Thursday, August 11, 2016

Let’s Be Kind to Our Fellow Caregivers (and Ourselves)

Online support groups can be a life-saver for caregivers. It is important for us to know others are going through similar situations so we don’t feel alone or so we can learn something new about caring for our loved one that others have tried and that works. (I learned quite a bit about incontinence care and the importance of maintaining a person’s dignity from my soul sister, Kathy Lowrey, who cared for her husband when he had Lewy Body Dementia.)
Trish, Robert and Richard (2014)

I am involved in several online caregiver support groups. Sometimes I actively participate and sometimes I look at the comments and information posted but scroll past without commenting. Most of the time I am heartened by the love and care people show one another. 

Occasionally, though, I cringe when scrolling through comments made to people reaching out for help. The majority of the time people are kind but sometimes people are judgmental and harsh and impatient toward other caregivers. People in similar situations!

Every caregiving situation is different with different people doing their best caring for loved ones in a variety of situations. Caregivers can be in different stages of caregiving, can have other life situations that make their situation difficult and can have different emotional strength and attitudes at this particular time in their lives.

It is important to remember that each of us is only who we are at this moment in time in this set of circumstances based on our past experiences and our hopes for the future. Everyone is different and it does not help to make someone feel guilty because they are not handling a situation as well as we think they should.

Caregivers can help themselves and others keeping these reminders in mind.
  • Listen instead of comparing yourself to other caregivers. Please. I have never met a caregiver who thinks their situation is the worst. Caregivers may think they have it difficult but most think someone has it worse than them – no matter the situation. It is not helpful to minimize our caregiving situation (or someone else's) because another caregiver’s situation seems worse (or better) than our own. It doesn’t matter. Each caregiving situation is different yet we all go through the same emotions, struggles and heart-wrenching decisions at some point.
  • Be supportive instead of judging other caregivers. Robert goes to a Day Program and he sleeps a lot. My husband is my co-caregiver and gives me a tremendous amount of help with Robert. He has lived on his own, in a Skilled Nursing Facility, in an Assisted Living Facility, was living in a Residential Home for the Disabled. Each of these situations is difficult in its own way. I know other caregivers who made the decision to permanently place their loved one in a facility and they are either relieved, devastated or a little of both. There are caregivers who work full-time and have to leave their loved one at home with the knowledge they could have a devastating seizure or fall at any minute. These caregivers are worried sick enough and need support, not judgment or a declaration that they are not “real” caregivers because their loved one lives elsewhere or is not cared for by them 24/7.
  • Educate instead of thinking less of other caregivers. Here’s my confession: I was unsure how to put a brief on my 220 lb incontinent, adult brother. I know how to put a diaper on a baby but a standing, wobbly adult?  I struggled. At first I needed an extra hand or two to get it on snuggly and, I actually wasn’t even sure at first if the tabs should go in the front or back! (The tabs go in the back and then tape to the front of the brief.) Help new caregivers learn the basics without making them regret asking the questions.
  • Recognize when we want to vent instead of problem solving. Sometimes we are losing our minds when caregiving and have no one to talk to. Let us rant and rave and tell you how tired and awful (and then guilty) we feel without telling us it is time to put our loved one in a home or that we need a vacation (especially since respite is so difficult to get sometimes).
  • Let’s laugh together and not always be so serious. Caregiving is full of serious health issues, impossible medical decisions and extreme concentration so mistakes are not made. But we can’t be serious all the time! Caregivers know (but may not admit) that there can be some very funny caregiving situations. We have to laugh! Whether we laugh together or alone let’s at least recognize the absurdity of some of our caregiving situations! Some of the best friends I made while caregiving are ones I could laugh with about our crazy situations.  
Everyone knows caregivers need more support from non-caregivers, from the government, from our employers and from our families but we also need support, love and kindness from each other.

We can all use more kindness in our world so let’s keep this in mind when dealing with each other. Let’s also remind ourselves to be kind not only to one another but to ourselves.

We can do that for each other. 

Monday, August 8, 2016

Making the Most of Stay at Home Respite

We created another Stay at Home Respite this weekend like we did in March when actual respite fell through. We decided it was time to do it again.
Dinner out with my sweetie

I am not going to lie: it would be really nice to have a “real” respite.

You know, the kind where my alarm does not run my life for dispensing a total of 32 pills six times a day, beginning at 5:30 a.m.  Or the kind where I have a day or two where I don’t have to worry about the morning routine of waking Robert early enough to have time to help him bathe, brush his hair, dress, brush his hair, eat, go to the bathroom, clean him up, brush his teeth, shave, brush his hair by the time the van arrives to take him to Day Program. (But not waking him so early that the lack of sleep causes him to have seizures.)

It would be wonderful if I didn’t have to always wear a watch with a second hand available to time Robert’s seizures (which have been awful this past couple of weeks).  It would be a relief not to have to do several loads of laundry every day. It would be a nice break to have a relaxing dinner instead of prompting Robert to eat so his usual 90 minute meal doesn’t turn into a two hour event.

Oh, I sound terrible!

I have it lucky, I know. I know this!

I am lucky that Robert has a Day Program he loves and goes to four or five days a week (depending on his seizures, doctor appointments and level of tiredness). 

I am lucky that my husband helps me care for Robert and doesn’t complain about any of the tasks involved.

I am lucky that I have a job that, although stressful, provides paid vacation and a decent salary. We are by no means rich but we are comfortable enough to pay our bills on time and go out to eat. (Believe me, I have had times in my life where that just was not possible so I understand how lucky I am.)

Yes! I am incredibly lucky as a caregiver! I have a better situation than many, many caregivers. I do understand this and don’t mean to whine.

I am just tired.

Ahh! Breakfast out!
“Real” respite doesn’t happen because the options we have for care facilities are limited. Robert is serviced through the local Regional Center and as his caregivers we are allotted 14 days per year. WOW! I can’t even imagine needing 14 days every year. I would like just a couple of days every now and then. Next year, I would love to have a week when my daughter is getting married but, other than that, let’s just have a weekend!

Apparently, this benefit is one of those that are on paper only. It sounds good but making it actually happen is a whole different story. My latest attempt went like this:

Me: Hi, [Service Coordinator Name]! I would like to set up a weekend respite.

SCN: Great! I have several homes available right now. Let me know when you want to schedule.

Me: How about the weekend in three weeks? We’re flexible so let me know if another weekend works better.

Two days later:

SCN: Well, we are down to one home with availability.

Me: I’m confused. I thought you had several homes available.

SCN: Some of the homes don’t accept people in a wheelchair or only accept female clients. It doesn’t look good for this last home now either.

Oh, I see.  So I can use my 14 days when Robert becomes a woman and is no longer wobbly and a fall risk when he walks?

Is that a puppy on a unicorn in a field of sunflowers up ahead?

Forget about the 14 days. If it makes the State feel better about itself for providing this “benefit” then so be it. I will go to Plan B.

Plan B is my Stay at Home Respite.

Some caregivers may get upset about me calling this respite but it helps me. Yes, my days will involve the same amount of medication and alarms and bathroom clean up duty (and possibly seizures) but I am going to do something a little different and have a little different attitude before I lose my freaking mind! SO I WILL CALL THIS RESPITE, THANK YOU VERY MUCH!

I know I am lucky. I do!  (See my “I know I am Lucky List” above)

My Plan B Respite involves taking vacation from work so Richard and I can spend a few hours together during the day while Robert is at Day Program. Yes, I feel guilty for sending Robert to Day Program while I am on “vacation” but Robert does love his friends and the staff at program. (It kind of makes me feel less guilty to say that.)

Robert at the movies!
During my respite, I think it is important that Robert do something a little different too. He enjoys a break from routine like the rest of us!  My plan was to do something different for Robert on at least one day and to do one thing out of the ordinary every day for me and Richard.  

I was able to get a massage on Day One. Richard and I went out to breakfast a couple of the days (wow! Just the two of us!); we took Robert to see Star Trek one afternoon (he slept through some of it but declared it EXCELLENT!); I got a manicure with Rach one day and a pedicure with Richard another day. Richard made us all homemade pizza another day! (Robert, not surprisingly, declared it DELICIOUS!)

Richard and I were even fortunate enough to go out on a dinner date thanks to our daughter staying with Robert.  Rach insisted it was no big deal since Robert was already in bed but she kept an eye on him, kept him in a steady supply of Family Feud episodes and gave him his bedtime medication. She may not think she did much but she did. Allowing Richard and I to spend a few hours eating dinner out and being able to talk about things not related to caregiving (although we did some of that too) was a huge help.  Not having to worry about whether there is enough space at the table for a wheelchair or if they have a bathroom that can safely accommodate the wheelchair, Robert and one of us gave us a much needed break.
Dessert was so delicious I forgot about the "before" pic! 

This may not be considered a “real” respite but it was enough for now for us. I am still tired but I am grateful for the extra time spent with Richard. I am grateful for a fun afternoon with Richard and Robert seeing a movie. I am grateful for a job that provides paid vacation days. I am grateful for a daughter who helps without complaint (and one who loves a manicure as much as I do!).

And to the State of California: You can have your 14 days. Caregivers are creative! We can make the most of a situation with or without your help.  

I am satisfied with creating my own respite to give me a boost of energy which, hopefully, will last me another six months.  I am grateful for the help from Richard and Rachel and the positive attitude that Robert has 99% of the time.

I know I am lucky and now, after a made-up, patchwork of respite, I am just a little less tired and have a much better attitude.

Yep, I am lucky and grateful. Although I could use just a bit more of that lava cake!  

Thursday, July 28, 2016

How a Childhood Gem Let Me Off the Hook

After going through a house move and an office move last year you would think the last thing I would want to do is unpack more boxes. For some crazy reason, though (probably because I am actually crazy), that’s exactly what I did last weekend.

Richard went to the Bay Area with his mom and brother to see his other brother’s new grandson (exciting!) while Robert and I stayed home and hung out with the dogs. Robert slept quite a bit which gave me an opportunity to get things done around the house.

I started by creating the to-do list of all to-do lists.

I have no idea why I had so much energy – especially since I had given up caffeine the week before. You’d think I would be comatose on the couch, unable to move without my Venti  Non-Fat, No-Whip Mocha (or two) coursing through my veins.

Mmmmm, mochas.  . .

Anyway, I digress.

I started by looking for copies of my book, Forever a Caregiver. I was sure I had extra copies at home and thought they might be packed away in a box in the garage.  I was determined to find them!

Well, one thing led to another and I searched through several boxes in the garage, which then led to (don’t ask) cleaning out and reorganizing not only my bedroom closet but my office closet and Robert’s closet.

Then I cleaned the house.

I started wondering if I accidentally drank actual coffee instead of the stuff in the cabinet labeled decaf.

I never did find my books but I did empty a lot of boxes. A delightful surprise when emptying those boxes was that I found a lot of old photos and even ran across letters I wrote home from my Girl Scouts summer camp.

Oh boy!

These letters were not only fun to read, giving me a glimpse into my 10 year old mind but they also gave me a gift. As a young adult, I had reread some of my diaries which caused me much distress.  (Note to millennials: these were small journals with tiny little locks that people used to write their innermost thoughts and then scream and yell when a pesky little brother tried to break the lock and read all the secrets contained inside. You know them now as “Facebook” and “Snapchat.”).

In one of my diaries I asked “Diary” why little Robbie bothered me so much. In fact, I told Diary that I didn’t think I even liked him.

Oh, ouch!

That was tough to read. Was I a terrible older sister? My goodness, my little brother went through all kinds of crap at school and with having seizures and here I was saying I didn’t like him? Where was my compassion and empathy and patience?!

These letters that I wrote during summer camp (and Mom was kind enough to save for me) showed me a different kind of big sister than Diary had led me to believe.  I only found three of the letters but they were enough to reassure me that I did have compassion and empathy and patience and didn’t just accidentally come by it as an adult.

Let me share these letters with you. Keep in mind I have horrible memories of summer camp. My homesickness knew no bounds and I have no idea why I agreed to go year after year.

I suspect these were written in 1971 or 1972 but I don’t really have a way of knowing for sure.  I changed my nickname from “Patti” to “Tricia” when I was 12 so these were written before the big name change.  (I am including the typos and misspellings even though it kills me to do so!)

July 13

Dear Robbie,

How are you? I’m Fine.

Thanks For the Letters. The’re cute. Only two more days and I’ll see you!

Did you get mom a birthday present? Have you had a wedding rehursul yet? Did you get your tux? IF you did I bet you anything you’ll be the best ringbery in History. I love you. Have you been swimming? I Hope so! If you were Here when there was mice in cindy’s Footlocker you’d Kill them, I know.

Well bye!

Luv ya,


P.s Please write

Was I actually advocating for killing mice? Yikes! Definitely was my pre-Animal Rights/Vegetarian days.

Then there’s this (and I don’t think we were required to write home daily – it was the homesickness, I’m sure!):

July 14

Dear Mom & Dad,

How are you? I’m Fine. We just got back From the overnight. I didn’t write last night cause we could not. We had to go to Bed. I only have four pieces of Paper so I’m writing you together, the boys together, grandma and grandpa together & the other grandma & grandpa togeter.

Please send me Eddie’s, Rogie’s, Great grandma’s address (nevermind) cause it’ll be the Last day when I write. Tell Eddie Hi Rogie Hi Julie Hi Lynda  Hi & steve & tod Hi, ok? Are you still working good, dad? I’m sure you are. Well sorry it was such a short Letter but I don’t have enough paper.

Luv ya,


P.S write Soon

Apparently, my paper multiplied . . .

July 14

Dear great swimmer & handsome

How are you? I’m Fine. I’m writing you together cause I only have 4 pieces of paper. We are about to Have Lunch. What are you haveing For Lunch? I don’t know what we’re Having. are you going swimming at cryer ave? I’m going at 2:30 I have to eat lunch  Bye

Luv ya,


P.s Write soon

Posing with Dad, his parents and two of his brothers
("Robbie" is on the left, Other Brother is next to him)
Finding these letters not only gave me a slightly better looking garage but gave me some peace of mind about how I treated “Robbie” when we were kids. I never really thought about being a sibling of someone who needed extra care and attention. It never felt like it affected me as a child but I now realize it affected me as an adult. Not because I felt left out as a child and carried that with me (that was obviously impossible with our close, extended family) but because as an adult I wondered if I treated Robert with care or if I was impatient and terrible toward him and felt guilty about it.

I definitely had my moments of impatience with him that I distinctly remember and that most likely ended up in my diary but I realize I did care about “Robbie” more than I realized.

Thank goodness “letting go of guilt” can be crossed off my to-do list.

Wednesday, July 20, 2016

Family Traditions: Going to the State Fair!

One of our family traditions is to walk around the California State Fair in 100 degree heat, maneuver between the crowds, eat the latest, crazy concoction (deep-fried Twinkies are not nearly as good as you might imagine), see the animals and, if we’re lucky, see a cow giving birth!

It isn’t for everyone.

People I have convinced to go with me under the guise of “it’s the best thing ever!” have dropped out from going, well, twice.

Mom decided “never again” after trailing behind me and four-year-old Rachel in 110 degree heat and nearly fainting.

Come on people! Keep up! It’s a dry heat!

“You can come back to get me on this bench when you’re done” she quietly uttered as she patted at the sweat pouring down her face and neck. It actually was probably more like “There is no way IN HELL I am moving from this bench and DO NOT even THINK about inviting me next year!”

Soo, I suppose this means next weekend is out too?

Yes, I would take Rachel to the fair a few times each year. Yep, you heard me, we went more than once each year. Hey, there’s a lot to do! Face-painting, feeding the baby animals, watching the bungee jumpers plunge to their near death, eat, ride a few kiddie rides and win a goldfish or two (which, by the way, only live about three days. Now that was traumatic.).

Rach loved it! I mean, sure, she was little and was my captive but she really loved it. (Right, hon?)

Christopher and a friend tagged along one year when everyone else was “busy” and they were teens who I somehow managed to pull away from their video games (it must have been the promise of a lot of food.) We stumbled across the live-birthing area and, as they say, timing is everything! We witnessed a calf being born which both fascinated Christopher and his friend and traumatized them.

Soo, Chris (and his friend) are out as repeat visitors.

One year I even convinced my best friend to go with me and to bring her nephew. Two of us had a good time anyway. Did I mention BFF isn’t really a crowd-loving, junk-food eating, people-person?  Bonus: I think Nephew went home with a goldfish! Which lasted a few days . . .  

Sooo, BFF is out.

One year we had my cousins and aunts and uncles visiting from my home state of Nebraska (GO HUSKERS!) and they wanted to do something fun. I casually mentioned the State Fair was open and they actually wanted to go! Oh my gosh! This was the best thing ever! I didn’t have to bribe them or anything!

I haven’t seen them since but I think that has more to do with everyone being busy and several hundred miles away than the State Fair. I’m pretty sure.

Now that we care for Robert, I have another captive to take to the State Fair! No, no; he actually wants to go! Really!

Richard comes along but I think he considers it more of a duty to his crazy wife than something to look forward to every year. Although I have seen him smile plenty and he always readily says yes to my suggestions of going. He even has his favorite places to visit!

I think it might be growing on him!  

Much to my delight, my original little captive even comes with us! We don’t do face-painting like we did when she was four but we do spend some time with the goats (one of her favorite animals) and visit the birthing center (darn! No births this year!). We visit the exhibit halls now and not just for the refreshing AC.

We always end with some State Fair ice cream that only tastes delicious if it is running down the cone making our hands a sticky mess. (Robert has to eat his in a cup because he himself might melt if his hands got sticky.)

I absolutely love family traditions. They might be messy and they may slightly change from year to year and sometimes they might even be skipped for a year or two but they still leave a warm spot in my heart with memories to cherish forever. 

Although that warm spot might be heatstroke from the 100 degree weather.

Either way, it is one of my favorite family traditions.