anyother change coming in my world

just when i thought i was becoming a little more settled and happy to be with me and myself, my husband informs me that he will be retired come july 1. tthis news should be a blessing to me , having someone around to help me and to watch over the stupid things i do that i shouldn;t be, but instead this has put me into a complete panic mode. he is not real supportive of me, i am not sure if because it scares him, but he doens't take the time to try and understand the disease or if he is being his usual self and truly believes as he tells me, i choose to be this way.

when he is home there is no down time for me , he feels i should be able to keep up the same schedule and strenght that i did 8 years ago. hey i was rifht there when it came to putting roofs on, building decks, whatever he started i was the #1 helper. i can't sit on roofs any more , i can't climb laders, ( the one word i hate using in this world is can't, ) and i have said it twice in one sentence. i still do a lot and i am so blessed and lucky that i can but i don;t know if i am up to daily downings as to not doing enough etc

no one can change my situation, but i needed to put it in typing, i had to get it out of my head.

thanks all my parkie friends for understanding and letting me vent

24 Replies

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  • If given a choice why would anyone choose "to be this way"? Your husband needs to start to be more understanding and realize PD is not a choice, it is a disease. I am sure he is scared and being uninformed just compounds it. Maybe once he is retired and is home more he will see how PD affects you on a daily basis. Some people choose to ignore things that scare them and PD can be a scary disease. You need to make him understand that you have been his #1 helper for years and it is now his turn to be your #1 helper. I hope venting helped. Have a wonderful day!

  • thanks it alsways does thanks for the supp0rtt LynnBabb

  • i cant tell you how sorry i am that yiu have such a man in your life - i too find i am using the cant word more and more and i hate it too but it is a fact of life that PD does this to us - we do not want it too but it happens --- perhaps you can persuade him to take a look at this site - i see you can email it to people >>

    take care of yourself and i wish you akl the best

  • I just say "I don't do....anymore". Doesn't sound as negative, like I choose not to try to do something. My husband is retired also and hat es it when I do say I can't do something, slip once in a while. He tries to help me find other ways to do things and says "how about you try it this way?" and has other ideas I would have never thought of. Maybe you could give your husband the chore of finding the alternatives and if they don't work, he will be educated on what you can't do.

  • thank u i have read him blogs and shared questions and answers with him he didnt go any furher with it. i do have good spport from a couple dear friends but it is harder even for them when he s around

  • Some support groups have special sessions for caregivers and spouses. Maybe he'll go to one of them. Couple counseling for both of you could also help.

  • have tryed to get him to my support group but no go he has gone to a couple doc appt only to tell me i beg for the tests because son't want to accept that i am okay

  • Hi Blackcat,

    I am soooo sorry to hear what you say your husband says and expects from you. You say he is retiring and that shows he is getting older. Maybe he has never been sick before and does not understand what it feels like. But he surely will as he ages and he will then need your understanding and want your help. My husband says he is a firm beleiver in "what goes around comes around". He says he has seen it sooo many times in his life. This will also be the case for your husband....... I would ask him if he beleives in that also. If he does maybe it will get him to thinking twice about how he treats you from now on. Talk to him again about what you feel and what you can do and can't. Tell him how you hate that word, can't, and that you have to use it now. If none of this makes him change then maybe you need to hit him in his groin when he is asleep and tell him he is making toooo much of the pain!!! Nothing can hurt that bad!!! LOL!!! Of course say it was an accident and that he must just want attention because nothing could hurt that bad!!!! ...Tell him his own words!! That he doesn't want to accept that he is OK!!! LOL!!!

    Sorry for my mean answer but it just makes me angry he says these things to you. Who on earth would choose to be this way!!! Some people believe in that mind over matter and illness thing but he still needs to be supportive for you!!! What he believes is not important!! It is what you feel and need from him that is important!! Have you asked him for his help and understanding? You can't take that kind of pressure every day it is only going to make your symptoms worse and feel worse. If he does not change you are just going to have to ignore him..,. as hard as that is going to be....

    God Bless you and I'll pray for you and his understanding. :-)

  • I JUST LOVE YOU AND YOUR ATTITUDE TO THE OLD MAN - I AGREE THAT WHAT GOES ARUND COMES AROUND TOO - BUT MAYBE HE WILL INDEED CHANGE HIS MIND WHEN HE IS WITH YOU 24/7 I DOO HOPE SO

    XXX

  • Thanks Shasha!!! :-)

  • Imbanni omg my sides hurt from laughing your outlook is awesome and believe it or not a lot like mine when i am helping other mode thank u thank u thanku

    i have been bleseed with much good advice and support thru this group but u have hit the nail on the head thank u for your prays and support i know we willl be in touch

  • Hi Blackcat!! Im so happy you laughed at my post!! Laughter is a wonderful remedy!! :-) I'll look forward to be in touch and hear how you are doing with your new situation with having hubby around all the time. :-)

  • I realise there are many things we can't do which we did.

    However, perhaps finding out what you can do would help.

    We can all do something to try to keep active, it is often we become a bit fed up and depressed with ourselves.

    We just have to get up and try to do something.

    I wish you all the best.

  • I am sorry you don't have the support you need. I am glad you felt the freedom to share with us.

    I'll be praying that the more time you spend with your husband the more he will understand.

    I do know that until I became sick I didn't have much compassion for those who were ill. Denial made things easier.

  • Let's hope he has some interests that will leave you space to do what you need. If not, take it! good luck.

  • At risk of sounding crude, your husband is quite ignorant and selfish. When my husband was diagnosed, I went into education mode to learn all I could. I found a support group that is very helpful. Through them I attended several symposiums and went without hubby who was in denial for quite some time. He tries very hard to maintain as much independence as he can. I have to stop myself from jumping in and wait for him to ask for help. It may be the nurse in me but I try very hard to understand what he is going through and help him deal with it. I believe he would be the same if the roles were reversed. I pray that retirement "wakes" him up and he sees just how difficult ADL's are for you and that you don't choose this way of life.

  • the truth is never ignorant nor rude thank u

  • jupiterjane did what I thot was a wonderful post/poem the other day titled "Why do you stay?" Perhaps you need to write something from a different viewpoint.... perhaps "Why don't you go"?

    George

  • i loved that poem i would hate to even begin one not sure if i would be able to pick a staring or stopping point lol thanks George

  • heehee!! Perfect Thumbpick!!!

  • Blackcat, I feel for you. There is nothing worse than when your spouse doesn't believe you have this horrible desease. I am sending you a (((((hug))))) and will pray that things get better for you. Please let us know how things go.

  • i got the hug and i am sending it back tou ((((((((((hug))))))))))

  • I'll b e praying for both of you. God bless you both. Hope time will change his way of thinking.

    Terri

  • blackcat---I think some men have issues dealing with chronic conditions--whether they are the ones with the issue or the potential caregiver of a loved one. For him to say you chose to feel this way you do is ludicrous. Ask him if he thinks people choose to have cancer, be a diabetic, paralyzed after a spinal cord injury, have dementia in their later years.......is he 100% healthy or does he ignore symptoms? He needs to wake-up and smell the coffee or sadly you need to decide if you really need this source of stress in your life-------stress only makes our PD symptoms worse and you deserve to enjoy life, your family and friends for as long as you can....but the bottom line here is YOU and how you want to live...it sounds like you have a good support system behind you and I think you really need to evaluate your situation very carefully before he retires and the negativity is there 24/7. I wish you the best of luck---this is YOUR disease -unfortunately-you had no choice being diagnosed with PD but YOU do have choices of how you want to live, who you need and want around you and whether you'd be better off in the longrun without him-----maybe if he thinks you might leave he'll stop, take notice and get himself educated but either way YOU need to think of YOU, take care of YOU and remember YOU are #1----God bless you and guide you. Sending a bushell of ((((((((((((HUGS)))))))))

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