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Topic We really don't know, so what should we do? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.01.31 15:00
Been sitting here wondering how ANY caregiver can truly help their PWP, when we have no true idea what their life has become.

So many ongoing anxieties and thoughts... What should we honestly expect from this disease? What does it feel like? What can we do everyday to help you get through it, so you have the strength and DESIRE to keep going? What is it like when the meds kick in? Can you "tell" when the meds do/don't Work? Do you hide pain from me? Do you still love me and desire to be with me, even if you sometimes cannot? Are you cognizant of my longings or sad glances? Do I hurt YOUR feelings because I just can't get inside your head? Do you understand I love you, but you aren't always aware of how *I* feel, especially after an unkind word hurts my soul? Are you afraid of dying? Are you afraid of the future? Are you angry with God? WHAT can I do for and with you?? Just wondering today...

By LOHENGR1N On 2013.01.31 17:01
Jane, You ask some pretty deep questions and I can try to answer some of them. I can't speak for all Parkinson's Patients however. I can speak from experience and observance. What you can do for your Parkinson's sufferer is be there for them. Saying that I don't mean 24 hours a day 7 days a week (G-d if you tried that you'd go batty and drive the patient batty also). Also I don't mean "hover" if you want to snuggle up and tell your husband/boyfriend/wife/girlfriend how good looking they are I'm sure they won't mind that but if they're going to get up from the chair and are having a bit of a problem don't stand there leaning in every time they move reaching to help pull them up. We're a stubborn breed but after we try ourselves a few times we'll ask. It might not be sweetly because we've just failed and don't like the fact we can't get up so it may be a I could use a hand you know! Or depending on the Parkie it could be more colorful.

What can you expect from the disease? That's easy, expect the unexpected. Whatever you think you have a handle on the disease will either change that or begin on something else. It's a cruel sly beast that way. Do we hide pains? Yes! Why because we still love you and still want to shelter you from the aches and hurts of life, to protect you as we did before this disease struck and yes the desire is still there too. What can you do everyday to help us? Again be there, but by being there also let us do what we still can do. Even if we're taking 3 times as long! By doing this you give us a great gift...self worth. Just the stepping back and allowing us to maybe fumble a bit but get it done is good medicine. This comes hard for many caregivers as they want to make it easier for Us but you do yourself and the Parkinson's Person great harm in so doing. For you, you start to do everything and it WILL BURN YOU OUT. You may view it as I get it done quicker so we can do something else to the Parkie it is seen as another failure! Gawd I can't even do that anymore I'm useless! With good intentions our self worth is taken away bit by bit. In time you will have to do more why rush it? Letting us help ourselves, do things we still can will help give us the drive to get up every day and desire to live as full a life as we can.

Yes We can see and recognize concerned looks and sad glances. Yes we probably do feel bad for harsh words that hurt you. You're your Parkies loved one and they don't want to hurt you. Do you hurt our feelings because you can't get inside our heads? Are you kidding? That's the last place we want you, it's our last escape from you being under our elbow crowding us all day lol.

Are we afraid of dying, of the future or angry at G-d? I can't speak for others on these subjects and would be a fool to try to. Those answers will have to come from your Parkies in time but don't press for them to answer them.

This is one great question; "What can I do for and with You?" I hope you're ready for the answer. Analyze, analyze, analyze but don't over analyze! Hey you already know care giving isn't easy! If your charge went for a walk every night but stopped walking? You both know they need exercise, instead of pestering them to take a walk stop and think. Did they stumble and fall? Just get missed by a car? Something changed that they don't want to talk about so.....Take the walk together. Be there for them. Help them get exercise. You don't need to know what happened right now. They'll tell you when they are ready. Suppose they did trip and fall? They are now afraid of falling far from your help and what if they were injured with you waiting at home? You'd worry. Bet your first reaction to this was "That's being silly" but if you're the kind to do everything for them is it really silly of them? Think, if they feel safe out in the yard (close to you if needed but still out puttering feeling of use) because of telling of a fall you are now out supervising watching every move? You can't get inside work done, they have to sit around feeling useless so you won't worry and no one enjoys anything. So just walk with them idle talk even if one sided will draw out why they don't want to walk alone without prodding questions. Another complaint is We won't go to exercise groups! Well perhaps you're doing everything and that's why we need to get more active but by doing everything you're sending us mixed messages; We can't do much on our own....yet.....You want us to go do exercises with a bunch of strangers? You don't let us do things then you want us to go do other harder things? Go with us a few times at first together and we might say to ourselves this might be fun if they weren't tagging along. Or looking at it another way We build our children's self confidence by doing with the letting them do alone. Our self confidence is stripped away by disease we also need building to show we can do alone some things.

For last I've saved the to me anyway least. Can you tell when med's kick in? Myself there was a very slim time for this. When first on med's they worked and I couldn't tell in/out, then a short time when I could tell the kicking in and out. (to me that was the best time) I could tell it was time for my next dose and knew about how long I had of functioning near normal. Now I take then and yeah they can kick in only to kick out right away and not kick in till next dose or just keep kicking in / out. It's nothing that concerning to me now anyway. It can be hard to explain and it's not like hearing a chorus of angels break into song anyway. Well not that I've experienced. Think of it as a secret handshake or password we Parkies use and I'm not telling.
Hope I've answered some of your concerns and questions and shed some insight into the world of Parkinson's from the inside for you. We're all in this together. Take care, best of luck and hang in there

quote from the movie tombstone
Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it

By jcoff012 On 2013.01.31 17:32
Your voice is always welcome in my world, Al...I was in a very good mood when I wrote the first post...I, like you, challenge this dumb disease. I have heeded your good advice, especially about letting him do things on his own and giving him time and space.

It's just, well...hard to explain, but I will try, too...From our point of view, or perhaps this is my own view, I truly am ready for the long haul. You see, he was and is, so far, there for me and I want to do the same for him. As you have mentioned, in our personal journey, it would be much simpler if we "only" had PD with which to deal...cancer rears its head much too often in our family, too...

Perhaps, in my own way, I over analyze health issues. But, if I do, it's because I want to help make things simple, if possible. I figure learning from the best minds will keep me sane!

Like you have said many times, caregivers take over mundane tasks WAY too early in the course of this disease; then, are burned out and sad. I don't want to be another statistic. That's why I ask questions here. And, yes, they are deep...and, yes, he and I have talked about a great many of them...I DID ask if he was afraid to die, but remember, he was a Marine..."It is what it is. Everyone dies, I just have a time frame, even if it's just an idea."

I guess your answer about the pain hit me hardest...You are right and so are we, your caregivers...We both want to shelter each other from the pain, and yet, we both know the pain exists. As a caregiver, I would take away your pain if I could and it is frustrating to me to THINK you are in pain, but try to NOT ask so many times. (See? I listen to you...I have cut WAY back on the, "Are you ok?s and Where does it hurt?s")

As for getting inside your head...your response cracked me up! ANY woman with children KNOWS what it's like to hide in the bathroom or in the shower with the door locked so the kids cannot intrude! LOLOL So, I see that getting inside my PWP's head IS the last place I need to be! LOLOLO

So, back to square two (already passed square one!)...onward and upward...

Couldn't go through this without you, My Friend...as always, thanks for listening to my questioning...hugs and have a good laugh tonight...Love always, Jane

By dkleinert On 2013.01.31 17:42
Jane - Al gave you the BEST answers to all of your questions!!! You ask the questions we all have. I can tell you that we don't discuss death at all. We dealt with my mother in law passing away last year at 91, and that was the closest we have come. We talked about where my PD husband wants to be buried - at home in TX - cremated. That was all he would discuss. Does he still love me like he used to? I think he does. But intimately it has not been possible for almost 5 years now.....was I ever angry about it because he had been such an excellent lover? YES, I was really angry and felt cheated because I was relatively young - however, then I started thinking about how HE felt about it, and know it was a very painful thing for him to accept also. I went months that I could not hold him for very long because I was afraid it would arouse him and me, and knew that nothing could come of it. Then I got over it, and I hug him a lot, kiss him alot, and tell him how much I love him. He is happy with that. It helped. We had many great years, and I am thankful I experienced that with him. This is a new chapter in our life now, and I am content with it. As long as when I tuck him in at night to go to sleep he knows how much I love him, then I am content. I have learned to sleep without him, even though I yearn for that often. We have tried to sleep together, however he thrashes around so much that he can't sleep worrying he will hurt me, so we just don't. Do I miss him - YES. Does he miss me? I don't know. He misses so much, that intimacy is only part of it all.

Learning to be content and deal with ONLY what we are facing TODAY is where I am now. Used to be, for maybe the first 5 years, I worried about the future. Now I don't. I cherish the fact that Joe gets up in the morning and is with me until he goes to bed at night. Then we start over and I relax when I hear him up moving around in the morning. We will deal with whatever comes up, and not borrow the issues that will be coming. My PD husband is not a complainer, so I have to be a good detective and watch him and notice if I think something is wrong. I ask him often "Are you OK?" He has been pretty good at answering if there is a problem he wants help with. I know he suffers in silence, but as Al says - PD guys are a tough breed!!

One of the best pieces of advice I ever got from the forum, came from Al, years ago - talk to your PWP. Don't be afraid to ask questions. You are a TEAM, and you have to ask questions because sometime it is difficult for them to put in to words what they want or need. Asking questions opens up a new channel of intimacy that you may not have experienced together. Your relationship is going thru a change - and not always for the worst.

Enjoy today with him. It is really all we have!! Big HUGS to you, Jane.

By jcoff012 On 2013.01.31 18:17
Donna,

You, Michelle, and Al have each made me cry today! And, that's NOT a bad thing! Love you ALL for your insights...as I have said in the last year, sadly, four years ago we already faced my MIL's death from PD...she had it for 22+ years, so we have some insight as to what to expect...

AND, sadly, we also know that our trip down this road is unique...Mom never had external tremors, Carl has had them for years...

Anyhow, I am sorry we met here, but happy to know there are kind souls who stand by each other...no matter what is on the horizon.

Jane. jane_coffey@comcast.net. If you need me....We live in CA, so remember the time difference! ;))

By carman96 On 2013.02.01 07:03
Okay I admit that I hover over my husband and jump up to help him and wait on him hand and foot. And constantly ask him how he is doing. But in the morning I give him his medication and help him put on his shoes and pants and help him get up and moving. If not it would take him forever to get up and he never ever knows when to take his pills. I do try to let him do things by himself once his meds kick in but yes I worry about him falling or doing something crazy that he can get hurt at. If he does get hurt that's more pain for him and more work for me. I know this is very hard on him and he gets frustrated and upset when he can't do something for himself. He will lie on the bathroom or bedroom floor for hours and will not call for help. So I check in on him a lot.

Al- you are certainly a strong person and independant and seem to have your mind working. But my husband says and does the craziest things sometimes and is hard to reason with. So I'm bossy and like things my way and do everything around the house. And all the shopping driving banking etc. Come to think of it I have been that way since we met 29 years ago!!
So I guess what I'm trying to say is everyone is different and yes my husband has become very dependent on me but this all started long before he had Pd. Old habits are hard to break!

By dans316 On 2013.02.01 10:49
I seem to be in the minority as a caregiver for my wife. Most of the posts I've read here, the PWP is male and when the PWP is a female, the care giver is usually a female.
No matter, I too watch over my wife constantly and probably am too quick to help her up from a chair although she never complains about it. I always worry about her falling as she has Osteoporosis and has broken both hips in falls, although those falls were not from the PD.

By parkinit On 2013.02.01 13:24
I appreciate the loving, kind tone of all the responses here. All of our PWPs are different and we are all different people.

My own mom, who is 80, noted that my PWP EXPECTS me to help a lot - more than he should. I do have to prod him to "help himself" sometimes. He has a lift recliner chair and sometimes he will struggle to get out of the chair and not succeed. He will look at me and say, "Aren't you going to help me?" Now, it has been difficult for me to sit still and NOT help him, however, I many times must gently remind him to "use your lift chair to get you up and then I will help you transfer."

So, it is not always the caregiver jumping in wanting to do everything, but possibly the caregiven expecting more help.

Also, it is the common knowledge in nursing homes that patients "have a right to fall." Does this sound insane? It did to me at first, but then, after many, many falls, I began stating to my spouse, "You go out in the back yard and knowingly do things that may be dangerous, but you have a right to fall." I can tell this is disconcerting to him; he wants me to be responsible for him, to be there to catch him when he falls. Visitors may say, "Aren't you a nervous wreck letting him go in the back yard by himself?" I cannot drop everything every time he decides to go outdoors. He does not ask, "Can you go out with me, is this a convenient time for you?" He goes. So I let him. And I have a big bay window from which I check up on him. And if I don't see him after awhile, I do go outside to see what may have happened. Sometimes nothing; sometimes a fall. He has a right to fall.

By lilflower On 2013.02.01 13:58
I guess I fall into the Carmen category, My husband and I have spoiled each other from the first day we meet, so needless to say I am there for him at all times yes I get tired at times and wish I had help but they we lay down together and take a nap. Our lives have really changed but everyones life changes as they get older. He is an active sleeper and yes I have been slugged while he sleeps and has his wild dreams so we got a bigger bed problem solved. We can still snuggle together or I can roll over out of harms way and he knows I am still there. We talk about things as much as possible and we both give each other the hope and encouragement to get through each day.

By Freespirit On 2013.02.01 16:08
I am so deeply touched by the shares here today! Thank you everyone!

By jcoff012 On 2013.02.01 20:41
Lil, my husband and I married at 18/19 and have been through extreme highs and devastating lows...be married 46 years in June! Through it all, we remain devoted to each other...

I must admit, he is a much better caregiver to me than I am to him...in so many ways. We have a favorite diner here and the two main waitresses have more than once said, "Do you SEE how he looks at you? Such love." And, "I love how you reach across the table and put his hand on your face." So, when he needs me, I will be there; I AM there...but, we have discussed this and he said he wants me to not hover and to treat him as before.

BUT, my take on this is that my husband has always been a caring, but EXTREMELY proud man who wants to take care of himself as long as he can. We know there will come a time when he will have to be helped more and more. I am going to take the solid advice I have been given and allow him his space.

However, I have been making a conscious effort to walk more, eat better, and tomorrow I am going to volunteer some of my time to help our local PD group. If I put all of this in place now, I will be able to help him better as PD progresses...and have outlets for myself.

I don't think there is a right or wrong way to care for someone, if done with love. However, I know some of the people here well enough to know that when a question is asked, answers that can be given only from personal experience are highly valued.

No matter how you choose to get through this PD, hold your head up, knowing you are doing the best you can. No one told us at 18/19 that our lives together would end this way, but life is good and we are here to get though this with dignity and love...Hugs, Jane ;)


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