Preparation for Respite Weekend

Respite Weekend was a definite success but getting here was no easy feat!

Even though we are officially “entitled” to twelve respite nights per year from Robert’s social services agency, we have not even come close to taking advantage of that.  

Dropping Robert at respite. 

It isn’t even all our fault.  The social worker flat out told us that, yes, we are “entitled” to twelve nights (and I put that word in quotes because I pretty much hate the concept of being entitled to anything but that’s what they call it).  However, there are fewer and fewer care homes that are open to taking clients for respite.  These facilities make their money on permanent residents so the availability for a few respite days in a dwindling field of options is slim. 

We lucked out, though.  We were flexible with our weekend and it only took six weeks to find a facility that was able to care for Robert’s growing needs. 

Step one, complete.

Time to visit the facility. This usually would include all three of us but on the day it was set up, Robert was going into a tailspin from his new medication.  So, party of one (me) visited the facility. The staff was nice; the owner answered all my questions; it was quiet and clean. Robert would even have his own room which was an added bonus.

Step two, complete.

Next, there was the paperwork. No problem!  I can slay paperwork with two hands tied behind my back (yep, that’s me typing with my nose). 

Paperwork for the social services agency and paperwork for the care facility – done and done.

Step three, complete.

Time to send the care facility my “Getting to know Robert” document and his one page summary sheet.  Both of which are meant to avoid any medication or behavior confusion or problems. Information such as “He prefers to be called Robert and will remind you of that if he is called anything else” and “Robert loves to brush his hair and shave and would do so several times a day if given a chance” as well as a breakdown of our usual schedule and medication dispense times are included. 

(Updating this document was actually surprisingly sad. The last time we had taken Robert for respite was May 2014 when we repainted our house before selling it. Robert was still using a walker full-time and even dressed himself with just a little assistance from me. He now uses a wheelchair, only using the walker for short distances and he needs almost complete assistance dressing. The decline is much more dramatic than I would have thought if I hadn’t read it myself!) 

Unintentionally, these documents raised more questions for the facility than they answered. He uses oxygen at night which caused all kinds of concern and created a lot more paperwork. “Oh! I didn’t know he used oxygen!” “We need a special form for the oxygen use!” Somehow the case manager hadn’t relayed the information about Robert needing oxygen to the care facility. Argh! Coincidentally and something of a miracle, Robert had a pre-scheduled pulmonary appointment a few days before going to respite. The facility sent over a form for the doctor to sign regarding the oxygen plan and the social services agency sent me over a form for the doctor to sign. Hashtag overkill! (I hope I didn’t say that out loud.)

Out of the blue, the new pulmonary doctor decided to try out a different oxygen plan – let’s discontinue the oxygen for a trial period.  He doesn’t want Robert on oxygen at night because he thinks it actually may cause more breathing problems instead of helping him.

Fantastic. Can you please write that down and sign here? And here?

Step four, complete.

Laundry, packing, counting medications and re-counting medications, completing the medication form, loading briefs and disposable pads were next. Whether Robert goes for three nights or seven, the amount of supplies he needs would supply a small village. A very incontinent, small village.

Or fill a small Jetta.

Step five, complete.

The easiest step was dropping Robert off.  He is such a good sport and makes friends so easily!  One of the staff members actually knew Robert from his time living at the Board and Care Home. Everywhere Robert goes, someone seems to know him. He delights in this sort of “celebrity.” 

While I finished signing more paperwork (I am not kidding), Richard ran to the store to get some chocolate ice cream. We couldn’t bring Rocky Road because someone in the house has a nut allergy but I am sure Robert was just as happy with the chocolate.

Richard and I said our goodbyes to Robert and he smiled and said, “God Bless You.”

Step six, complete.

After all this, I really did need respite!

Respite Weekend: Declared a Success!

Getting to respite was not easy but let’s not focus on that.  (You can read about that on Tuesday.)

Today we are jumping for joy because respite weekend happened and it was a resounding success!

Sure, my plans for respite looked like this in my head:

See a couple of movies;

Go out to eat several times;

Sleep in;

Catch up on writing;

Work on the caregiving book I am creating with some caregiving friends;

Submit two articles;

Redesign/refresh the blog;

Fully clean the house;

Unpack all the rest of our moving boxes;

Reorganize my closet;

Go shopping for new boots;

Catch up with Other Brother;

Finish organizing our trip to Disneyland for Epilepsy Awareness Day at Disneyland;

Laundry;

Do my nails;

Get a massage;

What my weekend actually looked like:

Saw one movie (The Martian – amazing, funny, heartwarming and worth it!);

Ate dinner out (or brought it in) every night. Ate leftovers during the day;

Woke up at the usual time because my cat is used to eating at that time and is, well, persistent;

Did some writing (you’re reading it);

Worked on the book (yay);

Updated a small section of the blog. Okay, I revised my blog list on my blog. It counts;

Swept two rooms of the house;

Watched Richard move the full boxes from the living room to the garage;

Organized one corner of my closet. Okay, it’s a very tiny corner. Oh, alright. It was just organizing my unmentionables;

Thought about shopping for boots. (A lot);

Thought about Other Brother. (Not as much as the boots);

Bought t-shirts for Epilepsy Awareness Day at Disneyland;

I think I did a load of laundry;

Oops, forgot about my nails;

Got a massage (90 minutes long! Someone is spoil-ed!)

Richard and I even held hands walking to dinner and the movie! We never get to do that since one of us is always pushing a wheelchair.

Yep.  It was a success!

I admit, I was a little worried about Robert and I didn’t intend to call to check up on him but I did.  I was slightly worried about him since he still has a cough, he is “due” for a seizure cluster and he also has what looks like a boil on his shoulder which I haven’t taken him to the doctor for yet. 

(Do you know why I haven’t yet taken him in?  Confession! Because I was worried it might interfere with respite. Bad sister! But seriously, I didn’t want to add any medications to the list and knew this was not a life-threatening skin problem. Don’t worry - he will see a doctor about it next week if it hasn’t cleared up.)

Robert was enjoying lunch when I called and had slept in until noon.  Sounds like he is having an excellent weekend! 

I pick Robert up in the morning and am excited to hear all about his weekend. 

I feel refreshed and happy with what I did accomplish this weekend, the time spent with Richard and the ability to just turn off the medication alarms on my phone.  Even if my cat wouldn’t allow me to sleep in, it was nice not to be tied to the medication schedule.

Yes, success!

I wonder if the shoe store is still open . . .

Oh God! We’re Talking About Sex and Caregiving

I am seriously uncomfortable talking about sex. To me, this is something that is private and should never be discussed. Ever. Not in a million years. Well, okay, that is an exaggeration.  Of course I talked about sex with the kids – heck, even around the dinner table. But certainly not in every day casual conversation or on a public blog!

And, yet, here we are.

Talking about sex.

Caregivers handle a variety of tasks, problems and situations. We wipe bottoms, change wet adult briefs, give baths, clean wounds, fight with social service agencies and insurance companies, provide special diets, find the right living situation or day programs, shuttle to and from numerous doctor/specialist/lab/imaging appointments, manage medications and do the best we can to keep our caree happy, healthy and safe.

And many have to navigate the delicate subject of sex and their caree.

Count me in that group now.

We recently changed Robert’s medication in order to get better seizure control and bring his ammonia level down. One of the side-effects of a high ammonia level is excessive sleepiness. Robert wouldn’t admit to sleepiness yet would fall asleep at the drop of a hat.

The neurologist’s nurse practitioner (the person we usually see at the appointments and who is terrific), agreed that sleeping through life was no way to live.

We decided to try something new even though I loathe medication changes. There is ALWAYS a problem. However, the high ammonia level was concerning as was his seizure clusters.

The neurologist’s NP reduced his Depakote which was the cause of the high ammonia levels and added a recently FDA approved drug, Fycompa. The change was dramatic! The seizures are few and far between and his ammonia level is going in the right direction. Robert is awake although still requires a great deal of sleep. 

At first we did not have any of the difficult side-effects of a medication change. I even sent a note to the neurologist’s NP exalting the miracle of this new drug regimen! Robert was awake, there was not a terrible change in his personality as there was with the Trileptal nor did his balance seem affected at first as it was with Vimpat.

Robert started out slow on the drug (only 2 mg in the evening) and then it was increased to 4 mg in the evening. Soon after the increase to 4 mg, Robert developed a terrible cough and I assumed he was headed toward pneumonia. He could barely walk as his balance was completely off and his legs seemed weak. As he walked he sank as if he was going to sit down. It appeared he had no strength in his legs and he needed a lot more sleep. I also noticed a huge increase in his water retention making his feet look like clubs!

He had the usual symptoms of when he is headed toward pneumonia (terrible cough and problems walking) but his pulse rate was not consistently high, his cough was not producing any mucus, his blood pressure went a little low but not “look out for sepsis low” and his oxygen level was only marginally lower than normal. His temperature was also normal but this is not unusual for him, even with pneumonia (it is also common for the elderly not to run a fever with pneumonia).

However, I was confused. Even though some symptoms indicated he was headed toward pneumonia, it was without the usual consistently high pulse and colorful mucus.

He also seemed to be developing a yeast infection on his penis because he was frequently rubbing it when going to the bathroom. His penis was red and he said it itched and was slightly painful. During this same weekend, he also started on a strong dose of antibiotics for the pneumonia symptoms. I was certain these couldn’t have caused a yeast infection since the “itching” started before he was on the antibiotics.

A few days after starting the antibiotics, Robert was difficult to wake up for his Day Program. He was groggy, slurring his words, and couldn’t keep his eyes open. An altered mental state and difficulty waking is just one symptom of sepsis and since his pneumonia and sepsis seem to go together like peanut butter and jelly, Richard and I made the decision to send him to the ER.

Robert during his recent visit to the ER

After spending an excruciating 10 hours in the ER and checking for a UTI, pneumonia and any other type of infection, as well as blood clots (because of his severe edema), and describing a possible penis problem (I have never had to say “penis” more often than during that visit), we were sent home with Lasix and a yeast infection cream. 

Almost immediately, the Lasix did the trick with his edema. The cough, the balance issues and what I started to refer to as the “PP” (penis problem), persisted. I checked in with the neurologist’s NP and she suggested the problems were due to the Fycompa. As with many anti-epileptic drugs, balance can be affected as can the mucus membranes. Within two days of taking him off the Fycompa, Robert’s cough all but cleared up and he was walking with much less difficulty.

Yet, Robert continued rubbing his penis.

Oh. Ewww. God.

I slowly realized there was not a yeast infection problem but Robert was engaging in a behavior rivaling any teenage boy.

Please hold while I check my caregiving manual. Nope. Not in there. 

Seriously? Robert is more awake now that his ammonia level is going down but this is what he wants to do with his time?

Oh. My. God.

Once Richard and I realized what was going on, we also realized this was happening for hours at a time. No wonder he was so sleepy in the morning! We realized this wasn’t just about newly awakened feelings but appeared to be a compulsion.

After some research, I found that epilepsy in the temporal lobe region can cause hyper-religiosity and hyper-sexuality. For some reason – perhaps the new medication, the reduction in the Depakote, a change in his seizure activity – something is causing Robert to have this sexual compulsion which is affecting his daily life.

And now mine!

As a caregiver, it is affecting my ability to care for him in several ways.

First is my extreme discomfort with this behavior. I have seen Robert have similar impulse control issues when he was a teenager and I am not very comfortable reliving this behavior. It became so bad thirty-plus years ago that Robert actually tried to sexually attack me when we were alone in my dad’s apartment. Robert seemed in a trance-like state as he came toward me when I was in bed and I had to physically punch him in the nose and run out of our dad’s apartment in order to get away from him. Our family went through much hand-wringing and had many family meetings about what to do with Robert at the time. Should he be placed in a group home? Why is he doing this? What should be done? 

The solution was for me to cease contact with Robert for at least several months and, as far as I know, Robert’s medication was changed. He and I never talked about it again.

It was a terrible time in our family history which I am sure is what is contributing to my extreme discomfort with this current situation.

Richard and I also have cameras in the house so if we are not in the same room as Robert we can still keep an eye on him and monitor any seizure activity. This is how we came to realize what was going on.

Ack. The things I cannot unsee!

Obviously, we can no longer monitor the camera in Robert’s room once he goes to bed. I am sure we are missing seizure activity.

Another concern for me is a lack of sleep is a seizure trigger for Robert. While we have not yet seen an increase in seizure activity since he has gone off the Fycompa, I expect it at any time. The lower dose of Depakote and the lack of sleep is a recipe for a seizure cluster if I ever saw one.

While we sort through Robert’s new behavior with his neurologist to determine if this is neurological, medication or seizure-activity related, the reality is that caregivers do sometimes have to deal with the sexual side of their carees.

This could be a loss of sexual intimacy between partners or spouses when one is caring for the other; a son or daughter might have to deal with this issue with their opposite sex, still sexually active parent and assisted living facilities may have situations come up between residents as well.

While this particular situation is a challenge for me right now, it is one of the many challenging aspects of caregiving. No matter what new challenges are presented to caregivers, they are met with research, conferences with doctors, possible medication changes and fierce tenacity.

Generally, I would add patience to that list but find myself currently challenged in that regard.

For me, even when my patience is waning I know that my persistence in finding a solution will get us through whatever challenge we face.

When a caregiver sees a new behavior – regardless of what that is or how uncomfortable we are with it – we have to figure out what is causing that new behavior, how serious of a problem it is and if it is affecting quality of life. I may have to eventually accept Robert’s new-found activity as a “new normal” but I won’t until I have ruled out that it is not indicative of a serious neurological problem.

Phew, we got through this! Talking about sex and caregiving wasn’t so bad after all was it?