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 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.