WELL I'VE DONE IT NOW

[Casey]

Yes I did it...and I am now waiting for the smoke to clear. My son..the middle child..he's 38...called on his drive home from work in Boston and we chit chatted for a few minutes when I said "Can I ask you a question?"...I could almost hear the wall go up, but I continued...I asked..."Have you ever looked up PD online to have some idea what I am going through?"...There was a few moments of silence and than he said "Well back when there was talk that this might be going on with you I did...but no I on't really know much about it". He didn't say exactly what year he did this but I have gone thru many changes since PD was first mentioned. I said that I thought that we might need a family sit down...all of us...to talk about this, but I haven'ty much faith in that happening. They...kids are 44...38...and 36 yrs old. ..just don' want to know. The conversation some how quickly turned to maybe I need a housekeeper or how about a companion to come in regularly...I have a companion his name is your father and he is having to deal with everything (I didn't say this outloud)!!! As I hung up the phone...he had to stop for gas...I all but knew I won't be hearing from him for a few days...or maybe longer...they don't want to know don't want to have to try to understand..and my heart hurts.

[Hidden]

I did every thing I could for my Mom and Dad. They were separated he lived about 200 miles away and Mom lived close to me.. I cooked and cleaned for her, ran errands or what ever she needed. Back then I also had a full time job and two sons to raise. I don't regret any of it. On weekends I would go check on Dad. He did not live alone but I liked to spoil him. He had PD. Now that I can no longer work and can not get around they don't come around me. They have a life and just too busy.. They will look back one day and regret the way they are doing me and so will your sons. I wish I still had my parents. Good luck and God bless.

Stanjo

[jillannf6]

hi stanjand casey

again this morning

i do nto have children ave psp and am glad for the 1st time in myi llfie that i do bot have clsoe family members to seeme gettign worse and ogingdownhill(my phrae)

i have a great carer comgin in daily ot help me and be my conp;naion and she could bemy daughter

but iam thankful she isnot as ometimes it cna be embarrassign having to ask fo rhelp

which i do not mind doing at all now

and if friends cananto do things for me then i pay someone

so i am psotitive even though my life ha s changed a lto in the last 4 yrs

lol Jill

[FeeBee]

That was so brave - your children are probably frightened of illness as many people are. I am sure you know how they feel too, but continue talking about things to them and they will start to feel more comfortable with it. My 2 stepdaughters arrive on Sat afternoon for their little visit without any idea of the horrendous nights my husband is having at the moment. The Dr put him on a patch to treat mild to medium dementia and next Monday at the Parkinsons specialist we shall see wht else he'll be put on. Sometimes I feel the kids are a bit of a nuisance in that they make things more difficult in a way, but you want them to send love and warmth over the airwaves at least. Chin up, as we say in UK

[CheriH]

Casey, I feel your pain. I was diagnosed last year and am fairly new at this. I have 2 grown sons (38 and 33 yrs old), and we don't talk about it. My youngest son did all the research in the beginning. This was good and bad. Good that he cared enough to try to help; but bad because now he has decided that he doesn't want me driving my granddaughters (his daughters) anywhere. He lives out of town and is about a 2 hour drive from my home. My husband or someone else has to drive or I can't pick them up. It was so hurtful to me. If I thought for one minute that I was a danger behind the wheel, I wouldn't dare drive...much less put my precious granddaughters in jeopardy. Now, when he asks how I am (and that isn't often), I respond that I am doing really well. Why? Because I don't want him to have another reason to keep me from seeing my granddaughters. My oldest son can't handle it. He becomes very emotional. So it is like the white elephant in the room that everyone ignores. I'm struggling, and the only person who really knows what I'm going through is my husband. My heart hurts too.

Good luck and God Bless You

Cheri

[CJ49 in reply to CheriH]

I hear you.........I also have two sons..35 and 37. The 35 yr. old is too busy with his young family and his job, and the older one is so religious, he's in denyl....says my PD will "vanish" if I have faith...

My faith does help keep me feeling apreciative for things I allways used to love...like a beautiful, sunny morning, or my favorite song.....I know it seems "trivial" but we have to try to be "upbeat".....this PD thing is for the "long-haul" and life is too short to concentrate on the negatives.

Sending only "good feelings" your way!..stay strong!

[lmbanni]

Casey, My heart goes out to you. I have a similar problem with my kids.... My hubby is the one who has PD but I wish my Kids would come over more often and give him and me a helping hand. He misses his kids very much still. Empty nest although the oldest has been gone for 7 years now! Our youngest married and left 4 years ago!!

I need a break once in a while but never get it... We suffer through together!! Just like you and your hubby.

My daughter is a nurse and my son is a disabled soldier. I understand they are both very busy and they both have a family but..... no time. They say they try to come by but it seems to us not very often. Yet they have time for friends, parties and other family obligations.... Both my children don't let me drive my grandkids anywhere and I'm not even sick!! I can't figure out that one at ALL!!! Guess they just don't like my driving!!!

Anyway.... we seem to have lots of children who don't want to help their parents... I almost always feel I am being paid back because I did the same to my parents. My sister took care of both of them much more than I did. I tried to do as much as I could... any way that's what my husband tells me.... I still felt I should have done more..... I've asked for forgiveness from Christ but I can't let it go....I am punishing myself I guess and now my kids are doing the same....guess the saying children learn by example is true. My husband says I have to stop thinking this way. He says he knows I did enough but I can't beleive him. Guess because my sister has not told me this and neither has my other sister. I guess I should ask them but I don't have the nerve to hear the answer. Sorry I have gone on and on.... this is your time to vent and I am not helping you here.... I feel for you but all we can do is keep moving forward. We have the choice to be sad and depressed or chose to be upbeat and do the best we can. Anyway that's what I read!!! LOL!! Sooooo let's be happy and the heck with the kids!!!! LOL!!! Let's just do it with our husbands and be happy!!! God Bless you both!!! Praying for you and all of us in this situation!!!

[PatV in reply to lmbanni]

I so identify! I am Buddhist and so believe in karma. I neglected my kids and so . .. But I'm not going to be defeated by this and I agree with you 100% I'm single now and I'm going to be HAPPY! With or without my kids. Much love and I am praying for us all.

[Casey in reply to PatV]

I like your positve thinking!!!!!!

[Casey in reply to lmbanni]

Helping ones parents...I am hearing alot about that it seems lately. My mother who did not have PD but was ill in her later years till she passed two years ago at the age of 89...and I might add she and I were never close...she saw blue and I saw pink all of my life if you know what I mean..I would have done anything to help when she needed help if only because she was my mother & I did respect for her. My older sister took over and cut my younger sister & I out or all caring for and preparation after Mom passed. It is sad when family matters come to this. I would just so like some understand...a pinch of concern & afew hugs. Yes moving forward is what it is about!!! Thank you for sharing....

[Kat00]

I am sorry for your situation. As a 56 year old daughter of a Parent with PD, I can can guess at some of the reasons why your children are avoiding accepting and supporting you.

When I was younger, I felt that my parents were sort of immortal. I thought they would always be there..that they were superhuman.. As i matured, I began to see them more as people who have thoughts, feelings,needs and frailties just as I do.

It is scary to have to accept that things change`~that your parents grow old..that YOU are growing old.It is natural for your children to want to deny what is happening...and the odd thing about PD is that some days, you really don't seem too bad. They probably don't even know what a BAD day looks like for you.

Don't blame yourself for being a "bad" parent. Your children need to be willing to grow up enough to see that though you are their parents-- they also need to be your friends. What would they do to help one of their friends? Wouldn't they want to know what is going on and what they can do to help?

So rather then pull the "parent card" ..it is not about what they should or should not do..about obligation or guilt...

Try opening a conversation by saying, "I am calling you because I really need a friend today. I have come to know you as a smart and capable adult and I need your advice. Things are happening to me that scare me. Could we have coffee?"

I am grateful that I have a close loving,sharing relationship with my parents, but it wouldn't have happened had they spent my adult life on the "Parent Pillar", never recognizing me as a capable adult.(Although at times, I still need them to be "Daddy and Mommy")

Sorry to be so long winded..I hope this helps you understand...wishing you much love and happiness.

[PatV in reply to Kat00]

My daughter told me when I asked her to be my companion on the PArkinson's walk preparation class "I don't want to be your 'caretaker', I want you to be my mom". She'll be 50 this year.

[Casey in reply to PatV]

Oh my I am not sure how to respond to this....are our children so afraid of ending up our caregivers...I didn't read that into your asking your daughter to be your companion on the PD walk...In't it strange the things some folks hear when we say one thing an they think of it as another...I'm curious...what did ou say in return....I wil always be Mom and that's that....Thank you so much for sharing...do keep in touch...

[PatV in reply to Casey]

She's going to go on the walk but not the class that's preparing us. But I found a friend who wants to walk who's willing to come to the class. The friend volunteered so problem solved! Having kids is like juggling hand grenades, with or without PD!

[Casey in reply to Kat00]

I so appreciate your response and have taken every word to heart. I have thought that my children have seen me as immortal or that I could handle whatever came my way. I grew up with my children marrying young & having them young...and I don't believe I have ever made it up on that parent pillar...Change is an issue...and time...everyone is so busy. I never want to be anyone's obligation bu the not taling an discussing what is going on has reached the point of deafening...we can talk about anything but PD and what Mom is going through. Thank yo so muc for sharing your houghts...

[srarndt]

Wow! Such poignant commentary! Thank you all for sharing this painful, private area of our lives.

You guys ROCK!

Steve (Bisbee, AZ)

[Casey]

SRARNDT HAS SAID IT RIGHT guys guys rock!!!! You have each in your own way given /shared with me a wealth of information and so very much to think about and I am going to do just that. I have come to the realization that I have to fin that "happy medium" that has to be out there...my safe place to go to in thought when I start worrying about everything. Thank ou so much PD Friends....(((HUGS))) Casey Southern NH

[moonswife]

Oh, tonight I so needed this topic to appear. My adult children are 40 and 4l. I empathize with all that has been written. My husband, all 6'5" of him, is declining and they are not quite in touch with the adaptations that need to take place as his life changes.

My middle of the night worries are "what about if something happens to me, the caregiver and caretaker of lives?" I keep the changes to the pill regimen updated weekly, but sometimes adjustments are PRN

At a birthday dinner Monday, I could see they just didn't SEE that they had fatigued their Dad with their last minute schedule changes, which threw off the meal schedule, which is driven by the pill schedule.

I guess I am just weary of those long sighs and rolling of the eyes indicating I am a control freak. About making HIS life as long and comfortable, I must be. What they did not see was the effect during the night that night, nor the fatigue the next day. Scary that they might end up the caregiver.

Late night musings, I guess. Thanks for the chance to vent.

[Casey in reply to moonswife]

Venting...that was venting....you have much to share and I for one enjoy hearing things from your prospectie...talking things through is such a help....I have learned so much from all of the folks here...thank you....

[moonswife in reply to Casey]

Thanks, Casey

[FeeBee in reply to moonswife]

Moonswife - I do empathise with you. My husband (who has PD) had a visit from his 2 daughters yesterday and again this morning as I had e-mailed them to say he had changed a lot. They had come up from the south of uk and had to stay at a B and B as nights are bad with him getting out of bed all the time and not being able to get back in without me. They were charming, chatty, bright but couldn't see how they wore him out, despite me telling them quite bluntly how our nights are, how he can't even go to the toilet by himself as he has a claw hand, etc etc. I know my husband brightened up to see them and I also know that tomorrow he will be so tired and it is the day of our visit to the specialist. I do feel, rather grudgingly, that it is better for them to come and wear him out than not come at all but wish I didn't have to ask them to come. Oh dear, we are ALL having a moan aren't we!

[shasha]

"Yesterday is history. Tomorrow is a mystery. And Today? Today is a gift. That's why we call it the present." - Babatunde Olatunji

sorty to be a little trite but it is true nonetheless and i think you are all amazing people - either with PD or as carers and i am so grateful to this site - each day it gives me encourgaement and hope -

thank you all xxx

[shasha]

"Yesterday is history. Tomorrow is a mystery. And Today? Today is a gift. That's why we call it the present." - Babatunde Olatunji

sorty to be a little trite but it is true nonetheless and i think you are all amazing people - either with PD or as carers and i am so grateful to this site - each day it gives me encourgaement and hope -

thank you all xxx

[Casey in reply to shasha]

This site is a true blessing.....

[Court]

What an assortment of wonderful, positive comments. My situation is that my husband tends to ignore the fact that I have Parkinsons, but will always help if I ask him to. My son, on the other hand cannot handle the fact that I have Parkinsons and gets very emotional if I try to talk to him about this. He is 37, married with one child and another due in July. I respect his response to my illness as I know he is scared of the future.

My daughter fusses round me and I find this hard to handle, though I know she means well. My two grandaughters aged 8 and nearly 4 have never commented on their nan's tremor. When I asked the older one about it, she said it was just part of me. Rather comforting, I thought.

I feel sorry if having Parkinsons causes a rift in the family. I care for both of my grandaughters on a regular basis and no one has ever suggested that I am not capable of doing this. I will continue to look after them for as long as I am able, but would never put them at risk. I am also expecting to play a role in my new grandson's life. He is due in July. Exciting times ahead and a reason to fight this demon called Parkinsons.

[Casey in reply to Court]

Thank you for your words of kindness...grandkids are certainly a blessing!!!! When our granddaughter was younger...she is 8 now...she asked about my shaking and I would just smile and say "I am just so happy to be here with you"...Much happiness with those sweet babies...

[wifeofparky]

I have been a caregiver for someone in my family for over 20 years. First my Mom and then my Dad, then my inlaws and now my husband. He has his good says and his bad, as you are all aware of. I walk a fine line wanting to help him more but holding back because he is fighting to maintain his independence. He will ask for help when he gets frustrated enough but the dog and I must listen to his vents while he struggles. When his mother made demands of him in her last few years I warned her that if he has a stroke or heart attack because of her behavior, I never thought he would be diagnosed with Parkinsons. We thought he was stressed out and just needed a break. The last year has been difficult as his dementia has developed and causes us all much concern. I thankfully have a daughter nearby who helps and understands how quickly he tires. My son gives me support and helps out whenever he comes home to visit. This year he plans to build us a shed. I am glad we moved to this house because he would have never been able to safely navigate all those steps any more. Our extended family calls and visits with him and I am glad we have such strong ties. I don't think I could do this without my cheerleaders. To all of us, PD people and caregivers I offer up a prayer.

[Casey in reply to wifeofparky]

Thank you so much for sharing what you have experienced...oh I know the good days & bad days adventure....We moved to this house eleven years ago to eliminate stairs I have to think about so much when we go out i.e. stairs...getting in..getting out...bathroom facilities...so much that was often taken for granted before....

[RoDias]

I am so sorry for what you are going through. I went through the same thing with my husband's daughter and son. Their dad was diagnosed four years ago. At that time, they were 19 &18. They ansolutely refused to talk about it. As time progressed and their father's symptoms progressed, they still refused to acknowledge I needed help. Elena, the youngest, is away at college, so I understand that she only sees the changes when she comes home. Brad lives with us, works and goes to college. FINALLY, within the past year they acknowleged what was going on with their dad. Elena calls regularly to check on him and Brad helps around the house. I saw the pain in Brad's eyes when he had to help me get his father up after a fall. The National Parkinson's Foundation has free booklets that explain various things famlies need to know. Please go to their website and order books for each family member including yourself. Brad recently did a paper on Parkinson's for one of his classes. He used his firsthand knowledge plus the booklets. He got an A+.

[Casey in reply to RoDias]

Our children are all near by...the furthest is maybe an our drive ut we don't all get together very often...and in the past couple of years when we have called we get alot f We're busy with such and such...etc. which is yes understandable but I often hang up the phone feeling like the bad child....I have learned so much from the post I have received here and how oter families are dealing with much the same....It is a blessing...

[RoDias in reply to Casey]

I have read the posts and I'm amazed at how many family members are in denial about Parkinson's. It is not contagious, but you can be at risk for getting PD. It used to hurt me when they said they didn't want to hear about his problems. I don't blame my stepchildren for not acknowledging their father's condition. It's hard to understand that the big, strong man who was always there for you is not as strong or capable as he was before. I am glad that they have now come to the realization that he has a disease that at this time is curable. Stay strong for your husband and order those free booklets from the National Parkinson's Foundation.

[Owenbob]

WOW! What an assortment of stories. My kids are 51, 48, and 45. 51 Year old lives in California, 48 year old in Wisconsin, and son, 45 lives in England, and I live in Maine, so don't get to see them often. Have wonderful partner sho is understanding and such a big help.

[Casey in reply to Owenbob]

I too have a wonderful partner of 41 yrs of marriage but I worry about him at the same time as we are trying to handle this together I can see it wering on him...and at times he needs support & to know that there is help available....

[DrDan]

My daughter is 36, happily married with 3 grandsons. We always have a wonderful time when we're together (they live 2,000 miles away) but she's in denial. Doesn't say much more than, " How are you". Then we talk about EVERYTHING BUT PD.

[Casey in reply to DrDan]

Dr Dan I know what you mean with the "How are you" comment from a child knowing in your heart they really don't want to talk about it more than knowing that you are okay at the moment. I don't want to burden my children but at the same time some understand would be so very helpful especially on the days when I feel so..."What am I going to do next" that luckily are few & far between right now. You sound like a very positive person!!!! Everything but PD...I read your words there tree times over...that's exactly it!!!

[SandyRose]

My Dad is taking care of Mom with PD. I live in the area, and I see how tired he is. My heart goes out to both you and her, plus both of the men involved. I do the research online for them. I check the meds. It is difficult to face. I've cried when Mom has a bad day, or Dad hasn't slept for nights. I praise Mom when she has a good day or does something to surprise me. My Mom wishes she could be there for her granddaughter as she was for me. I remind her: "You taught me so much over the years. Now, I'm teaching her. You're still a big part of her life!" I can understand how it hurts not to talk with your child about this, plus not being able to do what you want for that child. I still feel like a small child in this adult. I still want my Mom to be healthy, and it's difficult to see the changes. It's difficult for her and us. I love my Mom. I know I don't do everything right. But I try hard. They (Your Children) will come around. It's a very nervous and scary time for you, their dad and them. I know how it feels.

[Casey in reply to SandyRose]

Thank you so much for your kind words...I raised fantastic kids...I know that and I understand them being busy with their own lives now...I hope that I don't come across as selfish or demanding...I don't think that I am...this is such a learning experience for everyone involved...

[SandyRose]

Learning is the key word! Maybe one of the Michael J. Fox books could help. He was so popular in TV and movies. His books are wonderful as well for information from a personal perspective.