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By mylove On 2013.08.25 10:18
I wonder how many of us can relate to the feeling of isolation. I've always been an introvert, and my spouse and I could go months with just each others company, but lately I've begun to wonder if we shouldn't be building a support system while we still can. This article resonated with me:

The thing is, it seems like whenever we try to do something, the plans change at the last minute and prevent anything but sitting in the house staring at the walls with me surfing the Internet while he woodworks in the garage. Great example: we've talked extensively about finding a church here in the new town (we have been here for five months now). Every Saturday we make plans to go. Every Sunday there's a fresh reason not to go. Today I finally decided that with or without him I'm going to go try one out. And guess what? We didn't finish signing papers at the car dealership for the kids new car, so we have to go back this morning, and that appointment can't be moved!

I work outside the home full time, I have a big family that stays in touch, and I have friends on social media. I had no idea it was possible to feel this lonely surrounded by people. Does anyone else feel this way?

By mylove On 2013.08.25 10:22
I should mention that this isn't a case of 'no one will come around because we have Parkinson's' either. We do go see family fairly often and everyone still includes us. This is more like a lack of meaningful relationships or meaningful interaction on my part outside of with my spouse. Is this just me? And how do you fix that?

By lurkingforacure On 2013.08.25 16:24
It's not you, and yep, we all feel it. But, you need to just go, by yourself if you must. This summer I made the painful realization that life goes on outside of the PD house, and I can't let PD dominate our kid's lives any longer. So I have been taking them places I would never have gone without my husband. It was very painful, I cried much before, during, and after, but they deserve as happy a childhood as we can give them and sometimes (more often than not, it seems) daddy may not always be able to go. It sucks, but I don't want their childhood to consist of sitting around the house.

I have read that you can have a million friends on facebook, but still not feel emotionally fact, on the radio just the other day, they were saying that facebook and sites like that can actually depress us! Go figure. Perhaps we need to see each other, physically, to really get that nurturing that we need. Getting out of the house and even just talking to the mailman can be emotionally gratifying, as incredible as that may seem:)

By jcoff012 On 2013.08.25 18:28
Michelle, I wish I could give you a hug and let you know you are NOT alone...Let me share something I have a never told anyone, but maybe it is time...and, maybe then the folks here will understand how we face PD.

When Carl was dx four years ago, he went to the neuro by himself and he called me while he faced it alone..Why? Because we had made a commitment to our daughter to be caregivers for our then four month old grandson, and, Carl, being the consummate Dad/Grandpa made the decision that I NEEDED to keep our lives as we planned, him 300 miles to the north, working and putting that house up for, taking care of Nigel, our grandson...This was extremely difficult for both of us because he had work commitments and couldn't drive down to see us for a week after dx...This was in February, and it wasn't until September of the FOLLOWING year that we were able to move in together here in Cloverdale. We talked every night and he came down or I drove up twice a month...but it was hard...I had no friends in Santa Rosa and I was still under doctor supervision for the cancer.
But, that is how we handle things...head on...We try to remain as "normal" as possible, making adjustments as we go.

Now, did I feel as you do? Sure...many times. But, we have decided that we need to keep our lives going separately, as well as together. I walk daily now and DO NOT walk with him...that is my alone time...then, he walks...neither of us ask where the other goes, so that we remain able to make our own life choice...the "deal" is that if one of us isn't home in a half hour, the other goes looking!

Another thing we do is go to our monthly PD is 40 minutes away, but we go. I am far more sociable than he, but after the first meeting, we haven't missed one...HIS decision.
See if you have a countywide meeting...we alive in a tiny town, so we don't have a local one.

Also, are there things he can do to help you? Even if he's messy or doesn't get things done everyday...chores maybe? Some men have a hard time retiring...So did I...I retired at 52...I stayed on a schedule, maybe that would sure he gets up when you get up, eat breakfast together, chat...make it a habit...sounds like he needs something to occupy his mind...a hobby maybe? Carl had to scale down his workshop...he had the entire three car garage up north...but, with some prodding, he has made lots of stuff for our adult kids and their kids...

Just some suggestions, but NOT give in to PD...DO NOT be ruled by it...YOU are important and so are YOUR needs. Being fulfilled yourself does not mean you are less to your husband...instead, it invigorates you and makes you a happier person...and HE will benefit. Many, many hugs...Jane

PS...I went to 13 school before graduating high IS hard to meet new people and make new friends...but, put yourselves out is SO worth it!

By mylove On 2013.08.25 18:54
Thanks, guys. I needed that. I just finally got a moment to myself after a long day at the car dealership. Three hours yesterday and three today, but hopefully the deal is done. He and our son have gone off to go pick up the car together, and I finally have a moment's peace. I had to work half a day yesterday plus the car thing, and the car thing ate this morning as well, so I'm feeling a little bit like I haven't had much of a weekend over my weekend. And next weekend will be eaten up driving six hours to another state to see the new grandbaby. All good positive reasons, but again - no time for me. I do pretty well for awhile but I do get frustrated. I'd like to not put my own needs so far down the priority list, but when the other people in your life can't schedule their needs, you're pretty much committed. But moms everywhere know how that goes!

Ben's retirement is still a bit of a conundrum. He's got hobbies, but they are more large-scale than he can do in this little house! We've compromised in that he's found a little lathe that he got from a friend, and he's been learning to turn wood on it. It's not building furniture, like we were doing, but it's still working with his hands and making beautiful things. He's already making some amazing little urns. (Anyone need to cremate a dog?) ;) Still, he's lonely and so am I.

This morning we searched through Meetup to see if there were any groups we could hook up with. There may be a few possibilities. The irony is that there are far more options for women than there are for men, or for couples. I can find handfuls of groups that would be appropriate for me, but it would be really nice, as he and I talked about this morning, to just find a small group of couples who might like to get together and play games, have a few sodas/drinks, or do things with. Anything to build our social life outside these four walls.

Sooner or later defaulting to watching TV or going on a short drive will be all we can manage. It's my feeling that while we still can do things, that we do them. We don't need to do a five mile hike, but I feel like we could get satisfaction out of a five minute walk.

Being fulfilled - that's the nail on the head. And that seems to be what's missing. Now that he doesn't work any more, there needs to be a reason to get up in the morning. And ditto for me. Sorry this is so long and disjointed. I have two dogs and a cat on my lap that ALSO are feeling neglected, so I'm still somewhat scattered! :)

By jcoff012 On 2013.08.25 19:19
Michelle...just a few ideas to meet about the Y? Area on Aging? The library often has a bulletin board of events, etc. Does your city have a website...that's a good resource...(example...I was just this week asked if Carl and I would consider helping make and paint figures to be used in the city Christmas pageant)...or, ask your hairstylist, they know everyone! Jane

By jcoff012 On 2013.08.25 19:23
Carl just suggested that Ben check out the bulletin boards at the grocery AND lumberyard, Home Depot, Lowe's...:0

By mylove On 2013.08.25 19:47
This is bad, and I hate to even mention it but it's a cautionary tale. He did try volunteering in his field. It was one of the first things he did when we got here. He's a skilled cartographer that worked for years in a municipal government setting doing all their maps, including for the fire and police depts, emergency services, planning and utility departments. It's a very intellectual and exacting program, and it's all done on a computer at a desk.

He'd done some work for our local fire dept before we relocated, so he went to the fire dept in the city to which we moved to ask if they had a volunteer opening for him. The fire chief was very excited, and wanted him to come in a couple of hours a week and help them out with their program. It's all computer work. They had him fill out volunteer papers, and then the head office sent him to have a physical, because they said it was their policy for everyone including volunteers. They were aware that he was only going to be doing office work (not firefighter work) and he was up front about his disability.

Long story short, he took the physical, and about two weeks later they send him a message that his services weren't welcome. It said that he 'couldn't be left alone and unsupervised in an enclosed area' due to his physical condition. Really? Like, they have offices with no doors and windows? He was extremely hurt and discouraged. Both the doctor at the occupational medicine clinic that did his physical (who said "Why in the world are we doing this for a desk job?") and the fire chief, who really wanted him there agreed that it was stupid, but that's what their HR department came up with. So his desire to volunteer anywhere took a setback. I felt so bad for him, and I still don't think that's either legal or right, but he doesn't want to press it. What a slap.

Edited to add: That's not to say he shouldn't get up and try something different! All good ideas, and I thank you all!

By ysracer On 2013.08.26 10:54
I feel the same as you at times also. I think it is actually depression. Although it expected that the PWP will be depressed, I don't know that people realize the caregiver can get depressed as well. So much attention is given to the PWP and their needs, I think the caregiver is often overlooked. That explains, at least to me, the feeling of being alone in a crowd. You, (I), don't feel anyone else understands how you feel, or what you are going through and that makes you feel alone.
Yes we can go online, post on forums, get some encouragement from unknown faceless people that are going through similar situations. But it's not the same as meeting and talking face to face and getting an occasional Hug.
So we deal with it in our solitude.
At least that's my take on it.

Funny thing I read in this post, is the grandson named Nigel. Not a common name here in the states. I hope he does not go through life having it mis-pronounced like I did most of my life.

By jcoff012 On 2013.08.26 11:25
Nigel is not the name I would have picked for our only grandson, but it fits him! He is unique (from a grandma's point of view!) lol

By mylove On 2013.09.07 11:26
It's me again. Argh. While I am happy about, and encourage, the hobbies that keep him occupied during the day so that he can more easily make the transition into retirement, is there a good way to interrupt that at some point during the evening so that we at least get an hour or so to interact for the day? I spent one more lonely night last night waiting fruitlessly for him to come in after he'd promised three times he was on his way. After eleven pm he finally did....he came in and went to bed without a word to me! And yes - I know he gets occupied. And yes - I know he loses track of time. But he's not so cognitively impaired that he doesn't know I'm still sitting there in the room. How do I fetch him from what's obviously a way more fun place to come see me? The net result of being so lonely and depressed and isolated is that I'm becoming not so fun, which I'm sure makes matters worse. I'm working hard on that. But I miss him.

By umajane On 2013.09.07 22:33
I really miss socializing too but have decided to take care of me so that I won't be grouchy with my husband. I have met a group of ladies at water aerobics, I babysit, love to see plays.
I garden and cook and get occasional massages for me.
My DH walks the dog and watches lots of TV. I Have planned one trip with him and one without. I am trying to stay happy, positive and stimulated so I won't lose a sense of the real
me. Also getting some counseling.
It's so sad but we have to make the best of it. The worst for me is that I am SO tired. I wish everyone the best.

By jcoff012 On 2013.09.08 00:40
Michelle, just a quick note to let you know I heard you...I fully understand...Carl spent last night til 11 in the garage with Eric and today from 8 AM-9 PM, except for lunch and dinner, in the garage with Eric...He is teaching him how to make a full length mirror for Amy for their anniversary! When he gets involved, I don't see him, either...but I learned a long time ago to be proud of what he does/still does with his is a talent few have...and it requires patience and skill beyond most...with or without PD. After 47 years of his woodworking, I have learned that it is up to me to make the best of it...It is a passion and a love for him.

So, I watch the clock and go out to the garage every half hour to 45 minutes to take him/them a drink, see what they are doing, just chat...then, I come back in and do what I like to do...I paint, draw, cook, work on the computer, etc...

He used to do the same with me when i worked on THE READ IN! He would pull up a chair beside me and talk or sometimes, just sit and read beside me. It's hard to "miss" someone if they are close by.

I guess what I am saying is that in life we all need to set priorities...and *our* (yours and mine) needs are a priority. As always, Carl is my first priority. I am not saying that his needs are more important than mine. What I am saying that if *I* want to be near him, and he is involved in a project, then I make it my priority to go where he is...I also expect him to do what he loves, so I plan ahead...Today, Nigel and Amy and I went to the grocery to get the fixin's for my WWs strawberry shortcake, then I had Eric and Carl stop to help make them and we sat together and had a snack...then, we all cleaned up and went our separate

I guess what I am saying is, life is too short and I figure that if my PWP can find something he loves and can still do, I want him to do it as long as he can...I look into the future and know that somewhere in his mind and in our daughter's home will be a part of him and for me, that is comforting...

Ben does such beautiful turnings, proud of them and him...he is very talented...give him a hug from me...I do wish we lived closer so I could hug you, too, and let you know that you aren't alone in this fight...just don't give in to it! Hugs, Jane

By carman96 On 2013.09.08 12:52
I can certainly relate to feeling isolated because we live where we have no neighbors close by. I go to exercise, weight watchers, master gardeners so I have friends there it we really have no couples friends anymore. My husband doesn't get out too much except for Dr. Appointments.
You are lucky your husbands can still go out and do things in their shops. Even if my husband could do that, I wouldn't trust him out there by himself.

By olpilot On 2013.09.08 22:42
I'd like tl say something from the other side, I get involved in my woodworking projects and time for me just passes at an unbelievable rate. The feel of accomplishment is I think very healthy. One other tbing, maybe a little simplistic but, I spend all day alone, my woodworking and the dogs are my daily life. As important as communication and time together are , rationally the fact is I sometimes feel a bit isolated, and knowing that it isn't what she is doing intentionally I do the childish thing and react. I don't know that anyone else does this but..... I love my wife and.don't want to hurt her, but I am not perfect, I get goofy or what ever. I can't blame pd for it, I think it's just a human thing. When we moved here for a longtime my wife wanted to find a new church, I put off anyway I could, she.Finally gave up and went alone. I am not a church goer. That was long before pd. Sometimes a dodge is just a dodge.....8)

By LOHENGR1N On 2013.09.09 00:18
Just a butt in for a moment. Steve has hit upon something which has me thinking. I don't know if it has some, thing to do with Parkinson's or not but...well it has me wondering.

"I get involved in my woodworking projects and time for me just passes at an unbelievable rate."

I thought this was just a quirk I had until I read his posting, I can sit down to answer a question here and type a paragraph or two finish and it has taken me over an hour! Now I know I move slower and type slower, commit typos to be corrected but so much time consumed? Is it because I want to make sure it is coherent and makes sense? Like Steve mentioned the feeling of accomplishment? I don't woodwork. But I spent my working life doing metal fabrication and welding working from blue prints to make parts then put them together according to the plans. I did some odd carpentry along the way also. I understand the concepts. So in the woodworking hobbies and puttering around in the shop or even transferring it to typing answers do We run it through our minds more often? A kind of measure it 4 times and cut once to be sure we've got it right thing and that takes up time we're not even conscious of passing? I don't know.

Maybe poking your head in and saying if you can take a break or finish tomorrow there's a good movie on or even (for the woodworkers here, hey I'm feeling neglected and you're starting to sand across my grain! (note to non woodworkers, one always sands with the grain of the wood if you don't you ruin the finish) ). Just a thought, we might not realize the time we spend on a project.

By mylove On 2013.09.09 08:52
Not butting in at all, Al. i was hoping for your take. Thank you guys for the insight. I really do appreciate the POV from both sides.

I've been the biggest cheerleader for him getting out there in his shop. As you say,'s the sense of accomplishment and oddly enough, also the mental investment that's necessary in planning, calculating, designing, measuring, cutting, laminating, etc. that truly is the benefit....I believe it keeps the mental muscles sharp, and so does he. I really don't want to short circuit the process, because I think it's so valuable. I totally grasp the time passing before you know it phenomenon! It happens for me, too, when I'm involved in an intensely mental project.

I have tried the "frequent interruption with enticements of other things" game. But, he's not into TV or movies or anything happening inside the house, so when he does come in we don't know what to do with ourselves either. Symptoms of a larger problem. This rental house is so small that what we knew and what we did together no longer apply here.

I did run across a jigsaw puzzle at the store yesterday. We used to have a sunroom with a table we could set up the puzzle on, and he and I would work short stretches together on it. Good times! I think after our son leaves to go back to school that we may be able to co-opt the dinner table for it, and I'm hoping that space will be large enough. Just a suggestion to others- jigsaw puzzles seem to be the kind of precise, repetitive, mindful thing that appeals, plus there's the bonus that its a joint activity. There's no room for the rest of our loved hobbies which were joint activities, so we are limited. Unless you count canoodling. We are always up for canoodling, but there's only so much of that you can do! ;). (The value of canoodling: a post for another day! Lol)

The most valuable reminder for me is that if I want to see him I have to go to his territory. There's literally no room for two - his workspace is a path he's cleared about two feet side by six feet long between the boxes, but I was able to clear off and perch on my sons weight bench, and yesterday I went out to read the paper there. That used to be one of our daily rituals before our schedule was destroyed. After awhile he did come join me. It was as close to normal as it has been in over six months, and that was blessed. I still dislike it out there. It feels very claustrophobic and jumbled to me, but you all are right to say I have to go to him if I want him. He's worth it to me.

And Steve...for what it's worth? You were right on another count too. Sometimes a dodge IS a dodge. I found out that the night in question was because he was mad at me, so he did that one on purpose. An, the values of communication! Once we got the butthurt out of the way and could discuss it rationally, he was able to grasp that I was having an anxiety attack that night and had come for help, and I was able to hear that he'd never got that message and assumed I was just being a pain in the neck. Here's a piece of advice we concluded after that conversation - PWP and others alike, nobody likes to try to read minds. Many things can be avoided entirely with honest communication. That also includes being receptive enough to hear what the other person is saying. I think even the closest couples in the world have to work on that continually. It's even harder for PD couples, who have to work around a disease that disrupts the process.

Thank you all again. Crisis averted and many lessons learned, as usual.

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