Dictionary.com define responsible as “answerable or accountable, as for something within one’s power, control, or management.” The key component of this definition, Anna said, is the second part: It’s within your power, control or management.

And, that can be so hard in caregiving. You can may find yourself holding on to too much responsibility—otherwise it seems all will spin out-of-control.

Anna suggested that the presence of an overwhelming feeling of stress can be a signal that you hold yourself responsible for too much. What if you were to let go, Anna said, of what you can’t control?

I hope you enjoy our conversation. And, as always, feel free to add your thoughts and insights in our comments section, below.

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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.

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.

On Monday, I took time to turn in my retirement paperwork. I felt such an overwhelming sense of relief and lightness once I did this. My official retirement date is May 28th.  I am dealing with an increased number of doctor’s visits for Mom and lack of time to take care of my own health. And I really feel like I am not working at my job at the level I expect of myself. I find myself wishing that I had done this earlier.

We are still fighting Mom’s pressure sore problems. It gets better and then gets a little worse. This was one of our Friday appointments. The doctor prescribed another ointment and said he is going to schedule a home health nurse to come out. I hope that this will be a good thing. It feels like I am failing at my job of taking care of Mom. But I just want to be sure that this heals.

Fortunately, our first three Friday appointments were all at the same place. On the way home from these, I had a minor accident. Going around a curve, there was a big commercial truck pulling a heavy equipment trailer in the lane next to me. The trailer swung out a little too far and hit the right rear of my vehicle. No one was hurt and my car is drivable, but it took a more than an hour on scene to deal with the paperwork and then another hour on the phone. And I had to re-schedule the afternoon appointments. The most difficult thing for me is the extra time off from work and the extra hassle I will have to deal with to get the car fixed. I just don’t want to deal with one more thing.

Now, on to doing taxes for all Mom, myself and my brother who is no longer with us.

You’ll love listening to Kathy, who shared her perspective on how to stay in a good place in her caregiving role. Her perspective helps her manage those tough moments and days. We spoke about Kathy’s post a few weeks ago, when she wrote: “We have reached the end of our going. We shall now remain home unless we have Dr. appointments.” (You can read her post, Pushing Our Luck, here.)

I asked her for an update on this realization, this acceptance of a new change. “Hubby can’t live in my world,” she explained. “I have to live in part of his.”

We closed the show with Kathy’s tips to family caregivers. “Find something to smile about every day,” was on of the suggestions she offered. So, today, I’d love know, what will you smile about today?

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There’s so much to fear because it feels like there’s so much to lose: Your caree’s health, your health, your caree’s money, your money.

It’s all very scary.

Think back, though, to how you were before caregiving. Think about a fear you had. Do you still have that fear? Chances are, you’ve conquered it (or at least stared it down for a bit). Perhaps you had a fear of blood. Or, feared voicing an opinion to certain family members. Or, perhaps you feared uncertainty. Now, not so much.

So, today, tell us: What fear have you conquered? Most important: When did you realize you had overcome the fear? Please share in our comments section below.

Resources

• Our next webinar, Surviving Caregiving: Letting Go, takes place on Wednesday at 11 a.m. CT (Noon ET, 9 am. ET). Details on how to join are here.
• Buy our books: The Caregiving Years, Good Morning! and Take Comfort. You’ll have great companions to keep you company in the doctor’s office, during your dark moments and when you need a good friend.
• Still working on a fear? Schedule a coaching session with me. Your first 30-minute session is free; after your first session, we can create a coaching package that works for you.

We got through the medication issues and New Home seems to be giving Robert his medicine when he’s supposed to have it. I haven’t seen the extreme seizure activity that he had and that’s the best way of confirming what they’re telling me.

I also think I have finally convinced them to change his bed everyday and to make sure he puts his wet pajamas in the laundry and not back in the drawer. I thought I was doing them a favor by telling them BEFORE HE MOVED IN that he is incontinent and wets through his “brief” Every. Single. Night. I explained BEFORE HE MOVED IN that he tends to think since wet (um, urine soaked) clothes will dry by the next time he needs them, they don’t need to be washed. I didn’t tell just one person this information, I covered my bases and told the Regional Center counselor, the Director of the residential care program, the house manager of Robert’s New House and a couple of aides.

A few times when I visited, his bed was wet. I changed his bed and changed the pads. I put an extra mattress protector cover on his bed. I checked his drawers and pulled out the wet and/or smelly pajamas. One weekend morning I was visiting and an Aide was ready to do Robert’s laundry. I pulled all the pajamas out of the drawer and put them in the laundry basket and explained that Robert puts wet clothes back in his drawer. The Aide told me that was good information to know.

Yes, yes it is.  Gee, I really should have told someone about this habit of his.

A few days later, I get a phone call telling me that they’re trying to track down the source of urine smell in Robert’s room. Hmmm . . . I don’t know. . . maybe CHECK THE FREAKING DRAWER???

I think they’ve caught on to the wet sheets and pajamas now.

My latest beef (and, really, I am not that difficult to please) . . . okay, I’ll wait for my hubby to stop laughing . . . Anyway, my latest beef is that it is so difficult to pick Robert up and take him out of the home for a few hours. Last weekend, I called New Home in the morning and told both Robert and an Aide that Robert would be leaving after lunch and would be having dinner out but would be back before bedtime. I came by after lunch to pick up Robert and I picked up the necessary medications. I returned Robert just before bedtime (it was later than I had expected but this was the day Rob had all that seizure activity so I wanted to keep an eye on him as long as possible).

A few days later the House Manager told me that I need to notify her when I take Robert out of the house. Well, okay, but I did tell someone that I was taking him (and even if I hadn’t, I’m pretty sure someone would notice us walking out the door – the boy doesn’t walk that fast). “You need to tell me.” I need to call you when you are not at the house if I want to take Robert out of the house? “Yes. But it’s no problem to take him. You just have to tell me first. But it’s not a problem.”

Okay. I can follow rules. Tell me the rules and I’ll be happy to follow them (well, they have to be reasonable, of course).

Yesterday, I called to tell Robert that I would take him out for a couple of hours. He wasn’t going to miss a meal at New Home but I wanted to get him out for a while. He hasn’t started a day program yet and he’s bored. It’s not good for him to sit all day long watching television. He needs to do something. I called the House Manager and left her a message on her cell phone. I called New House and told an Aide my plans for the afternoon. “You’re taking Robert out?  Um . . .you can’t do that.”

I can’t have my brother? Really?

Breathe.  Breathe.  Breathe.

My patience was definitely wearing thin but I like this Aide and I could tell she was just “following orders.”

I explained that I had already called the House Manager and left her a message. She audibly sighed with relief but said she would have to call her, too. And someone else (the co-House Manager?) That’s fine, call whoever you need to but I’ll be there in 30 minutes and we will be going out for a few hours.

Goodness, I think I would have had an easier time getting a few hours with Charles Manson.

I arrived and was “allowed” to take Robert out. We left and went shopping for slipper socks (he’s missing one – not one pair – and it’s driving him crazy) and we got his new watch fitted properly. He enjoyed himself and I brought him back to New House in one piece.

We obviously have a few bugs to work out still . . .

Transitions and turning points are natural parts of the caregiving landscape. Make decisions, change decisions. Devise plans, undo plans. Settle into a rhythm and the beat changes.

One of the toughest transitions? Knowing when your caree needs more services.

Family caregivers know that things will change. They understand that their caree’s health will decline. They recognize that certain treatments may help but that, at some point, treatment alone will not suffice.

But knowing and doing are two very different things. It’s one thing to recognize when your caree moves into a new phase of the disease process. It’s another to stop and say, “She needs more help.” And then it’s another thing entirely to call a professional who can provide that help.

First, there’s the guilt thing. Why can’t I provide what she needs? What if the person I hire doesn’t do things right? What if he thinks I’ve given up on him by getting help?

If your caree needs more help, it doesn’t mean you have failed. It means that the person under your care has new needs to be met, needs that may require more specialized services or more hours of care than you can provide. You can’t add more hours to the day, so you may have to add more people to the caregiving equation…and it’s okay to do so.

Then, there’s the next step thing. What help do we need?

You’ll find your answers by taking time to assess the current situation. You may want to ask other family members and friends for their input. What do they notice? What services do they think would help? Even though it may be tough to hear their suggestions, input from outside your situation may provide you with helpful perspectives.

If possible, talk with your caree about your concerns. He or she will likely notice if you’re under pressure, which may in turn influence the quality of care you provide. An honest and open conversation may make all the difference.

If your caree visits the doctor regularly, then the doctor can probably tell you whether your caree’s physical condition requires more specialized services.

How you feel during your day may be the strongest indicator that caregiving is getting the best of you. You will know when you and your caree needs more services if you feel…

• …you don’t have enough hours in the day for what needs to be done (both as a family caregiver and as a person with other responsibilities and needs of your own),
• …stressed out (i.e., you can’t sleep, you’re depressed, you lose your patience easily, you’re eating too much, etc.),
• …overwhelmed (Which meds does she get on what day? When is his next therapy appointment? Where is the cancer specialist’s office located?), or
• …exhausted, especially after a good night’s rest or a period of respite.

If you identify with even just one of the above characteristics, then it’s time to evaluate the caregiving state of affairs. You can gain a better understanding of your situation by asking yourself these questions:

• Which tasks and responsibilities feel like a struggle?
• What times during the day do you feel the greatest amount of stress?
• When do you find yourself running late, losing your temper, scrambling for a solution?
• What do you find yourself dreading or hating?
• When do you find yourself in a tug-of-war with your caree?
• What times of the day are tough for your caree?
• When during the day does your worry about your caree intensify?

Your answers to these questions will help pinpoint when and with which tasks you need more help. Then, begin brainstorming options. Solutions may be scheduling more respite or hiring a cleaning service or delegating more responsibility to your children/spouse. Look for professionals, like home care agencies, to manage the more complex and intense care needs.

Above all, remember that being at your best means you have to take care of yourself. If you’re not factoring your needs into the equation, things will eventually fall apart.

Living in the moment with a spirit of flexibility is crucial to successful caregiving. Easier said than done, right? Of course – but there is great freedom in flexibility. Letting go means accepting what is to come without putting the entire burden on your own shoulders, a weight that even the strongest person cannot manage forever.

How did you know when you and your caree needed more help? What additional help did you get? Please share your thoughts in our comments section, below.

Visit SeniorsforLiving.com to find out about home care options that may provide some assistance to you.

Resources

You’ll learns lots of great coping strategies by listening to our monthly free webinars, all archived here.

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Electrical storms in the brain, I can do without.

Robert moved out of his Old Home and we have said goodbye to inattention, high staff turnover and a few unnamed folks so uncomfortable with seizures they asked him to leave (of course, the “official” line was quite different).

We have said hello to New Home with a 3:1 patient/staff ratio, familiarity with seizures as well as a promise of more age appropriate social interaction. Such high hopes!

However, New Home has brought an onslaught of seizure activity.

I first noticed a problem when Robert and I were playing cards a week after he moved in and he had two minor seizures lasting about 10 seconds each. Nothing too unusual except they were back to back. I thought the move may have caused his seizures to act up so documented the seizures and played a few more card games (he won, as usual).

A couple of days later, Robert had a seizure when I came to visit and, after greeting me with an exuberant “Hi, Trish!,” he fell backwards smack into his dresser, ripping his shirt and gouging his back in the process. (Yes, I tend to have that affect on people). 

The same night, he had back to back seizures while showering (thankfully, he uses a shower chair now) and started yelling during the second episode. Well, that’s new. Maybe it’s the stress of the move but more likely, his medications are messed up. Robert is on several medications and I keep a detailed list of correct dosages as well as the times he is supposed to have them. Before leaving Old Home I confirmed the medication information but the aide at New Home told me he was taking medications at odd times during the day. From her description, it was not consistent with the schedule that he was on at Old Home.

The next morning, I called the director of New Home and discussed his increase in seizures, the change in the presentation of the seizures and asked about his medication schedule. I had the neurologist fax over the medication list in case the problem was a mis-communication between Old Home and New Home (a highly likely scenario). She assured me his medications were the same dosages but said the times were adjusted to fit with their other medication dispersement times. I went through the daily schedule with her and told her what the times should be. She said a few changes would be made. All sounded good.

Two days later, Robert was visiting at my house and had back-to-back seizures lasting at least six minutes each. He tried standing and tried changing his clothes. He grunted, moaned, twitched and shook for close to 15 minutes. When he could talk, he told me he wanted to put his pajamas on, clearly not realizing he was at my house. I was about to call 911 when he stopped seizing and was coherent again.

Obviously, there’s still a problem.

I compared the medication schedule from the Old Home with the New Home medication schedule and found a difference in one of the meds. They were still giving one med a couple of hours later than normal. What are these people doing?

When I returned Robert to his New Home that evening, I talked with the Aide who put me in touch with the Nurse. I explained that because his medication schedule is not consistent with what he was used to it is affecting his seizure activity and it needs to be changed back immediately. She explained they were trying to avoid Robert having to take medication when he is away at a Day Program. Really? Well, either the Day Program deals with medication or they deal with seizures. I vote for medication. I asked her to change the dosage times back to what they were before he moved in and to not make any other changes unless directed by his neurologist. She agreed and I confirmed today that the change back to his usual medication schedule was made. Hopefully, that’s the end of this problem but I will continue to closely monitor it.

As Robert’s advocate, I realize that I sometimes have to create a few storms of my own in order to get him the care that he needs. And, believe me, I can give a good Midwestern thunderstorm a run for its money.

My husband and I arrived at breakfast to get Robert all packed up. Robert enjoyed a leisurely breakfast grinning from ear to ear each time Richard and I walked past him in the dining room with his boxes, a recliner, bags of pillows, clothes and more boxes.

Robert was excited.  I was worried. Will all this stuff fit at the New Home? Will the aides treat Robert nicely or will they be annoyed by his repeated jokes about moving to New York City? Will they help him adjust to new routines and let him hang on to old ones (the boy has to watch Jeopardy & Wheel of Fortune!)?

We arrived at the New Home and were warmly greeted by the House Manager. Four of the residents were at a Day Program, one left at the house (our next search is for a Day Program for Robert). There were four employees at the New Home to these two residents. That alone was a huge change considering it took an hour for me to track down a nurse this morning at the Old Home. Robert greeted everyone, found a comfortable chair and sat to watch television in the living room with the other resident. My husband and I hauled in boxes, unpacked, filled drawers, organized shelves and hung clothes and pictures.

I worried that Robert wouldn’t be able to find his pajamas tonight; I walked out of his room to find him sound asleep in the recliner in the living room without a care in the world.

Admission paperwork had to be signed (and read, of course – you work for attorneys all your life, you read the paperwork!). The New Home can take Robert to his regular doctor visits; I politely declined that assistance. I need to know what happens at the neurologist and won’t have some stranger take him. They provide toothpaste and shaving cream but I know which ones he likes so I’ll provide those too. Thanks for the offer, though.

I requested they don’t call an ambulance for every seizure (he’d live in the ER if they did that). The New Home is not afraid of seizures—they’ve seen them, other clients have them, it’s a fact of life. The Old Home was not familiar with seizures and called 911 every time Robert had one (until I convinced them it was unnecessary). Robert has had seizures for so many years that I forget how frightening they can be to those not familiar with them. My other brother and I always keep an eye on Robert in case he shows signs of “going down.” It’s best to catch him on the way down so it breaks his fall a bit (and saves the walls, tables and children) but sometimes he falls. It happens. He wears a helmet now (although he didn’t for a long time so has a permanent bald spot in the area that usually needed stitching up).

I woke up Robert so he could also sign the paperwork and I continued to worry. Once the excitement of the New Home wears off, will he actually still like it here? Will he feel like this is his “home?”  Will he be happy, challenged and able to maintain as much independence as possible?

I gave Robert a tour of his new room. Your socks are in the top drawer. Your pajamas are in the second drawer. Your toothpaste is in this bucket. Your television will be hooked up to cable in a couple of days. Your Bible is on top of the dresser. Any questions?

Is it lunchtime?

Yes, yes it is. I took Robert to lunch and returned him after he ate his 2^nd most favorite meal (cheeseburger). He told me he was excited about teaching his roommate and “that lady” how to play the card game, Kings Corner. I worried that they wouldn’t want to play with him.

I finally left and he went back to “his” spot in the living room. I see another nap in his future.

Tonight, I called to check on him. He had taught one of the Aides how to play his favorite card game. I asked if he liked the New Home more than the Old Home.

“It’s nice,” he says.  “There’s two people in the bedrooms, though.”

Well, yes, you have to share a room. We talked about that, remember? You said that would be okay, right? Will that be okay?

Some silence.  Rob?

“It’ll be okay.”

Okay, good. You call me with any problems.

“Okay. Good night and God bless you.” Ahh, the brush off! Wheel of Fortune must be calling.

Goodnight, hon.

He seems fine. Settled. Adjusting pretty well for the first day.

Still, I worry.