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Topic Supporting him through MD appts Go to previous topic Go to next topic Go to higher level

By ByHisSide On 2010.11.05 22:54
I have been with my guy for 1 1/2 years. He has Young Onset Parkinson's, diagnosed ten years ago. Obviously when I met him, I knew he had PD and falling in love with him included my acceptance and increasing understanding of the disease.

He rarely goes to the doctor because he has been in pretty good balance with his mixture of meds. However, lately he has been thinking about switching back to a levadopa type med and when he called his doctor, the doc said he wouldn't switch him around at all unless he came in for an office visit (which seems entirely reasonable to me!)

Switching meds will necessitate (as I am sure you all know) tapering down and stepping up on the new med. The last time he switched around, I was out of town and he crashed big time all alone. He and I live together now, and we have discussed this and I insist that I need to be by his side while he makes changes in his meds.

He made the dr appt and then told me that he didn't think I needed to go with him. I was insistent that I needed to be present at the med appointment because I am his primary support, his caregiver when necessary...but he was adamant. I have to say, this situation has been the most serious breach in our relationship we have had.

Am I wrong in insisting that I be part of his doctor appointments? He has asked me repeatedly to marry him...and I am firmly committed (and, I think, pretty well informed on YOPD) and truth is, when I chose to be with him, I chose to be with his PD as well.

He now says he has cancelled his appointment. We are at a standstill and not really discussing it. I am so saddened by the distance this has created, but I am not willing to back down...nor is he.

Any thoughts from those of you who are so much more experienced...wiser...and certainly more objective than I am?

By karolinakitty On 2010.11.05 23:11
ByHisSide... Welcome to the forum.... when you came into this relationship, he had been doing everything on his own. Sometimes we have to look at things from a neutral perspective. While i agree that you should be apart of his appointments, he has been doing this on his own and may feel his privacy is being invaded. Not that you are an invasion, but he may not be ready to share the intimate details of a docs visit. There are questions, like regarding perhaps an impotence factor that men don't often want to share in front of women, as well as incontinence, another issue with this disease.
My guy and i are not "legally" married, but are spiritually married(long story), we have only been together 6 years and he has been diagnosed over 2 years, almost 3. We had discussed even before visiting the doc my participation and my right to know what is up. I had to sign certain privacy papers as well as he did. He had to give up his right to privacy in order for me to get in direct contact with his nurse/doc and for them to be able to talk to me. This involves giving up and giving in.
You've only been together 1.5 years and perhaps he doesn't feel just so about giving up these rights. It's not that he doesn't love you or care that you know. There are many married folks and married for 25 or more years, whose husbands or wives don't want them to know everything the doc says.
Mostly because my guy has dementia, i feel is the reason he wanted me to be so involved. If he missed something or forgot something or messed up the meds he could be in real trouble. Your guy seems like he is on top of things and can function pretty well.
You will find as you get farther into this disease with him the more you NEED to take over. For now, i would let him do his thing with the doc alone and in time I'm sure he will invite you to go.

By ByHisSide On 2010.11.05 23:27
Thanks Karolina. I appreciate your thoughtful, empathetic response.

By LOHENGR1N On 2010.11.06 01:09
ByHisSide, Of course the Doctor won't change His med's without an appointment (several probably) He will want to monitor his reactions to the medicine and tolerance as to dosage. Levadopa along with most all of Anti-Parkinson's Drugs are mind altering. Thus they need to be monitored when adjusting. This is one of the things that throughout my battle concerns me most. I live alone and if I start to hallucinate from medication........well how would I know? Scary to think about!

Something for Your Guy to think about too. A lot can happen in just seconds in this life and your going into the exam with him might give you a hint or at least it gives two rational minds hearing things to look for when the switching is happening. It is common for a tic of some sort or the other to occur while adjusting to a med. This can be unsettling and cause one to second guess a change, with a backup of sorts (another person) knowing it's normal then we might be more willing to wait before just abandoning the try. As KK said He's been handling it on his own for a long time, he may feel an invasion of privacy. But he may also feel insecure. Meaning the more He let's you in, the more you really begin to see and experience the effects of Parkinson's on Him, well.....fears of your leaving to him might seem greater. I know and you know, you can say you're in it till the end, but between you and I and others reading this We patients all have a nagging doubt or fear it ain't so. (There are only so many Sisyphus around) Unfortunately all you can do is stay by Us as we grapple with this problem.

It needs to be discussed, it's a very hard situation to be in from both sides. I don't know if this will help but, I'd been going to the Neurologist for twenty years by myself, I do have some help for ten years I've had a personal care assistant twenty hours a week, They would drive me to the Doctors and sit in the waiting room while I went in. Then I hired someone and when I was called in She got up and started in the room with me!?!?! I almost said where the Hades do you think you're going? But I kept my mouth shut. Why? Because it was part of her job to help and aid me, so she should know a bit about this. To make a long story short, whenever My Neurologist wanted to or wants to discuss with me a problem or perform a test He just asks Her to leave. She does and nothing is said if I don't inform her. Maybe you can strike a bargain both can agree, you can come in and if He or the Doctor don't feel you should be privy to what's going to be discussed then you can step out no harm no foul? I know you want the best for Your Guy and want to be included. But this might just have to do for now and it is a different story when you become Husband and Wife? This might be a way to meet in between and satisfy both for now you're included and He's still got Doctor Patient privilege or still a modicum of control dealing with the Disease and treatment? I do hope I've helped or at least got you thinking on the track of a compromise you both can live with. Take care, best of luck and hang in there.

By sarakayhatch On 2010.11.06 09:29
My husband has been diagnosed with PD a month ago. We will go together to see his neurologist and talk about med options. He is 74. I am 69 and we have been married for 39 years.
My question to you is. Why won't you marry him? Perhaps this is the problem. He wants his wife to accompany him on this journey rather than a friend, no matter how close you are.
If you are that committed what is your problem with the idea of marriage?
It takes a great step in courage to say,
"This is my mate. I want it legal. I want all of the world to know that we are married and will be together even when it may get tough." Maybe this is what he needs to hear for him to let you in.

By caregivermary On 2010.11.06 10:03

You are not wrong in requesting to be with him during the Dr. visits. If you are in this for the long haul, then you need to know what is going on. I suggest you open discussion with him again and use some of suggestions you've seen here to convince him that it is in his best interest to have you involved. This is what a partnership is all about. Keep calm and be reasonable through the conversation. Stress is not good for him or you.

By MJ-Camano On 2010.11.06 12:16
I would suggest perhaps both of you visiting the doctor's office and you be at the appointment only for the discussion of changing the medications. That way the doctor can answer your questions regarding the medicine changes and your loved one can have his privacy with the appointment.

By karolinakitty On 2010.11.06 15:28
to sarahkayhatch...
I hope that our newcomer is not offended by your comments as to why she isn't married. In life there are circumstances sometimes beyond our control as to why a person doesn't get married. I can affirm this through my own circumstances. I won't go into details but certain problems can exist in a separation and divorce to prevent one from obtaining legally that piece of paper that says you are not with one so you can marry another. Only by the grace of God and a wonderful pastor am i able to be "spiritually married" to my guy.
There is no one on this earth that i love more or that he loves more. If the commitment is there the relationship can go on for many long years without a piece of paper to say so.
This IS my mate, my soul mate, the mate that God intended for me to have and if i could get past the legalities i would have done it 6 years ago.
While we may have to render to Caesar what is Caesar's, Caesar's law does not overcome love, and love is the greatest of all.

By ByHisSide On 2010.11.06 16:21
Thank you to all of you--I am deeply touched and heartened by your range of responses. I am absolutely not offended by anything said because I specfiically wrote here in need of opinions. Thanks for offering them.

We will continue to work this through--I am especially interested in the variety of compromise options that you all have suggested. Before this discussion, I just couldn't seem to think of any middle ground! thank you so much for bringing me back to balance.

and FYI, while I am a newcomer to posting, I have been reading this board for the entire time I've been with My Guy, and have found it highly helpful time and time again.

Again, much thanks and keep the thoughts coming!

By Emma On 2010.11.06 16:50
ByHisSide, Welcome to the board, we're happy to have you as part of our forum family. I think that you have been given some good suggestions for ways to compromise in this situation and believe me, living together with PD as a patient and caregiver requires a lot of compromise from both parties if you're going to survive. Might as well start now. I do think that if you are involved in his care it's going to be important for you to go along to the appointments, and it will become more important as time goes on. On the other hand, who knows his reasons for not wanting you to join him at this point? Maybe as LOHENGRIN said he wants to maintain control of his disease. Maybe there is something that the doctor has told him that he's not ready for you to hear. Maybe he's just bull headed, it could be anything and it's his disease, his choice. However, at some point your team approach (which is necessary) has to include the doctor's visits. I still find myself negotiating things with my husband that come up regarding his PD after all these years. Often I think that it is, in fact, wanting to maintain control and independence. There is so much loss and letting go that the person with PD has to endure that I think they, understandably, sometimes grasp at something that is still theirs to own. Good luck to you and keep posting!

By shakydog On 2010.11.06 23:19
Hi and welcome. I'm lost when I go to an appointment without mylove. She remembers all the questions I was going to ask and writes down the instructions from the doctor. That's what "yourlove" needs to understand. The commitment that you both have goes beyond the day to day living arrangement and includes the long term goal of a fruitful life together.

And whether it is 50 years or 50 weeks, your commitment is a special bond.

It doesn't matter if there is a $20 license from the county or not

By Michele On 2010.11.07 11:17
This has been a very touching and enlightening post for me to read. I do not have anything to add except to say I am inspired by the love between PWPs and caregivers. I have a special bond with my husband and always felt that he is my soulmate. I couldn't imagine doing it any other way than to care for him in our home. He is in late stages and needs assistance with everything. he cannot be left alone for more than a short period of time. I'll keep on doing this as long as I possibly can. I cannot tell you how many women have told me that they could not do what I am doing. It is so heartwarming to know that there are so many of us and that we have this forum to help and support each other. No one else knows what we experience.

By marie On 2010.11.08 10:34 [Edit]
Hi Michele, Your posting was wonderful. Other than my husband not being in late stage parkinson's, (he's in 4) everything else is just what I would like to say. Thank you sooo much. We're very much alike

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