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Topic Is it easier to say, "He's fine"...? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.01.18 11:41
We just ended five days of sullen, withdrawn depression that almost drove me nuts! He was sitting in the dark, didn't open the blinds as he always does, and was just quiet and "sad". I am sure it was a form of depression.

So, after discussing this with our special PD mentor, I decided it would be ok to tell his brothers and sisters about this latest problem. The sisters were concerned and asked how he/I was doing, but one of the brothers called on Friday. Then, through a game of Words With Friends, he wrote, "It was great talking to him today. He was so upbeat and happy." It was like a slap in the face...Like I "made up" the symptoms for sympathy or something??? Anyone who knows me knows I am not one to dwell on the bad...

My it just easier on YOU to say, "Oh, he's fine..." than to tell the truth? MOST of the time, he is.

Do family members really NOT want to know how he/we are doing?

I am perplexed by this...I could use some insight, please. Thanks! Jane

By lurkingforacure On 2013.01.18 13:48
No, they mostly don't. Read through this forum and there are plenty of stories about this situation. It seems like people act like that because they do not want to be called on to help, plain and simple. If they can convince themselves that things are OK, they dont' have to worry about being asked to chip in, and, this is important, they are much less likely to feel guilty about living their fun, PD-free lives.

I have family like this, and I've often thought that it's like Scarlet O'Hara in Gone With the Wind: just ignore and pretend things are OK: meanwhile, PD is ravaging our loved one just like Atlanta was on fire but as long as they don't have to see it, hear about it, deal with it, it's all good. For them....although they do have to live with themselves and how they have treated others, which depending on the person could be a pretty big burden later on.

With family, I would just tell it like it is-why do otherwise? But with friends, I've found that if you want to keep that friend, it's best not to talk much, if at all, about PD. I've lost so many friends over PD (some of whom I mistakenly thought were some of my best ones!) and it's really sad, particularly when I know that if the situation were reversed, I would be there for those friends that have dumped me. Sad.

By LOHENGR1N On 2013.01.18 15:44
Good question Jane. Most of the time I just say I'm doing okay to any that ask. Frankly through experience I've found it's an automatic question and the answer really isn't wanted or listened to. It is almost used in a rhetorical sense as in "boy it was cold yesterday huh?" doesn't look for any answer back. I've also found that if I do start to answer eyes glaze over and ears turn off until I'm done talking as they're aren't listening and could care less, Like they feel obligated to ask the question but They'll be damned if they have to listen to the answer. Family members seem to make it worse when this happens, maybe because we expect more of them? An example, one of my sisters lives about 3/4's of a mile away and very seldom comes to see me, hardly even calls to see if I need anything at the store when she goes out. But on the rare occasion she does stop or call it is during the time I pass out for a nap in the afternoon. Now I used to think she forgot or wasn't paying attention when on those many times in the past I'd say between 1 and 3 I usually have a half hour nap. I said used to because she now announces I know it's time you generally nap BUT I was out and figured I'd stop/call anyway. Never any other time during the day but just at that time. What the heck? She used to tell others who asked how I was "He's doing okay considering" until I ran into a mutual friend in the store one day who told me She had asked my sister each time she saw her how I was and what she said. My reply was how would my sister know I haven't seen or talked to her in a couple of weeks....My sister doesn't say that any more as our friend I guess the last time she asked my sister also asked how long has it been since you saw him? But I digress, Jane I would ask in response to how is He/She doing? Do you really want to know? If they change the subject to the weather , well then they're doing okay is the answer they want. Thanks for putting up with my venting here Folks! Take care, best of luck and hang in there.

By jcoff012 On 2013.01.18 20:02
I appreciate the responses! I think I will take your advice...I don't think anyone really wants to know...I agree, it would upset THEIR lives...

As for my BIL...he is the self-proclaimed PD expert because he took care of my be honest, he DID, but so did my FIL until his cancer took HIS life...

Maybe, like I have said before, maybe only PD people can really understand the loneliness and hopelessness we sometimes feel; and how hard we try to put on a brave front so that no one knows how awful we really feel.

Don't get me wrong, I am by nature a caregiver and mother (of 4, now 3), and an optimist...I refuse to bottom out...I realize this is for the long haul, so I know I need to take a lot of this in stride...much too soon to be doom and gloom...

Example, and don't kill me DH, but this morning was a less than successful encounter (ahem)...something that rarely happens, even now...few complaints there!...

Anyhow, we both realized this wasn't working, so we spent the next half hour lying in bed, hugging...and it has been a great day today! Very warm and tender, nice lunch out, trip to Lowe's for a 'something' (drill press, I think! LOL), then home to repot the two plants he bought me to replace two of the three now dead poinsettias (still have one!)...He is tinkering in the garage and I am folding clothes and on here...

So, it surely is more "normal" around here and I love it. I just appreciate the advice for those times when things seem to be far, we have the joy that he bounces back eventually...and things improve...I will cherish days like today and remind myself that he is still "in there", I just have to know it and see it when I can...

Love you all and have a good weekend. Jane

And, Al, you don't vent often enough...I appreciate your input, but I have told you that! LOL

By lurkingforacure On 2013.01.18 21:42
Few things make me sadder than trying to imagine how it must feel to watch your friends and family slip away in selfishness when you are ill. I imagine it must be so very lonely and almost inconceivably scary. I watched my husband tonight standing in the kitchen, eating yet again, all alone, and it just broke my heart all over again. I wonder how many times a heart can break. Even though I am there for him and there is nothing I would not do for him, the sad reality is that he, like every other PWP, is alone on his journey. I don't know how he feels, I can do pathetically little to help him, and worst of all, am powerless to stop it. One of the most significant things we can do for our loved ones, I think, is to be there and love them, and let them know that they matter. Still, and despite the PD.

By jcoff012 On 2013.01.19 23:45
I had a two hour talk with my favorite SIL and told her how I felt earlier tahis weekq, and how upset I was with my BIL's comments and this is what she said..

"Jane, I always want to know how my brother is. Yes, PD is always in the back of all of our minds...there is some worry since first Mom, then Carl, has the dx...but we need to know. And, we all need to help you get through this.
So, John (her amazing husband) and I are flying back to see you. John can take Eric and him to a ball game in San Francisco and we can do whatever you want or need..a spa day? We will stay a week, so we can go places or stay home...Remember, taking Mom to the dr, etc. fell to me, so I know what it's like to eat, think, and breathe PD."

First, for everyone, I wish you had my wonderful doctor; then, second, I wish you all had the support of a wonderfully kind SIL like I do. I told her I didn't want to whine to the family...her comment? "Whining to people who love you truly is NOT's a plea for us to help. We live too far away, but you need to be gently held close, even if it's over the phone." Isn't that amazing?

After such an awful spell, it was a heartwarmingly wonderful way to end this week...and finding out that my little sister is coming out gives us both a lot to look forward to.she is, of course, HIS little sister, but she is mine, is wonderful! Jane

By parkinit On 2013.01.23 19:10
Jane -

What a wonderful SIL you have!

I tend to side with Al on this - people really don't want to know. My PWP sends out an "update" to many, many people rather than having them ask "How are you?" all the time. However, I wonder how many simply hit the "delete" key when they receive his update on constipation, down times, etc. It is easier for people to ignore than to engage. I guess it hurts most when it is family that treats you/us this way because they are SUPPOSED to care, aren't they? However, it appears, many times, they are the first to quickly slip away. I was actually told by one of my PWP's daughters how it affects THEM when they see their dad, so they choose to stay away more. SAD SAD SAD. He wants to see them and begs them to visit, but they don't, because it makes THEM feel sad and perhaps, makes them face their own possibility of getting this disease (it has tended to run in the family).

By tipplelady On 2013.01.27 14:32
Most people don't want to know! A few special ones do "bless them". My sil and brother came this weekend, to see my mom in the nursing home, stayed with us and while they couldn't be here alot, she did 3 loads of laundry, in the basement, tidied up the kitchen when we ate, and most important to me, she talked to me about things besides my hubby's illness. They can't come often but when they do, I feel like someone cares! I always tell her how my PD feels and she listens. I' not sure I would still be here if I hadn't found this site. Thank you all.

By jcoff012 On 2013.01.27 14:38
Tipple, it is wonderful that they came. Any respite is better than none.

You will find that there are many on here who are opinionated and outspoken. There are others who lurk...and then, there are others who post out of need or desperation.

I hope you manage well and take care of yourself. Be sure to be kind to yourself. You deserve a life that isn't always about PD.

Hugs, Jane

By chroop67 On 2013.01.27 15:01
I think that people would rather have limited info because then it limits their guilt and responsibility. I am youngest of 4 and have been the primary caregiver for my mom after dad passed and even though she is in care, I am still the only on that visits and calls. My eldest brother has been more involved than the others but it is EXTREMELY limited. I have tried to guide him gently to this and other sites so that he will gain more understanding of the disease but he chooses blindness. Last year I had a lengthy conversation about the reality of Mom's situation, he seemed to 'get it' but unfortunately not much has changed. When we talk he always says that he has spoken to mom and she sounded good. He only talks to her at most, once a week. By convincing himself that mom is fine he justifies his absence, I feel sad for him and my 2 other siblings that never visit because they are missing out. Although she is very changed, she is still our mom and their absences only add misery to her difficult situation. My cousin visited a year ago and commented that my mom is doing great, 'she hardly shakes at all!' Arghhhhh as if shaking was all there was to this disease!!! Willful ignorance is frustrating but we who do care will struggle on and in the end our loved ones with PD will be the benefactors. I care because I love her.

By carman96 On 2013.01.28 09:44
I think that at the times we are with the family members ( not often enough since we almost always drive the hour to two hour trip to see anyone) that he is lot more upbeat than he is at home. Most of them have seen the freezing stumbling etc But they are not there in the middle of the night when I have to help him get to the bathroom and/or change his depends. So if someone says he looks good or sounds good it might be because they haven't seen the worst or maybe he seems better than before. They don't know that he will spend most of the next day sleeping because of the fatigue of spending the day out.
For a long time I just said "he's okay". But since he started having all these back pain issues I have been actually telling people about it. I told someone it was a set back even though he got the shot and the pain is mostly gone. They couldn't understand. They don't know that anything that happens to the pwp can cause a set back. I also started telling people to get out of commiting to anything. I just tell them I don't know ahead of time if I will be there so don't count on me. It is what it is I guess.
As for brothers when my parents were alive and needed help it was always my sister and I. I have three brothers and they didn't visit often. Women are natural born caregivers I think.

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