Moment of Respite – A Dog Comes to Visit

Dog give me strengthI didn’t know how he would react but I was ready to try anything to brighten his day and relieve some of the stress we were both feeling. His daily walks were a thing of the past. His diet was severely restricted and either he wasn’t sleeping well or he was sleeping all the time. Mike and I discussed it and decided to contact some people we knew who trained therapy dogs and request a home a visit. We had heard stories of how people in nursing homes and hospitals would smile and begin to share stories about pets they had when the friendly animals came to visit. Nurses and staff members reported that patients were happier and more alert for hours, and in some cases days, after they dogs left. We felt it was worth a try.

I wish I had a picture of that visit. I had let Rodger know he was going to have two visitors, one of them a dog. He was skeptical at first.

“What am I gonna do with a dog? I can’t walk no more. Who will clean up after it?”

“The dog isn’t going to live here. He’s coming for a short visit.”

“Why?”

“For something different. To help pass the time.”

“Do what you want. I hope it doesn’t pee on the floor.”

Rodger rarely smiled but when a beautiful golden retriever slowly entered the room and sat at his feet he couldn’t help himself.

After introducing herself and her dog, who was wearing a vest identifying him as a therapy dog, the volunteer sat quietly and allowed Rodger and Casey to get acquainted.

Shortly after the smile appeared Rodger slowly leaned over and tentatively began to pet Casey.

“Did you have a dog as a pet when you were a boy?” the volunteer asked.

“No. No pets. In the old country dogs are for working. Not like here where pets are spoiled.”

And then he began to talk. He spoke about life on the farm. For a while he went back to a time and place where he was able to walk outside in the sun and work up an appetite for homemade pasta and oven fresh bread. He sat up straighter and the light so rarely seen in his eyes made an appearance. I could feel my neck muscles relax as I watched the transformation. He may not have had a pet growing up, and to him dogs were meant to work, but what he didn’t seem to notice was that this one was working too. Casey was working a little bit of magic for both of us and for that I was grateful.

For more information on the positive impact dogs can have on loved ones with dementia go to:

http://www.alzheimersproject.org/About-Us/News-Photos-and-Calendar/Latest-News/Pets-and-Dementia

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NaBloPoMo November 2014

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Caring for an Elder with Dementia: Top 3 Negatives Made Positive

Guest blogger, Derek Hobson, shares how the difficulties that caregivers encounter can help us grow.  Welcome Derek.

Caring for an Elder with Dementia: Top 3 Negatives Made Positive
By: Derek Hobson

Becoming a family caregiver wasn’t easy and there were times where I downright loathed all the responsibilities. But when my grandmother passed away and my duties were lifted, there was this… elation that occurred. I don’t want it to sound like I was thankful that she passed, because certainly the first few weeks were dreadful, but I didn’t want to feel guilty for feeling relieved that she had found peace. Part of what made me feel less guilty was the fact that I had contributed in such a big way, but more than that, I felt less guilt because caring for my grandmother made me capable of handling so much more.
At the time, of course, many of the tasks were unbearable (which I’ll get to in the list), but once they were completed for the final time, I saw how my grandmother had helped me grow. Things that I hated doing, made me more prepared for future situations. It’s almost like – no, it absolutely is like yin and yang. Two supposedly opposite sensations, turned out to be complementary. By struggling to take care of my grandmother, I found the positives in every negative task. Admittedly, that not make a ton of sense without context, so here are my top 3 negatives made positive.
1. Sleeping in Front of the Door
My grandmother had dementia and even though we wheeled her around the house, she was not confined to the wheelchair. While it wasn’t often, a few times she would sometimes stumble out of bed and walk around the house in the night. It could’ve been much worse, I mean, I’ve heard of stories of seniors leaving the house at night and wandering around the neighborhood. While this never happened to my family, my grandfather would not hear of it; his precaution was to rotate who would sleep in front of the door to make sure she didn’t wander off.
This wasn’t simply uncomfortable, it was unnecessary! I made multiple suggestions for how we could seal the door, set up a blockade, or rig a bell, but my mother reminded me it wasn’t simply making my grandmother comfortable, but my grandfather as well. So, I begrudgingly slept in front of her door on more than a few occasions.
At the time, I never would’ve thought this would evolve into a positive thing, but it has. I don’t know how many people have researched power-napping. The idea being that if you nap for 15 minutes, you’ll feel as refreshed as if you slept for two hours (or 8 hours in some cases). Well, I could NEVER power-nap. I never knew how long to set my alarm for because I needed some time to fall asleep, but then, if I set my alarm for 20 minutes, I would be thinking of how limited my time is, I’d be counting it down rather than focusing on getting to sleep; it was dreadful!
Now though? After sleeping in front of my grandmother’s door, I can sleep practically anywhere. It may sound silly, but it’s a great thing. If I had a long night and have a big presentation in the morning, I nap for 15 minutes in my car, get up and do it. If I’m exhausted after the gym, but it’s still early in the evening, then I’ll nap for 15 minutes, and head out. I can sleep in my car, on a plane, the stairs – I haven’t tried it, but I’m sure I could. I am definitely better for it.
2. Communication
Eventually, my grandmother’s dementia became so bad that she couldn’t form sentences anymore. However, when it hadn’t progressed that far, she would talk to me, tell me stories, and ask me questions… and then repeat those questions and those stories. The repetitiveness made me so frustrated – especially when I thought about what I’d rather be doing.
Now, this negative didn’t happen overnight, but after several months, I realized what a unique blessing this could be. I’d often been told that I wasn’t a good listener… well, actually, if I’m being honest, I was told, “you don’t respect people when they talk to you,” which seemed harsh at the time. However, as time went on, I realized what that meant; the very thing, I said above, that I grew frustrated when I thought about what I’d rather be doing.
When I stopped thinking of where I’d rather be or who I’d rather be with, I started listening and was given the gift of communication. When my grandmother repeated questions to me, I didn’t always answer with clarity or with specifics. I would answer robotically or with generic answers. Later though, I started actively listening and really empathized with my grandmother. There was a stark difference between when I would just answer monotonously and when I actually started responding.
Since then, I’ve noticed in my personal life that I butt heads with people less often and when I do it’s resolved with concise communication.
3. The Stuff You Don’t Want To Do
I never used to talk about this stuff openly, but it’s something I’m sure many family caregivers experience. The stuff you don’t want to do… specifically dressing, bathing and any sort of clean-up that needs to happen.
My grandfather was a saint and tried to take all this on by himself, but even he needed a break and of course, that meant I was runner-up.
I’m not going to lie to you and say that I enjoyed any of this stuff… looking back, I’m actually surprised I managed at all. But without going into the details, I have since learned that I can handle just about anything. If it’s gross, sticky, smelly – doesn’t matter!
I’m still a young guy (relatively), but when my friends asked me to look after their kid for a day, I changed diapers with the best of them. I’m sure there are people who are pretty squeamish, but with no previous experience with babies, I could change diapers and clean spills without any uneasiness. Pretty much anything others don’t want to do, I do without a second thought.
Again, these aren’t things I relished at the time, but they’ve had a positive impact on my everyday life. Being a caregiver is not easy by any stretch of the imagination and it’s why I’m thankful that today I can work with a handful of people who actively lessen the load of family caregivers, but the rewards are manifold and actionable.

Derek Hobson, BA, is the editor for ConciergeCareAdvisors.com, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.”

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Good Morning Caregivers

A Caregiver’s Dream

One of the most common bits of advice for caregivers is to get a good night’s sleep.

“Goodnight.”

What wonderful images that simple word brings to mind.  I close my eyes and see myself drifting off to sleep in the biggest most comfortable bed on the market. I’m covered with a whisper soft blanket. I’m hugging my pillow. A tiny smile hints at sweet dreams to come.  When morning arrives I will awake refreshed ready to face another day caring for my loved one.

That is what I was supposed to do, right? That’s what all the experts said.  Trust me, it’s what I would l have loved to do.

Enter reality:

“Goodnight, Rodger.”  “Goodnight.”

It was eight o’clock in the evening and he had just had his last breathing treatment of the day. Only one round of medications was left to be taken. I had two hours to spend some time with my husband. We were exhausted and only half listening to each other.  I kept one ear open in case Rodger needed me. Nodding at my husband to indicate I was paying attention, I was also fighting to keep my eyes open.

At 10:00PM I got up and took Rodger his last medication of the night.  He took it without complaint. Yea!

“Goodnight, Rodger.” “Goodnight.” I was too tired to brush my teeth. Tomorrow was another day and I hadn’t had much to eat anyway. Did I take a shower in the morning? I couldn’t remember.  I’d do that in that the next day too.  After saying my prayers I closed my eyes and waited for sleep to come. My thoughts looped and circled around on themselves. What ifs and why didn’t I competed with I should have until I finally lost consciousness.

12:15 AM – His bed alarm went off. He hated the alarm. He hated the bedside commode and he resented me for making him use them. I ran down the hall to discover he had scooted down to the foot of the bed and managed to squeeze through the space between the bedrail and the foot of the bed.  He was clinging to the rail, trying to keep from falling.

“Here, let me help you.”  I eased him over to the commode and helped him stand to pee. He refused to sit.  “I’m not a girl!”

“Why didn’t you call me if you wanted to get up?”

“I didn’t want to bother you. I used my short cut.”

“Short cut?” It took me a few moments to understand he was talking about the gap between the bedrail and the end of the bed.

“You aren’t supposed to get up unless someone is with you. You could fall. That’s why the doctor ordered an alarm for your bed.”

“The doctor sent it?”

“He explained it when you saw him last month?”

‘I don’t remember. How does he know if I go to the bathroom? It’s none of his business.”

Five minutes later we were both back in bed.

12:45 AM– His bed alarm went off.  That time he tried to climb over the rail and was stuck half way.

“What are you doing?”

“I have to pee.” I got him up and helped him to the commode. He stood for a couple of minutes. Nothing happened.

“I thought I had to go.” We went back to bed. 2:00 AM – The bed alarm went off. He was stuck half way out of the bed again. We repeated the scene above.  2:10 AM – Alarm went off again. His foot is stuck in the rail.  3:05 AM – Alarm went off again. He had scooted down to the foot of the bed and was trying to get up.

“I have to pee.” That time he did. 3:15 AM – Alarm went off again.  “I’m thirsty.”   I went to the kitchen and mixed some thickener in water and helped him spoon it into his mouth.

4:00 AM – He was calling for me.  I rushed to room. His covers were tangled around him and he couldn’t move.  I got him into a chair and arranged his bedding.  Had him pee while we were up. 5:15 AM – The bed alarm went off again. I knew I was up for the day.

The next day, and the next, and the days after that? Repeat the above actions from the beginning.  Sometimes it was the voices that woke him.  Some nights he thought it was day and he was ready to start his routine.

Believe me, I followed all the suggestions, I kept him up during the day. It didn’t matter. I put him in adult pull-ups so he didn’t have to use the bedside commode. I’d find them torn to shreds the next time I went to his room.   I followed all the advice about soothing music and quiet time before bed. I tried it all again and there we were night after night. Sometimes I made a bed for myself on the floor beside him so he knew he was not alone.  Still the alarm went off through the night.Get a good night’s sleep? I was ready. I even drifted off for a while, and then his bed alarm went off.  Again.

Caregivers do need a good night’s sleep and they know your suggestions are well intended and sincere. What they want you to know is that it’s not that simple. Their days and nights are full, minute to minute, crisis to crises.  So if you are wondering how to help a caregiver my suggestion is a gift certificate for a few hours of respite each week so she or he can take a nap.

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Good Morning Caregivers

I’m still running a little late. This cold is getting better but I’m still sleeping later than usual. I know you don’t have that opportunity when you are not well so today I am sending you a hug. The good thing about sending it this way is I won’t pass on any of my germs.
hug time

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Good Morning Caregivers

love is whqat you do

Caregivers, remember what you do every day is LOVE. Love isn’t perfect, love isn’t easy. LOVE is who we are for those in our care.

1 Corinthians 13:13 And now these three remain: faith, hope and love. But the greatest of these is love.”

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Up the Down Staircase

alz up the down staircaseOften Rodger would say to me or my husband, “It don’t make sense.”

He was right. This disease turned his world and ours inside out and upside down. Going up the down staircase was the only thing that did make sense. If we tried to approach the situation with logic, chaos ensued.  Throughout our lives we are told to live in the moment. Mental illness and dementia made that imperative. We abandoned our reality and went into his feeling as lost as he did.

Many times he told the doctors that I was crazy. We thought the same of him. Who was right? The answer depended on the day. He had moments of clarity so crystal clear I sometimes wondered if he had been pretending much of the time. I had moments when I lost it so completely I was convinced I had gone over the edge and might never find my way back.  Still we carried on. Step by step, day by day, we resumed our proper roles and began again the trek up the down staircase. Each a little bit crazy in our own way.

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Good Morning Caregivers

 

 

not all heroes wear uniforms

You are my heroes, every one. Thank you for all you do for others.

 

 

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Good Morning Caregivers

somethng good in every day

Every day may not be good.  Caregivers know better than most about good days and bad. On the best of days, when the people in our care, are experiencing the moments of clarity that mean so much, we know that tomorrow and tomorrow and tomorrow can be, and often is, much different.

When family and friends don’t understand please remember you are not alone. There are thousands of us who do and  I hope in small way to be something good for you today.

 

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Sometimes Caregiving Looks Like This

Pull Up Big Girl Panties

There were days when I felt more like the mean girl than the patient saint some believe caregivers to be. I didn’t want to do it any more. I got mad. I hollered back when he shouted at me. I regretted it the moment it happened but let’s be honest, this is what caregiving is like some days.

I have to admit I never looked that good when going through it. I more closely resembled the image below, right down to the scraggly plumage. But, I couldn’t resist posting this image. I love her attitude.

Rough Week

 

It is critical that we address the realities of caregiving  and not sugar coat it.We have to do everything we can to support the over 65,000,000 caregivers in this country and the millions more who will become caregivers very soon.

 November is National Caregivers Month. The President has issued a proclamation in support of caregivers. Caregiver conferences are being held across the country. It’s time to talk less and provide more help. Our legislators would do well to read caregiver support sites and hear from the caregivers themselves. Feel free to start by sending them a link to my blog.

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NaBloPoMo November 2014

If You Stumble …

if you stumble

“You must be a saint.”

I heard that I a lot when I was caring for Rodger. Always from people who were not caregivers themselves. Rodger would have been the first to agree with the response I always gave.

“I’m no saint.”

Caregivers know there is nothing saintly about us or what we do.  I  lost my patience, became angry on occasion, felt put upon for all the changes in my life, and often prayed for the strength to make it through another day. I stumbled often and denigrated myself for doing so.

I didn’t understand that stumbling along is the only way either of us could move through the challenges. Ours was not a lovely choreographed waltz through life.  Raucous and primitive the music of dementia demands unpredictable movement and uncomfortable positions. Falling from time to time is a requirement  allowing us time to take a much-needed breath and identify the ever-changing rhythm before grasping hands and continuing on.

The fault here is not in our movement, it is in the mistaken belief that every step must be perfect for the dance to hold beauty.

Caregivers, my message to you today is, be kind to yourself.  “When you stumble make it part of the dance.”

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