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Topic Reality check; Quit trying to do things you used to be able to do. Go to previous topic Go to next topic Go to higher level

By Caregiven On 2010.07.30 07:29
[deleted]

By rmshea On 2010.07.30 08:13
Love this! This applies to everyone who mopes and wallows about what used to be...This life is all about the journey, so be grateful and have fun! Wish someone I know and love would learn this lesson. I'd love to see your picture...LOL.

By Emma On 2010.07.30 08:28
Caregiven, I applaud the attitude that you and KK have adopted. I admire both of you greatly and find you an inspiration. Kitty's postings always lift me up, she is a wonderful supportive woman/friend and I think you are lucky to have her (and she, you). I would just remind you that there are many of us out here who are long past the stage (for lack of a better word) that the patients on this board are in. Just the fact that you and Lohengrin, shakydog and others can actually post on this forum puts you light years ahead of many of our loved ones, including my husband.

Earlier in my husbands Parkinson's we were much like you, we did everything we could possibly do. We wanted to enjoy every minute that we could and I'm glad we did that. I encourage everyone to grab life by the horns. However, we are now at a place where even putting a record on is not possible for my husband because he can't remember how the CD player works. I bought a simpler boom box for him but that is also too complicated. His voice is almost gone so even speaking is difficult. He can no longer use the computer, the TV remote or the telephone. He cannot prepare sundaes or anything else for that matter. He can only walk about 10 feet before he either falls or has to sit down. Most of his energy is spent in just getting through the day. Fun for us is now watching old westerns on TV, having visitors (if the don't stay too long), me trying to imitate the dancers on DWTS because he finds that extremely funny (wonder why?!?) and going for a ride if he can manage getting into the car. If I know that there is something he enjoys or wants to do I will move heaven and earth to make it possible but sometimes it just doesn't work. I'm not saying this to be discouraging or negative, it's just reality for some of us now.

That said, I agree with you. Enjoy every minute to the fullest, have some fun, be silly. If you are lucky, and I hope you are, you will be able to continue that for a very long time. If not you will have those memories and no regrets. That is true for everyone, not just people with PD. None of us knows what the future holds.

Hugs to you and karolinakitty. Enjoy those sundaes!

By mylove On 2010.07.30 09:31
Amen, brother! :-D You and Shakydog must be sharing the same thoughts this morning. He never fails to inspire me.

There's going to be two very different sides of this fence this morning, I suspect, and that said, I want to add my two cents to both sides. Caregiven, please hang on to that thought for as long as you can. Even in the darkest days, if we can find some thing that uplifts us, even if it's one small thing, then we have something to make this life worthwhile. And if we tackle this challenge with the love and support of our family and friends - our 'team members', well, as Shakydog says, there's nothing we can't do together.

To Emma and the other posters which will follow: hang in there. We who aren't quite there yet understand that there are going to be a whole lot more rapids on the river to come. It's not denial - it's that if we don't find something to cling to, then all hope is lost, and if you lose your hope, you are dead in the water without a raft or a paddle right from the getgo. I understand that your loved ones are further along, and to do the things they loved to do (or even the things someone else suggests that they love to do) may no longer be possible. But I would offer this: this is not a static journey, with distint steps and stages. Life is a long continuum, even without PD. I think what he's really saying is this: when the road looks long and dark, find that something to bring you back up again. Accept that what today looks like may not be what yesterday looked like, but that there is still something good to find in today. If they can't eat that sundae or work the CD player, move on. Don't dwell on that past. That past is past. Watch those Westerns! Go for a ride! Keep trying to find those things that feed your (or your loved one's) soul, and try to let go of those thoughts of the past and the 'can't-do's" that drain us.

Emma, and all of the rest of you: I know you're tired and frustrated and I admire you all. I hope that you get some rest and find some peace, but most of all, I hope you and your loved ones find, as KK and Caregiven have, some thing that feeds you and keeps you going. Remember always to care for what's INSIDE of you, and don't let that get lost in caring for the OUTSIDE. Caring for our emotional needs is SOOO important; maybe even more important than the physical needs. Modern medicine can keep our bodies going longer than we even wish them to, but it can't fix someone who's given up. Big hugs to all of you, and I hope you find some peace and joy in some small thing today. :)

By caregivermary On 2010.07.30 11:02
Again, I will say please don't assume that those of us that are in advanced stages, do not put forth our very best effort everyday to make life enjoyable for our PWP and for us. I do that and have been successful. Just don't assume because we discuss the most personal and difficult issues on this forum that we don't have a positive side.

We must use this forum to discuss and gain advice on the difficult issuses we are facing and many are out there looking for this type of information. Reading the intro from so many indicates such.

I need reassurance, advice, etc. from caregivers on this forum. Thank you to all of you who have taken the time to share difficult experiences, offer solutions, and who listen, understand and can relate.

By Emma On 2010.07.30 13:14
caregivermary and mylove, thank you both. I did not intend to come across as negative or to imply that either my husband or myself had given up, we certainly have not. My point was simply that some of us have to dig deeper to find those things that bring that joy and to "just do it". It's important to remember that we are all at a different point in this disease and what works well for some doesn't work for others. It is very discouraging and difficult for people like my husband who has extreme pain, loss of physical ability and loss of mental ability (which he is aware of) to stay positive. That's reasonable, we are all only human. We as caregivers, even in this situation, do what we can to be positive and keep encouraging our loved one while at the same time validating and respecting the negative feelings they sometimes have. It's always a balancing act. We do not dwell in the past, but we do remember it fondly even as we have let go of it. You might be surprised if you met some of us "negative" people in person. I can only speak for myself but I am unfailingly cheerful and positive with my husband and family. Like caregivermary this forum is where I come to let the negative, difficult and personal out, where I can speak the unspeakable so that I can go on dancing my silly samba for my husband's amusement, pick him up when he falls (literally and figurtively), and comfort him when he's down.

I do not think that the people on this board who have a positive attitude are in denial. I admire them greatly. We are all at different points on our journey with Parkinson's and we all deal with it in our own way and that way changes over time.

Hugs and blessings to all of you.

By LOHENGR1N On 2010.07.30 16:25
Hey everyone what's up? Following this thread and now seeing the original post is deleted I've got to comment. We're all family here or at least that's what we've grown into. Yes we're at some of the many different "stages" of this. We're a jigsaw puzzle of Parkinson's Disease, an interlocking group of support and knowledge. Being from different walks of life and experience, backgrounds and circumstances. Other than the obvious common link Of Parkinson's Disease We all have another common link right up there in the title of this spot. "Care" put whatever you want behind it giver, partner or patient. If we didn't care we wouldn't be here period. I've said many times over the years here sometimes you just have to type it out, get it down so you can go on. (vents). In caring about others on this forum sometimes someone reaches out with advice or something that works for them.....no harm, no foul. At times someone reacts, a sore spot is hit and they react ...still no harm, no foul. You'll have that with any group, add in the stress of dealing with what everyone here is facing everyday I'm surprised we're not surrounded by craters as P.D. explodes all around us. To everyone who contributed to this post I applaud you all. Too bad our world leaders don't read the forum they could learn a lesson on politeness, compassion and tact in dealing with others even when they don't agree. We know it's not care-curing it's trying to lighten or ease a hour, minute or just a few seconds of the day, a smile or nod, I'm glad for this thread, I'm glad it was started, (thanks for reaching out Caregiven) I'm happy for the responses. I shows me that with all our illness and troubles that in our hearts all here are damn healthy. I'd proudly stand side by side with any of you if needed. Ok I'm done now. Take care, best of luck and hang in there!

By Emma On 2010.07.30 17:22
Lohengrin, you are a wise man ... the sage of this board. I know that I don't always express myself as I intend to, I kind of shoot from the hip. When I was still working I used to get "thanked" (ahem) for my candor a lot. I'm sorry that the original post was deleted, I loved it but apparently I didn't convey that very well. I learn so much from everyone here and truly do consider everyone of you family and friend.

By karolinakitty On 2010.07.30 17:41
Emma ... you are a sweetheart and what you said and how you said it was just perfect....You are where you are in this fight and i always listen to your wisdom when it comes to the hard parts. You have been there and done that.

By karolinakitty On 2010.07.30 17:45
I'll repost what he said because i copied it as it was his heart....... We felt it might of upset a person... or ....maybe it wasn't the place for it ..... I feel that in all the messes we deal with on a daily basis that a little humor may have been good for the soul ....

Nonsense! Do you REALLY think that's what you want? Of course we must be practical and responsible, taking constant care to not overdo things, but that is not what this message is about.

Live a little! Do something silly before today has ended, and enjoy every bit of it. How about ice cream sundaes for breakfast? Or perhaps drag that old Sinatra collection out and with your doors closed and blinds drawn, sing along with "Strangers in the Night" at the top of your lungs. I bet it would make you happy. I BET YOU COULD STILL DO IT.

A long strange journey it has been for Karolina Kitty and I. There has bheen much suffering in a plethora of levels. Emotional and physical pain has been, and will continue to be intense.

BUT I CAN'T THINK OF ANYONE THAT ENJOYS LIFE MORE THAN US. An oxymoron? No, it is our reality; the one that we have made for ourselves. I have recently adopted a new motto, and that is: CHERISH EVERY MOMENT
In closing, facts are facts. You can't change that. We as the caregiven are all going to suffer more than the average and eventually die. But what we do with the time we have until then can be downright fun if we set our minds right and have the courage to do it.

Now before Ms Kitty even wakes up, I'm gonna cue up some Merle Haggard, some Metallica, and an ear splitting rendition of The 1812 Overture, in reverse order. As she walks sleepy-eyed out to the kitchen table to find two triple scoop hot fudge sundaes, and I am taking pictures of her hair sticking out like a porcupine, she will be accompanied at full volume with extra emphasis on the bass.

By Michele On 2010.07.30 20:28
Wow. I read this thread after ten postings and was blown away by the honesty, compassion, wisdom and friendship of this group. i'm pretty new to the forum and I always find comfort here. This topic has really gotten a lot of reactions. As for myself and my PWP, we are much like Emma and her husband - in advanced stages both physicaly and mentally. My husband needs a power wheelchair just to get around the house, he cannot operate a TV remote let alone a computer or any electronic device. His voice is so soft that communication between us is difficult and frustrating. He spends his days watching movies on DVDs that I set up for him and reading. So we watch movies together, get in bed together early (he gets sooo tired by early evening) and watch the Phillies and have snacks, go to McDonald's drive through and get him Frappes and cheeseburgers and our favorite Saturday night date is to go to the WaWa (local convenience store) where he wheels around in his power chair to pick out his favorite snacks. We enjoy our days as much as we can and I am grateful for the good times and affection that we share. We just don't know what tomorrow will bring and I find our moments of happiness so precious. Thank you Caregiven and all who contributed to this thread. It is my place to be negative when I need to also. I'm always positive with my family and friends but it is so necessary to have a place like this to express what it is really like for me to take care of a loved one who has this awful disease.

By mylove On 2010.07.30 22:16
Hi again Emma!

I hope you didn't feel like I was aiming at you.. you were just the first one to post! :) I grinned when I read Caregiven's post this morning and I just had to thank him for reminding us to find the roses along this thorny old path. I'm so glad you guys are doing the same thing: finding your own moments of joy amongst the tedium and frustrations of daily life.

I hope the rest of you don't think that any of this 'hang on to the good' means that you can't be frustrated or have bad days or vent when you need to. This is for sure a safe place for that. Amen - we sure need it.

What I REALLY liked, though, was that everybody that posted in return took a moment to think about what they WERE doing that eased their stress and pain for a while and brought them some measures of happiness/comfort. Maybe this thread is a good place for that. How about the rest of you? I'm curious to know what you're doing to stay sane. Maybe the rest of us could find some inspirations or suggestions from everyone else. We offer up solutions to every other problem - How bout this one? What does your loved one do for pleasure or comfort?

By mylove On 2010.07.30 22:27
Hey KK! Tell your sweetie that we are sorry he felt ran off. I loved his post and I'm really glad you reposted it. Thanks so much! I feel very thankful for both of you, Al, Emma and everyone here.

By Emma On 2010.07.31 04:01
KK, luv you :) thanks for reposting

mylove, I didn't feel that you were taking aim at me. I actually like this kind of discourse and you always make me think. Sometimes I need a fresh perspective.

Michele, I'm glad that we, your new adopted family, haven't scared you off yet! Like any family we have a lot of personalities and opinions but at the end of the day we're always here for each other.

By hubb On 2010.07.31 12:52
We're about in the same phase as Emma and Michele and I say phase because I know PD has 5 different stages - you can go thru different phases of stages - sounds confusing I know but when you're there, you know it. We've been on this PD journey for 24 years now and you feel quite different at age 56 when he was diagnosed than at age 80, which we both are now, so it's taken its toll on both of us but we are surviving.

Now to change the subject - I've been thinking about the cognitive skills test they give my spouse each time we go to the neurologist - since we've been going at least two times a year for 24 years, I figure he's had at least 48 of these tests...count backwards by 7, spell world backwards, what day, month and year is it, etc. etc. I've come up with a new one you can use at home....get your socks out of the middle drawer, get your underwear out of the top drawer, the cookies are on the middle shelf of the pantry, etc. If they can do these things, then their cognitive skills must be okay - I'm sure the neurology branches have spent much money on devising these skill tests - think I'll suggest it go to research instead as the caregivers can administer better ones! Just kidding of course...

By karolinakitty On 2010.07.31 20:16
hubb ...I think it's a great idea ...... all kidding aside, i have even seen on this board where PWP's try and memorizr the answers to the questions they are asked. The last time we went, as soon as the nurse took us back, mine said, "Apple, table, penny", the nurse said guess i have to find three new words for you. I think the test is probably the same all over but if every 6 months they give the same test, what does that prove? It is a learned experience not necessary one of memory then. Here's a few more for your questionaire:
Tell me what time you need to take your meds?
What is the balance in the checking/savings account?
Repeat after me..."Shut the fridge door" or "Put your clothes IN the basket/hamper"
I guess we could go on and on .....
I guess that's what i like about going to the Movement disorder clinic. They don't ask those questions but give him tests in other ways.
Writing the alphabet and numbers, making a clock, drawing different figures, asking about family members names...i think that's a big one..... asking about his meds and what he does on a daily basis. Those are i feel more cognitive then the ones the regular neuro asks.

By hubb On 2010.07.31 21:53
KK - you are so right - we should start our own list - bet caregivers can come up with some good ones - ours have always been like Cleveland or Chicago, penny, table or apple sometimes - same ole' same ole' every time and none of it means anything, but when did you take your meds and questions that are pertinent to their every day living make a big difference. One time we had a student giving the test and she was pointing to things & asking what is this & pointed to her shoes, and my husband said "shoes" and she said she was looking for more and he said "ladies' shoes" and she said she was looking for clogs. Well my husband wouldn't have know clogs in a 100 years and he said he almost said "ugly shoes". So we take our laughs wherever we can find them - sometimes they are few and far between at this stage of the game, but they do happen. He has always said that if something I'm cooking needs shaking, to give it to him because he can shake it better than any machine can...and there are times that is certainly true, so you laugh when you can because humor can get you thru a lot of sticky times.


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