When a Loved One is in a Rehab Hospital: Part 4

Caring for the Caregiver

Make no mistake: caregiving is exhausting work. As a nurse, I know from experience it's hard taking care of people you don't know. Ratchet it up a notch or two when it's a family member. You both bring your shared history to the dynamic between you, and that helps and hinders your caregiving and your mental health.

It's important to care for yourself. If you're worn out, angry, feeling alone or abandoned, not only do you feel lousy, your caregiving suffers. At least when it's an elder or grown up, you can (try to) explain your need for self-care. You don't have to own all of the burden of your loved one getting better. If they are an adult, you must rightfully assign the responsibility for getting better back on your loved one.

Caregiving is create the environment for healing and recovery. One element of that environment is a supportive, positive, energetic caregiver.

You're an adult too. Therefore, your care is ultimately your own responsibility.

Caring for Yourself

Establish goals for caring for your loved one.

Make these goals reasonable and stick to them. Example: I strove to Dad twice a day on "most days." Roughly, the most days translated to 4 or 5 days a week. Two days a week I visited him once or not at all. 

Re evaluate your goals.

If you are feeling inner conflict, too stressed out, at wits end repeatedly, maybe your goals are not a good fit and need a little tweaking. 

Remember you have power in the caregiving relationship.

While you want to be there for your loved one, you actually can walk away (for a while). It's a balance of the goals, feelings of guilt, good feelings when you know you've done good, and everything else going on in your life. 

Care for yourself physically.

Eat well. Exercise. Get enough sleep. Take your medications. Consider taking to your own health care team for pharmaceutical support (something for sleep, anxiety medication, etc.) This is an extremely stressful time, and maybe a little help would be good for you - only you can decide this. There is no shame or sin asking for and getting help. Of course, you and your physician or nurse practitioner will have to make this decision, given your unique situation. 

Also, now might be a good time to get a pedicure, manicure, facial, or massage.  Nothing is more cheery than brightly colored fingernails!

Care for yourself emotionally.

Keep up your social life, at least to some degree. Yes, you can go out with your spouse/partner, you can go see a movie, you can eat out, etc.  Food is often a comfort for people (rightly or wrongly). Don't go overboard, but if special goodie would help you feel nurtured, go ahead. I personally don't think this would be a great time to start a new diet, if you know what I mean. 

Also, keep up at least one of  your hobbies or activities that "feeds your soul." That's why I bought a sewing machine at my Dad's house (when I already have 3 machines at home. Yeah, I know.). I had some little projects going on that simply delighted me. It made me feel good. 

Care for your self spiritually.

I hope you have a spiritual community at a church or other place of worship. Let some in the community know and let them help you. Let them pray for you. Pray for them, too. 

Lessen the burden of communicating with so many people.

Use social media, like Facebook, Caring Bridge, etc. and post updates. Then let loved ones know to check there for updates. It gets burdensome to tell the story over and over, and you forget to whom you told what updates. It's a pain to be interrupted by a phone call while you're trying to relax and forget about the situation for a little while, even if it's someone you like and really want to keep up to date.  If they need that much information, invite them to join you in the caregiving (and watch them run away, hee hee)!

It takes a village.

It doesn't have to be all you. Other people can do things for your loved one that you cannot do. Example: Because I am the daughter, Dad can't talk to me about certain personal things. Yet, we had hired a care manager/consultant to work with Dad, and we still involve her in his care. She's "safe" for him to talk to about adult things. So, we bring her in and sometimes offer suggestions what Dad might need to talk about, and then let them take it from there. 

Encourage your loved one to care for him or herself.

Encourage them to make friends with other residents. Encourage them to call friends/family members. Then you know they won't be sitting all alone in their rooms feeling lonely, just waiting for you. And if they are, then it's their own doing. 

When you feel bad, do something for someone else. 

This is ancient wisdom. When I had my down moments, I would:

• Write cards to friends back home.

• Send something to people back home. (e.g. I mailed a little cookbook from my Mom's stuff that we were cleaning out, to a friend. I thought she would like it.)

• Make goodies (or buy something nice) for the staff at the rehab hospital.

• Make a craft for someone.

• Bring a goodie to your loved one's roommate/next room over, etc.

• Help out a neighbor or coworker.

• Write a lessons-learned blog post (like this! I'm helping the online community, or so I'm telling myself!)

• Walk a dog or play with a child. 

Remember, caregiving is basically good. You're doing good.  You know - good Karma, so to speak. Or for a Christian perspective, you're being like Christ to your loved one. That's a privilege.

These 10 strategies should help you keep up your energy, positive attitude, and happiness. This will keep you from feeling resentment or anger, and it will help you be a better caregiver.

I'd love to know your strategies too.  How do you care for yourself in a difficult or long-term caregiving situation?

When a Loved One is in a Rehab Hospital: Part 3

Useful Things

As I've mentioned in previous posts, Rehab Hospitals have the basics, but there are some extra things I found particularly useful when coordinating Dad's care.

Whiteboard
Yes, the facility already had a whiteboard in each room! In my Dad's room it was located nowhere convenient, there was no pen, and no one looked at it.

I bought a whiteboard decal at Staples (here's the one I bought). Cool - I didn't have to do anything to the wall to put it up! I stuck it on the bathroom door in Dad's room because it was right opposite the head of his bed. He could see it easily and the staff could see it easily.

I bought a dry-erase pen and some stick-on Velcro. I stuck a strip of the loop part of the Velcro on the bottom of the whiteboard and stuck a strip of the hook part on the pen. Voila! Instant communication system.

I used paper towels to wipe it off. And you know what? Alcohol foam makes a great whiteboard cleaner. How convenient!

Sometimes I wrote inspirational or funny quotes, Bible verses, and jokes on the whiteboard. Sometimes I wrote reminders for Dad (e.g. "3 days til the Baseball Game!"). Sometimes I wrote requests or general information to the staff:

• Please have Dad ready for his doctor's appointment tomorrow by 8:30 am. Thanks!
• Dad could use a haircut - can you schedule that with the salon?
• Dad's laundry needs to be done. He needs clean clothes for the weekend.
• Visiting with family in the Dogwood room (2:00pm)

When I had Dad out of the facility (e.g. attending the doctor's appointment) I'd write something like:

9:00am: took Dad to doctor's appt. Should be back around 10:30. My cell number: Lauren, Mr. N's daughter.

I signed those notes so they knew whom Dad was with. You never know if the nurse on duty that day is brand new and doesn't know you.

The staff commented a couple of times to me that they loved my white board decal. It really helped them remember to do certain things for Dad.

The Visit Bag
I kept a tote bag ready with stuff I frequently brought for Dad, and every time I went to the facility, I brought the bag. At home if I thought of something I needed to bring or if some mail came for Dad, I just put in the in the bag right then. Then, as I was leaving to visit Dad, I didn't have to think about what I had to remember to bring.

Some examples in our bag: the book we were reading, the newspaper, the shaving kit (in a separate smaller Dopp kit bag - I didn't need it every time), and ointment I was applying daily.

Stuff to Do on My Own

Sometimes when I visited, Dad was busy with therapy. Sometimes the aide was cleaning him up and dressing him. Sometimes, he was in the bathroom (which takes a long time when you aren't very mobile). I tried to have something pleasant to keep me busy while waiting on Dad. I figured I might as well enjoy myself while waiting, otherwise, I might get mad about "wasting my time."

Mostly I checked email or played games on my iPhone.

iPhone

More about the iPhone: specifically, the camera on the iPhone.

Other family members enjoyed seeing picture of Dad (on Facebook or sent via email). They wanted to know how he was doing and a picture really helps. I also humbly suggest that they liked seeing a few pictures of me with Dad and Dad with Trixie (my pup).

We have the technology, so why not?

I could also show pictures to Dad on the iPhone. I took some shots of my dog throughout my stay, so I'd share the latest Trixie picture with Dad, when I had a new one. Or the house with the huge snowfall on it! He really enjoyed that.

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What other useful things do you bring when you visit?

When a Loved One is in a Rehab Hospital: Part 2

What do I do when I visit?

I think a lot of people get uncomfortable when they visit family in a nursing home or rehab hospital because they don't know what to do when they do visit. Obviously, it depends on the health status of your family member and how much they can do, comprehend, or participate in.  Here are some suggestions, use as appropriate.

The important thing is to show up. It's lonely in a place like that. You don't have to go every day and stay for hours and hours, it's just really important that you go. Your loved one will recover better.

This post is a bit long, but once I got going, I kept remembering more things that worked well for Dad. I hope something works for you.

Read Aloud
Who doesn't like to be read to? It isn't just for bedtime stories for toddlers! Everyone likes a story or news or a letter. I believe there are two benefits:

• You are with your loved one.
• Your loved one hears your voice, which can be soothing and comforting.

This one is particularly good if your loved one is not very conscious. You may not know if they are awake but can't respond or if they are truly asleep and unaware. Nevertheless, at the very least, you get to read a story too.

1. Newspaper articles / stories
• Dad always wanted the sports section. I read them even though I really didn't care much about his teams, or basketball. I learned things about sports. At times, I'd ask for clarifications of name pronunciations, and Dad would provide it!
• Sometimes, I picked out local interest stories and business articles related to his former career.
2. Books
• Choose one that has fairly short chapters. A memoir or biography might be good because often they are written in conversational style (easier to read aloud). 
• Find a topic you both like. 
• Be committed to reading a chapter each time you visit.
• Try to pick a story that's not too steamy, gross, scary, or violent. Remember, you're reading this to your Mom or Dad!
• There's always religious topics like the Bible or books of devotions.
3. Short stories
• Find a book of short stories. Short is good because you don't tire or reading, and your loved one doesn't get mentally tired by complex plots and characters. 
• Magazine stories are good, too.

Obviously, choose positive subjects that aren't potentially sensitive to your loved one. For example, don't choose a story about a sumptuous cuisine to someone who can't eat!

Watch TV Together or Simply Sit Together

Your presence is enough. Often these places have a community room with a larger TV. Take your loved one down to watch there, instead of their room, if you can. A change of scenery is good.

It may be difficult for you to sit quietly. Find your inner peace and patience and try to just be in the moment, and be present. If this makes you anxious or uncomfortable, set a time limit so you don't feel like you're stuck: the end of the TV show, 30 minutes, etc.

Bring Little Goodies from the Outside World

They probably can't just get up and go to the store. Hospitals do provide much of this stuff (generics), but there's something so much nicer about having the brands that you like. Some ideas:

• If they can eat/drink:
• Starbucks Via Ready Brew
• Flavored Tea
• Uncommon but favorite seasonings (Soy sauce, Sriracha, hot pepper sauce, etc. Cost Plus World Market has lots of mini containers of condiments in their stores.) Hospital food can be very bland, and seniors often have diminished sense of taste.
• Fresh fruit or produce (Hospital meals are often over cooked, canned, processed food!)
• Self Care
• Lotion, lip balm, emery boards, nail clippers, high quality soap
• A tube of preferred toothpaste brand
• Craft supplies for a hobby like knitting, crochet, cross stitch, etc.
• Soft comfy socks. 
• A puzzle book, like crosswords, circle a word, or Sudoku and a pencil or two. A mechanical pencil is better - no sharpening!
• Something they can fiddle with in their hands, like a Rubik's cube or a stress ball. It's good for hand strength and fine motor skills. 
• Music, podcasts, earbuds, music player. (Like when you made a mix tape back in the 80s for your girlfriend....)

Bring Someone Else and Have a Conversation with All of You
Your loved one might enjoy being in the presence of adult conversation - conversation that isn't about healthcare. Remember to include everyone in the conversation so no one is left out. In my case, Dad never has been very conversational, but every so often, I'd direct a question or request to him. "Dad, this is like the time we...." etc. Dad enjoys listening to others' conversations - it reduces the "stress" of having to think of something to talk about.

Provide Physical Care

This might be a tough one, but it doesn't have to be so personal/invasive. Always ask permission first. Rehab facilities do the basics, but everyone likes a little extra care. Here are some ideas:

• Bring a nice scented lotion (for a woman) or an unscented one (man) and apply it gently to your loved one's hands. Their hands may be dirty, have them wash up first. 
• Men: Bring shaving equipment/lotions and give him a shave. Remember to bring the after shave (if your family member uses it) because they never have that at a rehab hospital.
• Comb/fix their hair. For a woman you could put it in a pretty clip, do a braid, put a headband in, etc. Some lightly scented hairspray could be nice. 
• Bring disposable wipes to clean their glasses well.
• For the adventurous: give a simple pedicure. You don't need nail polish! Buy some foot soak powder (like Johnson's Foot Soap) bring a foot-size basin, fill it up, and let them soak. 
• After their feet are clean:
• Rub with a cloth or towel gently
• Trim the nails
• Rub lotion in the feet and lower legs
• Disclaimer: again, use your judgment - some people, like diabetics, require special foot care by a professional.
• My thought: lots of elderly neglect their feet. But feet are important, especially if you want to keep walking and do your best in therapy.

Work a Jigsaw Puzzle

There are puzzles for just about every ability. There are large-piece puzzles with more general-appeal designs (although they do tend to be kid-focused...but keep looking!). I even found a puzzle that was designed with families in mind - it had large pieces for the kids and small pieces for the adults!

If you're doing a bigger one, see if you can do it in the activity room (or similar) and leave it there for a few days while you both work on it. Invite others to join you. It's a great way to meet other patients and their families.

Bring a Pet

Check with the facility first. Most facilities do allow a pet to visit and might require proof of vaccination. Of course, use your judgment whether your pet will be comfortable in this setting and if they have the manners to behave well (house trained, etc.). Small, older dogs are probably the best. 

You will become instantly popular. Expect lots of requests to pet your dog. It's a good idea to bring some treats because everyone will want to feed your dog a goodie. Better to have an appropriate goodie than items from a dinner tray!

See there are lots of things you can do! Mix it up with each visit - not every visit has to have an agenda. 

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.