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Topic He has given up....what do I do.... Go to previous topic Go to next topic Go to higher level

By dkleinert On 2009.07.05 09:34
My husband Joe told me last night that he is tired of fighting and putting up with all of the crap of PD....what do I do????? This is the first time he has ever said that to me. He is a man of very few words. I worry because I have to leave him so much because I have to work 2 jobs to just keep the lights on. He is alone a lot. He is in stage 3/4. I told him I was really sorry he had to go thru all of this.....He already takes Abilify for his emotions...but I guess it is really normal to feel as he does - I know I am depressed a lot and never tell him. What do you do when your PD loved one gets down??? Joe is sleeping now - he got up at 9am to go to the bathroom and went back to bed. I have to leave at 10:45am to go to run errands and then go to work and won't be home until 10pm. I worry about him.........

By caregivermary On 2009.07.05 13:35
Well, this is a tough one. I have two neighbors come in to stay with my husb two days each a week for two hours. One plays games with him and the other watches videos and recorded tv programs. They also talk a lot and do some searching on the internet. I live in a neighborhood where I could find retirees interested in doing this and I pay them. They are good company for my husb and it does take his mind off of other things. My husb is 75 and at 61 he was still substitute teaching in elementary schools. His depression at 61 was much milder than it is today. Any friends, relatives or church vounteers to help? Do you think your husb would be open to people coming in to be with him during the day? Does he have any hobbies? Senior Center nearby? My husb has said more than once "when will this all end?" I do whatever I can to distract him.

Maybe Al or Bob will have suggestions for you too.

By LOHENGR1N On 2009.07.05 16:05
dkleinert, Mary is right this is a tough one. First He just might be expressing how He felt at that time. I know I've said the say thing from time to time myself, however it wasn't because I was thinking about doing anything drastic. Just was tired of the battle and crap of having a bad day. Another thing to consider is any over the counter medication recently that could be reacting to His med's. Or He might need a "tweak" in med's.

You know Him, maybe tell Him He scared You by saying that to You and You're worried? But You know better than We wether to use this approach or not. If He's acting like there is a cause for concern call His Doc and run it by them. Mary has some good suggestions about some company to fill in time with. Ok now I'm treading on betraying my "fellow" Parkies here, Please don't let them read this................. You can always trick Him, try to find someone in the neighborhood Elderly or no with a small garden and tell Him they need help weeding once or twice a week for a couple of hours. Ask Him if He would help? This way He feels useful and they feel they're helping You. It could be a win, win situation. Hope it helps. Take care, best of luck and hang in there.

By lurkingforacure On 2009.07.05 17:12
I know completely how you feel, and it is a very scary place to be. My husband has actually told me that I needn't worry about when things get really bad because he "wouldn't put me through that". He is extremely smart and I know he researched early on what can happen in PD, and I was afraid of what he meant so I asked him and he just repeated it...I later learned he had done some internet searching on guns. I was pretty sure I knew what that meant.

After several days (of bawling off and on), I got brave and actually brought it up in as gentle a way as I could. He told me not to judge him, that I had no idea how bad he felt now and would feel even worse later, it was unfair to make his kids watch him slowly decline as he knew he would, and he refused to be a burden. I didn't say anything, because he also made the argument that if it were me, I'd probably have thought about the same thing myself. I thought about that, and it is true: having watched my husband suffer so with PD, I could totally see how someone could just get to the point where they cannot bear it anymore and their hope is gone. The days are insufferable when you are in terrible pain, feel like crap, and the disease has completely robbed you of the ability to feel any joy. How could I argue against that?

I find that my husband does much better if he is working on something that is intellectually stimulating. I have also found that sleep is important, the better sleep he has had, the "happier" he is (kinda like everyone, huh?). Our sleep lately has been really bad, so we are not in a good place, but I am working on trying to get things to as normal as we get to have with PD. I hope this helps, please know that you are not alone.

By bandido1 On 2009.07.05 17:20
dkleinert: I never read what Al hs to say but I always agree with it! We have a way of communicating subliminally! Encouurage him to get involved in somethng he enjoys doing preferably using his brain as well as his body. If he uses a computer get him involved with other patients on the PatientsLikeMe.com website. He will soon determine thre are hundreds of us just like him including riding the same emotional roller coaster he rides. Finally, tell him this patient told him there is no easy way out---if he tries to find out he may have to do it all over again! Bob C

By WitsEnd On 2009.07.06 13:44
Have you tried any of the adult day care centers? They have activities and social programs that may be of some interest. Some churches also have social things for seniors as well. It sounds like his getting out more may help to perk him up. Your time is limited, but maybe there's some alternatives like this that might work.

It sounds what he is doing is grieving the loss of what he is now and what he used to be so perhaps some of the grief techniques will help. If he could do some type of volunteer work where he could feel needed--that would probably help too.

By gilly On 2009.07.06 16:08
My husband has just retired from the ministry for the second time. After his first retirement 10 years ago he was dxed with pd. He was asked about 3 months later to pastor a small church that could not get a pastor. Last May he had to resign because of the pd. He now spends every sunday afternoon in tears because he can't continue his ministry. He too says its is to hard to face what he has become. He is not on the internet but likes ham radio and flight simulator. We get him books from the library. I have bought severa new planes for the flight simulator. He does not walk well enough to do volunteer work. We are encouraging him to do a weekly sermon for an internet site and hope that will keep him busy. I find small repairs that he can do. Today we changed a light switch. His arm shakes to much to do it himself but he stood by our grandson and gave him directions. We try to find things that involve him mentally because he has always been a reader and speaker. Anything that makes him feel useful helps a lot. When we have things to do we always ask his advice or opinion. I want him to feel that he is still needed and contributing to the family. I have one great advantage. I am employed at home and we have family here. I know its much harder for those who have to go out to work. I prayer for help for you both.

By WitsEnd On 2009.07.06 17:44
You know Gilly, it almost sounds like your husband could be on one of those volunteer help lines like they have at the tv stations or for some of the United Way agencies--something they could stick a headset on for and wouldn't involve manual stuff but would let him give advice and support if he can and wants to. To go from being a person a whole congregation of people lean on to a person who has to lean on others has got to be a difficult transition for him. It sounds like you are doing everything you can though. Internet sermon--wow--what a great idea! Someone was talking about setting up a phone forum. God works in mysterious ways--maybe this is His way of giving him a new ministry to help comfort others. We don't always know what God is up to--but he always seems to put us where we are supposed to be (even if we don't always think so at the time.)

I'll be praying for you too.

By dkleinert On 2009.07.08 11:20
MANY THANKS to all of you and your incredible wisdom. God truly uses you! Joe and I both went to the PatientsLikeMe.com website and registered. It is a really helpful site - Joe even posted some he said. Way down on our list of things "to do" was finishing Joe's workshop - we just didn't have the money to buy a workbench (we had to leave his built-in workbench when we moved 5 years ago) and few other things he needed for his smaller workshop. Joe was an incredible wood worker, and with his engineering background, it was a real passion for him. He had given up because of his PD, and was afraid to use his tools, but I told him that there were still things he could do, fix for me, etc, and that I thought if he had HIS own space again - he might like that. He said "Well, if we do this, and you wake up some night and I am gone - you know where I will be - and he smiled". He said he would be out in his shop. After we moved 5 years ago to where we are now, the room that was to be his shop has just became a storage room for things we had not decided what to do with.......so after reading all of your posts, I talked to Joe about putting the shop at the top of the list of things to do and he agreed. Yesterday we made a huge amount of progress, and after his neuro appt today, we will work on it again, and again on my 3rd day off on Thurs. He had the idea to sell an old overhead garage door to come up with the money he needed to buy a used workbench on Craig's List. So last night I took pictures and posted it before I went to bed. This morning early a man called Joe, came to the house and paid Joe $100 for the overhead door......now Joe has the $$ he needs to buy the workbench he saw on Craig's List last night! He is jazzed and so am I. THANK YOU, THANK YOU for all of your great input. Thank you for caring - you are the most incredible people on the planet. I love all of you!!!!

By bandido1 On 2009.07.08 13:00
Great news! Joe has a workshop again--good for his brain & body. I was glad to see he joined us on te PLM website. What user name will he use to post? Tell him he can find me, as is the case here, by searching for bandido1. Bob C

By gilly On 2009.07.08 17:37
That is great news about the workshop. We all need to be useful. being busy keeps us going. Isn't it strange how things work out. Joe sold an old door and got a new perspective on himself. I'm so happy things are working better for you both.
Walter has taken up reading books written by astronauts. We will be keeping the library busy. He also likes to make small things. He has some carved birds and a puppet that he carved. I was sent out this morning to get a hack saw to cut a metal piece to go under a door. I didn't even know the piece was missing. Some days are pretty good. Yesterday was one. I hope Joe stays busy and feels better about himself.
Happy about that good news.
gilly

By LOHENGR1N On 2009.07.08 19:29
gilly, G-d certainly works in wondrous ways! Just think, an old garage door! Perhaps Walter can whip up a sermon for that Internet site about Joe's old garage door! You know even Paul Harveyish? It laid against the wall not taking all that much space....Who would have thought behind it was a wood working shop? ...........and for the rest of the story.....this old garage door did not only go to be hung in a garage, it's story helped a Minister, retired because of Parkinson's Disease, inspired by the story, decided to post a sermon about G-d's use for that door. By so doing the Minister was able with the help of an old garage door reach many more than just the congregation He recently retired from! Who knows? This may be a message for Walter too.

dkleinert, Ask Joe if it's ok if I borrow His story for my next months contribution to the commentary section? Thanks! Take care, best of luck and hang in there.

By dkleinert On 2009.07.08 22:13
LOHENGR1N Yes - a resounding Yes - Joe says he would be honored for you to use his story. God used this website to change his (and my) life for the better......such a shining beacon in what can be a lot of dark cloudy days and nights. This website is such a safe, loving place where we can all share the good and the sometimes not so good and come here knowing we are cheered on, encouraged and loved. THANK you all.

By LOHENGR1N On 2009.07.08 23:45
dkleinert and Joe, thank you for your permission! Now I've really got to try and type worthy of Your resounding ok! Thanks again sincerely Al.


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