My Caregiving Dream

Everyone tells me I need to take care of myself. “You can’t take care of your Momma if you’re not taking care of yourself.” I hear it from my family, my doctor, friends at church, my Facebook friends, and my on-line support community at myALZteam.com.

It’s true.

So, I’m trying to listen. I joined a gym and have been getting regular exercise, striving for 5 days a week while my hubby keeps tabs on Momma. It was the right thing to do and has been so helpful.

My concerned friends also say, “Take advantage of respite care. You need to take some time away – maybe go on a vacation.”

True again. But, I’m finding that one easier said than done.

Looking into respite care options has opened my eyes as to how difficult it is to find respite memory care in my community. I found two facilities with a room available: one would require that we bring our own bed; the other seemed perfect, albeit expensive.

Me and my guy in NYC

Thankfully, my sister was able to arrange her schedule so she could take care of our mom while we got together with our kids and their families over Thanksgiving and again for our recent vacationing in NYC.

It concerns me that there seem to be so few options out there are for someone with Alzheimer’s. I am learning that places which advertise offering respite care do not have dedicated respite care units. Rather, you fill out paperwork, have your loved one evaluated, then get their name placed on a wait list. Then you wait for someone to move out or die.

If I had the resources, my caregiver dream would be to build a respite care facility that would offer all the usual assisted living amenities, but operate a bit like a hotel, with guests staying for a few days to a month. My dream respite home would serve restaurant style meals, or bedside meals, depending on the guest’s particular need. Hallways would resemble a neighborhood street, with each door a different color, and a comfy chair or two outside on their “porch” just for sittin’ a spell and talking with passersby (you can see in the pictures below that I’m not the first to think of this).

My Dream 3
Photo credit: sixtyandme.com
My Dream 2
Photo credit: tsomides.com

My little “neighborhood” would have a business district too. Pampering would be a high priority with a beauty parlor and a barber shop. A little store for “buying” snacks and comfort items would provide the dignity of making choices – maybe even an “ice cream parlor” serving up a scoop of the day.

In my dream, I also see a beautiful little chapel where guests could hear the Word of God preached and sing great hymns of the faith as they worship God.  I would invite churches to bring their choirs and youth group ensembles to sing too.

I envision a wheelchair and walker-friendly theater featuring classic movies with closed captioning. We would host music and dance recitals allowing young music students to interact with the memory-impaired through the heart language of music and the arts. I can only imagine the joy this would create.

My Dream 1
Art Therapy

Artists could share their passion – painting, jewelry making, knitting, card-making – showcasing their art form and perhaps encouraging our memory challenged guests to get creative too.

 

Dirt Therapy
Dirt Therapy

Oh, and we certainly can’t forget the gardens!

Yes! In my dream I see amazing gardens (with plenty of lilies, of course!), planted and cared for by volunteers, scout troops, garden clubs, and youth groups. Of course, there would be multiple raised gardens where guests could play in the dirt to their heart’s content.

I can dream, can’t I?

Unspoken

Danielle Swett Olander describes herself on Facebook as an “Accomplished Instructor; Convention Exhibitor at Institute for Excellence in Writing (IEW) and Multitasker Extraordinaire at Olander household.”

An apt description. Though we’ve only met in person a few times, our friendship grows deeper by the day as we each take care of someone we love who has Alzheimer’s. Danielle is a family caregiver who watches over her father-in-law, Tim, who happens to be my husband’s and my close friend.

Danielle graciously gave me permission to post this Facebook essay on my blog. I know it will touch the hearts of many of my friends and followers whose lives are also impacted by this memory-robbing disease.

I grew up in churches that would allow you to say you had an “unspoken” prayer request. Usually it was something that was a little too private to share in public but that you desperately wanted someone to pray about. Or perhaps it was just to have something to say when it was your turn to share prayer requests. Today I have a little story about a different kind of unspoken request.

On Monday, the young lady who is helping me with Tim’s care dropped him off at our house around lunch time. He had a sandwich and was resting in his favorite chair. Our kids turned on a classic TV show, but he obviously didn’t want to watch it. I put out a chair in the driveway and suggested that he sit outside until the show was over. It was a beautiful day, the kind we endure January for around here. A little later I went out to the garage for something and didn’t see him in the driveway where he usually sits. I went back inside thinking perhaps I had missed him in the living room. When I didn’t see him there, I sent a child to the basement and another to the backyard. A third jumped on her bike to begin riding around the block. He wasn’t anywhere nearby. I realized that he had left without telling me where he was going.

I opened up Find My Friends on my phone and began a search for Tim. Thankfully he had his phone with him. A little blue dot “TO” appeared about 3 miles away, not far from his apartment. For the first time ever, he had decided to go for a walk, from our house all the way back to his apartment, 4 miles away. I called him and ended up bringing him back to our house where he declared he had done enough walking for one day.

Sometimes we know specific requests to pray for our friends. Other times, we simply bring them before God, knowing that he “knows what you need before you ask.” (Matthew 6:8) In our bowing before the Father, I know I have simply asked for his guidance, grace, or comfort for a friend, not knowing exactly what their need was. I know many of you are praying for Tim daily. You probably didn’t pray on Monday that he would protect him when he went for his “walking spree” (Tim’s words that day). But God knew what Tim needed. It gives me great comfort and strength to know that Tim’s care doesn’t rest completely on my shoulders. Thank you for praying for him.

Romans 8:26-28

[26] Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. [27] And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. [28] And we know that for those who love God all things work together for good, for those who are called according to his purpose. (ESV)

We all need an Advocate

An advocate is someone who can help you speak up so that your needs are heard, your rights are understood and your problems are resolved.

Momma and I took an ambulance ride to the hospital on April 30. Momma was in a lot of pain. A LOT of pain. She had a fever and she could not support her weight on her legs. In retrospect, there were a few signs I should have paid closer attention to, but the acute pain came on suddenly. She went from being able to use her walker, to needing assistance to get out of bed, to not being able to get out of her chair (or “off the throne”) in the course of just a few hours.

I must confess that there was a twinge of relief when I was told she was going to be admitted. It meant that someone else was going to help me care for her during this medical crisis. It meant that someone was going to help me make decisions. Continue reading “We all need an Advocate”

Art Therapy

It was therapy. It was love. Inspiration. Repose. Edification. Heart-to-heart sharing.

Today my hubby took a turn hanging out with Momma so that I could get away for a few hours to take my second Chinese watercolor lesson. Truth be told, it was much more than a painting lesson. Much, much more.  Continue reading “Art Therapy”