For those who care for someone with Parkinson's disease
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By buddy On 2011.11.18 19:46
I came, I saw, I cried. There are other people out here in the wilderness! My father (80) was diagnosed with PD 5 years ago. He most likely has had it longer, but my mother is adamant he was faking for years. She is his primary, and only caretaker. They have 6 children living close by, but refuse any kind of help from us except rides to social events. They will not allow us to go to dr. visits. His meds? We were told "it is none of your business." He has a full disability from the VA, so he does all of his medical stuff there, an hour away. Neither of them should be driving, although their insurance will drop them if either has one more accident. He "freezes", and has fallen a lot. Refuses to use one of the 3 walkers he has. He has always had narcisist tendencies, so we don't know if his behavior has changed much, as he has always been difficult to deal with. His obsession with sex has gotten worse. He "spaces", but my mother says his dr. says its not strokes, just PD. He has been taking anti-depressents for years, but has threatened suicide twice in the last year.
Unfortunately, my parents chose 30 years ago to move away, and travel. We were not close before, and now that they are back in our area, we just have a hard time communicating. Everything is always an emergency, and they are hurt if everyone doesn't drop everything and come to their side--but they won't let us help them to ensure these crisis don't happen. This is not a new thing in our lives.
I apologize for this being so long. My siblings and I are trying to learn all we can about PD because my mother's health is poor also. At this point they do ok alone I guess, but the day is coming when we will have to get social services at the VA to help us--whether my parents like it or not. All of the posters on here seem amazing--so it is with trepidition that I have to add...I will not be sad when he goes....I have had years of therapy to put up a mental wall from this man, and I know the days ahead will be bad.

By rmshea On 2011.11.18 21:27
May I recommend a book called Coping with Your Difficult Older Parent...We are in a situation where I am care mgr. of my mother in law. My husband has never been close to her ever and she is a very 'closed' person. The book addresses the situations like this, where you have no real relationship, and then, wham, you have to be involved in all these intimate details of their lives. You have difficult days ahead, get as much help as you need any way you can get it.

By buddy On 2011.11.19 08:44
Thank you so much for your suggestion. I have given my mother some books on being a caretaker, hoping that at some point she will take to heart the advice about asking for help. She lets him go as much as possible (alone) to things himself so that the VFW staff, friends, nurses and store clerks have to deal with him. He is not allowed at at least one convenience store, and the VFW has informed my sister that someone has to start coming with him to deal with the falls and the anger. I forgot to add in my first post that he has always stuttered, and the PD has made that many times worse. As their adult children we have offered nicely to help, tried "tricking" them, and threatened social services--and that's just to let us HELP!! Their past history shows us that we are on track for a car crash, fall with injury, or hospital visit because a. one of them hasn't taken their meds, or b. he's threatened to kill himself again. We took away the gun we didn't know he had. I know I can't expect people on a forum to solve this for our family--I do appreciate any advice and information, and honestly when I read thru 2 years of posts, I cried until I thought my heart would break. We aren't alone...

By Michele On 2011.11.19 12:26
I know this will be hard for you to hear, but a "crisis" may be the way to get help. An old chinese saying - In crisis there is opportunity. If the crisis warrants calling 911 and an ER visit and possible hospitalizaiton, the social workers at the hospital can advise on the feasibility of returning him/her to their home or set up home care. If your mother is not up to providing adequate care then you can talk to the hospital staff about this. You father should not be discharged to a home where he is not safe. Good luck. My husband was responsible for overseeing his mother's care when she had a stroke. She was a nasty woman who emotionally abused all her children. My poor husband suffered from severe stress and anxiety in dealing with her needs. Take care of yourself.

By buddy On 2011.11.19 13:08
Thank you so much for your reply. In the past we just let them be, because it was just not worth the fight. After the last "crisis" in an emergency room 4 hours away, my mother lied about her medical history to doctors in front of us. This was in June and they are still not talking to the sister who called her on it--they are a little more wary of that stuff with me--they know as the oldest I will bear the brunt of their future caretaking.
We never knew a thing about PD except for Michael J Fox's story. If I had known what I know now, I would have started learning more much earlier.

By lurkingforacure On 2011.11.19 13:25
I hear you but will add that sometimes life surprises you. My mom and I had a pretty rough break decades ago, but then my brother died and we came together again. It was hard, as she was pretty controlling my whole life which made my trying to help her difficult, but I let her tell me what she wanted me to do and that worked for a long time. I just had to keep my boundaries up which oddly, after I had married and had kids, she respected much more.

When she fell and went into the hospital, I was shocked at how much I could take from her. She got very sick very fast and we lost her barely two months later, but that time was very, very hard. I was so surprised at how compassionate I was given our history growing up. I watched myself help her in so many ways and under circumstances I never would have imagined, all the while feeling incredibly sorry for her. My depth of empathy simply had no bottom. This is not my nature, or at least, wasn't what I thought my nature was. Apparently, we are able to do so much more than we ever think we can when put in certain situations. It was a blessing I could take it all, hard though it was, for both her and for me.

I realized also that when one is truly sick, you cannot think of them as the same person they were, they simply are not. So many here have said "it's the disease, not the person", and they are right. I hope you have a few fond memories of your dad that you can hold onto as you continue this journey, they will give you strength. And don't feel guilty for wanting their suffering to end, I don't really think we would be human if we wished otherwise.

By LOHENGR1N On 2011.11.19 13:37
buddy, Welcome to the forum. I don't know what to add here except perhaps when the next crisis ends in emergency room or even a visit from the police and/or ambulance personal. Delusional thinking and suicidal thoughts might be a side effect of Your Fathers medicine, mention it when there. That way because they aren't telling you what drugs he takes the medical staff will be alerted and then check on the side effects. This could avert more trouble down the line. Stay with Us we're all glad to help anyway we are able. Keep posting. Take care, best of luck and hang in there.

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