Looking Ahead

As per my previous posts, I had resolved to get some help with the stress. I've seen the counselor 3 or 4 times now, and it's going fairly well. As always with therapy, I am being challenged a bit.

Caregiving is resolving alright. I have started taking better care of myself and I work on coming to grips with Dad's impending death and the quality of my care of him (enough? too much? not diligent enough?). I don't think Dad's going to die soon, but it is coming relatively soon.

I asked to talk about my job some. And, as good therapists do, my therapist has challenged me to think about my job. She pointed out that I am behaving as if this is the only job I could ever get and if I were to lose this job, I wouldn't be able to find another.

This is not true. I'm very employable.

I want to stay with my current employer until retirement, even though it is certainly not necessary. She challenges me to consider why I want to stay that long. That's about 20 more years.

I have a habit of staying on too long when it's time to go.

But I have a hard time recognizing when it's time to go. From a practical standpoint, any job can't be happy, fun, and personally fulfilling every single day. There are "down" times and there are times when things don't go your way. I have a hard time telling when it's a temporary down time and when a job can no longer fill my needs.

I value longevity and stick-to-it-iveness in a job and I had planned to stay with my employer to live up to those values. It was my way of thanking the healthcare industry for allowing me to join it so late in life. However (and I apologize for whining), I'm bored. And, this job is not giving me back the warm fuzzies that make a job fulfilling.

Right now, I don't have enough responsibility and leadership for this job to be interesting. The technical aspects of the job are no longer intriguing. I've basically mastered those. To get to the next level I would need training, and the company is not in a financial position to provide that training. Will it always be this way or do I just have to be patient? I find the politics in this organization a big downer - it seems unnecessary and an impedance to any type of progress. Even the politics are boring to me. Additionally, my recent history in this job is very similar to the frustrating situations that caused me to leave computer programming 10 years ago - I am the queen of the cancelled project.

Perhaps my perception is a bit off - surely everyone works on projects that get cancelled. Given my personal work history, I am unusually sensitive to it.

My therapist suggests that "I am not listening to all of the voices" that represent my values and needs for work. That's an interesting perspective. Now I need to figure out what these voices are, find out what they are telling me, and maybe then, form an action plan.

Pumpkin Cheesecake and Fear

For Thanksgiving, I made Pumpkin Spice Cheesecake.

Our newspaper, the Kansas City Star, had a Thanksgiving menu section last weekend and this recipe was included. It sounded like a nice alternative to pumpkin pie. An added bonus was that the recipe was from Lidia's Restaurant in Kansas City, from one of her pastry chefs.

It was good, rich variation on tradition. I'm not sure I'll make it again, though. Cheesecakes are rather labor-intensive and the recipes usually make a huge cake. I could eat cake at every meal, but that's probably not very healthy. I'm limiting it to one piece a day.

(As I reread the nutritional information, I'm glad I lightened it up by using neufchatel cheese for 2 of the 3 blocks of cream cheese. It probably helped lower the calories and fat, but not as much as I'd like to tell myself! I also used Redi-Wip instead of real whipped cream. Honestly, I just didn't feel like making real whipped cream.)

I made a side dish from the same menu section in the paper: Roasted Brussels Sprouts with Pickled Cranberries and Plum Vinaigrette. It sounded crazy enough to try and it was surprisingly tasty. I made one major change to the recipe. I didn't know what "plum sauce" was (in the vinaigrette) so I substituted red currant jelly. I had that left over from a sweet-sour (fake) meatball dish I had made. It worked out fine - I only needed about 1 tbsp - and it gave the dressing a fruity-tart flavor without overpowering it.

I do like brussels sprouts, and I doubt this recipe will convert anyone. Surprisingly, the pickled cranberries filled the role of "cranberry sauce" in our Thanksgiving menu. This recipe is a two-fer!


A month ago, I wrote about fear. It's still here, but I've taken several steps to improve things. First, I am seeing a counselor for a little while. Second, my first "homework" from this counseling is to get a massage. Sounds good to me. Third, I've contacted a housecleaning service and they start on Friday.

The counselor has recommended listening to several recorded books. I've started one by Pema Chodron, called the Pema Chodron Audio Collection. It contains three works: Pure Meditation, Good Medicine, and From Fear to Fearlessness. I'm about half way through the first one. Pema has a soothing voice and calming demeanor, and I like her slight New York/Long Island accent.

The second book is by Harriet Lerner called Fear and Other Uninvited Guests. I was eager to read this one on the Kindle, but I could only find it as an audiobook. Oh well, guess I'll get to it after I'm done with Chodron.

The counselor commented that I seem unhappy with my job. It surprised me to hear that from someone else. I suppose I am, although I wish I were not discontented at all. This is supposed to be the ideal job for me. I thought I was old enough to stay in one job for a long time and I don't really want to change. I have some ideas of why I'm not liking the job right now, but a single cause is not clear. More to come.

Fear

Something is going on in my brain. I'm afraid.

I am afraid of screwing up at work, mainly. I guess because I am screwing up at work in ways that, depending on how you feel about a person, could be trumped up.  If they want to get rid of me, they can fabricate more out of the molehills.

Do they want to get rid of me? I don't know, maybe. I don't have any direct evidence.

I am what I am. They've hired a bunch more people who are younger than me. They're cuter, and optimistic, and they're more social than I am. I feel old and fat and sad and serious.

Logic tells me this fear is irrational.

Here's my side of the story.

A nurse manager was asked by a physician for help with the EMR. She didn't know how to answer his question, so she called me on the phone, because she happens to know me and know I give thoughtful answers. She explained the problem and it was definitely not something I could help with. In fact, I didn't know what she was describing, that the physician was trying to do. I told her to contact the education person for physicians and if she wasn't the right person, she would know who to contact.  I couldn't tell from the information the manager gave me if the physician needed help with how the system works, or if he was really asking for something new.

The education person for physicians didn't know what the doctor was talking about either (she's fairly new). She reached out to the person on my team who deals with physician issues. In the chain of emails, the nurse manager said they reached out to our department, without naming me and that I had told her to ask the educator.

The person on my team who handles physician issues is apparently upset that I didn't involve her first. She let me know that all physician things should come to her and I shouldn't forget that. 

I think I made a reasonable judgment.  

Yet, if things were twisted, one could construe that I am not a team player.

So I'm afraid. I'm not as popular as the other person on my team. The cool kids in the hospital (i.e. the physicians) like this popular girl.

I fear getting dinged again. I don't like how that feels, especially when I am such a conscientious person and I try to do the right thing. We'll see if this comes up again.

What is up with this fear? Why am I obsessing?

Maybe it's time for therapy again. It has been about 8 years since I had a therapist, maybe it's time again.

Caregiving - Six weeks after becoming the Primary

Dad is here in town (at a long-term care facility a.k.a. nursing home) and I'm trying to find equilibrium in visiting him, spending time with my husband, and caring for myself. I'm making my best guess for how much "me" time I need, but really, it's ending up trial and error and trial again.

Caring for Dad is difficult. He doesn't or can't communicate. He seems content to be a lump. He enjoys visits and he seems to like the interaction when I'm there. On the good side, he doesn't impose any guilt on me for not visiting as expected. On the bad side, he does not seem to care whether I show up or not. He doesn't seem interested in anything.

I am feeling some guilt about not seeing him "enough." Truth be told, I see him plenty. My goal is 3 times a week and I try to spend about an hour or so each time. I bring something to do or work on while we're together. More interaction would probably be better for him. Yet, I can't do it all.

How am I to take care of myself so I have the energy to work my difficult job, get some exercise, eat well, get some sleep, keep up with friends, do something fun once in a while, and pursue my hobbies?

I have not figured it out yet.

As I feel my way through the unknown, I'm stress eating some. I've gained a couple of pounds, which isn't something to panic over, but it is something to keep aware of, before it becomes a habit.

I'm spending money on stuff. Stuff I don't really need, but stuff I just want. I bought myself a small refrigerator for the office. I bought more work clothes (one could argue I do need the clothes). I bought some earrings. I bought a ring (and I don't wear rings very often, except my wedding and engagement rings).

I'm drinking alcohol a bit more. Instead of only on the weekends, I'l have a glass of wine or two when I get home maybe 2 nights a week. Again, not panic-worthy, but something to observe.

I'm having stress dreams - dreams in which something bad happens to me or someone in the dream. In one, I had kidney disease. Given that I'm working with the hospital's solid organ transplant center right now, I know where my subconscious came up with that one!  Several dreams have been about me having a health problem.

It's hard. I knew it would be, and I'm not really complaining or feeling like a victim. It's hard and it is an adjustment.  I'm afraid something will have to go from my hobbies, and I'm thinking it will be the wind symphony. I really liked the group and playing music, but it's too much pressure. I don't want an activity that requires so much work, where I will possibly feel bad if I don't practice and learn my parts well.

At least I have about 2 months to figure it out.

Update on Caregiving

Things have come down to the end of the timeframe. Unless things fall apart, I will move Dad n Tuesday of next week. I'm going to fly on a plane with a disabled elder. Oh boy, this will be an adventure.

There are many website about flying with a disabled person and I've used them to help get a sense of all the things to think about. One thing I'm hoping for most is lots of time. Dad moves slow and he needs special accommodations. He has to go to the bathroom a lot.

But, I am caring, I know how to ask for help, I'm smart, I plan well, and I have a credit card. Those things ought to carry me through!

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.

---

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. 

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.