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Topic Let's discuss stress, please... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2014.07.22 19:52
I would like to hear how stress has/does affect your PD experience, both from the PWP and the caregiver...I will hold my comments for a bit...thanks! Jane

By carman96 On 2014.07.23 13:39
Well Jane, despite the fact that I try hard to keep myself healthy, sometimes I feel like the stress is going to kill me.

By dans316 On 2014.07.23 14:47
June rarely complains about anything so that definitely keeps my stress low, I tend to think my stress problems are mostly my own doing in trying to provide the proper care for her.

How was the plane ride to Maui? Hope it was trouble free and you are now relaxing on one of the beautiful beaches of Maui.

Me Ke Aloha,

By Trusting On 2014.07.24 00:48
On the surface I don't think I am stressed but my body is letting me know it is affecting me. My own blood pressure is high, my cholesterol, and now my sugar. I (we eat healthy and I'm pretty active) so I really think the stress is taking it's toll on me.
My husband with PD doesn't handle stress well at all. I try to keep him from as many problems as I can but I have to admit, it's getting harder and harder.

By carman96 On 2014.07.24 10:15
Aloha Dan, we had a good flight over with no problems, so that was a relief. The airport people, the TSA and the flight attendants we're all great. So as long as there is plenty of time and I can let them know what we need calmly, that makes it easier, right?
The first day the humidity was terrible, but we just missed the tropical depression. Then the trade winds came. Everyone we've talked to said that's what keeps the humidity down.
We are staying in Ma'aleaa close to the harbor, very beautiful spot. The place we're staying has a nice lawn area overlooking the beach, so nice to sit and watch the sea turtles in the ocean right in front of us!
My husband fell three times yesterday. Twice was in the bathroom. He decided he was sick of us telling him what to do so won't listen when I tell him to use the grab bars, walking stick, etc. We brought the wheelchair so when he's in it that's good. Just hope we make it without any injuries!

By parkinit On 2014.07.24 22:08
Jane, just before reaching the "stage" we are in now, which is considered "Advanced Parkinson's" and would probably be labeled stage 5, My husband fell constantly. That was very stressful on me. I exercise daily to keep my sanity, however, he is very head strong and would do whatever he pleased, even if I always had to "pick up the pieces" after fall after fall after fall. I resented that I was put in this position often. He fell tripping over tree roots, brick borders, rolling down steep inclines, and even professed to falling on the pool cover once. Oh yeah, I didn't mention the time I found him with his torso wedged between two rocks by our small fish pond. He broke multiple ribs, fingers, dislocated both his shoulders and busted his lip and his head open through all these falls. Talk about a nervous wreck.

Now, that he is in the house, he is safe, I am no longer a nervous wreck, but there is another emotion taking over . . . extreme sadness. He can't fight anymore like he used to. Would I want that guy that constantly fell back, well, no, but I miss the man I used to know. This one has dementia, is incontinent both of bowel and bladder, has extreme freezes, and is totally reliant on his caregivers for everything. I miss the fighter he used to be.

By carman96 On 2014.07.25 02:56
Parkinit, my husband must be so like yours. Sometimes he is so defiant about doing things his way, even though it often leads to falls or him having a temper tantrum because he can't do something he thought he could. Luckily he hasn't gotten hurt your than bruises. I am so worried he is going to end up in the hospital. Very stressful.
I am always telling him what to do to be safe, but he resents it and gets mad sometimes. Seems he tries to do things backwards. No matter how many times I tell him something he doesnt remember it the next time.
So sorry your husband is in the stage he is in now.

By dans316 On 2014.07.25 08:04

Hope you can enjoy Maui without any more falls.

When June was still fairly mobile, I worried constantly about falls as she also has Osteoporosis. Just curious but has anyone ever had a Dexiscan recommended for their PWP because of the possibility of falling? While women are more prone to thinning bones, men can have it also. June was diagnosed with it before the PD dx after fracturing her hip in 2005. She is also probably at stage 5 of PD, with complete incontinence and immobility. I find the incontinence more stressful and hate to say it but the immobility mostly removes the worry over possible falls. My advantage is that she only weighs 85# and I'm a bit heavier, okay a lot more, so I can lift her when needed. Now she is going through LSVT therapy and I find that more stressful as her mind tends to wander and she has a problem focusing on doing the exercises. Well I'm rambling now, so better quit.

Me Ke Aloha,

By carman96 On 2014.07.26 02:59
Dan, No more falls yet but I can't take my eyes off of him or he will do something he shouldn't! He is getting very upset with me because I am standing next to him when he goes to the toilet. I could give details but who wants to hear that? I spent a lot of time in the laundry room today because he had two accidents one when he was taking his nap, and then a short time later in his wheelchair. All of the bedding! He doesn't wear diapers in the day because it is rare that this happens.
You make a good point about a bone density test. He hasn't had one so I guess I should ask the Dr. Seems like you would need to be extremely careful with osteoporosis.
Sounds like you and Parkinit are about in the same boat as far as the immobility goes. You guys are my role models for the road ahead of me. You both seem to be so loving in caring for your spouses.
Maui is so awesome and I hope we can get through it without any major mishaps. The place we are staying has a nice level lawn area so close to the ocean so we don't have to go down on the beach. We can watch the sea turtles from about 40 feet away!
Hope you are getting some added nutrition for June. I hate to think of her having a feeding tube.
Aloha from Maui!

By HangingOn On 2014.07.27 12:45
I am a caregiver and the stress is hard. When I was working I thought about him and what he was doing at home. He builds furniture and such. So the thought of him using any sharp objects had me on edge. I lost my job and am now at home. Great that I can check on him, not so great that our budget is stressing me out. I try to find something to focus on during these times.
When he gets stressed his tremors go through the roof, so I try to watch what I say and how I say it. Which by the way adds more stress for me. But as he keeps telling me, it is not about me.

By parkinit On 2014.07.29 18:21
Carman -

You mentioned the infrequent accidents. There are pads that you can buy - even buying the women's "light days" or something similar to use on a daily basis may be worth the investment. We use pads inside the diapers to allow us to not change the diapers as often.

Maybe some dignity without diapers while allowing you not to have the major clean ups?

By jcoff012 On 2014.08.02 17:17
Interesting posts, as always.

Here is why I posted...Stress is just part of my life. As I have said before, I am always "the one" everyone relies upon to be the caregiver...through PD, heart attacks, brain tumors, cancer, etc...Been a LONG eight years, to say the least...add to that, I have been our almost five year old grandson's caregiver since he was three months old...As my doctor says, "My middle name is not Jane, it is stress." lol

I was just wondering how most of you handle the stress brought upon you through your PWP's odd suggestions or expectations.

You see, last year Carl wanted an inground pool in the backyard, which I successfully avoided. These last two weeks, we have been in three showrooms and spent two hours at the county fair, looking at swimspas!...He had convinced himself that one would help his back, etc...STRESS....Anyhow, as of yesterday, he has flipflopped and now wants to redo the back, putting in an elaborate patio enclosure, and a water feature. We even stopped to set up an appointment on Friday with a landscape and design firm!

To be honest, Carl has never been able to sit still...he HAS to have a project at all times. This is a beautiful home that needs work on the back, it's true, but I am finding the added stress of such a huge project to be unsettling...

I am, and have always been, one to encourage him to do as he thinks would be beneficial and he is almost always right. However, I am concerned that this latest project will drain our savings to a new low and the mess and stress will ramp up HIS tremors, which of course, means more stress for me...He already acknowledges that he needs me to sit in on all discussions because sometimes it is hard for others to understand him now...

Most of you know me as a very positive person and one who can and DOES openly discuss all things with her husband. However, as we go further down the PD path, I am more and more concerned with the effects of stress on both of us. I keep asking myself if allowing him to do as he wishes is worth the added stress, or would discouraging him be MORE stressful? Do you find your PWP to be reasonable or self-centered when it comes to major financial or life decisions? Carl is FAR from being overbearing or demanding *YET*, but do you think you would let your PWP alone until it becomes blatantly a problem with impaired decision making skills?

As always, we WILL keep talking about this, but as of now, we haven't committed to any major Hugs..and, man, it is HOT here...a pool would be nice in this 100+ weather! lol

By moonswife On 2014.08.03 00:14
THE PROJECT. It is my nemesis. Mike has taken out a fireplace, restored a 64 convertible, we have picked over 4100 tomatoes this year (as of this morning) and he is nearly finished replacing the boxed in, termite eaten, eaves on our 1000 sq foot garage. I think a shop with every lathe, wood or metal, every possible saw, drills, and 4 rollaways of tools, etc. Is our problem. I agree, our middle names should be legally changed to stress. We had a brilliant DBS programmer that had worked in the field since its inception. He retired. His calming demeanor and patient explanations were as valuable at the excellent programming skills. His "take" on stress. He likened it to when a car accident nearly kills you, and you stomach is in knots. And your knotted stomach has to swallow Rx, AND WORK, or more stress is added when you can't lift your arms or walk. His suggestion. Drink a cup of warm honey tea. Put your feet up higher than your heart and go to your mental "happy place". With Mike this the he transfers the stress back to me, heh, heh.

By carman96 On 2014.08.03 10:57
My husband said he wanted a pool, but luckily dropped the idea after a few days. It would be expensive, impractical and dangerous for him. I agree it would be nice on 100 degree days though.
He hasn't been capable of making rational decisions for several years. This is tough because I have to do it all myself.
Everything that's done now, like painting, is geared toward someday selling the house. We love our beautiful property but it would be so much easier if we moved into town and below the snow. We can get about a foot of snow here. I worry if we do get a big storm that emergency services could not get up our road. And I'm starting to feel very isolated here. I know we can't stay here forever unless I do some major things to make it more handicap accessible. But that would be money better spent on another house.
Thinking about it definitely stresses me out.

By jcoff012 On 2014.08.03 23:00
I deleted my earlier post because it sounded as if I was complaining about the forum...I was not...just tired of all of the stress lately. It is something we will work through, we always do...

Hugs to everyone....Safe travels, Carman...Aloha!

By moonswife On 2014.08.05 11:27
Jane, I have deleted posts too, because I regretted what I felt sounded whiny. Now I think just creating the post is cathartic itself, and maybe putting things, other than questions, and never hitting post, gives us a chance for a big vowel movement of our most stressful thoughts. Have a better than average day. It that a PD caregivers encouragement to each other?

By jcoff012 On 2014.08.05 14:17
Moonswife, made me laugh...As I typed the second post, it occurred to me that I have a LOT of reasons to be grateful and so few sadnesses to dwell upon...Al, as always, says it well...While *I* do not think that having PD is something for which to be thankful, in a way, it has given us the chance to really know that we have to hold on to every precious moment...we ARE lucky knowing that our lives are more limited, but we know there is an ending, at some point.

I always think of my parents...Mom got up one morning, went to the grocery for New Year's Eve party supplies, and when she got home, my nephew told her he called 911, but "Granddad wouldn't go, because Grandma wasn't here to watch me." She immediately called them back and they said their final goodbyes. A real shock and totally unexpected. Maybe we ARE lucky...

Anyhow, the stress with PD is often unbearable, but it is part of life...our life. Hugs to all. Jane

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