Category: caregivers

Oh, my!!

One of my daughters called to ask me for links to group chats, or blogs for caregivers of people with Parkinson’s. I’m not sure if she was looking for a way to let people know what she had recently learned, or if she was looking for support. But what follows is a message from her… She works in a dental office.

“If your mom knows anyone with a DBS (Deep Brain Stimulation) they should know it’s important to let their dental professionals know. “

“I didn’t know these things until my mom’s procedure No panel radiographs or MRI/CT (the image that goes around the head) A full set of individual radiographs is okay. No cords which produce power (drills, ultrasonic instruments, etc) should never cross the patients neck or chest. All of those mentioned can increase the frequency of the DBS signal to the brain. Luckily I’ve always accessed my cords from under the dental chair and never draped my cords on my patients. The cords should not come close to the neck (superficial cords run from the stimulator in the chest to the rods in the brain) “

Since I do not have DBS (deep brain stimulation), I do not know ; but I would presume the doctors give the information to the patient at the time when they sign up for the procedure. Perhaps the information needs to be taught to the care givers… or even inform the dentists. But it would still be the responsibility of the PwP or their caregiver to tell the dentist, because it isn’t obvious that a person has even received a DBS.

Take it with you,

Being proactive, when I learned about the Aware in Care Kit, I requested one. And received it Feb of 2019. Thankfully, I have not needed to go to the hospital since acquiring it, but I carry a change of underwear, and some light weight knee pants and extra incontinence pads along with the other things included in the bag. with me whenever I am on an outing… along with wearing the alert bracelet. Having the bag stocked for such emergencies has saved me from embarrassing experiences on at least three different occasions

The link is included below, for all proactive Parkies. Additionally, there are links to download the action plan, the medical alert card, medication card, fact sheet and reminder slip,,, in case you need any of them prior to the arrival of your bag. This is from the web:

“The Parkinson’s Foundation launched the Aware in Care campaign in 2011 to help people with Parkinson’s disease (PD) get the best care possible during a hospital stay. According to a recent study, three out of four people with Parkinson’s do not receive medications on time when staying in the hospital. With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital.”

“To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, we developed the free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital visit.”

“Aware in Care kits can be requested from your local Parkinson’s Foundation Chapter or Center of Excellence. If you do not live in an area with a Chapter or center, you can order a kit online.”

Things in your life you wish to protect

 

I responded to the email from the Davis Phinney Foundation… and was so impressed by the results I got… I simply had to share.

They typed………………

“Here at the Davis Phinney Foundation, we are making the most of the support our community continues to provide. We wouldn’t be able to deliver our education, community outreach, and quality of life programs without you. In thanks we want to help you accomplish an essential task during this special month: creating or updating your will, trust or estate plans to protect what’s important to you.”

“August marks National Make-A-Will Month, giving you a special opportunity to think about the things in your life you wish to protect now and forever. Thanks to our partnership with FreeWill, hundreds of members of our community have completed their wills. You can join them by starting or updating your plans with the free online estate planning tool that makes it easy to update and complete your legal will or trust, all at no cost.”

Davis Phinney Foundation partnered with FreeWill to allow you to create your legacy in 20 minutes and ensure peace of mind and security for you and your loved ones.

If you don’t have time to complete filling out the information now, I encourage each of you to go to the website and start the process… at  https://wwwfreewill.com/  It has a person add a little information and then click on save.  Once you have saved it, your email is the login to re-access it.  The first time you attempt to log back in it gives you a place to set your password. They encouraged us to tell as many people about this tool as we’d like to.  Once you have gone through the program, saving as you go, you can go back through and edit  or correct.

Ours were pretty simple… and the final document that it produced with all the legaleaze and lines for signatures and notary’s signing and verifying was 15 pages.  for those with under aged children, you would have more to complete, indicating guardianship choices, etc.  so probably even more than 15 pages.’

Another cool thing about it is. your account is online and you can simply update it, if you have an address change, add a member to the family, or any number of decision changes. Then reprint it, get it notarized and destroy the earlier version.

Following

To any of my followers who are caregivers dealing with a PwP plus dementia
I’d like to suggest a blog by a caregiver who provides such positive insights and suggestions to help a caregiver to cope he goes by AdjunctWizard
I just wanted to share an example of his writing :follow him.

Cheryl will start to tell a story about an incident that occurred earlier to me as though I am someone else. In the story she will refer to me in the third person as “your dad.” I think that she thinks I am one of our children but I could merely be a nice someone with her because sometimes she refers to me as “Paul.”
I used to resist this a bit and point out that I was me. Lately I quit doing that. I quit doing it because it aids me in finding where she is in her head and it serves no useful purpose other than to make me right and her wrong.
Typically it is a late afternoon discussion as we head somewhere for dinner. In the car she will start with, ” you know your dad and I …” After she gets her thought out I can respond with, “No kidding, I didn’t know that” or some other suitably benign response. If there is more to the story she will go on.
There is so much to learn on this road of Parkinson. If you have not tried it, take a deep breath, enjoy the ride, the scenery and the stories along the way. You cannot be sure of the weather, road conditions or the vistas ahead. Be one with the journey.

‘Go to https://adjunctwizard.com/2022/05/11/more-about-dementia To see this offering by an eldercare organization.

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livingwithdementiablog wordpress attributde to Norman McNamara)

Why don’t you like me?

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!”

To which LAJ responded… “I thought it was going to about a caregiver who thought their husband didn’t like them anymore, which is what it felt like before I knew what was happening due to the frozen face that seemed to glare at me all the time😟”

WHY DON’T YOU LIKE ME?

“When did it start?” the doctor said “The hate campaign that’s in your head”

It started out with a little thing A parcel neatly tied with string

I couldn’t get the knot undone It really wasn’t too much

The problem very quickly spread A champagne cork encased in lead

Just pull the corner, plastic tag It’s just like opening up a bag

But heat-Sealed cartons won’t comply They tear or shred, I wonder why?

They should open up for me Not stay tight shut. It’s misery

It cooks in minutes on the pack But opening it, I’ve lost the knack

It doesn’t work I can’t get in, This thing is going in the bin.

I’ve stabbed it with a table fork Tempers rise, I cannot talk.

Have all these packs developed hate For me no meals, note the date

But all my efforts are in vain Four broken nails what a pain.

I’ve tried with other simple things 10 pound note develops wings

It floats and flutters then it sighs. I’m out I’m out it loudly cries

It won’t go back without some force All my notes have changed their course

Why do all things hate me so? Why won’t they just go with the flow

Is it old age that treats me thus I can’t go on I’ll make a fuss

Coordination is the key Its making such a fool of me

Filing papers opening mail all tasks that I can fail

It was my mother that I told You take too long, it’s cause you’re old

Parkinson’s is such a sod For my old back another rod

I’d change the duvet if I could My fingers seem to change to wood

The pillowcase will not comply It really makes me want to cry

Zips and buttons stubbornly Are never like they used to be

Sometimes it really makes me laugh I seem not whole I’m cut in half

The half that works has disappeared The other half behaves quite weird.

It moves and shakes all on its own It will not do the things It’s shown

My life is turning into farce And Parkinson’s can kiss my arse

Written by…. John Smith

Alternative inspiration

A caregiver’s blog led me to another Caregiver’s blog when he wrote: Whenever I am looking for alternative inspiration I read this blog.

https://parkinsonscaregivernet.wordpress.com/

Here are a couple excerpts from some of her entries.

……………………………………………………….

Less nagging – yes, I used the word nagging. Reminding. Warning (“don’t put your cup so close to the edge of the table”) Advising (“you need to use your walker”) Mentioning, emphasizing, etc. (Yes, I used the thesaurus!) Our loved ones will begin to tune us out when we talk too much. How about this – let’s talk less and do more. We can always walk over and move the cup away from the edge, and we can take the walker and put it in their hands without even saying a word. It may mean we have to DO more, but we can do it with a smile that promotes peace.

With decreasing cognition comes the loss of ability to reason, so we should not be surprised that our loved one is less able to cope with anxiety and frustration. That knowledge helps us understand the need to keep them from certain situations where those things might occur. We do this out of our love for them and self-preservation!