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Topic HOW do you get family to accept PD??? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.08.27 11:56
I am on one hand livid and the other completely saddened by the fact that my husband's family simply refuses to understand his PD battle. They should...his Mom had it for 22 years and more...WHY don't they get it??

Yesterday, my sister in law by marriage called and said, "I want to warn you, the others are planning a big trip while you are here. I told them to WAIT til you get here and see how Carl feels after a 12 hour trip...They looked at me like I was nuts...Jane, you get here late Tuesday night; they want to drive three and a half hours to the beach...that next day!" This really upsets me...

HOW do you make them understand? WHY don't they have a clue? I love these people...I had three of them in our wedding; they are more brothers and sisters than BILs and SILs...BUT, if I tell them he is declining and in pain and his tremors are on both sides now...why do they not GET it? Our lives are NOT business as usual...Is it because he is big brother and always took care of them (and still does)?

Gotta throw in one more thing...My BiL was partially a caregiver for my MIL, in the last year...BUT my FIL was her real caregiver, even as he battled lung cancer! BUT, this BIL is the family PD expert...even though my husband does not manifest the same symptoms...I bristle when he tells everyone that he can "tell" by looking at recent photos how my husband feels, etc...I see a major problem coming up soon if I don't receive and accept some sage advice here.

Advice, please...remember, I love them and have usually GREAT communication...that is why this denial state is so bothersome...I DO NOT want to offend them or hurt them...Jane

By carman96 On 2013.08.28 08:42
Jane, I can't help you. My husbands siblings do the same thing. His brother planned a family trip to Tahoe then I found out they had no handicapped rooms and there are steps! The trip has been canceled since his sister is getting chemo forbladder cancer. Ofcourse we are allconcerned for her. She is doing well actually. But where is the concern for their big brother? Of course I shouldn't expec much from the brothers since they were barely around when their parents were alive.
I'll be interested to see what others say.

By jcoff012 On 2013.08.28 09:25
With all you have going on, thank you for responding..I spoke with the one BIL yesterday after Carl went to the doctor...Of course, he immediately started in with, "Mom did..." and "When Mom was like that..." I finally said, without acrimony, "No two people with PD are the same, you know." and I gave the phone to my husband. I am sorry about your sister, but remember, a dx of cancer is not an automatic death sentence anymore. I am a seven year survivor. Bless her heart for all she will have to endure, but I wish her hope and wellness...and her SIL ;) Jane

By mylove On 2013.08.28 09:47
I wish I had words of wisdom too, but even with our fabulously understanding family, we go through this. It's like since they don't live through the day to day challenges, they know it in their head but they don't really grasp the reality of it. There's a difference between understanding something in the abstract and experiencing it. I think the adult kids are still hurt that we were unable to participate in the two hour, walking cheese plant tour at Tillamook the day after we drove 6.5 hours to get to the vacation rental! And me with a dairy allergy and him exhausted from the trip...

Until we find better answers, (hug). I understand what you're going through. I guess we are destined to be the broken record playing an unpopular message.

By lurkingforacure On 2013.08.28 10:17
I don't know, but if it were me, I would be inclined to ask your neuro to write a letter perhaps explaining a bit about your husband's limitations? I find that because my husband puts on such a good face when he is around his family, they think that is how he is all the time-ha, I wish. But if I could provide them with something from his doctor, even if it were in the form of an FAQ, they might have a better understanding...

What seems to trip most people up is the unpredictableness of PD: they just don't get that planning is a waste of time, and that the PWP may be able to go out to eat one day, but be completely unable to leave the house the next. They seem to think that because he takes his meds every two hours, he is good to go! They do not realize that meds being taken, and even taken on time, do not guarantee function.

I also think people don't want to really face all of this, and accommodating someone with PD forces them to acknowledge the limitations PD puts on not only the person suffering with it, but everyone making plans and such is really just another form of denial. I don't know what you can do about that, just try to understand it.

By carman96 On 2013.08.28 12:23
Thanks Jane. My SIL is doing well. I must say she has the best attitude of anyone I've ever known that has cancer. She has a tumid on her bladder and has had to have external bags, which she calls cheech and Chong. They are hoping to restructure her bladder after the chemo. As a cancer survivor yourself you know how important a positive attitude is.
Thanks for all the replies. Today is another day and hubby is sleeping like a baby now. No fever this morning! .Hopefully I can catch up on laundry. I know many of you are going through a lot worse so thanks for listening.
Dan, when mymom had a stroke years ago my dad stepped up and did everything. Sounds like you are doing the same so good for you. You are a good man. We do have to laugh at things once in awhile though right??

By carman96 On 2013.08.28 12:26
Oops I responded to the wrong post! Meant to respond to the one about the bad night. Sorry if I confused anyone!

By jcoff012 On 2013.08.28 13:13
Carman, the fact that you are functioning at ALL is a gift today. Take care of each other...confusion is part of our daily lives, so why not here on the board? lolol

By dans316 On 2013.08.28 14:47
I know MJF is a controversial subject on here but I wonder if his show will do anything to explain the ups and downs of PD. Will his show deal with mundane things like a caregiver suddenly dealing with extra laundry or the downhill progression of a wife who used to be able to make the trip from a chair in the living room to the bed in the bedroom without any problem. Now although the distance is only about 20 feet, the trip can take her 10+ minutes and sometimes requires a wheel chair to complete it.

I posted once before about the idea of some type of training for PWP and their caregivers when diagnosis is first made like they do for diabetes. Maybe MJF could make some sort of DVD that would show the true face of this horrible disease. Maybe include tips for caregivers on how to safely help their patient to transfer to chairs, cars and even getting in and out of bed and how to cope with the utter helplessness many of us feel. Hey maybe even show us male caregivers how to put lipstick on our PWP, that looks like that may be the next thing I'll have to do for my wife:)


By jcoff012 On 2013.08.28 16:07
Dan, you know something? My Dad always told me if I want something done, don't just talk about it, ACT on it! Why don't we all get together either on here in a separate post, or through email, and draft and sign a letter directed TO him personally, to PAN, etc. and ASK for a DVD or something that addresses what WE need, what the PWP needs, etc. in the REAL world?I am game if others are...Jane

By parkinit On 2013.08.28 16:31
Jane -

Bless your heart trying to be the family moderator here.

Could you call them (whoever the leader is of "the plans") and say, "We are so looking forward to visiting you, but the drive will really make Carl stiff, so we will probably need to just have a peaceful day the next day to recuperate. We would love to catch up visiting with everyone during this time. I just want to give you a heads up of his current condition/state. I hope your plans can accommodate this?"

This will give them an opportunity to share their plans and you can perhaps suggest it the following day if this is doable for Carl or if not at all, you maybe can remind them that you have to be very flexible with plans because one cannot predict the ups and downs of PD.

It is easy to forget the disease when you don't live with it on a daily basis. I know I would want to forget the nastiness of this disease if possible. :)

Hang in there, Jane. Your heart is in the right place.

By olpilot On 2013.08.29 01:02
Wish I knew, my daughters live about 3 hours away, in the couple of years since diagnosis I almost never hear from them anymore. Until then we were quite close and talked frequently. One daughter is a nurse, and worked for a while.with mostly elderly patients.

Next month I will be come a great grandfather, seems to early but ... I am making a changing table/cabinet for my granddaughter, but my daughter expects me to "be there" on a moment's notice, and has been told I don't drive more than a couple of miles at a time and then only as a last resort.

Maybe they just don't believe, or listen, or are in some kind of denial. My wife works full time and can't just go at will,with her health issues she's used up her sick, vacation, and.personal time. It is so frustrating, kind of like being invisible. About the only.information I get anymore is from Facebook.

Your idea sounds interesting and needed, love to help anyway I can. Good luck

By jcoff012 On 2013.09.02 13:59
Here we go is two weeks from tomorrow and they are STILL making plans...I talked to the other SIL and told her I thought only giving us one day of jet lag was too much...she said, "It is ONLY a three hour drive to the beach house, you can relax when we get there." SO...I guess unless he is shaking all over and they simply cannot SEE how emaciated he is, it will have to be up to HIM to say no, wait a day...New wrinkle...they not only want to go the next day, but want to stay til the afternoon before we leave at 6 AM! So, we are supposed to drive back three hours, then wash and repack, visit with the rest of the family that cannot go, and then get up and fly 10 hours home...doing a not so slow burn...

I have NO idea where to go with this...grrrrrr

By dans316 On 2013.09.02 15:58

What a dilemma:( Wish I had some words of wisdom for you, would it insult them if you were to rent a car and travel to/from the beach on your own so you could leave when you are ready? That return trip sounds particularly nasty. If your flight is 6 AM, won't you have to be at the airport 2 hours early?
That is going to be one long day:(


By jcoff012 On 2013.09.02 17:13
That's my point in all of leave from Santa Rosa at 6 AM PT, we have to be up and ready by 3 to shower and load the car, etc...then to GET to NC, it is a 12 hour flight...because he scheduled it to have two layovers, thinking the breaks would enable him to eat, walk around, etc...Get INTO NC at 9 PM ET, then get the rental, drive to the hotel...Sleep and get up the next 1/2 hour to his brother's home....relatives in the morning, then they want to drive 3 hours to the beach in SC...then, to come home, even worse because it is a three-three and a half hour drive back, his other relatives will come over til probably ten or so that night, then we have to get up early and drive back to the car rental and the airport...ten hour trip back, then drive a half hour home....It makes me tired just writing all of this!

NOT to mention, there will be ten of us in the beach house and guess who will be expected to take care of everyone? BIL, no...2 SILs, no, three nieces and nephews, no...never have, don't expect it now....tons of dishes, cooking...ugh...

And, did I mention that we will have to be up at 5:45 the next morning to get Nigel??? Geez...this will be the first time since he was born that he and I will be separated longer than the time it takes to drive up north to see my doctor once a year...So, Carl will WANT to get him...although I see it as he will be worn out and guess who will be watching our grandson...

Sorry to anyone who is reading this and expecting the normal postings...but, to those of you who have yet to face this, this IS a real PD related problem...To those of you who have had to face this, I appreciate any sage wisdom....seriously...I told TWO of his sisters this isn't a good idea, that they have NO idea that their brother is NOT the same, but, we are back to square one...HELP! Jane l-(

By EachDay On 2013.09.02 19:12
You are right it all is an incredible lot to do and it only makes me feel tired reading about your trip! It does seem a lot is required of you to not only to help Carl get there but then to take care of everything at the beach house too. My PWP is now 16 years and I started long ago to just say "NO, I can't do that." No matter how good my PWP is when he meets relatives and it might seem that I'm shirking, this has always helped. I do feel guilty about it but I then I remember it is just my thoughts. They do get used to it all and eventually I do.

My other motto is I take home as many dirty clothes as possible! Just stuff them in the suitcase and once you are home again in your home territory, washing is much easier.

This is probably not the sage wisdom you seek but it has helped me. Saying no is the hardest part of it. I can no longer take care of others but my PWP.

By LOHENGR1N On 2013.09.02 19:25
I don't know how to get through to family either! It seems to me our siblings are the worse offenders. This might be a good place to get this off my chest as it has been bothering me for about 2 weeks now......One of my Nephews was starting radiation treatment at the VA up in Whiteriver Junction VT. His Mother my Sister told me he was borrowing her car to drive himself up and home (125 miles or so each way)! I said He can't do that! He won't be able to drive back (they told him to expect to be sick after the treatment.). I asked about his daughter? son-in-law? Wife? Well they have to work I was told. Well he can't go alone I repeated....then said I'll go if he can't get anyone else! She said okay I'll let him know you'll go with him and hung up!?!? This is the same Sister who 10 years ago I gave my car to because I quit driving as I didn't feel it was safe for me to drive anymore! I thought all night stunned at what had happened, the next day I went to My Nephews and his son was there, he doesn't have a license but said He'd go with his Dad. Then I asked my sister if there was a problem I didn't know about why She couldn't ride along and drive back? No I just don't like Vermont roads they are narrow and windy and I don't like driving on them she said! Then I said well your grandson is going with his father. She said I'll go he's not driving my car without a license! Because she didn't "like" the roads she was okay with her Son and I both not up to driving to risk it? We could have easily wrecked and been killed. Because She didn't like the roads? My Nephew's Son-in-law took off work and gave him a ride in the end but Family? This same sister lives less than 1/2 mile from me and maybe visits once a year? Then it's a I know it's around the time you nap but it was the only time I had? She's retired and lives alone. But it was the only time she had. Sorry to vent, this does nothing to help with your problem Jane, just to say I hear you and know where you're coming from just like the rest of Us here on the forum, guess if We had the answer we'd all have better social lives and relations with family.

By carman96 On 2013.09.04 15:58
Jane, I just can't even imagine taking the kind of trip you are talking about. I think maybe because you are such a strong person they expect a lot from you. I think you really have to learn to say no to some things. Maybe they don't or won't understand but you will both be so exhausted if you do everything they expect.
Good luck and be sure to save some energy for your trip to Maui!!

By parkinit On 2013.09.04 22:06
Carman has the wisest advice I've seen! Learn how to say no. I think I could take a lesson from that, too. One of my hubby's daughters apparently mentioned to him that she would like to have her 6 year old's birthday party at our home. They usually invite lots of relatives and have light snacks as well as the birthday cake. I bluntly told her next time I saw her (this past weekend) that her dad may not be up to it and even if he was, I didn't believe I would be up to caring for him and then trying to do a birthday party, too. Be honest. It isn't just the toll on the PWP but the caretaker as well!

By jcoff012 On 2013.09.04 23:13
Well, I was...and it remains to be seen if they listened. I called and flat out TOLD my one SIL that if we went, it would be at HIS pace...told the BIL that same scenario and told the one planning everything that he might not be up to it...I even sent a group message on Facebook which explained in detail what to expect/not expect. One SIL is silent, one agreed to wait and see, and the other said she expects us to have jetlag...lolol...Oh, well...I have warned, retold how I feel, tried to prepare them...

Then, today, I laid it all out to my husband...what they want to do, etc...He said ok, but I don't know how I will feel. Then, he went to the dentist today and said, "I have an appointment for my braces on Friday and we leave Tuesday (next week), AND my Requip will be full strength by then, who KNOWS how I am going to feel? I am afraid I think this is bad timing for me..." So, HE knows it, I know it...they all have been told...may not HAVE to say no....we'll see, right? Hugs, Jane

By carman96 On 2013.09.05 09:29
Al,you are right about if we knew the answers we'd have better social lives and relations with our families! It's hard to ask for help when they don't understand and haven't ever helped, and then to say no if they expect too much.

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