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MateMe

I'm a newbie here and new to PD.

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Greetings!  I have just stumbled across this forum, and it seems wise to introduce myself before I launch into any issues. Here are the basics:  I'm a 45-year old educated woman and mother of six (ages 22 to 12); my wonderful significant other is a 71-year old educated man whose initial diagnosis (about eight months ago) of Essential Tremor was recently followed (two months ago) with a co-existing diagnosis of Parkinson's Disease.  I have been with this benevolent and generous man for six years, so he has helped me launch the three oldest children into their respective colleges and has provided a stable home life for the three children at home.  I love him dearly, owe him much, and respect him enormously.  

 

Unfortunately I am finding myself short on patience and long on irritation.  He is in early stages of PD, and I know that 1) many (or most) caregivers have it worse than I, and 2) his physical limitations are mild compared to what they will likely be in the future.  That being said, I am finding myself silently tiring of circumstances such as: cleaning up spilled beverages and food -- constantly; avoiding the bleachers at the kids' sporting events because he can't climb up or down -- most weekends; and nurturing him through computer tasks and home repair projects he insists on doing but that I would rather do myself to save time and frustration-- quite regularly.   Yes, I am turning into someone I don't like and I don't sound very loving, do I?  

 

To add another wrinkle, I was diagnosed with a brain tumor at age 34, which remained small and unchanged for nearly 11 years, and about four months ago was determined to be growing; surgery is not yet recommended, but my cognitive deficits have been documented, particularly in areas of executive functioning (task flexibility being my biggest challenge).  My significant other was fully supportive through my three months of medical appointments.  Honestly, we were especially close during those months because we napped together constantly.  His PD has manifested itself most significantly in sleep disorders, and the barrage of tests for my tumor was tiring for me, so we both needed naps, and both took them.  We are a snuggly couple anyway, and his routine tremors stop when he sleeps briefly, so napping brought us closer.  

 

If there are any ideas out there for how to develop and apply patience I would appreciate hearing them.  I don't want to sigh loudly, look irritated, or snap at him.  I keep trying to appreciate the stability he provides us and being conscious of my rising irritation so as to redirect myself, but it seems to be a losing battle.  We just came back from a travel sporting event for my youngest (and her "12 going on 21" attitude was problematic, to be sure), and I had plenty of time to stew while driving three hours, thinking about how I don't want to take him on travels again.  I ended up telling him that later, at home, when I got irritated with his fumbling with his iPhone.  I did apologize sincerely, but better if I don't speak harshly in the first place.  

 

Well... that's my introduction to you.  Any ideas for developing patience would be appreciated.  I don't want to punish my guy for his symptoms, and I don't want to enact a 'just stay out of my way because I can do it myself' philosophy that hurts him more than it reassures him.    

 

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Mateme, you wrote a very honest post.  I sense you want direct answers.  A lot of thoughts are running through my mind that I could share, but I think I want to give you just these: 

 

First, it's always a chance when living with someone without the commitment of marriage.  Makes one think more thoroughly when thinking of marriage as to the commitment.  That may not be at all helpful, but it's probably the reality of what you have.

 

Secondly, and this may sound really silly to use as an example...but bear with me until I finish.   I can relate to how as we get older we sometimes physically become much less patient.  I find that.  I get so annoyed at my cats sometimes that I find myself getting livid.  It's not been my normal MO in life.  There is definitely something more physical involved, as my whole being and psyche gets so tensed up that sometimes I feel like I could explode.  What I do is immediately think of how much I love them and how someday they will no longer be with me.  (You must understand by now how deep my love is for these little creatures.)  I just get up and try to find out what it is that they are whining to me about, and or I remove my one cat from the upholstered furniture he is destroying with his claws and make sure he knows I am not pleased.  Then I love on each of them.  The thought of all they have meant to me and how they have helped me  (yes, it's true) and the thought of losing them snaps my mind right back to wanting to help them.  I shudder to think how I would always suffer from feeling awful once they die if I had to think back on not handling those stressful situations in the most loving way I can.

 

Just some thoughts from the cat lady, to take or discard.

 

Linda

Edited by Linda Garren
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Hi MateMe and welcome

 

Everything you said, is the normal, natural reaction to the beginning of this journey you have begun.  There are so many emotions that you will work through as you go forward.  First off learn to sigh and walk away for a little while, the irritation that you feel is normal at this stage.  If you sigh and walk away to calm down and let the irritation wash away, that gives him time to avoid the stress that he would feel from knowing that he unintentionally got you irritated in the first  place.  He knows what is happening to him, and he can't help it any more than you can help wanting to do everything for him just because you hate watching the struggle he goes through, or that you could do it faster.

 

For me what works is to get up two hours early, exercise for one hour, and then meditate for one hour, I am sure that it doesn't work for everyone, but it does allow me my time to prepare for the day.  That means for me that everything must move at a slower pace, allowing more time for my DH to accomplish those things that he can still do. 

 

Find something you love to do that is relaxing and do it everyday

Remind yourself every day of what it was that attracted you to him in the first place.

Remember that he isn't doing any of what irritates you on purpose

 

Understanding that he can only control so much of what is happening to him, and that does take awhile, the less stress in his environment the better he will do. 

 

Most of all remember to breathe, you have a long journey in front of you, one day at a time........one foot in front of the other.

 

Good luck, and again welcome.

Edited by Trying hard
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Mateme,

You are at the end of what i call 'the honeymoon' period.  Probably the hardest time emotionally and mentally for you. 

 

You eloquently describe the early stages: ..we can do this..cuddle up a little.. appreciate each other and why you are together...

 

Now is the wake-up call.  The one you wanted to sleep through.  I know I did.  The getting (naturally) irritated and finding yourself saying "Really?!?  You did (or didn't do) what "?!?  Sigh.  I don't know which is worse, seeing the hurt on his face, or feeling the disappointment in yourself for your natural reaction.

 

It will take time.  Trying Hard excercises and meditates for 2 hours in the morning.  I get up early and just sit in the quiet and read, and have to manage/cover my irritation if my DH gets up 2 hours early and interupts MY TIME.  We're only human, and there is little or no support out there for us, it's all focused naturally on the PwP  Particuliarly in the early stages, your partner looks good, sounds good, and doesn't really seem to have too many problems to your friends or his friends.  So the assumption is 'what are you complaining about.'  This makes it worse. 

 

So.  Find some time to yourself, keep repeating "Life Sucks, and no one gets out of this unscathed."  With that bitter truth in mind, find the good.  Remember why you have been with this person, his innate worth, the joys still left, and forgive yourself the natural human irritation you feel.  And remember that swallowing the irritation until this stage resolves feels better than disliking yourself for inflicting emotional pain on a loved one for something they can't control.

 

Having said these words of wisdom, also know I tear my own hair out in private and bite off many words before they are spoken everyday over how the dish washer is loaded.  Spatial organization is not a task for the weak of heart.. or Pwps.

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My husband has been diagnosed for almost 18 years and now not only suffers the physical limits of Parkinson's, but has dementia, hallucinations, paranoia, and delusions. I understand your frustrations, feelings and loss. Through all of our experiences, I have many talks with myself. The talk that helps me the most is asking myself how I would want to be treated if the situation were reversed. I have regrets for not always living up to what I know is the right thing to do or say, so I have to step away, take some deep breaths and have the talk again. It is very hard, the hardest challenge of my life. I get discouraged often. He has been very good to me over the years. I hope I can continue to give him the care he deserves. Don't forget that you need to take care of yourself. I forget that too often.

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Thank you all for your helpful and thoughtful replies.  He is definitely worth the effort for me to adjust my attitude and remember his good qualities.  And he still is darned good looking, to boot  8)   Fortunately, he learned six years ago to stay away from the dishwasher -- and most kitchen components except for the floor  :-P   (I hate to vacuum!)  

 

It is good to be reminded of The Golden Rule; I can think of numerous nuns throughout my Catholic education (elementary through college) who tried to impart that wisdom, so I really have no excuse for not enacting it.  Some quiet time to prepare myself for the day might be helpful (and it sure won't hurt as I try to keep my wits about me when dealing with the 12-year-old).  One thing I have started is reading books on my iPhone.  Since Harper Lee is coming out with a new book, I am reading To Kill a Mockingbird to get ready; I am finding that when my beloved is starting to get on my last nerve, it is better to pull out my iPhone for a little reading to distract me briefly and feel like I am doing something productive (i.e. getting ready to read a sequel).  Courtesy of brain tumor, or aging, or stress, my recall is not as sharp as it was, so refreshing my mind with an old book to get ready for a new book seems very productive.

 

And thanks for the reminder that he is not intentionally irritating me.  He just told me that very thing yesterday.  I felt foolish when he pointed that out and I roundly deserved to feel bad.  

 

I think that the forums on this website are going to be helpful.  I have always been a learner and very good at taking direction, so I anticipate reading as much as I can of the experience and wisdom of others and seeing what elements work for me, for him, and for us.  When his sleep disorders first reared their ugly heads and we were together reading advice (lots of it) to sleep separately, I immediately told him, "I'm not going anywhere" and his look of distress was gone instantly.  We made a few environmental changes and tinkered with his medication dose (with Doc's blessing) to make it less likely that either furniture or I would get damaged, and we are still curling up together every night in our double bed.  It works for us, even if it doesn't work for other couples.  But I am all about reading up and trying out solutions, so the forums here are going to be a tremendous blessing!

 

Thanks again.

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I would just add one more thing to what Quiet said, we are human, we will make mistakes.  It is through those mistakes that we fix, that makes tomorrow a better day. 

 

If tomorrow isn't a better day, well just come here to the forum and rant, you'll feel better, your household will remain calm, and we will understand.

 

Stay strong.

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Thank you all for your helpful and thoughtful replies.  He is definitely worth the effort for me to adjust my attitude and remember his good qualities.  And he still is darned good looking, to boot  8)   Fortunately, he learned six years ago to stay away from the dishwasher -- and most kitchen components except for the floor  :-P   (I hate to vacuum!)  

 

It is good to be reminded of The Golden Rule; I can think of numerous nuns throughout my Catholic education (elementary through college) who tried to impart that wisdom, so I really have no excuse for not enacting it.  Some quiet time to prepare myself for the day might be helpful (and it sure won't hurt as I try to keep my wits about me when dealing with the 12-year-old).  One thing I have started is reading books on my iPhone.  Since Harper Lee is coming out with a new book, I am reading To Kill a Mockingbird to get ready; I am finding that when my beloved is starting to get on my last nerve, it is better to pull out my iPhone for a little reading to distract me briefly and feel like I am doing something productive (i.e. getting ready to read a sequel).  Courtesy of brain tumor, or aging, or stress, my recall is not as sharp as it was, so refreshing my mind with an old book to get ready for a new book seems very productive.

 

And thanks for the reminder that he is not intentionally irritating me.  He just told me that very thing yesterday.  I felt foolish when he pointed that out and I roundly deserved to feel bad.  

 

I think that the forums on this website are going to be helpful.  I have always been a learner and very good at taking direction, so I anticipate reading as much as I can of the experience and wisdom of others and seeing what elements work for me, for him, and for us.  When his sleep disorders first reared their ugly heads and we were together reading advice (lots of it) to sleep separately, I immediately told him, "I'm not going anywhere" and his look of distress was gone instantly.  We made a few environmental changes and tinkered with his medication dose (with Doc's blessing) to make it less likely that either furniture or I would get damaged, and we are still curling up together every night in our double bed.  It works for us, even if it doesn't work for other couples.  But I am all about reading up and trying out solutions, so the forums here are going to be a tremendous blessing!

 

Thanks again.

 

MateMe:  Loved reading your post.  There is a lot of love and hope woven throughout it.  :-)  You have some great ideas and sound like one determined woman.

 

And remember re: the Golden Rule that as a Christian you have the Lord with you to help you live it.  We can't do it on our own as consistently as we can with His help.  He's with you every day as you go on this journey with your loved one.  Trying Hard's example of meditating and praying prior to the day starting is such a good one.  Also, there are posts and help and support to be had on "A thread for anyone interested in topics of Christian faith--all invited."  We'd love to have you drop by at any time.

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