Where Have My Friends Gone?

friend therapy

Being a caregiver for a loved one is lonely. From morning til night, and often well beyond, caregivers are on call even when our loved ones demand we leave them alone. We become the bad guys. The woman or man who insists they bathe when they don’t want to and serve them food when they have no wish to eat. Our parents or our spouses resent being treated like children. Their losses are devastating and they resent being reminded of them. Days go by when they don’t say a word. Some can’t. Others were told long ago not to speak to strangers and that is who we have become.

Knowing we are busy and often unable to leave the house our friends drift away. Not intentionally. It simply happens. They visit a few times only to find us distracted and harried, on constant alert for a call from our loved one or the sound of that horrible thump that signals another fall.  Sometimes we cry and then refuse to follow well intentioned advice to take time for ourselves and get enough rest. We aren’t as much fun as we used to be. I get it.  But still we need you. If only for a few minutes now and then we need you to come by and share a cup of coffee with us. We need a bit of adult conversation. Having a friend say, “Tell me about it,” and then sit back and listen as we speak is a moment of respite we cherish.

Please, even if you only have a few moments, be a friend to a caregiver today. Someone is waiting.


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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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Lead Me to The Rock

lead me to the rock psalm 61 2

Sometimes prayer was the only thing that got me through the long days and nights of caregiving. Too much stress, too little sleep, very little help, all piled up and sapped my strength and I turned to prayer. In one form another my cry was always the same, “I need help. Please send help.”

And He did. In His time and in a way that may have been unexpected, help arrived.

For all the caregivers close to the end of their stamina, I send out this prayer.

“Hear my cry, O God; attend unto my prayer.

2 From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.”

A blessed Sunday to you all.

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NaBloPoMo November 2014

 

Visions of Sugarplums Danced in Her Head – A Caregiver’s Dream

santa sleeping
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 medication 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 fighting to keep my eyes open.

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

“Goodnight, Rodger.” “Goodnight.”

I was too tired to brush my teeth. Tomorrow was another day. I hadn’t had much to eat anyway. Did I take a shower that morning? I couldn’t remember. I’d do that 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?”

“Yes, last month?”

“How does he know if I go to the toilet? 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 crisis. So if you are wondering what to give a caregiver for Christmas; one suggestion is a gift certificate for a few hours of respite each week so she or he can take a nap. If you do, drop me a note so I can thank you. gift certificate

Caregiver, Be Careful What You Pray For

Praying for help

“Please God, grant me strength.”

I have said those words many times. Like most people I have experienced love and loss, joy and pain, happiness and grief. During the good times I pray to say thank you for my blessings and to ask God’s protection for my loved ones. I pray for peace. Quite often I pray for things I want. (I’m no saint, after all.)

During the hard times I used to pray for the strength to see me through. I knew no matter how hard things became there would be an end to my suffering. I just needed to be strong enough to see it through. When I lost a baby via miscarriage I paced and prayed well into the night until exhaustion finally overtook me. I prayed so long so hard when my sister died I barely slept for weeks. As a single mother of four I dealt with the many challenges with hope and prayer every day.

Despite my almost constant request for strength my prayers never seemed to be answered. Instead of giving up I prayed more and I prayed harder. After all, God is busy and it often takes time for our prayers to be answered. I dug in and did my best to get through each crisis and when it was over I’d pray for the strength to get through the next one. I always knew more trouble would follow.

Then one day, as I was sharing my woes with a friend, I ended my tale with the same words I so often repeated. “God, grant me strength.”

“Oh Bobbi, don’t say that,” she said. “Look what you’ve been through. What you’ve survived. You’re strong enough already, don’t you think?”

“I know I’m strong but I never know what I’ll have to deal with next. I have to make sure I’m ready for whatever comes my way.”

“That may be true but the last thing you need is to become stronger. Think about what you have to do to get strong. If you want to build muscle you lift heavy weights. The stronger you want to become the heavier the weight you have to lift and the more often you have to heft it. Is that what you want?”

“No. I want the burden to be lifted. I want help. I want to know how to solve the problem before it becomes too much for me.”

“Then that’s what you should ask for. Don’t forget that God endowed us with an intellect and free will. We are in charge of our lives. He assists us when asked but he doesn’t take over and fix our problems. He provides us with opportunities to work them out in our own way. When you ask for strength He provides you with opportunities to become strong. If you ask for patience you will be given opportunities to learn how to wait. Be careful what you pray for. Consider what you really need and ask for that.”

“What do you mean?”

“If you need help, ask for help. If you are lost, ask Him to show you the way. Whatever you do stop asking for strength.”

I thought about her advice for a long time. It made sense and it wouldn’t hurt to change the words to my nightly prayers. I stopped asking for strength.

Years later, after I had been a caregiver for a long time and things were especially hard, I prayed almost constantly for weeks.

“Please send help. Dear God, I need help. Please send help any way you see fit.” Despite my prayers Rodger ended up in the hospital again. Still I prayed. Even on the way to sit at his bedside and feed him I prayed. “I need help. Show me the path you want me to take.”

When I arrived at his room a man was standing at the door waiting for me.  He was a hospital social worker. “Mrs. Carducci, do you need help?”

Not sure I’d heard him right, I asked him to repeat what he’d said.

“I see in Rodger’s files that you’ve been caring for him for a long time and his needs are extensive. Do you need help?”

After taking the time to say a silent prayer of thanks in recognition to God for answering my prayers, I assured the man I did, indeed, need help. Before I left the hospital that day we were enrolled in a respite program that would mean I would have in-home help eight hours a week. I could finally get some rest. I could go to the grocery store. I could go to church and say a proper thank you.

Each night when I say my prayers I ask God to hold me in His love and light and show me the path He wants me to take. The road is often long and bumpy but I always end up where I need to be and I am grateful, and I am strong enough.