert was in the “active” group and the DBS was actually helping to control his seizures).

The infection returned with a vengeance and since these leads were a pipeline directly into the brain for this infection, Robert underwent emergency surgery to remove them.

Before these events and recurring infections, Robert had lived independently (with some family oversight and a live-in companion) for many years.

Once he recovered from the infection (which took a couple of months of intravenous antibiotics and a stay at a skilled nursing facility), a decision needed to be made about his living situation.

It was a difficult decision but one which had to be made.

Caregiving is a series of decisions. How serious is the infection? Does he need to go to the ER? Where should Robert stay while he is on the intravenous antibiotics?  Will it be safe for him to live independently again? Which skilled nursing facility is the best fit for him? Should he be moved from his home an hour and a half away to a facility closer to me and my family?

And that was in the first few months of caring for Robert.

Deep end of the pool – meet Robert’s Sister.  Sink or swim – go!

The decisions have not stopped since then but I’ve become more accustomed to fielding them. The placement decision is one I haven’t ever been completely happy with. I did all the right things when searching for facilities for him: created checklists, conducted interviews, had Robert visit the facilities, but there were always one or two (or several) issues that I had to deal with during his stays at the facilities.

I never found him the perfect home.

My husband and I thought a solution would be to turn our garage into a bedroom for Robert. That wasn’t as easy as it seemed (although my city is now aware they have a “Reasonable Accommodation”  code which, by law, they have to follow).

Reluctantly, due to construction issues and costs, we gave up on that idea and I resigned myself to Robert living at a facility 40 minutes from my house with a few people on staff I had issues with. (I’m not normally a difficult person but when the nurse tries to change Robert’s medication schedule because it will be easier for her, then I become quite difficult).

I decided Robert would live with us on the weekends. We didn’t have a room but we have a sofa sleeper and a freezer full of Rocky Road ice cream.  Robert enjoyed his visits (and ice cream) from Saturday morning through Monday morning (and all holidays) and we enjoyed his company.

Until I was informed we were allowed to have only 73 overnight visits a year (unless we paid a ridiculous amount of money to have him stay with us).  I had about 20 days left in the year when told this in the middle of summer – and we hadn’t hit any of the major holidays!

Super.

During this time, the issues at New Home were really piling up. I had to find a doctor for Robert not affiliated with New Home because their doctor was incompetent (and I do not say that arbitrarily). The previous House Manager didn’t order briefs timely so Robert ran out (and she called me for assistance).  Seizure logs were not accurately kept and, worse, suspiciously looked made up when I did get them.

Nurse Ratchet (who was amazingly still employed by New Home) was not doing her job and neglected to prepare the proper paperwork for Robert’s new doctor in order for him to get his medication – creating extra work for everyone else. (She was eventually let go after three of these incidents).

Fortunately, the floor staff were all wonderful and I could count on them to keep me apprised of anything going on with Robert.

Management changes were made (thank you!) but I still was not completely satisfied with Robert’s care.

I created a pros/cons list of Robert living with us. He wouldn’t have his own room but he was comfortable enough on the weekends so that didn’t seem to matter. He needed to have his social needs met but his Regional Center confirmed he could keep going to the same Day Program if he lived with us. I would have to keep track of his medications and incontinent supplies which actually terrifies me but, as my best friend said, “You can’t do any worse than his care facility did.”

So true.

For months, my husband and I discussed Robert living with us. We reviewed the pros/cons list over and over. We discussed the idea some more.

Then I picked Robert up at New Home and, as we walked out the door, I noticed a used brief stuck halfway inside his jeans and the other half sticking out over the top of his waist band. I changed his pants (he was wearing his own brief so I have no idea where the other brief came from unless it was his nighttime brief) but he had a terrible rash from where it had been against his skin.

A limit of 73 Days. Incompetent doctor.  Self-centered nurse. Running out of supplies.

The Dirty Brief Incident.

It was too much. This seriously put me over the edge.

My husband and I asked Robert if he would like to live with us and he said yes. He hesitated when I asked him if he would miss his roommate so that means, “yes” but I’ve already asked New Home if I can contact his roommate’s mom so they can visit each other. The Wonderful New House Manager has offered to help care for Robert if we need her and she said we could bring Robert to visit his old roommate.

We don’t have a definite move-in date yet but it will be sometime in April. (I just have to make sure his medication is transferred seamlessly).

I suggest you buy stock in whoever makes Rocky Road ice cream!

(Now that’s how you bury a lead).

About Trish

Avatar of 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!)

7 comments

  1. Avatar of ejourneys

    Trish, this is so exciting! You prepared yourselves as best you could, dotted every i and crossed every t that you could find, and were ready to make the leap when it was time. (Oy about the Dirty Briefs incident!)

    I’m curious as to what terrifies you about keeping track of his meds and supplies. I use Excel spreadsheets for keeping track of just about everything. Please let me know if I can be of any help!

    • Avatar of Trish

      Ejourneys, Isn’t it odd that I am so fearful about the meds & briefs? I also use Excel to keep track of everything and am very confident in my ability to do so. BUT, I’ve never kept track of his meds before. I’ve never had to order them and the consequences of him running out are severe. The briefs – okay, I can run up to CVS if I don’t order them on time so that’s not a huge deal. The meds? Yikes! I think once I do this once or twice, I’ll be fine. It boils down to the fear of the unknown. When I took over his care, I didn’t know what I was doing but it all happened so fast I didn’t have time to be fearful. I only recently realized how fearful I really was about the meds so I think I’ll have to write more about that aspect of the decision.

      It’s so nice to have the support from everyone here – that will be extremely reassuring & helpful.

  2. Avatar of EllysGdaughter

    Trish! I can understand how exciting and terrifying this is all at the same time. Hurray for Robert who will feel more loved and cared for as he relaxes into this transition! April is a great time for moves and the support you already have from the Wonderful New House Manager is such a blessing! I wish you well! I love Rocky Road Ice Cream so I think of Robert every time I have some and smile!

    • Avatar of Trish

      How sweet you are, @EllysGdaughter! It is definitely a whole bunch of emotions all wrapped into one. I’ll keep everyone posted on what happens . I have a feeling my emotions will be like a roller coaster for a while!

  3. Avatar of Teresa

    I am so happy Robert will be living with you and your family! After everyone adjusts, all of you will be so relieved! You will not have to stress about any self-centered nurses or gasp, the brief incident! Do not fear about incontinence supplies or medication regimes. We all have tips, suggestions, etc. In no time you will have it all down. Besides, you know you are an amazing woman, right?

  4. Avatar of G-J

    Trish, you will be great at handling Robert’s meds and briefs! How are Robert’s prescriptions ordered? Are they through the mail or at a local pharmacy? I’ve handled my Dad’s prescriptions which were ordered through a combination of mail order pharmacy and the Target pharmacy, and Steve’s prescriptions which are through Target. I’m happy to offer you some advice.

    Although you will still face challenges, I think it will be much more convenient having Robert live with you in your home.

    You’ll be great!

  5. Still working toward a website. But that is a good thing. 5 years ago I made a decision after multiple problems such as yours, with incomptetent, unnecessary dangers, and inappropriate care of my husband. We ended up with severe fungual infection in the groin from improper hygene,a shunt not being placed when needed which has left my husband now with a brain stem injury that caused central apnea( The hospital insists this was the right protocol)and them multiple hospital borne illnesses (MRSA and a severe enterobacter infection in the bladder)I was told by one facility he should never eat, drink or speak because of the vocal and swallow issues, which I refused and found a provider on my own to help him. Today he eats, talks all day, and while drinking is limited he takes small sips. I hydrate him still through the stomach tube. There was little is any support for him, I have has to do almost everything on my own. But I have managed to get some of the things I needed by having a small fund raiser and from the kindness of others who have been through the same thing.

Leave a Reply

Your email address will not be published. Required fields are marked *

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Comment moderation is enabled. Your comment may take some time to appear.