When a Loved One is in a Rehab Hospital: Part 1

This post is about a rehab hospital for physical rehab, not drug addiction.

I spent the last several weeks in Virginia caring for my father, who had a brain injury after surgery. He remains in a rehab hospital, which is like a skilled nursing facility (SNF, also called a "snif") except that patients must participate in about 3 hours of therapy a day.

The types of therapy are Physical Therapy, Occupational Therapy, and Speech Therapy. Not everyone needs all three, but my father does. Physical Therapy (PT) concentrates on basic physical skills like walking, balance, getting in and out of a car, climbing stairs, etc. Occupational Therapy (OT) often works with PT and concentrates on activities that a person needs to take care of themselves, such as combing hair, brushing teeth, shaving (men), etc. Speech therapy (ST) concentrates on talking, swallowing, coughing, and some cognitive skills.

In the case of my Dad, he lost the ability to swallow safely and is currently being fed by a feeding tube in his belly. We didn't want to him to get the tube, but it came to the point where he had no other way to get adequate nutrition. The problem with his swallow is that the muscles in his throat and soft palate aren't completely closing off his trachea when he swallows. That means he inhales whatever he is trying to eat. Then he coughs - but he may not cough out everything and wind up with pneumonia. Not good.

I learned a lot while I supervised Dad's care and visited the rehab hospital. I thought I'd share some of my knowledge with the blogosphere. When this happens in your family, you may not know where to start, and you may be afraid that you won't know what to do.  My tips may not answer all of your questions, but maybe you can find a few gems that work for you.

Communication Among the Team

Our healthcare system cannot communicate within itself well. As your loved one's advocate and spokesperson, it is in your best interest to make sure communication happens correctly. Here are things you should know:

• Do not assume that team members talk to each other. If you tell the physical therapist something, don't expect the nurse, the occupational therapist, the care coordinators, or anyone else to have been told. 
• Expect to communicate with each team member the same thing individually.
• Remember that nurses and aides work in shifts and every day your loved one may have someone new assigned. So, you'll have to tell them, too. 
• Confirm and reconfirm. If they schedule a test for your family member, verify the date, time, and location. If it's an outside location, call them yourself and verify they are expecting your family member. 
• Expect to have to ask twice or more for something for your loved one.
• You don't have to be mean or rude about it. Your care team is very busy and has a hundred things on their minds. They forget. They get pulled aside. They get involved in the latest emergency.
• When they do follow through, thank them. Tell them whatever they did really helped (example: "Thanks for giving Dad a shave! He looks great!"). 
• Coordination of Care:
• Don't expect anyone to know the "big picture" for your loved one. Most team members are focused on a certain aspect of their care. There usually is a care coordinator assigned to your loved one who is supposed to do that, but they usually are responsible for an unrealistically large number of patients. They would like to develop and carry out a personalized care plan, but it just doesn't happen the way we would like. 
• As your loved one's advocate, you have the best view of the big picture. Use this perspective to establish goals in your mind about what should be accomplished, then direct the therapy to meet those goals.  
• Example: you will probably be driving your loved one somewhere in the future. Make sure Physical Therapy enables your family member to get in and out of a car - increases strength, teaches them the steps to get in a car safely, and practices it with them.
• Not everyone at the facility knows up-to-date information about your loved one. If something changes, you might have to prompt for changes in care. 
• Example: When my Dad first came to the facility, he really couldn't get out of bed on his own. Upon arrival, his dietary needs were assessed by a dietitian who set the number of calories he needed to maintain his weight and support his bodily functions. That established how much nutrition he received by his tube feedings.
• Four weeks later, Dad had improved significantly and was much more mobile. As a result, he was burning more calories walking around the facility and working harder in physical therapy. However, no one reevaluated his dietary needs given his increased activity, and the calorie intake remained the same. He lost weight - not a good thing for Dad, as he's pretty thin.  I had to request an updated assessment by the dietitian given his improved mobility. 
• A few days later, I asked to make sure it had been done and he was getting more nutrition. Just covering my bases. 

The facility where my Dad is located is actually pretty good. They have the right goals, the maintain the place well, and the employees are generally caring, conscientious people trying to do the best for their patients. However, the system interferes with providing the kind of care we think happens. If you want the best for your loved one, you will need to watch for potential oversights and act accordingly. 

Family Lore

Every family has their little legends and inside jokes. Usually they're totally goofy and people outside the family, like spouses, think you are completely nuts. Here's one I had almost forgotten about! I remembered the saying but couldn't remember the source.

This is from The Peanuts Lunchbag Cookbook. I bought it at a book fair in grade school in the 1970s. Peanuts comics were very popular back then.

My sister and I use the phrase "I think I'll flap my arms and fly to the moon" whenever we are making statements that seem ambitious and pleasant, but are impractical or impossible. Example:

You know, if I tried hard enough and trained, I could run a marathon.
Yeah. I think I'll flap my arms and fly to the moon.

I found the little book while cleaning out my parents' house, and I have to keep it. There are some other sarcastic gems in the book...this is one reason why my sense of humor is as warped as it is.

The secret to professional wallpaper removal

As I prep my father's house for painting, in anticipation of its sale, I have had the "pleasure" of removing the wallpaper from three rooms. Naturally, Mom and Dad had chosen the most complicated rooms in a house for wallpaper: bathrooms. Two of the three rooms are in the master bath and the third is the guest bath.  Bathrooms are "fun" because there are things to work around (tubs, toilets, sinks) and usually there are things attached to the walls (toilet roll holders, shelves, towel bars) that you have to take down,

For anyone who has taken down wallpaper, you know what drudgery it is.

I am never. Never. NEVER. putting up wallpaper. It's like a bridesmaid dress - no matter how "classic" the design, no matter what the bride tells you, you are never wearing that thing again. Eventually, the wall paper will be out of style and it's a pain in the ass to take down. Paint is so much more manageable.

Nevertheless, I'm taking this stuff down at Mom and Dad's place because today's buyer prefers neutral walls. And, the wallpaper was showing its age, with obvious seams and dinginess. The ability to take down wallpaper "easily" or not completely depends on how it was put up. Likely, if you're taking down wallpaper, you had no say in how it was put up in the first place. Cross your fingers!

Here's how I did it, and I got professional results with very clean walls. Accordingly, minimal prep for painting was needed. I wish I could tell you it was magic, but it's mostly hard work.

1. Pull off the top layer. 

The paper will split and leave a layer of paper stuck to the wall. The design part will come off. Hopefully, it will come off in big pieces, making your job easier. 

I did not need to use the "paper tiger" and any solvent (water or other) to get my paper off. Mostly it came off in big sheets. Depending how the paper was hung, you might have to use these tools.

2. Soak the paper briefly.

Use a small household garden sprayer - yes, silly, clean it out first before spraying your wall! Or go to Walmart and buy a cheapie. Trust me, this really helps.

Solution: 1/2 gallon of water with about 1 TBSP of Downey (free and clear) mixed in. I don't know if the Downey is necessary. I read about it somewhere on the Internet and it seemed like a good idea. Relatively cheap. It was working well for me, so I stuck with it.

Only soak one strip of paper at a time, or roughly as much paper as you think you can peel off in about 15 minutes. You don't want the paper to get too saturated, and you don't want too much water on the walls. Putting a lot of water on the wall really isn't good for drywall. You don't want to wet it, then it dries, so you have to wet it again. 

3. Wait 5-7 minutes, then peel off the paper.

Hopefully, the paper will come off in large sheets, also. Makes your job easier. 

You can use a putty knife scraper if you want to. I found it helpful to run the scraper under the paper strip as I pulled.  I bought a cheapie plastic set of scrapers at Walmart, that had three putty knives in different widths. The problem with metal is that it can easily gouge the wall, it usually has pointy-sharp corners (more gouge risk), and it will rust if left wet. You don't want rust stains added to your clean up project.  It was nice to have a skinny one, a medium one, and a wide one. 

You only wait 5-7 minutes because if the paper gets too saturated, it falls apart too easily. You can't get the nice large sheets off in one pull. If you don't wait enough, the paste under the paper doesn't loosen enough to let go. You will find the "sweet spot" for your project.

4. Scrape off the paste from the wall.

Before you scrape, you might need to spray the wall lightly with the Downey-water solution and give it a minute to loosen up the paste. Wallpaper paste is remarkably hydrophilic. 

Use the putty knife scraper and scrape carefully but use some pressure. This process is messy. I used lots of paper towels to wipe off the scraper (putty knife) between passes.  Be careful in corners, at edges, or holes in the wall (like from a drywall fastener). You don't want to gouge the wall or rip the paper on your drywall, if you can avoid it. Some will happen, and that's life. You'll have to patch it before you paint, that's all. 

5. Wet a few plastic pot scrubbers and lightly scrub the wall to loosen the remaining paste on the wall. 

You thought you got all the paste up with the scraping, right? Wrong.  

The pot scrubbers I'm referring to are those green rectangles sold by the sponges in the supermarket. I found a three-pack worked nicely. It doesn't have to be name-brand; store brand works just fine. 

You want several of them because they quickly become saturated with paste. Once a side is saturated, turn it over and use the other side, then pick up a new one. When both sides are saturated, drop it in a bucket of water. The paste will dissolve, and you can rinse it out and use it again.

6. Scrape again.

This will get up almost all of the remaining paste. The glop you're scraping this time is more liquid-y than the previous scrape, so be ready with paper towels or rags to wipe off the scraper and your hands.  I used the wide putty knife here - fewer passes!

Notice I said "almost all of the remaining paste." The putty knife can only get so close to the wall, even with pressure. There's a thin layer of paste left. And, walls are rarely perfectly flat. 

7. Wring out a wet sponge and wipe over the cleaned area.

The sponge can get saturated with paste, too, so be sure to check and flip it over when the surface is white-ish with paste. 

Two sponges were enough to wipe down the area of a strip of wallpaper (9 foot ceilings). 

And finally, your wall is clean. Let it dry thoroughly before painting. I would still suggest a light sanding before painting. 

Have fun with your project! I'm glad it's not me doing it any more!

Follow up from January

So, 4 weeks after I came to see Dad through his surgery, I am back in central Virginia. In fact, it is currently my 3rd week here of 6. I'm on family medical leave from my job, and I am visiting Dad at the rehab hospital almost every day. We are taking the steps to move on.

This means:

1. We are getting the house ready to sell.
2. We have effectively taken over control of Dad's stuff - healthcare, money, assets, etc.
3. Dad will likely move to Kansas City to be with me. He needs someone to look after him.  

It's sad and frustrating. This wasn't how it was "supposed" to go!!! But, life is what it is, and it's better to deal with what is, rather than deny reality and wish for something else. 

I brought my dog again. Just like last time, she was a pain to travel with, but having her here has been very good for me. She forces me to get out and exercise, and as a result of taking her on walks, I have met most of Dad's neighbors. This is all good because I don't feel so alone. 

I have been peeling wallpaper and scraping the walls. We have a painter lined up to do interior painting. I have arranged for some considerable landscape cleanup work to be done. The exterior of the house looks good, and I'm slowly making progress on decluttering the living spaces house.  Every week the trash bin is filled to the top!

And, I'm taking care of Dad. I'm making sure he's getting what he needs and keeping up on the little things, like giving him shaves, making sure he has enough clothes to wear, and keeping his mind active. He's lucky.

But then it got interesting

Dad had his procedure but then had a complication from the surgery. A seizure. He had been waking up well after the surgery. His brain was irritated and let us know.

A phone call at 2:00am. Dad moved to the ICU. He stabilized and was moved to a step down unit. He stayed there for about 24 hours then moved to an acute care bed (a "regular" hospital bed).  Throughout this time, it was like he was asleep. He wouldn't open his eyes, but he would respond to questions, withdraw from pain, etc. Over the next few days his answers to questions got better, more correct. Tests showed he did not have a stroke that caused the seizure. As much as we know, we concluded that the brain irritation and a little bit of bleeding during the surgery caused the seizure.

Dad was supposed to stay over 1 night. I was only supposed to stay til Sunday. Now what?

My siblings stepped up. My brother is there now, and my sister comes next week. Then we will have to see what comes next.

My thoughts on the hospital:

• They're taking very good care of him. 
• I don't know how other families deal with such a crisis, especially if they aren't familiar with hospital procedures. The language, the concepts...it's very difficult. Add in emotional upset and stress and it's a disaster waiting to happen. It is so helpful I'm a nurse and I work in a hospital.
• We're starting to become aware of the protocols that must be followed in order to make sure Medicare will pay for my father's care. A single misstep could cause them to deny. It's going to be such fun playing this game. 
• My opinion of surgeons has not really been improved because of this experience. They aren't really accessible to the patient or family - too busy doing surgeries to deal with the day to day care of the patients who have complications from their surgeries. I think they might need to partner with another team that take over once the surgery is done.

I brought my little dog Trixie with me. It was so good to have a "therapy" dog with me! My sweet baby to come home to, take for walks, snuggle, and pet.

Traveling with the little dog was a bit of challenge. Trixie did not like being confined in the carrier and put under an airline seat. She whined and fussed, bit and dug at the carrier. On the trip home, she figured out how to open the carrier and nearly escape, the little stinker.

I'm going to have to think long and hard about taking her with me again. The visit was stressful enough without having to deal with a fussy dog.

On becoming a 'parent' to one's parents

On Saturday, two days time, I go to Virginia yet again to accompany my father through a surgery.  

We hired a caregiver for my dad last time I was there, in late October. It was a wonderfully strategic hire - now someone checks in on him and helps him remember his appointments. She assists with the legal stuff the family is trying to get done. She accompanies him to doctor's appointments. On the down side, now we know a little more just how bad is confusion and memory are. We can no longer ignore it. Clearly Dad needs help.

What to do, though? He insists on staying in Charlottesville, near no one in the family. He doesn't have friends and he doesn't belong to anything with strong social ties like a church, a club, or a senior center. He goes out and does things from time to time, but always alone.

If he moves to assisted living, his freedom will be curtailed. If he can't come and go as he pleases, then what is the benefit of staying in Charlottesville?

I am not eager for him to move here, though. My sister and brother are not keen on him moving to their home towns, either. I think any of us would step up if he stated a preference, but he does not. If he stays in Charlottesville in assisted living, none of us would see him very often. What would be the draw? No house, no place to stay for free, nothing to do with Dad, and eventually Dad will likely stop knowing who we are, so no meaningful connection.

Not that there's much of a meaningful connection now, while he still knows us.

I'm sure we'd all go see him out of obligation once in a long while. We could not be counted on for his care, entertainment, or emotional support, though. We could hire people.

It's all so sad.

There is the chance that this procedure will improve his memory and function, but I'm not holding my breath. Even if it does, though, it's merely delaying what's coming.  

One step at a time, I guess.

Hurt by Life

I have re read When Bad Things Happen to Good People. After 9/11 in the United States, this book helped me come to grips with the senselessness of the terrorist attack and the death of so many innocent people. It did help.

This time, I picked it up because someone I work with was shot and killed in the parking lot of one of the buildings where I work. He was a good guy and didn't deserve this. His family didn't deserve to lose a Dad, husband, and son. Worse yet, his brother killed him and then completed the theme of our time: the murder-suicide.  The family had (and still has to) deal with losing two sons.  My coworker was in his early 50s and he and his wife had recently adopted a child from China. He was a stable, upstanding, smart and clever person

In this situation, I don't know what our society could have done differently. The brother had a known history of mental illness and until recently, he had fairly successfully managed it. Then, for some reason, he stopped taking his medications. He started making threats.

The family engaged the police and got restraining orders. My coworker alerted his team to keep an eye out for a stranger in the parking lot.  But in a situation like this, in our free society there's only so much you can do: the brother was able to get a gun, he identified a vulnerable time to stalk his victim in the parking lot (early morning), and he was determined to kill my coworker. He found a way, and he did it.

A great loss. Greater than I can even know.

I did not work closely with the victim so I am dealing with it fairly well. At least one person who worked in partnership with him has had a very difficult time.

Now, I feel like I need to re-re-read the book. I find myself in a difficult season of life, and I don't know how far I am through it or how deep it is - will it get worse? Will it be over soon or years from now?

While I was working the hospital unit, like most nurses, I developed a perspective or a philosophy about life and the human condition. Life here is really hard. We all do the best we can with the tools we have and sometimes things get all twisted and confused.


My 16-year-old niece is pregnant. I just found out last night.

Now, usually, I'm rather casual about these things. It happens all the time and nowadays, in certain social groups, this is pretty normal. In fact, it's almost expected. You get pregnant in high school, have your child, your parents raise it with you and help support you while you work a low-paying job and go to community college. Then you get married and create a blended family, and have a few more kids. Then you divorce and start the divorce-remarry-blended family cycle. Blah blah blah.

stock photo: not my niece!

You have dramatic, engaging stories to tell with you as the hero (or the victim) later in life. "Oh, woe is me," or "if only I'd known then what I know now!!" And you swear...you swear!... you want better for your kids!

Then your kids do the same thing, because really... this is all "OK." Since it's so normal today, there aren't social consequences in the same way they were 40 years ago. It doesn't ruin your life...it makes your life unnecessarily difficult, but we have changed our society to accept it, sometimes begrudgingly.  In fact, those who judge or reject girls with babies are uncool, old fashioned, and definitely the minority. For those who do not think it's OK, the best we can do today is begrudgingly accept it.

I mean, the pregnant teenager meme all over TV, media, and movies. Pregnancy brings so many exciting things! Presents! Attention of my friends and family! Drama! Excuses! See how excited everyone gets when a duchess or a movie star becomes pregnant! Why wouldn't young people think this is a good way to conduct their lives?

Sigh.

Abortion is socially just not an option these days. ...well-played, far right conservatives. It took 40 years, but yes, well-played.

I don't know what to do, if anything. I would like to communicate with her that I don't condone what has happened and I don't know how to do that from a distance. I don't want to cut her off, really, since our family is small.

I want to reach out to my brother and sister in law, but I don't know how. I really feel for them. They try so hard.... but something didn't work as intended. Nobody knows why - they are good people and they try to do the right thing. Yet, just like me, they are human with faults and flaws, confusion and misdirections. They have been hurt by life, too - here, now and in the past. This all factors in.

I don't want this to devastate them. I fear it could collapse their marriage.

Would it be too preachy to send them a copy of this book?  Should I leave them alone because they don't need one more person to be all up in their business? Crap, I don't know.

Harold Kushner says that showing up and being-with is one of the most compassionate things we can do. Maybe that's where I start.