Way back then, the only thing that would get her in the tub was if I told her she had a doctor appt the next day. That usually did it after coaxing for an hour… Needless to say… I told her that every other day! Those little fibs we have to tell… That’s a very hard thing in itself to deal with initially… You don’t tell fibs to mama! LOL. That changed.. For her own good.

Her comment comes on the heels of an article yesterday on The New York Times’ The New Old Age Blog. In “White Lies and Worse,” author Paula Span wrote about two friends who don’t disclose the truth to their aging parents. One tells her mom that the doctor has prescribed a stomach relaxer rather than Xanax. A second reported her mom to the state division of motor vehicles to keep her mom off the road.

But that’s not the interesting part of the story. The interesting part is the insights from professionals, a gerontologist and an ethicist, about an aspect of caregiving (Kinda Fibbing) that’s rather common place. The professionals encourage truth-telling, although recognize that a cognitive impairment may mean we choose communication that minimizes harm (i.e., Kinda Fibbing) and, in Karen’s case, gets the bathing done.

So, I’m curious: When do you fib to your caree? How do you feel about the fibbing? Share in our comments section, below.

Related Articles

• I’m Ready. Will You Help Me? (caregiving.com)
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Image via Wikipedia

Heather begins her day the same way: Up at 5:30 a.m., shower, four bites of a granola bar, hair in a headband. Then, she dons the gloves, carefully and steadfastly placing each finger into the latex glove. She’s ready for the part of the day she dreads.

She wakes her mom and begins the morning care. Her mom has intensive and extensive care needs, so morning care can take as long as 60 minutes. She guides and cues her mom as she turns, lifts, adjusts, wipes and dries.

Her mom used to try to use the 60 minutes together for pleasant conversation. Heather just ignored her pleasantries. This is serious business, Heather thinks to herself. And, I hate it.

So, although Heather’s feet hit the floor at 5:30, her day really starts at 5, when her pounding heart wakes her. No need for an alarm clock, the anxiety she feels about providing her mom’s personal care opens her eyes every morning.

Until one morning, when the anxiety, sweating palms and upset stomach seems to win. Which makes Heather feel like she’s lost. And, feeling like she’s on the losing end of the battle leads to an important insight for Heather: Hating this one hour of my day is ruining my life, she thinks. And, it’s making a nursing home seem more and more like the only option.

Deciding something’s gotta change, Heather begins the morning care with a conversation. “Mom, I’m struggling here,” Heather says. “How do you think our morning care routine is working?”

“I hate it!,” her mother responds. “It’s not what we do but how we do it. You look like you’re mad at the world for the whole hour. Couldn’t we lighten up a bit?”

So, they do. Heather gives herself  more quiet time when she wakes, realizing she pushed morning care to a way-too-early start just to get it over with. A later start gives her more time for a bowl of cereal rather than a few bites of a granola bar. It also gives her time for quick walk with her dog.

Now, when morning care begins, Heather feels full—from a good breakfast, fresh air and a new perspective. “I’m grateful for the time I have with Mom,” she says before morning care begins. And, now during care, she and her mom watch the Today show, chatting about the news and comparing notes on stories. Personal care can now take longer, but Heather doesn’t notice. It’s becoming a favorite part of her day.

Caregiving is serious business. But, its serious nature can lead you to hate it and all that it entails. And, most likely it’s already awful, so why add a bad attitude?

The cure for what you hate could be levity and humor. Finding humor and fun could turn what you hate into what you at least can tolerate.

So, I wonder: What do you take too seriously? And, how can you lighten up? Share your thoughts and ideas in our comments section, below. One of our commenters will receive an autographed copy of my book, “Good Morning! Sunny Reflections to Start Your Day.”

Resources

• We’re taking submissions for our Caregiving Art Show and our Help book! Be sure to share your art and your story with the world.
• Our 2011 Family Caregiver Survey report offers a snapshot into the day and life of a family caregiver. Purchase the report for just $9.95 here. (Did you complete the survey? You get the report for free; email Denise to request.)
• Sign up for one of our three-week caregiving classes, including Three-Word Journaling. The classes take place conveniently over the phone and help you feel better exactly where you are. Register here.
• The August Board Report (my report to you about our August events and happenings) took place on Thursday. It’s a 15-minute webinar which you can view here.

Related Articles

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• When Was Your Last Day Off? (caregiving.com)
• Your Value: $450 Billion (caregiving.com)
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• Does Sharing Make You a Better Caregiver? (caregiving.com)
• The Nine Miracle Steps (caregiving.com)

Anna and I spoke about how we may have learned, growing up, to remain silent about our feelings. We also may have learned to stifle how we feel. Our parents, or other family members, may have felt insecure or overwhelmed by our feelings so may have told us, “You are too sensitive” or “Your are so dramatic.” We may have interrupted this message to mean that our feelings are wrong or unimportant. The reality is that our parents or other family members simply did not feel equipped to handle a discussion about emotions. It wasn’t about us or the validity of our emotions.

Anna gave us tips on how to express emotions in a way that allows us to trust and feel safe. You may say to a friend, “I’m having a bad day today. I want to vent about what’s going on. It would be great if you could listen.” When we first learn to vent, we may second guess how or what we vented.  So, we may be tempted to revisit a vent—to apologize for it. If we do this, though, we minimize our  feelings, much like we do if we say our feelings aren’t worth talking about.

So, when the venting ends, thank your friend for listening and take a moment to feel the relief of letting it out. Then, move on.

We ended our discussion by beginning a conversation about another aspect of depression: How do you discuss your difficult emotions about caregiving with your caree? Stay tuned for our this discussion during a show in July.

I’d love to know: How comfortable do feel in discussing your emotions? And, what did you learn from today’s show? Please share in our comment section, below.

Related Articles

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• Never (caregiving.com)
• Jail (caregiving.com)

Again.

You might be thinking there is just no pleasing me (which, if you ask New Home – or Old Home for that matter – that might be their answer). Personally, I think I’m pretty easily pleased as long as my brother is well cared for and thrives in his environment (and I don’t think that’s too much to ask).

Since 2009, Robert has lived in three facilities. The first was a Skilled Nursing Facility because he had a raging staph infection and needed intravenous antibiotics for six weeks. This SNF had caring staff, knowledgeable medical personnel as well as physical and occupational therapists who helped Robert with exercises and provided him the medical equipment and devices he needed.

The most useful of these devices? Shoelaces that cannot untie! For something so simple, these magical shoelaces have contributed to maintaining Robert’s independence more than anything else I can think of at the moment. (Robert likes regular lace up shoes instead of Velcro and should be able to have that option wear them if possible.)

(See? I was pleased with this facility!)

Robert’s infection finally cleared up and he had to be moved since he didn’t need constant nursing care any longer (although he really did miss being served meals in bed).

In a very short amount of time, I became educated on the different kinds of care facilities, social security benefits and any other type of assistance available for Robert.

After getting my advocacy training wheels on, Robert was accepted into the Assisted Living Waiver Pilot Program (through Medi-Cal) which led us to Old Home. It was really a home for the elderly but there are state regulations that allow a certain percentage of the population of these RCFEs to be under 55 years old. At 43, Robert was the whippersnapper of the bunch.

Old Home provided Robert with a private room and bathroom, filled his days with activities (bingo!) and fed him well (a bit too well, actually, causing me to invest heavily in Levi’s stock). At first, they were quick to dial 911 after a seizure but I educated them about seizures and eventually spent less unnecessary time in the ER.

Don’t get me wrong, there were hiccups. Plenty of them, including a nurse who regularly showed up to work intoxicated, a change in administrators as well as an eventual change in nursing staff. Robert only had one friend and couldn’t talk to many of the residents because as he told me, “they can’t hear me.” New Administrator didn’t particularly like having a client who had seizures. Within a few months, Robert had been reported for pushing his walker into an aide and after meetings with the Administrator and Ombudsman (who confirmed my suspicion they were overreacting), I received an eviction notice for Robert (it didn’t help that it came a few short days after our father passed away and on the actual day that I had been at a funeral home planning the funeral).

Fine. I’ll move him.

I knew the real reason Administrator wanted Robert moved was because he was afraid of law suits from families of little old ladies who may become injured if Robert fell on them.

Which is a lot different than actually being concerned about little old ladies being injured.

I knew they couldn’t kick Robert out for these reasons but didn’t want him to be at a place that didn’t want him there. I agreed to move him and they backed off until I could find a new home.

After several months, Robert was accepted into the local Regional Center which provides services, including housing referrals, for disabled individuals. My hope was he could be placed in an environment where he could make friends in his peer group and find a girlfriend (something he said he would like to do).

Since it took months to just get him into this system, I have to admit that I chose New Home in a rush. I was new to this system and I let myself get steamrolled into choosing the first home I visited.

Being steamrolled is not usually something that I let happen to me but I needed to get Robert out of Old Home and let myself be told (by the owners of New Home so I should have known better) there weren’t other homes available and this was it. (I have later found out there were several things I was told by this company that were not true).

After four months of communication issues with New Home management, I have decided Robert deserves better. This is his home, after all. He has to be able to thrive and look forward to spending time there.

It may take a long while to find a suitable home run by a different company (which apparently owns several homes in the area) and I have my worries about moving him since change in routine takes its toll on Robert, but these are not reasons to keep him in a home that has clearly contributed to his mental and physical decline. The Day Program staff has reassured me their program will be a constant in Robert’s life and being there will ease the transition to New Home 2.0.

So, go ahead and call me Goldilocks because my goal now is to find a home that is “just right.”

Robert deserves to have a home and not just a place where he’s filling up a bed.

Image via Wikipedia

You’ll have those days when you want to throw up your hands, scream “I’m Done,” and then just walk out the door, never to return.

You’re done with caregiving.

It could be that the day just became too much of not enough going well. It could be that the day included unhelpful comments from unsupportive family members. Or, it could be that you couldn’t get out and, wow!, did you want to get out. Or, you just had no idea what to do for your caree.

When any (or all) of these events happen, you want to turn your back on caregiving. Wave it good-bye for ever. Break up for good.

When you’re done, it can be so hard to stay. Here’s how to stay:

1. Accept your bad day. Fighting it often only makes it worse. You’ve having a bad day. Sometimes, you’re having a really bad day. It’s okay.

2. Know your bad day will end. Really. There’s only 24 hours in a day. And, you have to sleep at some point. Take comfort in knowing there’s an end point.

3. Stop doing what’s stressing you out. Sounds simple, but we often keep doing exactly what makes us miserable. Maybe you’re worrying. Maybe you’re doing laundry. Maybe you’re engaged in a battle of the wills with your caree. Maybe you’re visiting with family. Whatever it is that’s making you miserable, stop. Take a break from the worry. Save the laundry for another day. Put down your weapons. Excuse yourself from the family. Stop trying to solve a problem on your own. Just stop.

4. Give in to the day. Allow you and your caree (and any other family members) a break from the routine or the “must do’s” or the “have to’s.” Take time for a glass of lemonade (or water or soda) and two cookies for both of you. Give in so you can breathe.

5. Laugh at what is your undoing. When you step back and really look around, something funny is happening. Find the funny.

6. Do whatever you can to give yourself sleep as soon as you can. Take a nap. Rest in your chair. Go to bed early with permission to sleep in. Sleep often solves the problem of a bad day.

7. Write it out in your journal. Say exactly what’s on your mind and in your heart. If you’re worried about writing it out in your journal, then write it out on a separate piece of paper you can toss later.

8. Forgive. Forgive the disease, forgive your caree, forgive yourself.

9. Finally, know a bad day isn’t about you being a bad person. The bad day is about a circumstance, a situation, an incident. Keep the bad day in its place rather than letting it place you in the position of being wrong or bad or unworthy. You’re a good person whose bad moments seem to be overtaking the day. That’s it.

Days will come when you want to be done. Put the done in your rear view mirror by knowing good days lie ahead.

Updates

• What’s caregiving like for you? Share your experiences in our 2011 Annual Family Caregiver Survey; get a 30-minute coaching session with Denise and a chance to win a $100 Amazon.com gift card. Take the survey here.
• Do you love our comforts? Then, you’ll love Take Comfort, Too, More Reflections of Hope for Caregivers. In Take Comfort, Too, Denise M. Brown takes 108 words—including Parade, Green, Red and Glory—and then turns each into a reflection. The reflections focus on a family caregiver’s reality, sprinkled with hope. Denise’s insights about the caregiving experience feel like a warm hug, a helpful smile and an encouraging nudge. Order here.

Related Articles

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Dealing with my husband’s progressing brain tumor is bad enough, but I just don’t know what to do with his family.  I feel so invisible at times, bullied at others.  Not sure if I want to hide in the closet or yell.

Can anybody relate?

Sometimes, managing the family (yours, your caree’s) can seem like managing a regiment of complicated medications. Some family members you can take in the morning, others cause you to take too much candy after an interaction. And, if you mix up the regiment, you get too many complications—misunderstandings, hurt feelings, awful arguments. And, of course, you also get the upset stomach.

So, what’s it like for you with family? Please share your experiences in our comments section, below. And, one of our commenters will win an autographed copy of my book, Good Morning! Sunny Reflections to Start Your Day.

Thanks so much for sharing!

Resources

• What’s caregiving like for you? Share your experiences in our 2011 Annual Family Caregiver Survey; get a 30-minute coaching session with Denise and a chance to win a $100 Amazon.com gift card. Take the survey here.

The post today is brought to you by the letter “C.”

Care Home.  Conflict.  Communication.  Crying (ugh!).  Cautiously optimistic.

New Home called me earlier this week to schedule a meeting.  Those involved in the meeting would be the Nurse, House Manager, supervisor of house manager, supervisor of the supervisor of the house manager.  And me.  (Four against one?  Is that all you got?)  I actually called to invite the counselor from the Regional Center and he, thankfully, was able to attend a portion of the meeting.  I think he’s on my side but it’s hard to tell.

Their objective:  to “clarify” communication.  Gee, brilliant idea.

My one slight irritation is that they beat me to the punch and called the meeting first.  I got over that fairly quickly and next went to “bring it on” mode.

The meeting was held today and lasted two hours.  Whoa!  Two hours of . . . communicating!  It started with them stating their objective of providing good care for Robert.

I said that would be great!  How about we start with not ever trying to take him to the ER to have a needle stuck in his you-know-what in order to get a urine sample when he can PEE IN A CUP AND WHICH YOU WOULD HAVE KNOWN IF YOU ASKED HIM OR ME?

I felt better about getting that out but it may have led to a rocky start of the meeting.

The nurse started to lobby for me not going to another doctor (meaning, Robert’s neurologist) and obtaining orders without her knowledge.  She told me it just means she has to call the doctor to discuss and it’s better if she just obtains the orders.  I explained that if it was in Robert’s best interest to get an order for medication or an x-ray or lab work, that I would do it.  Sorry.  I can’t agree to step aside and let the person who on day two changed his medication schedule (for convenience resulting in numerous seizures), or who insists on a CT scan every time he goes to the ER (which has been unnecessary according to the actual ER doctors and refused by me on Robert’s behalf), or was supposedly in charge of the “let’s take him to ER for a catheter” idea.

I can’t trust a nurse who clearly is trying to find the easy way out.  I won’t do it.  I said I won’t do it and the supervisor of the supervisor said, “I hear you saying no” to this idea.  Um, great listening skills.  Heck yeah, I’m saying no.  She didn’t know what to say at that point (the others were quiet throughout the meeting).

Apparently, they are not used to being challenged.

We discussed the topic further and the nurse finally said the magic words:  I don’t have to ask her permission to do these things (wow, thanks for that).  She said she would appreciate it if I either called or texted her to let her know what I was doing which I agreed to do.  I’m a fan of direct communication so will be in touch.  (Be careful what you ask for, though.)

The meeting then turned to Robert’s physical decline, his increased balance problems and the troubles he has moving his right leg.  We discussed his recent memory problems (not remembering having a meal or his roommate’s name) which led to a discussion of whether or not Robert has had a mini stroke during one of his seizures.

My tears betrayed me at this point and started to flow but I groaned, accepted the gift of a tissue and continued.  I agreed it was a good idea to have an MRI to see if he has had a stroke and suggested we get any tests done before he sees his neurologist later this month.  That will allow the neurologist to review test results at the appointment.  We also discussed getting him a sturdier helmet as well as a sturdier walker.  We discussed nutrition and I questioned them about providing more fresh fruit and vegetables.  They assured me Robert is provided lots of fresh fruit and vegetables but I have lingering doubts about that.  I decided it was something to push them on another day.

By the end of the meeting, plans were set to have Robert assessed by a physical therapist, an occupational therapist (who can help with the new helmet and walker), taken to a lab for an MRI (not the ER as the nurse actually suggested as an option – are you kidding me?!  Are you not listening?!).

Plus, I have the nurse’s phone number and will be communicating with her.  A lot.

I felt my objective of protecting Robert was met, that my voice was heard and that they know I cannot be marginalized.  As I told them, I hope their actions match their promises.  I felt the meeting ended on a positive note, although, I somehow suspect the nurse and I will not become BFFs.  (She barely looked at me when saying our goodbyes).

Overall, I am cautiously optimistic.  And very, very tired.  Conflict wears me out!

Let’s review events since move-in three months ago:  You changed his medication schedule because it would be more convenient for you (and, oops! surprise! he had more seizures!).  You called to change his neurologist appointment that had already been scheduled for six months (by me) because he was having more seizures and you needed to know why.  (Um, see previous sentence).  You tell me you encourage family visitation (sure! come over! take him out! he’ll love it! we love family involvement!) and then require me to notify three people and sign a release (god forbid I bring him back later than when I told you I would).  Now you tell me I can’t arrange an x-ray for his sore back because that’s your job (but then your solution is to make him miss Day Program and sit in an ER for the x-ray?). 

NO. 

You are not treating me as a partner in Robert’s care.  Instead of actually trying to help me care for Robert, you have been trying to wrestle control of him from me since he moved in.  To what end?  I understand you have state rules and regulations you have to follow.  I understand they may be burdensome.  I understand you have paperwork to fill out when Robert falls.  I understand you want to keep him safe (cynically, I suspect, so you don’t have to fill out more paperwork).  I understand that, for many different reasons and due to many different situations, families are not always as involved in the care of their loved one as I am. 

I. DON’T. CARE. 

I am looking out for Robert’s best interest.  Period.  I have Power of Attorney over all aspects of his care.  I choose where he lives and which day program he goes to.  I provide his clothing (no matter how many times his pant’s size changes).  I keep him supplied with 7-Up because that’s what he likes (but make him drink water because that’s what’s good for him).  I make sure he has a triple-blade razor and Crest toothpaste because he’s used to those things.  I buy him protective briefs to wear at night because the ones he wears during the day don’t work well at all at night (and it’s apparently impossible to get both kinds approved by Medi-Cal).  

I get to decide if he should miss a day of Day Program (something he loves!) and spend several hours in an ER for an x-ray and urinalysis (your plan) or if he should get a referral from his neurologist to go to a lab to have these done in a quarter of the time (my plan).  I understand you have budget constraints. (But is the ER really less expensive than a lab?  I find that hard to believe.).  I get to decide that you have dismissed his back pain for far too long and I am now going to find a solution that works for him.

I AM ROBERT’S SISTER AND WILL NOT BE DISMISSED.

There, there, New Home.  Don’t worry about this.  This isn’t a power struggle.  This is a sister looking out for her little brother and making sure he has the best care, the best place to live and the best place to socialize while being safe and healthy. 

I’m convinced Day Program is the best place for him.  I’m not convinced living at your home is the best place for him.  What I need for Robert is a home that will partner with me to provide him the best possible care. 

Can you be that place or not?

During our discussion, Kim said that the first experience helped in that she knew about resources and solutions that helped. But, she said, her parents and her mother-in-law are very different people. The difference in personalities and communication styles makes this caregiving situation different than the first.

She also spoke about her children and their reaction to the second time. In particular, her youngest worried about a recent hospitalization with Kim’s mother-in-law, remembering that Kim’s mother died in the hospital.

We also spoke about how Kim felt when the second time around started: Was she ready? Did she approach the situation differently?

If this is your second time around, what feels different for you? And, is the second time around harder? Or, just different. Please share your thoughts in our comments section, below.

Holly shared several suggestions, including eliminating a question when assigning tasks. Meaning, instead of asking her husband to help, she assigns the task to him. “I’d like you to…” becomes the request.

She also uses these questions when determining whether or not an activity or task may be too much:

• Is he safe?
• Is this too much?

We spoke about a process you can use when determining how much and for how long with your caree:

1. Observe your caree during the task or outing;
2. Assess how your caree did;
3. Choose whether or not your caree needs a break; needs the outing or task to be modified; needs more assistance.

Your caree is on a different channel, Holly explained. So how do you tune in your caree’s channel? Be present—make decisions on how much and for how long during the moment. Then, make the adjustments necessary. Being flexible allows you to select a solution that’s right for that moment.

Holly also described herself as her husband’s coach. She gives him tasks and responsibilities, modifying and bringing in more help as necessary, because she feels better with his help. When he helps, she removes the bitterness about their situation and moves into feeling grateful for his help.

As his coach, Holly sees herself in the position of “pushing.” “We shouldn’t apologize for pushing,” she said.

I’d love to know your thoughts about being your caree’s coach. If you view your role as coach, how does your approach to caregiving change? Please share your thoughts in our comments section, below.

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