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Topic Can I do this? Go to previous topic Go to next topic Go to higher level

By Onedayatatime On 2013.05.19 12:26
Can I do this? I am tired of pretending to be the upbeat happy person that everyone is used to seeing. I feel as If I'm just going through the motions everyday. I'm sad and angry when I see what this disease does. I worry that I will not be able to be a good caregiver as the disease progresses. I know I'm not alone in the way I feel, I just needed to release my emotions. Thank you for listening.

By Mel On 2013.05.19 15:21 [Edit]
You will do great. No matter how angry I may get I seem to keep doing whats right for my pwp.

By jcoff012 On 2013.05.19 19:07
Yes, you can. Some days are better than others, but you can...and you will...and if you need to vent, come back...

By Betsey Clarke On 2013.05.21 23:59
I am new to this blog, but am on the end of the spectrum of taking care of my husband with Parkinsons. All's I can say is that you do the best you can. You accept the days that are depressing and impossible. And know that you will feel better, you will get some decent sleep, and you will find some peace. For some reason, it is easier for me now than it was at first. I have learned alot from our home health nurses, (they are wonderful), about how to take care of my husband. I have a hired caregiver twice a week that gives my husband showers, and does light housekeeping and other things. GET HELP when you need it. It will be the only thing that saves you.

By parkinit On 2013.05.23 00:00
You will because if not you, who then? I ask myself this question frequently. Then I buckle down and get what needs to be done . . . done. I have to push myself out of these slumps and I am NOT happy go lucky anymore. I used to be somewhat, but this disease takes it out of the PWP as well as the caregiver.

We are here for you and we are going through the same feelings, thoughts, and emotions.

By mydear On 2013.05.23 00:11 [Edit]
It helps me to get a periodic reality check by logging in to read how others are coping and solving various issues. I learn that the challenges aren't unique to our particular situation. This is grounding for me. I also find new options by reading several posts on the topic I'm needing a better solution for.

Several bloggers shared recommendations, and thanks to you, you got me through the heights of a dopamine dysregulation syndrome crisis. I am happy to report the sinamet has been reduced by about 1/3 and the doctors want this to continue gradually over the next six months or so, to levels they find best for my husband. This is in conflict with the opinions of another neurologist whose style is to aggressively treat with lots of drugs. I've lost faith in his treatment plan, based upon experience. The problem is (and my husband says this) that the neurologist treats my husband as though he is more highly functioning than he actually is, giving him a lot of latitude on his prescriptions. Too much of certain drugs and the side-effects are as bad or worse than the disease process.

The compulsiveness and hyperactivity at the height of the crisis have calmed down and the doctors predict the falls will be reduced once the meds are better balanced (so his mind doesn't impulsively drive his body to move before his body is capable of responding). I hope so, as he was sporting a number of staples in the back of his skull recently, due to a fall. He still thinks the trip to the doctor and the staples were unnecessary, which I find difficult in being the "heavy". He does use his walker a whole lot more now, and this is safer.

Urinary frequency and a couple of accidents drove many discussions and a couple of arguments until finally the use of the urinal and men's depends have for now solved this problem.

We now sleep in the same room some of the time, and in separate rooms most of the time so I can get my rest. This is working a whole lot better for me, yet we still get our cuddle time, which is important for our emotional bond. Carving out quiet time at home in the evening is my current quest. It's a challenge sometimes to have time together that doesn't turn into problem solving ventures on top of a day of problem-solving at work. Too much of this for too long takes an emotional toll.

Thanks to all of you who help encourage us, and provide new options for complex steps in this journey we are all on.

By Betsey Clarke On 2013.05.23 00:53
Wow, I thought I should contribute a little about meds (I should be sleeping right now, tho, lol). My PWP was starting to lose his balance and fell often about four years ago, and we went thru the gamut of why.. he finally fell while doing balance exercizes, and broke his hip. It was just a hairline fracture, and when he was starting to walk with a cane from the walker, his VA dr. finally notice his gait and posture, and told us he was almost positive it was Parkinsons. Anyway, he was put on carb/levadopa and it worked very well for him. Too well, however, he got up in the middle of the night without using his cane, and fell and broke his other hip. Since then, we have tried many other drugs to ease his stiffness, etc. but almost anything makes his energy level, speech, and cognition worse. So he is back on minimum dose of Sinnemet, and in his case it is best. It was a shock to me still that he could break bones that easily.. it is important for patients to not feel too confident too soon. I wish I had insisted that he stay in his walker longer.

By VioletV On 2013.05.23 14:51
Betsey,
Thanks for this reminder. My husband is moving better - amazingly so -- 2 weeks in t the LSVT-Big. But I do need to remember that he can have balance issues. It's important with these changes that I find the right mix of backing off to let him do what he can and staying close to offer the protection he needs.

VV

By Betsey Clarke On 2013.05.24 23:31
So happy your husband is moving better! The accomplishments attained when battling this disease are so rewarding. I am glad you are relishing it! It must be a relief for both of you. Best of luck in the future, it sounds like you are an exceptional caregiver..!

By LOHENGR1N On 2013.05.25 00:25
Onedayatatime, And others reading this thread, I've stayed out because I realize the need to vent or get feeling out and off your chest. I respect and try to honor that. What strikes Me and seems to be a theme with caregivers (this really breaks my heart) is they try to keep everything as close to "normal" as it was pre-Parkinson's.

So I hereby give caregivers notice of their right to not be the happy go lucky person people were used to before. My G-d, you're trying to maintain you charge/spouse who is terminally ill. How can you be expected to wear a happy face all the time? You're at your wits end and physically drained all the time. Please don't entertain the thought you should be able to keep all the chores up like before and also tend to the patient. If a guest shows up to visit and is looking for dusty shoddy housekeeping tell 'em yup I need some help you want to dust or wash the soiled linen? This disease weeds out false friends fast. You will burn out faster trying to "keep up appearances" get upset with everything and snappy with your patient because We can't live in better homes and gardens magazines and have Parkinson's living in the same place and shouldn't expect to. That's just another thing they never tell you about when they rush you out the door with "You have Parkinson's Disease. Remember most of those friends who won't offer, won't visit you either if you have a break down. They'll drink tea, eat cookies and nod their heads in agreement talking about you and how you should have asked for help.

We know it isn't easy, far from it. So if you have anyone, ask for help even a few minutes of it. Rest when you have a chance. And when you put on your happy face do it for the right reason and person. To heck with the others you are suffering also from Parkinson's drain on you and are most time living in self preservation mode. If that shows to those dropping by then oh well let them see just how it is instead of pretending everything's fine. Take care of yourself too we're depending on it. Take care, best of luck and hang in there

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By mylove On 2013.05.25 11:24
Al, that was a great response. I know I'm not at nearly the same place as some of you (and my hats off to those who are...I hope I do as well when it's my turn). I know that for me, it isn't other people I have to put up appearances for so much as it is for my spouse.

The reason I haven't commented much lately is that between the massive life changes we have had over the last few months, I've been struggling with depression and trying to assimilate into a completely new place. At the same time, Ben is trying to cope with being forced to retire due to PD and the repercussions of both that and his progression. Yes, we are both seeing counselors, but it takes some time to get up to speed.

The hardest thing I've found is that because I'm here with absolutely no one but him, I have only him to talk to. He's home all day and has now connected with several other retired guys on our block. I have to go to work and try to fit into a new job. There are times I need...NEED...to vent. To cry. To grieve losing my home and my roots. But if I do that it brings him down and he gets into a spiral. I feel like I'm the emotional barometer of the house. Unless I put on a happy face - even when I'm hurting - there is no happiness here. It's SO hard to do that all the time.

I understand that he has it worse than I. I don't ever want to feel like we are playing a game of "top that", because heaven knows my problems are small in comparison to his. But they are no less real. If someone can tell me how to stay upbeat all the time so I can keep this house a happy place I'd be everlastingly grateful. Everyone looks to me for answers and I have none.

By jcoff012 On 2013.05.26 11:36
Michelle, I am so sorry you are having a difficult time. I figured as much, so I left you alone. Maybe that was entirely the WRONG thing to do, huh? Sorry...

I am the extended family caregiver, so it seems...because I retired at 52, whenever there is an impending death, or serious illness, I am called in to "help" because I have the time and caregiving is so expensive...our son, my brother in law, father in law and mother in law, and my own mother...all over the US...and weeks spent away from my husband. No one has needed me for several years, so when I let my guard down, the cancer hit me...then the dx of Parkinson's...Man, life stinks sometimes.

I have found it very draining to try to be positive all the time. Life drags you down sometimes...I used to cry in the shower so no one would hear...Now, I go for a long drive or walk...I HATE PD...as do we all...It isn't fun...it isn't predictable...and it robs us of freedom, compassion, and closeness at a time in life when we need it most.

That said, for my own health, I MUST remain positive. I am often told I am TOO positive, even in denial...I find that amusing...we have lived with PD for 26 years now through my MIL and my husband...denial? I don't think so...more like acceptance of the inevitable. We chose to live life daily, plan as if we CAN do things, and live life as best we can until we simply cannot.

I have said over and over on here...I have the utmost respect for how most caregivers are managing...after years of facing trials, I cannot imgaine PD doesn't change you. But, remember...we caregivers will go on after we lose our spouse/loved one...they will not. I chose to be positive to make HIS life easier and to make mine as comfortable as possible while we face PD together. Call it whatever you wish...it's how we get through this.

As always, know others are here at different stages and acceptance of their venting and sadness is needed...no one knows what this PD is like until he/she travels the road...and no one should judge...Friends and family who do not act kiindly should be ignored...do what makes YOU feel good...what gets you through each day...caregivers are people, too...YOU are not PD; PD is part of your life, NOT your entire being. Even if no one else tells you, I will...I appreciate every one of you who are going through this...it isn't fair, but we WILL get through this...together. Jane

By Threadhead On 2013.05.27 13:47
[deleted]

By yesyoucan On 2013.05.27 15:40
Thank you for understanding

By yesyoucan On 2013.05.27 15:49
do not know how to reply to friends on blog First time on blog

By mylove On 2013.05.27 19:35
Thank, Jane. I knew you were still out there. I could have emailed too! :). It's just tough trying to juggle it all at once and my own emotions too. Plus we haven't had one nice day that I haven't had to work. It's a bummer. It's been the proverbial Seattle rain all holiday weekend. Would be great for plants. The Rhodes look fabulous at any rate. I've declared that I'm going to cope by taking little steps. I can manage that. I'll manage this the same way I managed all the other tough stuff. :). One bite at a time.

By parkinit On 2013.05.27 23:30
Threadhead -

You make some excellent and well taken points. Don't be thinking about what you could do if you didn't have PD in your lives, but just take it one day at a time. . .

By Witsend On 2013.05.29 13:48
I am grateful beyond words to all of you for your courage and honesty. You are the ONLY people who understand what I'm going through in my life, and I believe I would have lost it long ago without all of you here. There's nothing here I haven't felt, or heard, or feared. I fear today that I have waited too long to move us both into as assisted living facility, as I keep hurting myself helping him when he falls. I fear (for the first time) that I will NOT outlive him despite the fact that he is many years older than me. My own health issues are piling on and I am beginning to feel totally depleted.

My thoughts have become so restrictive - my "thinking rules" have become extremely inflexible: Don't think about the past. Don't think about the future. Don't think about what your friends and other loved ones are doing in their lives with travel, etc. Don't give in to despair. Don't allow overwhelming thoughts to intrude. Don't curse fate, don't curse God. I need blinders for my brain!

Joni

By jcoff012 On 2013.05.29 19:22
Wits end, I was the activity director in an assisted living...don't rule it out...We had two couples with wives with PD.

To enter an assisted living, you need to have a physician referral and then have personal assessments...Our resident nurse would go to your home for the assessment, then meet with the management team to see if we could offer the prospective residents a good quality of life. You also are given physical examinations to determine the amount of assistance needed. The process does take a few weeks, but it eases everyone's minds as to the quality of care necessary.

Visit the assisted living you like. Ask to have lunch (it is free), and make SURE you do NOT sign away your bank account or home to the management...if they ask that you do that, LEAVE...you NEVER have to give them your assets...ever...Good luck and don't make a major life decision when you are tired...make your life better, not more stressful...and for YOUR sake, ask for a copy of the activity schedule...it MUST be posted, as well as GIVEN to all residents...that's for you...respite!


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