We had a wonderful time away, it was much needed and brought physical rest along with mental rest. One morning I slept in until 11. (:

It was fun to watch the kids: Marah was excited about everything from the castle to the ducks roaming the parks. Abrah and Rees enjoyed any roller coaster they could find and were very aware of fast pass times and short lines so they could ride again and again.

The first two days for me were an adjustment to the “on call” feelings of caregiving. I heard my mother calling to me in the night and checked my phone probably more than I needed to.

We had a couple of incidences that needed addressing. Both could be handled by phone and texts. I felt good that I was able to help out, but better that I could then let go and enjoy the rest of the day. Before this, I would have carried the concern with me for much of the day.

Time away, brings a change in routine that is needed in caregiving; looking forward to that time is always a help to me as well.

Moving back into the routine is an adjustment. Over the last couple of days, I’ve been thinking about energy and how caregiving can deplete our energy. There can be a feeling of scrounging for energy, when our carees lack it or have needs that can drain our energy lines.

The constant repetitiveness in dementia is very draining for me. Monday night, our last night away, I began to think about that draining. It was nice to have a break from it, but I needed to be reminded of an energy that sustains, that is always with me and I can refill right where I am (within caregiving).

So, I began to think about my energy lines: Caregiving.com, each of you, reading your stories with the opportunity to offer understanding and encouragement, replenishes. My coaching calls with Denise are a constant that provide me with the energy to keep going; to keep moving forward. I am able to take apart worries and replace them with solutions.  “Disrupting” with each of you. Spreading the word about Caregiving.com to others gives a very unique energy, one that is truly exciting to do.

There was a man on one of the shuttles we were on that was wearing a t-shirt and written on it was a message about our story, and not allowing another to change it. I began thinking about how we’ve been talking about our stories on Caregiving.com, and I’ve been talking about mine with Denise in coaching calls. It’s so important to know our story. Seems simple, but much more complicated than I realized.

Over the years, my story has melted a bit into others’ stories or I’ve allowed others to change my story to make theirs more comfortable. Knowing our story brings energy.

The energy is created as the drama is alleviated.

It’s so important that I know my story, that I know what I like and dislike; my goals and what brings satisfaction and happiness. Our stories are about us and others have no right to try and change. The tricky part is knowing your story so well that you can hang on to it and know who and what best fits into your story.

For me, a part of my story involves my mother. Family members have tried in the past to change that very important part of my story. In knowing this now, it helps me to not fear or dodge their comments or suggestions (sometimes more adamantly given than not). When we know our story, what we stand for, what we are about, it replaces the drama, leaving us with more energy.

I’m so grateful for each of you; the energy I find here. I love reading your stories.

It’s important to know we’ll be okay, right where we are.

Our stories are important and only have one author.

Whew!

And she’s happy and relieved because her latest theory provides a much less stressful explanation to the matter that’s been bothering her these past several days. (It has not escaped me that she came up with this explanation after we received the good news on the MRI.) More on that in a bit.

These past few days, I’ve also been thinking about Dr. Amador’s discussion of confabulation in his book I Am Not Sick, I Don’t Need Help!. His book applies largely to schizophrenia, but it’s also applicable to certain types of brain damage. It’s no surprise that my partner had been misdiagnosed with schizophrenia, because her type of brain damage can result in similar behaviors. Like confabulation.

Amador explains using this graphic:

He asks, “What letter appears in the box?…If you answered ‘E’ you saw what the majority of people who are given this task see. But in reality, you did not see the letter E. What you saw is a line with two right angles (a box-like version of the letter ‘C’) and a short line that is unconnected to the longer one. Yet, you probably answered E because you perceived the letter E. The visual processing and memory circuits of your brain closed the gap between the lines so you could answer the question.”

Amador goes on to present evidence for this neurological gap-closing, which I believe relates to my partner’s perceptions and theorizing. Just as I can’t un-see the “E” in the box (although I know it’s not a real “E”), I believe my partner automatically generates her “theories” and “correlations” (especially during times of stress) because she can’t un-think them. If we’re lucky, a more realistic alternative explanation comes along, fitting a better puzzle piece to her worldview.

(Or, like today, she generates her own revised, and prettier, puzzle piece, to match her better mood.)

She’s continued to be focused on the idea that the neighborhood’s “badly-behaving youths” know about her diagnosis and about 30-year-old theories that women with MS want to have sex. She says the old theories have been passed down to the youths from their grandparents.

A few days ago, she told me she had saved an article about those theories, by copying and making the article into a .txt file. But she had trouble finding the file on her computer. She had given it a very cryptic name, so as not to give its subject matter away. She said the government has the technology that can let it view all the files on her computer, so she didn’t want to make anything easy for them.

However, she also clarified for me that the neighborhood youths don’t necessarily want to have sex with her.

I asked, “Why did you think one of them rang our doorbell the other day?”

She said, “Because he’s immature.”

She added that since my father had died in this house, some of the kids probably think it’s haunted. And ringing our doorbell could have been a “Truth or Dare” challenge.

“I’m a little confused,” I said. “Didn’t we agree that the doorbell ring occurred because of the local phone book delivery?”

“This time.”

She talked about the time our doorbell was rung on a Saturday night two years ago. She suspects the man who rang it was thinking (in her words), “If you’re giving out sex because you’re an MS person, here I am.”

She said she has since seen him in the company of a woman, so maybe he’s no longer interested in MS sex.

(Two years ago she did not have an official MS diagnosis, but there comes a point where keeping to chronology is not the issue. Interestingly, MS had been considered in 1982, but not confirmed.)

She asked me to repeat her theories back to her, to make sure I had understood them correctly.

By Tuesday she had found the file and emailed it to me. She tends to send me articles that she has copied and pasted and that are scattered on the screen with much excess type. I’ve gotten her into the habit of including the URL so I can access them directly. Easier for me to read them, that way.

This time, she’d retyped sections from this book scanned by Google. I went online, straight to the sex chapter, read it, and then we had a talk.

I pointed out, as gently as I could, that most of the chapter available to read talks about decreased libido in both men and women with MS. In the 10+ page chapter (Google would let me read only so much), one 11-line paragraph talks about hypersexuality, and then labels it as something that’s “relatively rare.” I emphasized to my partner that reading that paragraph had made me feel better. My tone was more like, “Hey, this is a relief!” rather than anything pointing out her misperceptions.

As it is, her retyped file includes her yelling back at the book. For example, she responded to, “Corticosteroids are used in MS for the management of acute exacerbations because they have the capacity to close the damaged blood-brain barrier and reduce inflammation in the central nervous system,” by typing:

“[what, by swelling?????? and reduce inflammatiion in the central nervous system [what, by shrivelling??? steroids on skin I can see shrinking swollen tissue. DO THEY MISLEAD HERE OR DO THE "bit players" do these actions? Potassium fits the 'move the blood-brain barrier' cell membranes closer together by sucking out water
INSTEAD OF REPLACING SALT
WHICH WOULD REPLACE HEALTH!!!!!!!!!!
Haloperidol fits by WREAKING DAMAGE WHICH THE IMMUNE CELLS
REMOVE!!!!!
HEY PRESTO, EVEN MORE DEMYELINATION!!!!!!
AND GUESS WHAT???!!!
here'S YOUR SWELLING!!!!!!]]

I’ve left-justified her text but left her capitalizations etc. in. She particularly blames the Haldol she had received in 1982 as the cause of her MS.

But at least she’s now decided that her thumb doesn’t have cancer.

She had overreached a bit on Saturday and has been dealing with muscle pain and fatigue, but the good news is that she wanted to get out of the house and join me at a friend’s event. Afterwards, she asked me for feedback on how she communicated with others. (I think she did a very good job, and told her so.)

The insight that led to her question has been a long time coming. I am tremendously proud of her. At one point, she even asked me if she was talking my ear off.

There’s her MS-acting-like-TBI, and there’s the neurological intersection with her considerable psychological/emotional baggage. She’s been doing some excellent emotion-work. In that respect, Sunday was clarity gold.

“I wish all those therapists had pushed me a little harder,” she said, adding, “Not that I would have allowed it.”

On Monday her thumb hurt. I quizzed her a little: where does it hurt? (Inside her thumb.) When did it start? (Sunday.) What kind of pain? (Intermediate and throbbing when she pressed down.)

She said, “It could be cancer cells,” and I thought of Amador’s false “E”. My conclusion: She’s looking to fill in a gap, that’s all, and cancer was the first thing that came into her head. She didn’t seem particularly panicky about it. No need for any kind of hair-trigger response from me.

(This has been a major lesson for me over the past couple of years, especially now that I know what her diagnosis is. I used to respond to her every concern and worry and try to get to the bottom of what was wrong. I was afraid of being negligent if I didn’t give it a full investigation. Or, if what she said seemed completely beyond the pale, I confronted her with what was “rational,” which just made her dig her heels in deeper. I finally concluded that she just needed a sounding board for whatever she came up with, and that my nonjudgmental acceptance of whatever she was saying (whether or not I believed it) was key, no matter what in fact she was saying.)

I said, “How about we just monitor for now?” She was fine with that.

Then it hit me: On Saturday she had picked up a dried-out, broken palm frond that she’d found in a strip mall parking lot. She had stashed it in the car. It now rests in the garage. She wants to cut it up into small pieces for compost, but that stuff is sharp and nasty. If it’s anything like the frond she picked up after Hurricane Wilma in 2005, it will live in the garage for years.

I said, “I wonder if that palm frond gave you a splinter.”

That sounded reasonable to her. (Whew!) I saw a tiny bit of swelling but no entry point. As my partner put it, “Let the body’s clean-up crew do its work.” She’s now comparing it to an ant bite. Over the past couple of days, the swelling’s gone down and her pain has decreased, so I believe that interlude has pretty much run its course.

Then today (several hours after we got the MRI news) she got all excited and burst into the studio with her new “correlation” (her word).

She said that older women with MS end up in “chintzy” (her word) nursing homes, which stock cheap toilet paper. The toilet paper is an irritant because pieces break off and …

I think you see where she was going with this (or, rather, where the pieces of toilet paper were going). And the irritation, well, stimulates.

And that discovery, she said, finally let her shoulders un-tense.

I said, “Great!” We actually did a little dance in a tight circle with our arms around each other’s waists, she was so happy.

Hours later she was still exulting, “I found the answer!” She added, “It’s a shame that if anyone else discovered this, they haven’t publicized it.”

So, here you go.

“Toilet paper masquerading as a disease,” she’s calling it.

I think I’ll refrain from telling her that the hypersexuality paragraph focuses more on men with MS. (“The spouse (usually the wife) is pursued incessantly…”)

I did this riff on “Rock, Paper, Scissors” a few years ago. Sometimes I view my partner’s thinking process this way.

I have had my share this past week. I’ve been told I need to simply to tell my family to change their times to accommodate my need for sleep. I’ve been told that I need to give up all my EP work, after all I’m not getting paid so the people I’m working with don’t need me. I’ve been told that when I tend to my hubby’s wounds that I’ve got the bed too low. I’ve been told that, well, if there’s no respite available then you should never consider ever again trying to do things that would require that. I’ve also been told that I am to “force” my husband to eat more vegetables to raise his alkaline levels. I’ve even been told that I’m not including my husband in daily activities.

It is so nice of these people to tell me all of this wonderful advice and how I really need to follow their instructions. After all, they have “been around” and since I’m so busy, I’ve obviously lost touch with reality and should know better. Everyone can balance getting five-minute items done in five minutes and at the proper times of day. I should be doing that, too.

Really? I mean REALLY?!!!

Let’s tackle that list that I’m not in touch with.

Child’s bedtime: You simply need to tell your child that bedtime is at 8 and they should just go to bed. Enforce it! You are a weak parent. Tell me, when Daddy is in pain or someone has called on the phone (who is a long talker and won’t stop) or supplies necessitate immediate refilling because as usual when you need them, they are not there. Daddy and everything else does not exist because it is 8 pm. Let me say something. Having Daddy home for several months from the hospital is still a relatively new idea for us. We are just now settling into schedules. Twinkie gets in PJ’s at 8 and bed at 9. Sometimes that’s on time and sometimes it’s much later. Daddy’s pain (or even cathing) takes priority and I won’t apologize for it. Unless someone wants to provide me assistance at that time of day. Overall she’s doing okay; we’ve been told for a five-and-a-half-year old she’s at a 5th grade reading level!

Give up your EP work: Ha! Ha! Ha! Never!!! Here’s why: Since no program exists (no kidding!) for respite for me, my EP work is my respite. But that’s not the only reason why. This has become my career and in the past several weeks, I have been participating in more or rather higher level meetings and meeting with new high level contacts. Those contacts and all others I’ve amassed have paid me–maybe not monetarily–but with a kind of friendship and compassion money can’t buy. One of my contacts referred me to a doctor in DC with the NIH who was able to diagnose hubby’s Central Neuropathic Pain, explain it and put him on medication that controls it. Another has arranged for hubby to participate in a medical transportation program and helped enable our daughter to become scholarshiped into a summer reading camp. A contact from the Miami area sends Twinkie care packages from time to time. A group that I work with is trying to set up an EP plan that accommodates people like my husband in disasters. Some of my contacts send me samples of things I can use. A network contact of mine put me in touch with a program that I am currently applying for on my hubby’s behalf to get the deck fixed with a ramp installed so he can have a second access outside along with a way to reach the basement for tornadoes. I’ve also acquired some deep friendships that on rainy days–they make the sun shine! OH! I almost forgot another network set of people are trying to get me into a county leadership program. I gather that someday if I’m ever allowed to work for a living, I think I’d have some job offers off of it.

The bed is too low: Did it occur to you that not everyone in life is taller then 5′ 3″?  I’m 4’10.” Forget the 1/4, 1/2, etc. inches. Just 4′ 10″. If I raise hubby’s bed as high as you want it, I keep pulling muscles in my wrists! Maybe I do know the proper level bed height so that I don’t pull any muscles, back or wrist.

No respite. Give up that idea you want to pursue: Is that your idea of encouragement? Is that how you tell someone to go out and return to being successful in life? That, when the odds are against you, just give up. When you work a 40-hour week, you do get to eat, sleep, etc. and even take some time off for vacations. Why can’t I? I work 7/24/365 as a caregiver. There’s a famous phrase. I don’t know who said it, but I like it. Lead, follow or get out of the way! It may be kind of direct but if you aren’t willing to cheerlead my family and I on to participate in things that would continue to improve us or our lives, then move out of our way! We are going to participate in our success anyway!

Force him to eat more vegetables to raise his alkaline: I have no clue if this is true or not. I accept that eating vegetables is healthy for you and I do feed them to my hubby on a very regular basis. But my hubby is an adult. He has no cognitive concerns. He can make decisions for himself. I just make his dinner. If you think that isn’t good enough then stand in my shoes at dinner time, hover over him and lecture him on the importance of vegetables. If you can force him to eat more then he already is, then I’ll follow. Otherwise I have no time for this, not until you’ve stood in my shoes.

You need to include him in more daily activities: The day I heard this, I actually asked hubby if this was true. I even asked if maybe I babied him on this item. “Where do you come up with silly ideas like this???” was his response. Someone recently had actually spent in-depth time with me telling me that I wasn’t having him do enough during the day. I need to get him out more. I need to take him to the mall. He needs to work on his computer more. He needs to eat dinner at a table. And so the conversation went. Well we don’t have a van that takes a power chair (saying “electric wheelchair” is discouraged these days). Think about oil versus water; in our case, car versus 350 lb. power chair. Doesn’t work. But if someone can get us one, we are there faster then a heartbeat!!! Some days he is pain, some days he sleeps and other days he is working on the computer from 8 a.m. to 12 p.m. I think he’s doing okay for a tetraplegic with three rare disorders and on six different medications (three of which are pain controlling). Dinner table: In our home that is an overrated idea. We don’t have a dining room he can access. We don’t really even have a table he can access easily. If even we did on the prior two counts, usually he’s addressing pain and exhaustion by dinner time so he’s in bed. And, rather then the family spending dinner time apart, he eats dinner in bed, Twinkie pulls out her little table and I eat on a folding table all in the same room at the same time. We are a family that spends a lot of time together–tables and designated rooms are not required to do that. Quantity or rather quantifying items aren’t important; quality time is!

…

Please don’t misunderstand me for a moment to think that I don’t want helpful advice or your concerns. I actually love each and every moment that you give me and share your concern with me. I know that you are saying you care, about my family, about me. That in and of itself is a gift I’ll receive anytime. But my favorite gift that is rarer then rare is when you step forward and say, “By the way, I am doing XYX for you…what day can I do it for you?”

So what do I think I need to do right now? Oops! It’s 9:46 p.m. and I’ve got to put away the dishes (so the help doesn’t put them in places I’ll never find), Twinkie to sleep and read her a book, let the dog out and spend time with hubby!

Hugs!

The Roaring Mouse

You already are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Now, we’re disrupting together to reinvent health care by making sure the family caregiver always has what he or she needs in order to continue to be a provider in the health care system.

We’ve formed a Disrupt group to share how you disrupt–for yourself, for your caree and for other family caregivers. And, oh, my, are you sharing Caregiving.com flyers wherever you go in your community. (Note: Old Billy suggested a tweak to the flyer–moving the Caregiving.com logo to the top; the link takes you to revised flyer.)

Thanks so much to all for your wonderful efforts!

We’ll continue to share how we’re disrupting, especially next week when We Break to Disrupt. We’ll have opportunities to disrupt together every day next week, including:

–On Wednesday, May 30, we’ll ask our Facebook friends to take a moment to thank the family caregiver in their lives. Look for specifics next week.

–On Friday, June 1, we’ll take on Twitter! Throughout the day, tweet your caregiving story and include the hashtag #icare with each tweet. I’ll prompt you with more details next week but wanted to give you the heads-up so you can join Twitter, if you’re not already using it.

We’ll give away prizes (including our Disrupt t-shirt!) every day next week. Be sure to visit Caregiving.com every day next week for details on how we’ll disrupt and for a chance to win.

Disrupt!

Related Articles

• Let’s Disrupt (caregiving.com)
• How Can They Reach You? (caregiving.com)
• The Saving Grace of Community (caregiving.com)
• And, What will You do For Me? (caregiving.com)
• What’s the “Stuff” Caregivers Say? (caregiving.com)
• Obama Administration Presents Plan to Fight Alzheimer’s Disease (caregiving.com)
• Just Added: Groups to Share About Caregiving Help in Your Community (caregiving.com)
• The Faces of Caregiving (caregiving.com)
• Dementia Care Answers: The Hygience Battle (caregiving.com)
• What Would Help You Do What’s Difficult? (caregiving.com)
• Tell Us: What Do You Now Accept? (caregiving.com)

Our discussion geared on letting go when we know we’re at the end–of a job, a relationship, of life. We talked about the tension that can come from resisting the end and the relief we can feel when we let go. When we hold on too long and too tight, we may be believe that letting go is a giving up. Instead, letting go is a way to walk with trust and peace. (Kathy, who joined us in the chat room, has another description for letting go. Listen to the end of the show to hear it.)

I’d love to hear your thoughts about our show after you’ve had a chance to listen. Please feel free to share in our comments section, below.

Related Articles

• Dementia Care Answers: The Hygience Battle (caregiving.com)
• What’s Your Soul Food? (caregiving.com)
• The Power of Our Mindset (caregiving.com)
• Talking Helmets, Malls and Belonging (caregiving.com)
• Is Grieving Acknowledged? (caregiving.com)
• What Would Help You Do What’s Difficult? (caregiving.com)
• What’s Your Caregiving Elevator Speech? (caregiving.com)
• What’s Your Bear? (caregiving.com)
• In Six Words, How Do You Describe Vulnerability? (caregiving.com)
• Tell Us: What Do You Now Accept? (caregiving.com)

Up until a few months ago, we could leave Gpa (FIL) home for an hour, if we gave him good instructions. Then, it became that we could only leave him home if one of the kids stayed home with him to keep an eye on him. Three weeks ago, he was fine to stay home with our nine-year-old son while we went to our daughters concert for two hours. They watched Andy Griffith and the Lone Ranger together. Our son is very capable of calling us if needed and we were less than 10 minutes away. My parents were next door if needed.

Now with this and a few other incidents, I am not sure we can leave him without adult supervision.

Just pondering on things, as we continue to see a steady decline in his cognition. Our kids love to help Gpa and are very good to tend to his needs. I struggle between the wonderful life lessons they are learning and placing too much on them. I try to only have them help with Gpa when they want to and that seems to work so far.

Anyway, I guess it is time to check into locks for the stove knobs.

Fortunately for me the Falls Specialist that the VA set up a consult with only called me on the phone and didn’t need to make a home visit!

I tidied up a few things up anyway, just to get a head start. Better safe than sorry.

I had no idea there was such a person as a Falls Specialist and I told her so.

FS said that she worked mainly with nursing homes for the patients safety.

I let her know that I appreciated her input on an individual basis and that there were many more at-home caregivers that could benefit from her knowledge.

So first things first.

FS gave me a run down of the things that she would normally recommend or order for a nursing home patient that was a fall risk. Everything from hip protectors to bed alarms.

She gave me a site to go to and look at products: posey.com

After looking at her suggestions I decided on items that I felt would be the most beneficial for Hubby while still maintaining his dignity and independence.

For hip protector I chose something that resembled sweat shorts. They will be easy on and off for Hubby as opposed to the undergarment type of protectors.

Another item she wasn’t sure if she could get approved but was going to try was a floor alarm.

She said it wasn’t requested as bed alarms were the norm and she knew I could get one of those. I asked her to try anyway. I wanted a floor alarm/alert because rolling around in my mind was the memory of Hubby’s stay in the hospital while they were testing for hydrocephalus. Because he has dementia and was a fall risk, they placed an alarm on his bed that went off when he tried to get up and go to the bathroom. After it went off the first time, he feared getting up and setting off the alarm again so he didn’t move all night and let’s just say when I arrived the next morning there was an upset Hubby lying flat on his back with a job for a nurse to take care of. I don’t want him to have that trapped feeling again.

Maybe with the floor alarm he will feel differently about the alert and not worry he can’t move around in his bed. We will see.

Since the Veterans Assoc. is supplying these items, I have no idea how much something like this costs.

I am very grateful to be able to receive the assistance. The VA may be slow and FS told me it would take at least a week to get the request approved and then how ever long afterward to get the order in, but when they come through, they come through.

After Hubby’s latest fall I wondered if he would even be able to walk on his own again.

He took a nose dive in mobility and required complete assistance with rising, transferring, even sitting and staying upright. But a week later, as of last night, he is more his own self (whatever that really is) and today getting around with no additional help besides the grab bars placed in the rooms or easily accessible furniture for clutching. Last night, while I slept he raided the fridge, long time since he’s done that. And this morning my FB status was…

Dear (Daddy), Thank you for getting up in the night to raid the refrigerator and spill cheese all over the floor. It was a lovely surprise to find first thing this morning. Much love, from Lady and Booger ♥ Oh and we didn’t care for the salsa so we let Mama clean that up. We’re sure she appreciates you too.

If you wish to participate, response is due by Monday, July 2, 2012. Yes, you are a stakeholder!!

Centers for Medicare and Medicaid Services Propose Rules on Home and Community-Based Services

Wednesday, May 23, 2012

The Centers for Medicare and Medicaid Services (CMS) recently announced proposed rules implementing State plan home and community-based services under Section 1915(i) of the Social Security Act. The proposed regulations are available online. This is a proposed rule which means that it is open for comments until July 2, 2012 (the Federal Register notice which contains the rules, incorrectly lists the due date for comments as June 4, 2012). Once the comments are reviewed CMS will likely issue a final regulation which means that this is the only chance to influence this important regulation.

These rules outline how the 1915(i) programs must be operated in states that choose to implement them. In addition, these rules describe the type of residential settings that will be considered appropriate for Medicaid-funded delivery of services through 1915(i) plans and the Community First Choice (CFC) option. CMS has indicated that it intends to apply these rules regarding settings to all Medicaid HCBS programs, including Medicaid 1915(c) HCBS Waivers, so that it has the potential for impact beyond the scope of the 1915(i) and CFC rules.

CMS has stated that they are very interested in hearing from the people who will be impacted most by these regulations – older adults and people with disabilities who use Medicaid-funded services and supports in the community. ACL has put together the following tips to help older adults, people with disabilities, their families, and other consumer advocates navigate the rulemaking process and make their voices heard. More information about the rulemaking process can also be found online.

CMS is inviting public comments on proposed language to establish the qualities for home and community-based settings.  CMS is specifically looking for feedback regarding several areas as outlined below:

• ·         The rule attempts to ensure that Medicaid Home and Community-based Services (HCBS) do not fund services in residential settings that restrict basic freedoms, except when there are health and safety concerns (see section 441.530(a)(vi)). Any restrictions of basic rights must be documented in the person centered plan.
• ·         CMS is inviting comments on the qualities essential for home and community-based services, including in residential settings, as proposed in this rule, and whether additional or different characteristics should be included. (See section 441.530)
• ·         Person-centered planning is the mechanism for ensuring that basic freedoms are preserved such as the ability to come and go as one wishes, retains basic rights to privacy, etc. The proposed requirements for person-centered planning are in section 441.665.
• ·         This rule may allow providers to require a person to receive a particular service as a condition for residing in a setting owned or controlled by the provider (see paragraph 77 FR 26379 of the Preamble).
• ·         The rule describes the requirements for states that wish to provide an option for self-direction (see section 441.674).

The Federal Register posting for this proposal is very long, and contains pages of discussion by CMS regarding the previous public comments they received and an explanation of the changes that they are proposing. The actual proposed rule language is included at the end of the document, which you can view here.

Stakeholders may submit comments via Regulations.gov or in writing to CMS at the following address:

Centers for Medicare & Medicaid Services, Department of Health and Human Services

Attention: CMS-2249-P2

P.O. Box 8016

Baltimore, MD 21244-8016

Today we answered this question from a follower on Twitter: Simple hygiene–why does it become a battleground?

After you’ve had a chance to listen to the show, please feel free to share your suggestions and tips that make providing personal care easier.

Update: Your Caregiving Journey airs tomorrow (May 23) at 11 a.m. ET (10 a.m. CT, 8 a.m. PT). Anna Stookey joins me to discuss why it’s so hard to let go.

Related Articles

• What Would Help You Do What’s Difficult? (caregiving.com)
• Tell Us: What’s a Memorable Shopping Trip with Your Caree? (caregiving.com)
• What’s Your Soul Food? (caregiving.com)
• Listen to Last Night’s Talk Show (caregiving.com)
• Tell Us: What Do You Now Accept? (caregiving.com)

The sleeping pill is working better for FIL. With a full dose, he was still getting up the first four nights several times. Then it was only two times, then one. Then last night, he got up on his own, tolieted himself, and went back to bed. This morning was the first time in seven weeks that I did not have to wash the bedding, his clothes, or the floor rugs!

This past weekend, dear SIL came down (she lives three hours away) to care for him for 24 hours. She came without kids, so she could have some 1:1 time with her dad for the first time in over a year. It was hard for her to take on the caregiver role of tolieting her dad, but she succeeded! So I was able to sleep (still woke up to hear everything), but it was nice to not be the one getting up. I could just roll over and go back to sleep.

My hubby and I were able to go to graduations together and have Bible study at our friends’ house. We have been having it at ours every time for the past six months, so I could slip out of the room and get FIL ready for bed. It felt so good to get away while dear SIL was here.

My hubby, who is a farmer, finished spraying today. He finished planting a week and half ago. That means he will be around more and not so exhausted. He will still have haying, spraying, etc. to do as the summer goes on, but the big push that lasted the past eight weeks is over. It will be nice to have a little more support from him. I have been trying to not ask him to help the past few weeks, because I knew he was working so hard.

My kids are so excited that school is almost over. It will be a transition to drivers ed, swim team, our home baseball league, and summer camp. I am looking forward to the fact that I am not working out of the home this year, so will be around more to participate in everything.

My hubby’s brother, wife and three kids are going to be here in a few days. They are missionaries and are back on furlough. They will be staying here on and off through the summer. I am a little (okay, a lot) overwhelmed by the thought of adding another family to the mix here. I am soooooo glad that they finally agreed to stay at my parent’s house next door, instead of their original plan of cramming into our home. I think it will be easier on FIL if they are not here all the time and all their stuff here too. We will still see plenty of each other I am sure.

Right now, I am working on counting my blessings and not being overwhelmed with all the summer activities and people. God’s timing is good and I am looking forward to their visit. Sometimes (okay, a lot of times), I get anxious about future plans. Things always work out, not necessarily the way I plan, but they do. I want to try to enjoy each moment and not be overwhelmed by it all. God is good, all the time.