For those who care for someone with Parkinson's disease
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Topic just a vent I suppose Go to previous topic Go to next topic Go to higher level

By worriedaboutdad On 2010.06.08 20:50
I guess i really don't expect anyone to have a magic answer but sometimes it just makes me feel better to put things into words. So, forgive my ramblings if you will. This horrible disease is winning as I suppose it always eventually does. Since my mother passed almost a year ago, Dad has gone down quickly. Some of you have read my other posts about falling etc and replied which I really appreciate. We have had 3 major falls this week. If I didn't believe in guardian angels before, I do now. Yesterday, Dad decided to go fishing and fell and rolled almost into the pond but was somehow able to grab onto a tree, and call my brother. My brother rescued him and he barely had a scratch. Sometime during the night, he got up to go to the bathroom and fell trying to get back into bed. We got him back in and then had to go help him get out, go to the bathroom etc. He no longer bathes, barely changes clothes, etc. Now you ask....why do you allow him to go fishing? Because it is what he knows and what he needs. Why don't you stay with him? Because he won't have it. Because he refuses to give up his independence. Do I blame him? No. Do I worry? Yes. Does he need to leave the house alone? Probably not, but how am I suppose to tell a grown man with a good mind what he should do? I often feel like people (not here) ask themselves the above questions. It's tough and you can't understand unless you have been there. If I couldn't even get my clothes on and off, I probably wouldn't bathe either. We have arrived at the BAD part (I realize there probably is no GOOD part but you get it). We have arrived and have no itinerary, no plan, no return ticket. We didn't want to get here, but here we are. It's not a good place to be.

By Lotsapies On 2010.06.09 01:40
Worried-It sounds like you have a rough week. I am a newbie to this forum myself as well as caring for someone I love with Parkinsons. I must say I think it is great how you are supporting your Dad in doing things that he loves. That is one of my obstacles-just letting go. There is a fine line between protecting and controlling. I'll try to remember that when those times come around-(if my husband doesn't remind me-hee). Thanks for the perspective. This forum is such a good resource-I am on it reading every day and it helps me tremendously. I am not much help-just wanted to know others are here to listen.

By Emma On 2010.06.09 04:55
Worried, I can feel the anquish in your writing. I'm sorry that you have been having such a difficult time with your dad. If it's any help I know what you are going through, we had sort of a similar experience with my mother. She did not have PD but was mentally ill and a hoarder. She made a lot of bad decisions and was living in a way that was not safe or healthy for her. She didn't bathe very often and only ate white food. She called us on a pretty regular basis for help with stuff she got herself into. It was extremely stressful for all of us, yet she was happy, she liked her weird life. We debated constantly about intervening, getting a guardianship, moving her to assisted living etc. She would have been cleaner and safer (and we would have been saner) but she also would have been miserable. Ultimately we decided to let her live the life she chose, which had the potential to hurt no one but herself, and be happy until some natural consequence occured. I know that people thought we were neglecting our duty to her, but it was quite the opposite. At any rate, at one point she became ill and ended up in the hospital. Long story, but eventually she developed Alzheimers and did go to assisted living. It took a huge toll on all of her children and I often wonder if we did the right thing. It's such a tough call and whichever way you go there will be people who think you were wrong.

The problem with your dad's situation is that not only do you worry about him, but you have to save him when something happens. I know how stressful and exhausting that can be. Eventually you will have to come up with some kind of compromise with him, although I don't know what that would be. He does need to understand that by exercising his right to live as he chooses he is putting the burden of the consequences on you, his children, and that isn't fair.

Please vent whenever you need to. We may not have answers but we can give you cyber hugs. Blessings to you.

By karolinakitty On 2010.06.09 17:45
Worried ... I think we all know where you are coming from ... mine still plays with power tools and i let him know, gently of course, if there is just one drop of blood shed ... that's it.....
On the fishing ... mine loves his too.... we live on a lake and do have a dock... is there any way to put some type of walkway or small dock down at the pond where he can hang out and do his fishing? It couldn't have steps.. but maybe something level so he could get around it a little .... If money is an issue... try any habitat for humanity or goodwill shops around you, they may have some scraps of treated lumber very cheap. I've been lucky to get some at H.for H., or maybe at a flea market you could get an old outside wooden table and break it apart for a platform of some type.
This would keep his freedom and your worry down, also one thing i think your dad might need is some cheap cell phone to keep in his pocket or attached at his belt. This way he can at least call someone if he falls, even they are not far away, there can be help fast......

By LOHENGR1N On 2010.06.09 20:07
On the fishing note, I'd suggest instead of a dock maybe find "His fishing spot" beside a tree or if there aren't any or you can't clear a spot around one, sink a post into the ground. (a post around head height and solid.) I have a fishing buddy We both worked together and both have Parkinson's. He has a lot of dyskinesia (esp. in one leg) while fishing one time we were on a road between two ponds, his leg started kicking and He burst into a fine rendition of a Russian folk dance, hopping across the road headed for the other pond. He looked at me, his mouth agape, eyes bugging out and just before his leg dragged him in he dropped his rod, grabbed a telephone pole to stop. I picked up his fishing rod, got my car picked him up and on the way home his foot stomping upon the cars floorboard uncontrollably, my exhaust separated! Just a short time later the Neurologist (we both have the same one) put a stop to Us going out in my buddy's canoe!?! I wonder why? (wink). Take care, best of luck and fish safe! Hang in there.

By parkinit On 2010.06.18 13:25
My spouse and I struggle with this issue on a daily basis. He has had multiple falls - he has a relatively good mind most of the time. After a near fatal fall, he was told if he had another severe one, it could kill him. This is when he decided it was better not to stumble, but to be able to go on "walks" with the sure-footedness of a powerchair. He enjoys his outings much more now and I know he is safe. It is a win-win situation for both of us. If your doctor is willing to do the paperwork, powerchairs are covered 80% by medicare for those of you who are old enough to receive this benefit. If you have supplemental insurance, it covers the remaining 20%.

Occasionally, he does things like mow the lawn and I ask him, "Why? Why?" when he stumbles around in the back yard. He said, "Because it still makes me feel like I'm a man." I cannot argue with that.

By eusnodlor On 2010.06.26 09:58
Guess we all need to vent and need somewhere to do it. Living with a PWP on a daily basis is very stressful.
We have been married almost 60 years and he is no longer the man knew. He will be 80 in January but it seems sometimes like he is 100. His biggest problem is the amount of saliva he always has. He drools when ever he leans over and frankly this is a big problem for me. It is uncomfortable to be with any friends because he talks so very little. Don't think the family wants to see what is happening and at time I feel so alone. It is as if the life is being sucked out of me as well as him.

Thanks for anyone that has taken the time to listen.

By parkinit On 2010.06.27 22:54
Just a quick note on the saliva. There are drops you can put on the tongue to prevent this. I don't have the name of the drug, but ask your doctor about it. At one time our doctor prescribed a med for this issue.

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