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Topic Mindfulness and Caregiving Go to previous topic Go to next topic Go to higher level

By makrivah On 2015.04.07 16:54
I recently took a class in Mindfulness as it relates to life and specifically to caregiving. One of the take-aways was having a personal "sacred word" to call you back to being mindful when you are becoming overwhelmed by stress or distractions.

I decided on a multi-purpose word: UP

(1) It stands for Understanding and Patience.
(2) I find it helps to be Happy or in modern day slang, UP.
(3) When people ask how I'm doing, I can smile and answer "I'm UP."

Little tricks like this help me over the hurdles.

By Wildcats1958 On 2015.04.07 19:13
Tell us more. We can all use all the help and ideas we can get.

By Lynnie2 On 2015.04.08 09:28
I find I am loosing my patience at times, so I need more help to keep it in control.
I guess we just get tired of doing everything.
Thanks for your advise.

By HangingOn On 2015.04.08 10:13
Lynnie2 I totally agree with you. I have posted before and got "slammed" and told I should understand what the PWP is going through. I do but need help with my side of things.

By umajane On 2015.04.08 14:13
Some days I am just ready to scream and my patience level is zero.
When I get annoyed it always makes EVERYTHING worse. My husband just doesn't get it and yes I know he can't help it but it drives me mad.. Then I settle down and keep on going.
We need help too but at least we can care for ourselves.
I'm thinking I should try to get away for a day or two with a caregiver here just to refresh and learn to be mindful.

By Lynnie2 On 2015.04.08 14:20
I am starting to help my husband with some speech therapy so I'll need to be particularly patient.
The therapist told him to THINK LOUD and gave us some exercises to do:
Say 'AH" in your LOUD voice or even better HELLO AH. Repeat 20-30 times, but we'll just do 10 times to start.

Then say Hello AH and go up one octive
Repeat 10 times.
Then say Hello AH and go down one octive and repeat 10 times.

Read functional phrases using your LOUD VOICE (e.g. How was your day?
I'll see you later. etc.
Read an article from newspaper or magazine using LOUD VOICE.

We have just started but I should set a time of day to do it and not just a random time and try to do it twice a day.
We are waiting to get back in with the therapist at the hospital as she closed the file before his surgery so I had to get another referral.

By makrivah On 2015.04.08 16:19
I am saying "UP" an awful lot today. We attended a lecture/conversation with a PD specialist today. Plenty of good info was shared which was great. My Waterloo was seeing all the other PWPs at stages down the road from my guy. It breaks my heart. Their caregivers stand by their side helping every which way they can. But the sadness of the couples is overwhelming to me. The PWP behind the PD mask showing none of their thoughts or feelings. The caregivers' eyes are tired and scared. The aura in the room of 80 or so people was "we have been cheated." I've always been told that I am too sympathetic, too empathetic, too thin skinned, etc etc etc. Maybe so. Nevertheless, meetings like this one are very difficult for me. I came away with a splitting headache that rivals my breaking heart. Seeing what lies ahead feels like it is beyond my ability to cope. So I keep saying my mindfulness "sacred word" over and over to help me Understand and be Patient.... UP UP UP UP. On the hour drive home, my husband had no comments even with careful prompting. My husband came in the house, sat down in his recliner and fell asleep. Now I'm off to do chores and finish taxes. UP. UP. UP.

By stillunsure On 2015.04.09 10:24
I certainly understand everyone's post and feel the same way. My PWP is 2 yrs into this horrible disease (diagnosed) and I find myself getting angrier and angrier at everything. Now he has blood in the urine and urologist wants to do a medical procedure using anesthesia to get rid of the bladder stones. Can anyone attest to the outcome of this type of procedure in a PD patient? Blood is gone, but it's just a matter of time before it comes back to cause more problems. Could use some advice and help making a decision. Neuro no help.

By ResistanceFutil On 2015.04.09 10:50
Regarding mindfulness, my favorite teacher is Jon Kabat-Zinn who is affiliated with Massachusetts General Hospital. He has several books and YouTube videos. His Mind-Body Stress Reduction program has undergone several studies and so provides for evidence-based results. This would be helpful for mindfulness study/practice that doesn't involve or conflict with Eastern or other religious practices.

By Lynnie2 On 2015.04.09 13:27
Blood in Urine;
My husband has had blood in the urine several times and been to the urologist.
He had ultra sounds and there wasn't any problem so he thought it was his blood thinners. He is on Warfarin but he said that the veins are thin around the prostate,(I may have this part of the bladder wrong) but it causes bleeding sometimes.
He had some bleeding a few weeks ago so we cut back this dosage for a day, so the blood cleared up.
Are the stones definitely causing the bleeding with your spoiuse? I would think it would be painful too.

MY husband never had any stones so your spouse must be different, but this is what happen to my spouse.

By stillunsure On 2015.04.09 14:58
He's never had blood before, and he had no pain with this event at all. Usually pain comes with kidney stones trying to pass into the bladder. The Urologist said there were multiple bladder stones causing the bleed. And, yes, he's on Plavix ... having had 2 stents and a heart attack many years ago. I don't like the idea of anesthesia in a PD patient. He can get confused enough without it. I guess I need to meet with his neuro again. Thanks for the input.

By Lynnie2 On 2015.04.09 17:00
I guess we should start a new blog, but anyway, my husband has had anesthesia twice lately. One for a biopsy procedure and the other one when he had lung surgery.
Yes he was confused after the biopsy since we came home the same day, and after the lung surgery he was confused but in bed at the hospital.
He was okay the next day, so if you husband has it, make sure you don't go home too soon. Have the porter take him to the car.

By mylove On 2015.04.11 10:34
Back to the original post - here are my thoughts. The comments really resonate with me. I'm going to offer this thought.

We DO understand and try to see it from the PWPs perspective. I think that's what makes it so tough/painful. We not only have the burden of bearing our side, but also theirs. To do what we have to to make their lives easier and more bearable and to try to simply get through the day while providing care, even when they would rather be left alone. We do the unpopular things...the practical things....we try to think ten steps ahead to be prepared because we understand that change is frightening. We are the ones living with one eye open at all times. We bounce from crisis to crisis and are always the ones expected to be resilient. We have to be, because we are being resilient for two.

We grieve, too. The PWPs don't exclusively own that. We miss 'normal' life as much as they do, but we are the ones that have to smile through it because it's our job never to show it....it's our job to keep their spirits up. Very few that aren't walking the walk can understand what it's like. It's a grave disservice to shame another caregiver for honest feelings. It's hard enough for us to share them out loud, because raised as we are to service, we aren't expected to have them at all. After all, WE don't have PD, do we? We are healthy, and so we should feel blessed.

We do feel blessed. We love our family members. Few of us would give up our lives. But the pain, the fear, the uncertainty, the exhaustion, and the false bravado are real. Let us have that, here between us - the safe place to let that go.

PD is truly a family disease. Even my sweetheart, who is still self sufficient, needs me in ways that he wouldn't have if he were healthy. There are many, many things we cannot do. He has an overwhelming propensity to other physical illnesses and ailments (is this a PD thing too?) so we spend most of our days back and forth to doctors. In between we try to be normal as much as possible, to seize the good times and extract as much as we can from them. But PD is the sword of Damocles, and it's just blindness not to see that it hangs over both our heads.

My two cents on a rainy Saturday morning. So much for an outing to see the tulip fields in bloom. I suppose it's Costco and a nap. :) That's reality, and I'm thankful that we are still able to do Costco, but we sure do need the follow up nap.

By lurkingforacure On 2015.04.11 11:55
Yes to all of those. On days I am having a particularly hard time, I try to remember FEAR, because I know my husband is scared, although he never admits it. I know I would be scared. Who wouldn't-not knowing from day to day what you can or cannot do, and I'm talking about the most basic of things virtually everyone except those living with a degenerative illness takes for granted. Will he be able to make it to the bathroom by himself or feed himself in a year, six months, next week? He has no idea what the future holds or when, but he knows it is not good. My husband is a worrier and this weighs very heavily on his mind, especially because we have young children still. The bonus curse of early onset, we get to experience all of the gloriousness of PD on top of trying to raise children.

To counterbalance that fear, I try to remain a constant. I think everyone here does the same. Our loved one needs to know and feel that no matter what may happen, we love them and are by their side, and they are not alone. The legs may fail, the hands may tremble and drop the plate, but we will be there with them, cleaning it up and telling them it is all OK.

Louise May Alcott is credited with this saying "I am not afraid, for I have learned to sail my ship." I hope that brings some of you comfort as it has me.

By jcoff012 On 2015.04.11 13:47
I really understand how everyone feels and the unique sadness that goes with being the caregiver of a PWP. I really do.

But, to me, it still seems that the trials of being a caregiver are not unique to us...Sadly, being a caregiver to any person with any chronic illness is devastating. Taking care of someone with Alzheimer's or CP is equally difficult and sad.

As we go through this journey, what I see lacking for ALL caregivers is the need for unconditional acceptance and understanding. Too often, those in the world untouched by a caregiver's plight are too judgmental and uncaring. Often, those family members who SHOULD understand, but don't, hurt us and do far less to lighten our load. Sad.

That is why we come here...To be joyful, to vent, to research, to connect.

I try to remember that this isn't a "I have it worse than you"...but, "I am afraid of the future, want my PWP to not suffer, and I am simply often tired...like you...like so many..."

Vent, cry, ask questions...but never be harsh with yourself...you...we...are doing the best we can. Love yourself...Jane


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