I ama 62 yr old female...married to the same wonderful man for almost 41 yrs now (bless his heart) we have three grown children who are out there on their own doing their thing now...so it's the hubby & I... oh & not to be forgotten our "new Baby" PROBEE a Japanese Chin dog. I was diagnosed with PD on 12/22/2005...yeah you tend to remember the date after alot of dr's opinions & medical run arounds. Some might think after six yrs plus I would have a handle on this but sad to say I don't. My children don't want or try to understand what is going on with me, that I can't do many of the things that I use to do...that Mom isn't the same & they have left 99% of what goes on up to their father...It is like he & I against the world now. Invites to dinner are difficult when the son lives on the second floor of an old house...I can't do the stairs...getting out & about is often an issue & well the list goes on. It's not something that I dwell on nor want a pity party over but I would like the kids to understand that thing have changed...continue to change...and I would like them to be a little more considerate of their Dad who is trying to handle everything day to day & is having his difficult moments. When I have tried to discuss this with the hubby he tells me that the kids are grown & on their own and don't owe us anything (owe is his word) and have no responsibility for dealing with our issues. How do others feel about such a situation? I would appreciate any & all opinions...The hubby is still working & I am home alone most of the time...and yes the emotions kick in...I tell myself if the kids hve difficulty seeing how things have changed they should talk with me...and too for just a moment try to understand from the inside looking out...
UNDERSTANDING...: I ama 62 yr old female... - Cure Parkinson's
UNDERSTANDING...
Hi CASEY
i was married for 33 years butno children
then divorced
and i have no close relations nearm me
i have PSP and for the 1st item i am glad tha ti do nto have children to wathc my decline
it is a v frustrating illness to live with -plz loook at my original blog -and pARKINSONS is no different in that
but i am upbeat as it explainsso manyh of my health problems recentyears
SO hang on inthere and plz keep blogggin on hte site
lol JIll
Thank you Jill for your reply...I appreciate you words and kindness. I look forward to reading your blog and hope that we can share here...and as for no close relations Jill...you have a new friend right ere!!!! Casey
THANKS CASEY
I DO HAVE SO MANY LINKS ON THIS AND THE PSP SITE
IT HAS BEEN A GREAT EDXPERIENCE FOR ME
LOL jiLL :
I have to tell you I hadn ot heard of PCP and went online to read about it. There is so much going on with folks...symptoms and such you have to wonder how many folks are having issues and hav no ide what is going on with tem...I know I thought many tings going on with me were due to getting older...thank you fr opening my eyes to something se...the PCP that is going on...ya learn something new everydy.
Casey, I hear you & I know where you're coming from but I agree with your husband. We give birth to our offspring & try to give them the love & support they need to build their own lives. Then they (hopefully) fly from the nest & live the lives we have helped to form. I would expect the responses to this post to split 50:50 as my husband of 40yrs & I are having the same debate about one of our sons over a different issue. He thinks son should be 'grateful', son says he didn't ask to be born & I don't think that love requires thanks or reciprocation but it would tbe great o get both!! (I have been dxd PD 8 yrs, age 63).
Oh I know the response to this "thought" is 50/50 and I can see both sides of it truly I do...I think I have often gotten lost in the thought & wonder of the close knit family like so often portray'd on tv "Brothers & Sisters" and such...being there for one another...in time of need...a Mom can dream can't she <insert devilish grin here> . My children have implied if I just get up & do I will be fine...and the "let's not discuss it & t won't bean issue" has been the M/O. My husband excuses things with "They don't want to accept that things have changed" and feels sorry for the kids having to deal with it...while their friends < our large extended family > have been more understanding & yes helpful if just with a phone call to see how things are & if I need anything.
My daughters would be more helpful...if they could. So far I have not given then a realistic view of my illness. One daughter lives 5 hrs away, another in another country. The one closest to me would do about anything for me, her children are older and she has more time. Her husband is bipolar, so she understands disabilities.
I feel I raised them to be independent of me and succeeded. It was very difficult to let them go, when they went off to college, but am glad they are happy with their life.
Just continue to reach out to them and try to help them understand, as best you/they can. I didn't really realize anything about PD until I had it. I'm still learning.
Praying things will begin to change and your husband will get some help.
Thank you for your kind words and understanding. We raised our three children to be independent & successful and we are proud of each of them...I hope that I dont sound like I want or need to be treated like a pampered princess...it's not the case...I have always been an independent person myself and the new adjustments < with PD > are teaching me that I need to maintain that independence as much as I can...it's those moments when I start to doubt tomorrow.. that a little understanding & support would be so very helpful and I don't think my children realize that I am not the same as I once was...
Mine don't either realize that I am slowing down...I haven't shared it with them, because I don't want to slow down.
I often feel like that "Little Train That Could" book... you know the "I think I can..I think I can" chugging up the hill < or the next hurdle for me > on the inside I believe that I can still do whatever when ever...till my body sys "Hey hold on a minute there girly" I don't want to slow down...not yet...hopefully not ever....:o)
hello - i am aged 65 and live with my 75 year old husband in deepest rural france so dont get to see my two sons often - but i do have my daughter here who lives part time with us and part time wuitg her dad hwo runs arestauarant here in france - the point of all this is to say that she does get very 'upset' and cross with me if she thinks i am not trying hard enough - to ewalk etc but i try and explain that there is nothing more in life i want than to be able to walk again - but she cant or wont see me as i am now - which i can understand - i am not the capable practicle mum i was annd there is nothing i can do about it - i wish to God there wsa a cure fir this dreadful illnesss - andbelieve that one day there will be one but whether it woill come in time tio make a difference tio us ~~~~???
Thank you for answering my post...hw wonderful to hear from you! I so understand your feelings about your daughter not understanding you problems with walking...and such now...Your words "There is nothing tat I can do about it" stung me like a bee...my children cannot understand that...with a just do it attitude...that many das and now more often than not I am unable to just do it! Prayers...lots of prayers and hope for a cur most definitely!!!! Take care and hope to hear from you again...
I understand a bit how you feel and it is not nice. My husband has PD and he has three daughters who all live and work in the South of England whilst we live in East Anglia. It is not that hard to e-mail, text, phone, or even travel to see him but hardly a peep since before Christmas. With his permission I e-mailed them to tell them that things had worsened and to give them credit, 2 of them are coming up next weekend but they have NO idea - they said - we could help you with dinner. They will be surprised that their Dad has a sandwich or something, drinks no alcohol and goes to bed about 8.00! I am having a moan because I don't like to say too much as they are his daughters, not mine. Keep positive! Fee
I think you hit the nail on the head when you sai you sent e-mails to tell that things have worsened...and that the daughter's will be surprised...My family has not sat down all together to discuss the changes that I am going through...we don't see our three children on a day to day bases with everyone being so busy but communication is so important. My husband who tries to do everything...he feels I am his responsibility would rather the kids not know exactly what is going on & that he can handle everything...but it is wearing him down and that upsets me...We must all keep positive for certain...thank you for replying....
I am like your husband and try to do everything. In the main, I succeed, with bought in help, but I want my family and his family to understand. I do not particularly expect them to DO anything, as you say they have their own lives and live away, but I was surprised to hear only one of them has thought to look up PD on the internet. Anyway, enough moaning for the moment - sun is shining and Mr Pigeon is desperately trying to catch Mrs Pigeon on our garden wall. Sooo funny to watch!
I hear you....I don't want others to feel that I want or epect them to do for me...if I have asked for anything it is for them to pay more attention to their Dad...meet for coffee...chat a little more..he needs some time not worrying about me. I don't know if our children have looked up PD to get an idea of what goes on...but I soooo love your positiv outlook and your humor...good luck to Mr Pigeon with his mrs. out there <smile> Stay on the sunny side!!!!!!
I have so appreciated the responses that I have received to my post of UNDERSTANDING...everyone has shared such special thoughts & given me insight to what others do experience with PD and I am going to take all of their sharing into consideration on dealing with my issue of understanding. Having this place to share & care is very special...I am so happy that I found it!!!
hi casey and all
despite not haaing childen of my own my mother was difficult in a different way.
my dad was her sole carer 4 many years and she would nto let him tell mj brother and myself how bad things were for her and more so fo rDad himself
when she finally died (14 years ago now) we realised that dad had had 2 shoulder all the illness and responisibilities of caring with only a disticit nurse coming in
(she had rheumatoid arthritis - and osteoporosis = had had had hear t attacks and strokes = all ocnnected)
so plz involve your children - the age has gone now of bearing burdens oneself ro atlleast i hope so in USA and UK
lol JIll
After finding this place to chat ( and again I thank you for your pos & sharing) I spoke to my hubby about the importance of communication when it comes to PD...and mentioned to him that we have never sat down with the family and said "This is what is going on..." and that maybe it is time that we should. I have learned so much reading post here in just the past day & knowing that others can relate to how I feel & or what I am going through does help. There is a wealth of information to be shared and learned from & I feel very positive being in touch with you and others here. Thank you for sharing the story of your father taking care of your mother...I can relate.... be sweet...casey
Oh I so recognise this dilemma with grown up children. My ex couldn't handle the situation and we were divorced a year after my diagnosis in 2003.I have been very busy and independent until recently when my health has gone rapidy down hill. My children live a couple of hours drive away and have full-on careers. My daughter feels very angry and says she will not accept the 'liability' (her words) that should be her father's - i.e. caring for me as I get iller. I completely understand and would never expect her to. My son is less explicit but still treats me as the lynch pin of the family who facilitates others' needs. A couple of weeks ago I was very unwell and had a fall which I could not get up from. Luckily a neighbour came in and when she realised I was alone she looked after me for a couple of days - coming round every hour, bringing me drinks, liaising with the Dr etc. I was so grateful to her but also felt terribly embarassed that my family were not here in a 'crisis' and that I hadto rely on her kindness. My daughter's response was to tell me to call social services if I couldnt cope. My son's was that he wa sgoing on a few days break in Newcastle and couldn't come to see me for three weeks. I would never expect my children to sacrifice their lives or careers because of me but I confess I had hoped that in acrisis they might, at least make a few phone calls, even if only to each other, to try and arrange some support. I have to admit I feel terribly hurt and feel quite abandoned. My oldest friend - a frantically busy barrister who still made time to care for her elderly father- says the children have an obligation to look after me but I can't agree.On the other hand I can't imagine knowing that anyone, let alone a member of the family, was really ill and alone and not doing everything I could to help. Maybe I shouldn't have been so capable when they were younger?
Sorry to be judgemental but it sounds as if they take after their Dad. Friends can sometimes be more supportive than family as there is not so much "background". I feel very bad for you and I know a little (very little) of what you are feeling. My son who said he was coming to see us at Christmas had a better offer and said to me "after all, all we do is sit and look at each other". It took me a while to get over that - I haven;t forgotten it but it doesn't hurt any more. Be strong.
I battle this issue every day and have reached a fragile balance point. I live alone in NYC and was dx in 2004. Retired in 2007. Have 3 grown children. One has TBI on disability. I like to think we are caregivers to each other but she says no. She wants me to be her 'mom'. We get together once or twice a week and go to a PD exercise class. Her older sister is a good friend to me but frequently on the road. They both live close so I can invite myself over. My son lives out in country. I used to visit once a month but he had a meltdown. Better now. Now my fervent wish is that we be able to get together on a happy occasion not just a crisis (if then!). Then there's the discussion about when I'm going into assisted living! (Never?). Meanwhile my 91 yo mom is in Missouri with my cat hostage taking sister. We're all in same boat in a way. Saw a hilarious movie 'pieces of Alice'. Relating to family with illness. Check it out. Hang in!!! 
My husband has PD and we are blessed with two children who go out of their way to help. Our son lives in NC and we are in NY but he calls several times a week if only to listen and check on what is currently happening He comes to visit at least twice a year and stays with us. While here he does chores that my husband can no longer handle and are too difficout for me. Our daughter lives 10 minutes away and is my rock. In the beginning I didn't want to burden them with everything but I have learned to be open and keep them informed. Even if it is my daughter making me go shopping with her because she knows I need a break or their helping out like they did when I had my hip replaced, kowing they are there makes it a bit easier.
I hope your kids open their eyes and stop denying that you have a health issue and that if nothing else, they understand what you are dealing with.
You must have done something good, in this life or another. My kids are scattered across the US but we speak and Skye daily which is wonderful.
when I get home Monday I want to find my poem titled Understanding.
Sorry that your situation is so uncomfortable. My (big deal) suggestion find something that fuels your positivity. I began taking ceremics classes. The others are already grad school quality potters and I am in kindergarden, I could care less. My son asked if they were all getting pinch pot ashtrays for their birthdays? like I got when they were little
Shame on her I'm sure you told her how wonderful her attempts were!!
Oh heavens the granddaughter...well they do say "Out of the mouth of babes" <LOL> I love the ide of an art day....I am thinking of painting some small birdhouses for our yard as Spring approaches...though every time I mention an activity as such...the hubby runs out to buy the supplies and I never seem to get to the project....so maybe now I should plan a "First of Spring Yard Sale" of all the craft things and start over with all of the new ideas that I keep finding!!!!
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